he changes her formula to something that won't cause diarrhea that's going to run all over her wound dressing. These are the words that I spoke to two nurses and a nurse practitioner. They all agreed - the formula Emma has been on is doing something nasty to her intestines and causing diaper rash to boot. Any of you with kids knows that when babies have diarrhea, it goes all over their backs. Well, we just can't afford that with an open wound, even if it does have a dressing on it. The NICU doctor we've had the last couple of weeks told the new doctor that Emma absolutely, must, without a doubt, go to pure Enfamil (which is causing the problem) today. Dawn, Dava, the nurse practitioner, and I pitched a fit about it. The nurse practitioner really stuck her neck out for us and made the new doctor mad, but she got the orders for the formula changed. The doctor threw his hands up and yelled, "Fine!" You know what, it IS fine, because we can figure the formula thing out later. In the meantime, we have to get her back healed up, and poop oozing into it isn't helping anything. The formula she's going on is called Neocate, for those of you who have been asking. Apparently it's pretty expensive, but we'll just have to get over it until we can get everything else all nice and healed up.
So that was the major crisis of the day. A side issue (which would probably be major on any other day) is that Emma was upset all through the night until 5:00 am. The wonderful nurse I blogged about last night, Dana, was so torn up that Emma was upset. Dana rocked her almost all night, and she felt so bad that Emma had a bad night. Emma was upset for a long time this afternoon and was essentially awake from noon to 6 pm. Now she's sleeping peacefully...finally. She's somewhat sleeping on the incline, but there's a big speed bump at the bottom to keep her from going ALL the way to the other side of the crib. But now the problem is that she still slides down...and curls up at the bottom against the speed bump.
Emma's back wound looks pretty good; I couldn't tell a huge improvement over yesterday. It had been days since my mother-in-law, Mary Jane, saw it, and she was amazed today - it's nice to have someone with a little different perspective than mine. MJ also felt like Emma's soft spot was even softer (which is good), but I've lost my perspective on it, too, because I feel it almost every hour to make sure it's not caving in now that we're making an effort to get her upright.
Dr. Troup came by when I was at lunch today, and Dawn wasn't in the room when he came by, either. Luckily, Dawn caught him right before he left as he was writing his orders for Emma. We are still supposed to keep her elevated (or try, at least - considering she slides right down any incline we put her on), and he's not THAT concerned about the fluid draining, but he just wants to speed up the process a bit since there was so much fluid before the surgery. Apparently he's a little disappointed, but not worried. Phew, relief.
My dad and Russell's dad can now come see Emma! Well, they can on Sunday. The rule since October has been that only the parents plus 2 support people can see her. Even then, only 2 people can be in her room at a time. But now that the flu/cold season is over, they're going back to the old rules, and 2 more support people are allowed back. I'm pretty sure my dad will be here at 7:30 Sunday morning as soon as the shift change is over. Seriously, 7:30. AM. Oh, and for all of you who want to hold her sometime in the next year or so, too bad. My dad will be. And he's a big man to contend with.
Tomorrow morning Russell, Mary Jane, and I are taking infant CPR. My mom took it last night. Apparently, a lot of NICU babies' parents are required to take it before the babies go home. Let's just say that some of the babies are here in the NICU due to lack of care issues. And the healthy general public doesn't just sign up for infant CPR...so some of the people in this class are the cream of the crop. I can't wait to hear some of the questions. Good example from when my mom took it: the most common thing that toddlers choke on is hot dogs. Cut up, sliced up hot dogs. One genius asked, "Well what if you take the skin off?" Ok, what if you take the skin off? It's still a slippery piece of food that a child can choke on...it just doesn't have skin now. Hopefully those types of questions will keep me awake for 3 hours on a Saturday morning after getting very little sleep for months.
Oh my gosh, I almost forgot something huge. If you're sitting down with your legs fairly free, concentrate on something. When you walk, you mainly use your quad muscles in your legs. So when you swing your legs back and forth at the knee, even though the lower part of your legs are moving, that movement is controlled by your quads. Now straighten your legs and pull them straight up...you DO use your quads for some of this movement but mainly your hip flexors. So basically, Emma has to be able to move her legs from the knees down in order to have a shot at walking. We know she can use her hip flexors but weren't sure about the quads. Today she was on her side and moving her straight legs up and down, so I held her hip stationary and bent her knee to see if she would use a quad muscle to straighten her leg from the knee down, while keeping the hip flexor still...SHE DID IT! And then she got mad at me for holding her down (she HATES to be held in place on any part of her body). She does have movement from her quads! She may still have to walk with some sort of assistance like braces or crutches, and once she gets older, she may decide on her own that it's easier to be in a wheelchair...but at least we know that God has blessed her with some movement. Hallelujah! We do serve a loving and caring God. There are some other things related to her bowels and bladder that I won't go into here that are already better than a lot of kids with spina bifida. Praise Him!
Friday, April 30, 2010
Thursday, April 29, 2010
Why?
Today was a very difficult day - lots of complications that were all connected to each other. One thing made another thing worse which created another issue which caused another difficulty and so on and so on. We learned a lot about avoiding some problems in the future hopefully, but it was very overwhelming. Thank you for all the prayers you all have been sending up. My precious husband left work early to help me, which was totally unexpected and a total blessing. The NICU is almost at maximum capacity, and Dava (our nurse for the day) had 4 babies, 2 of whom were going home. This sounds good, but it's VERY time-consuming to discharge a baby, much less 2. Which means she didn't really have time to help me with anything. Russell and I did the dressing change today without nurse supervision - bravo, I must say!
A few weeks ago, I blogged that although I don't usually ask God why, I have been doing so about Emma. I've thought about this a lot. In the last few weeks, I may have come up with a few answers. One is education - for doctors, nurses, residents. Our nurse last Sunday told us that our daughter's wound is the talk of all the nurses, even ones who have never even had her before. Another nurse verified that yesterday, and apparently they're all so happy that the wound care team got involved. Some of the night nurses have come to see Emma's wound when her personal nurse changes the dressing. Lots of nurses and doctors have learned about the Press 'N Seal trick for her skin. Dr. Troup himself has a much greater appreciation for the wound care team and what they can do. So I really think Emma has opened people's eyes to some better care possibilities. That's generally how medicine progresses - SOMEBODY has to be the guinea pig. So now my question is...why MY daughter? Still don't have an answer to that one...and probably won't. The infectious disease doctors, NICU doctors, and wound care team are very pleased that we've been taking daily pictures of the wound in order to keep track of its progress. They've all said that that might be a good idea for some other patients, too.
Emma's fluid still isn't draining off her brain like the doctor hoped. The result is that we're feeding her upright and on her back, which is really hard because (1) her head is big and rolls around a lot and (2) she WANTS to roll her head around a lot because this is a whole new experience. Burping her on my shoulder is hard, too, because of the size of her head. The other result of slow draining is having her sleep on an incline in the bed. This is hard because she is a very mobile sleeper and just slides right on down that incline. We brought a sleep positioner from home, and we'll just see how that works. The incline thing is going to be trial and error, I believe. Another nurse here who is PHENOMENAL (she's come to our rescue one time in the past) brought us a big mattress-sized wedge to go under her bed, too. Surely one of those options will work. Here's Emma earlier in the day in the perfect position at the top of her incline:
Here she is an hour and a half later:
We've got MAJOR problems with Emma's food...it's causing all sorts of digestive problems. We just can't get it right, and you have to give her digestive system a certain amount of time to get used to a particular formula before you change it again. Luckily, our pediatrician happened to come in today to do a circumcision on another NICU baby (thank goodness we don't have to deal with THAT), and she has much more formula knowledge than NICU doctors and nurses. There's a slight chance Emma could have a milk protein allergy, but it's just too soon to tell because there are other factors to consider, like antibiotics (which will end on Saturday) and eating and digesting on her tummy. The allergy is unlikely because we'd probably be seeing much more extreme symptoms than we're seeing now. All these poopoo problems are causing diaper rash, too.
When we got back to the hospital tonight, Supernurse Dana (not to be confused with Dava) was rocking Emma. We thought she was rocking her because Emma was a little fussy. Nope. Just rocking her because she loves her. And when we were ready to feed Emma, Dana didn't want to give her up. After Emma's surgery on Tuesday, Dana came in Tuesday night (even though she wasn't taking care of Emma that night) and came straight to check on her before she did anything else. I'll say it again about the nurses - we have kissed a lot of frogs and have finally gotten some princes!
Emma weighs 10 pounds, 6 ounces. Check out the fat wrist - we really shouldn't put rubber bands on our baby :)
A few weeks ago, I blogged that although I don't usually ask God why, I have been doing so about Emma. I've thought about this a lot. In the last few weeks, I may have come up with a few answers. One is education - for doctors, nurses, residents. Our nurse last Sunday told us that our daughter's wound is the talk of all the nurses, even ones who have never even had her before. Another nurse verified that yesterday, and apparently they're all so happy that the wound care team got involved. Some of the night nurses have come to see Emma's wound when her personal nurse changes the dressing. Lots of nurses and doctors have learned about the Press 'N Seal trick for her skin. Dr. Troup himself has a much greater appreciation for the wound care team and what they can do. So I really think Emma has opened people's eyes to some better care possibilities. That's generally how medicine progresses - SOMEBODY has to be the guinea pig. So now my question is...why MY daughter? Still don't have an answer to that one...and probably won't. The infectious disease doctors, NICU doctors, and wound care team are very pleased that we've been taking daily pictures of the wound in order to keep track of its progress. They've all said that that might be a good idea for some other patients, too.
Emma's fluid still isn't draining off her brain like the doctor hoped. The result is that we're feeding her upright and on her back, which is really hard because (1) her head is big and rolls around a lot and (2) she WANTS to roll her head around a lot because this is a whole new experience. Burping her on my shoulder is hard, too, because of the size of her head. The other result of slow draining is having her sleep on an incline in the bed. This is hard because she is a very mobile sleeper and just slides right on down that incline. We brought a sleep positioner from home, and we'll just see how that works. The incline thing is going to be trial and error, I believe. Another nurse here who is PHENOMENAL (she's come to our rescue one time in the past) brought us a big mattress-sized wedge to go under her bed, too. Surely one of those options will work. Here's Emma earlier in the day in the perfect position at the top of her incline:
Here she is an hour and a half later:
We've got MAJOR problems with Emma's food...it's causing all sorts of digestive problems. We just can't get it right, and you have to give her digestive system a certain amount of time to get used to a particular formula before you change it again. Luckily, our pediatrician happened to come in today to do a circumcision on another NICU baby (thank goodness we don't have to deal with THAT), and she has much more formula knowledge than NICU doctors and nurses. There's a slight chance Emma could have a milk protein allergy, but it's just too soon to tell because there are other factors to consider, like antibiotics (which will end on Saturday) and eating and digesting on her tummy. The allergy is unlikely because we'd probably be seeing much more extreme symptoms than we're seeing now. All these poopoo problems are causing diaper rash, too.
When we got back to the hospital tonight, Supernurse Dana (not to be confused with Dava) was rocking Emma. We thought she was rocking her because Emma was a little fussy. Nope. Just rocking her because she loves her. And when we were ready to feed Emma, Dana didn't want to give her up. After Emma's surgery on Tuesday, Dana came in Tuesday night (even though she wasn't taking care of Emma that night) and came straight to check on her before she did anything else. I'll say it again about the nurses - we have kissed a lot of frogs and have finally gotten some princes!
Emma weighs 10 pounds, 6 ounces. Check out the fat wrist - we really shouldn't put rubber bands on our baby :)
Wednesday, April 28, 2010
Such a happy baby!
This could all be coincidence or purely in our heads, but I swear the shunt surgery has made Emma the happy baby that she was once was. About 3 weeks ago, it became more difficult to keep her happy when she was awake. It was exhausting. We're hoping it's because the fluid on her brain was too high. Now she seems much happier, even though Dr. Troup isn't thrilled with the amount of fluid that has drained from her head after 24 hours. He was expecting more fluid to have drained, and he said she may have to be raised on an incline in another day or two if the amount of fluid hasn't significantly gone down. You'd think there'd be a really scientific way of determining how much spinal fluid is the right amount...nope, just pushing on her soft spot.
My wonderful mother let me have the afternoon off so that I could run a bunch of errands. I didn't get to change Emma's wound dressing like I'm supposed to, but I will tomorrow. In the meantime, though, the wound nurse came to look at it, and she, my mom, and Dawn all thought it looked amazing. My mom took a picture of it, and from what I can tell, it does look a little better than yesterday. We got a little information from the wound care nurse about caring for Emma's wound at home, but nothing is set in stone because a lot can change between now and when Emma goes home in approximately a week.
So about bringing her home - our hospital social worker is getting the wheels turning on getting home health care for wound and shunt care, as well as getting us in-home physical therapy until we can start taking Emma out of the house for therapy. The social worker is also going to help us figure out how to get Emma home in the car - her car seat may not be feasible for a few more weeks.
To be the day after surgery, it was a pretty low-key day for Emma. She gets Tylenol every 6 hours for pain management, and it seems to be working. Russell and I are exhausted, so we're going to try to get home at a decent hour and get some sleep!
My wonderful mother let me have the afternoon off so that I could run a bunch of errands. I didn't get to change Emma's wound dressing like I'm supposed to, but I will tomorrow. In the meantime, though, the wound nurse came to look at it, and she, my mom, and Dawn all thought it looked amazing. My mom took a picture of it, and from what I can tell, it does look a little better than yesterday. We got a little information from the wound care nurse about caring for Emma's wound at home, but nothing is set in stone because a lot can change between now and when Emma goes home in approximately a week.
So about bringing her home - our hospital social worker is getting the wheels turning on getting home health care for wound and shunt care, as well as getting us in-home physical therapy until we can start taking Emma out of the house for therapy. The social worker is also going to help us figure out how to get Emma home in the car - her car seat may not be feasible for a few more weeks.
To be the day after surgery, it was a pretty low-key day for Emma. She gets Tylenol every 6 hours for pain management, and it seems to be working. Russell and I are exhausted, so we're going to try to get home at a decent hour and get some sleep!
Tuesday, April 27, 2010
We almost got kicked out of the hospital...
by our nurse. Not because we were misbehaving but because we saw Judie at 11:00 last night, 6:30 this morning, and again tonight. She informed us that she was going to kick us out if we didn't go home and rest. So we left at 9:30. Wonderful nurse #2, Dava (another one of our primaries): Emma came back from surgery on a temporary ventilator and went to NICU 1 because of that. Dava requested that she be immediately be moved back to NICU 2, even though her supervisor was questioning whether Dava would be willing to care for a post-op baby in addition to two others. Dava INSISTED that she take care of Emma. Wonderful nurse #3, Dawn (our PRIMARY primary): Dawn called today to check on Emma because she couldn't wait until tomorrow to see her. She had been thinking about and praying for Emma all day and wanted every last detail about today. She already had a mental to-do list of things to take care of and check on for Emma tomorrow. We went through a lot of bad nursing experiences, but oh, how God has blessed us with some great ones, too.
So let me back up to this morning. I woke up at 5:00 am, and the first thing that popped into my head was, God, please comfort our daughter - make her happy, comfortable, and not hungry. Emma's last feeding was at 11:30 last night, so we were certain she'd start screaming during the early morning hours and not stop until she went under for her shunt surgery. When we got to the hospital at 6:30, we received immediate proof that God answers prayers - our daughter (who has a PERFECT internal clock set to tell her to scream for food every four hours, on the dot) was having a pretty decent morning and continued in her relatively good mood until we got her on the transport bed to go to the OR. At that point, she was in a great mood because she was happy to be moving and seeing a change of scenery as we navigated the halls. I had a hard time keeping it together on the way down to the OR and back up again. Once we got back to her room, I had a little breakdown with Russell. I just needed to get it out of my system. A couple hours later, Dr. Troup came to see us and give us good news about her surgery.
Dr. Troup had a pretty big audience in the waiting room - we have some incredible family and friends who waited with us this morning. Emma's shunt went in just fine, and then he cleaned up her back wound a little. I now understand what it means to clean it up, but if you had shown me before and after pictures of this wound 3 months ago, I would have thought it was worse now. There was a bunch of...stuff, for lack of a better word, that had to come out. The dressing technique and medicine being used was slowly doing that, but Dr. Troup got impatient and just physically cut it all out himself today. Fine by us. Now, the bottom of her wound is a REALLY deep hole, but the tissue in there is supposedly healthy tissue. The wound nurse is coming tomorrow to take a look at it, too. The top of her wound still looks pretty great, and we could see a great improvement from yesterday to today.
I asked Dr. Troup some questions and didn't get any very specific answers. He speaks in generalities...but I already knew this. For example, I asked, "When will we see a visible difference in the size of her head?" His answer was, "I don't want the fluid in her head to completely shrink down so that there's space in between the plates in her head. I really want her to grow into her head." Ok, so I get that...still not an answer to the "when" part of my question. We asked when she'd be lying on her side, her tummy, her back, etc...still no great answers. The nurses aren't even sure, either. Dava DID find some notes that said Emma could be on her back, but this won't be for really long periods of time (only 30 minutes at a time, I would guess) because the wound is still so delicate. This is something I'd like to get the wound care nurse's input on as well. One thing we do know for sure is that Emma has to stay flat, no matter what body surface she's lying on...ears, shoulders, and hips have to stay level for 2 weeks.
2 weeks...that leads me to my next point. When we got back into Emma's room after her surgery, Dava informed me that Dr. Troup ordered me and Russell to do the dressing changes. Let's get one thing straight right now: we are NOT going back to the hospital for the 4 am dressing change. We'll gladly do the 4 pm dressing change. This is significant because Dr. Troup wants us to go home soon! Russell changed the dressing today:
Side notes about this picture: (1) Emma's hair is not naturally red/orange - that's Betadine still in it; (2) the incision on her tummy is from the shunt surgery. Sorry if it grosses anybody out. Emma won't be in the hospital for 2 more weeks, but she might be going home this weekend or early next week. But this is still a wait and see situation.
Russell and I have different feelings about today's surgery. Russell feels positive, upbeat, and accomplished. I feel more anxious and scared than I did before because now we have more things to be concerned about, to monitor, and to be careful with. Plus, I thought changing a diaper on her tummy was hard - that's NOTHING compared to changing it on her side. What. A. Nightmare. I know this is a depressing and pessimistic attitude to have, but caring for Emma just got harder and more complicated. You just can't argue with that. We now have to be on the lookout for shunt AND wound complications. At home, outside of the relatively sterile (and visitor-limited) environment of the hospital. I, of course, will be praying for God to change my attitude, as I offer these feelings to Him...but it would REALLY make me happy for my attitude to change because caring for Emma gets easier with the blessing of quick and easy healing!
Emma was so happy on her side today and tonight that we didn't even get her up for her nightly weigh-in. She weighed 10 pounds, 2 ounces last night...we're not concerned about her gaining weight, so missing one weigh-in isn't hurting anybody. In fact, there was a chance that it could take a full day before she could start eating after her surgery, depending on how her digestive system was responding. One day? Make that 2 hours. She ate a full bottle 2 hours after her surgery. That's my little piggy! Here's a picture of her right after she got back from surgery - happy as can be and loving life on her side. It's hard to tell that she's actually happy because her eyes are HUGE at the thrill of a different perspective and being able to move an arm freely.
What a day, what a day. These next few days are going to be big ones as well - lots of position changes that we've been waiting on for 6 weeks, her PICC line has to come out before the antibiotics are done (long story), a new perspective on wound care, waiting to see if she's less fussy with a decrease in pressure on her brain. Stay tuned...
So let me back up to this morning. I woke up at 5:00 am, and the first thing that popped into my head was, God, please comfort our daughter - make her happy, comfortable, and not hungry. Emma's last feeding was at 11:30 last night, so we were certain she'd start screaming during the early morning hours and not stop until she went under for her shunt surgery. When we got to the hospital at 6:30, we received immediate proof that God answers prayers - our daughter (who has a PERFECT internal clock set to tell her to scream for food every four hours, on the dot) was having a pretty decent morning and continued in her relatively good mood until we got her on the transport bed to go to the OR. At that point, she was in a great mood because she was happy to be moving and seeing a change of scenery as we navigated the halls. I had a hard time keeping it together on the way down to the OR and back up again. Once we got back to her room, I had a little breakdown with Russell. I just needed to get it out of my system. A couple hours later, Dr. Troup came to see us and give us good news about her surgery.
Dr. Troup had a pretty big audience in the waiting room - we have some incredible family and friends who waited with us this morning. Emma's shunt went in just fine, and then he cleaned up her back wound a little. I now understand what it means to clean it up, but if you had shown me before and after pictures of this wound 3 months ago, I would have thought it was worse now. There was a bunch of...stuff, for lack of a better word, that had to come out. The dressing technique and medicine being used was slowly doing that, but Dr. Troup got impatient and just physically cut it all out himself today. Fine by us. Now, the bottom of her wound is a REALLY deep hole, but the tissue in there is supposedly healthy tissue. The wound nurse is coming tomorrow to take a look at it, too. The top of her wound still looks pretty great, and we could see a great improvement from yesterday to today.
I asked Dr. Troup some questions and didn't get any very specific answers. He speaks in generalities...but I already knew this. For example, I asked, "When will we see a visible difference in the size of her head?" His answer was, "I don't want the fluid in her head to completely shrink down so that there's space in between the plates in her head. I really want her to grow into her head." Ok, so I get that...still not an answer to the "when" part of my question. We asked when she'd be lying on her side, her tummy, her back, etc...still no great answers. The nurses aren't even sure, either. Dava DID find some notes that said Emma could be on her back, but this won't be for really long periods of time (only 30 minutes at a time, I would guess) because the wound is still so delicate. This is something I'd like to get the wound care nurse's input on as well. One thing we do know for sure is that Emma has to stay flat, no matter what body surface she's lying on...ears, shoulders, and hips have to stay level for 2 weeks.
2 weeks...that leads me to my next point. When we got back into Emma's room after her surgery, Dava informed me that Dr. Troup ordered me and Russell to do the dressing changes. Let's get one thing straight right now: we are NOT going back to the hospital for the 4 am dressing change. We'll gladly do the 4 pm dressing change. This is significant because Dr. Troup wants us to go home soon! Russell changed the dressing today:
Side notes about this picture: (1) Emma's hair is not naturally red/orange - that's Betadine still in it; (2) the incision on her tummy is from the shunt surgery. Sorry if it grosses anybody out. Emma won't be in the hospital for 2 more weeks, but she might be going home this weekend or early next week. But this is still a wait and see situation.
Russell and I have different feelings about today's surgery. Russell feels positive, upbeat, and accomplished. I feel more anxious and scared than I did before because now we have more things to be concerned about, to monitor, and to be careful with. Plus, I thought changing a diaper on her tummy was hard - that's NOTHING compared to changing it on her side. What. A. Nightmare. I know this is a depressing and pessimistic attitude to have, but caring for Emma just got harder and more complicated. You just can't argue with that. We now have to be on the lookout for shunt AND wound complications. At home, outside of the relatively sterile (and visitor-limited) environment of the hospital. I, of course, will be praying for God to change my attitude, as I offer these feelings to Him...but it would REALLY make me happy for my attitude to change because caring for Emma gets easier with the blessing of quick and easy healing!
Emma was so happy on her side today and tonight that we didn't even get her up for her nightly weigh-in. She weighed 10 pounds, 2 ounces last night...we're not concerned about her gaining weight, so missing one weigh-in isn't hurting anybody. In fact, there was a chance that it could take a full day before she could start eating after her surgery, depending on how her digestive system was responding. One day? Make that 2 hours. She ate a full bottle 2 hours after her surgery. That's my little piggy! Here's a picture of her right after she got back from surgery - happy as can be and loving life on her side. It's hard to tell that she's actually happy because her eyes are HUGE at the thrill of a different perspective and being able to move an arm freely.
What a day, what a day. These next few days are going to be big ones as well - lots of position changes that we've been waiting on for 6 weeks, her PICC line has to come out before the antibiotics are done (long story), a new perspective on wound care, waiting to see if she's less fussy with a decrease in pressure on her brain. Stay tuned...
Monday, April 26, 2010
The next big step is upon us
Emma's shunt surgery is Tuesday morning at 8:00. What a big deal this is...and for so many reasons. Russell and I will walk her down to the OR from the room she's in now, and we'll have on the sterile gowns, cap, etc. We will physically hand her over to the OR staff (choking back tears all the while, I'm sure) and verify who she is, what type of surgery she's having, etc...you know, just to make sure they don't end up doing a hip replacement or something. The surgery should only take about 30 minutes, maybe a tad longer. Then they'll bring her right back up to her private room (Hallelujah, we can keep the room!), as long as she's not still on the ventilator. If she is still on the vent, she'll just go to NICU 1 for a few hours probably. Emma will be on antibiotics for 4 or 5 days after the surgery. After they take her off the antibiotics, it will kind of be our call as to when she can go home. Scary, huh?
Let me back up - Big Deal #1: the shunt will take the fluid and associated pressure off her head. She will have to lie flat for 2 weeks basically - ears/shoulders/hips all on one level. She may be upright a little more than usual at first because we've allowed her head to become pretty full...so we may need some extra fluid drainage right off the bat. But we have to be careful because there's more fluid than there's space in her tummy. Then we will learn how to feel her soft spots to determine if she's been upright for too long or lying down for too long. Let me go ahead and warn some of you who will be seeing her soon: her head will look a little large compared to what you're expecting...and you will be able to see the shunt for a while. It will eventually be almost invisible under the skin, though.
Big Deal #2: after the shunt goes in and she's done with antibiotics, the PICC will likely come out. Then some people at the hospital will probably start pushing Dr. Troup as to why she's still here. At that point, it's kind of up to us as to when she leaves because it will depend on how comfortable we are with doing wound care at home! SCARY!!! Now, my dad will go out and get a degree in wound care if that means that he can finally get to hold his granddaughter. The funny thing, though, is that I'm more comfortable with in-home wound care than I am with in-home shunt care. Those first two weeks after the shunt goes in scare the bejeebies out of me - having to monitor all that flat time and questioning whether the fluid level is ok, etc. I've had to teach nurses how to care for the wound...wound care, shmound care. The shunt, I'm not so comfortable with. Oh! I almost forgot - Judie, night nurse extraordinaire, told me tonight that she would be happy to stop by our house once a week or so to check out the wound. I'm speechless. Ok, not speechless, but overcome with love and appreciation.
Which leads me to my next point - shunt care coupled with visitors. Infection coupled with visitors. I've had conversations with several people here at the hospital about allowing visitors for Emma. First of all, because of both the shunt and the wound, we will all have to hold her flat on our laps on a pillow, just like we do now. Second of all, we have to filter (nicely) who can see her. This is the hard part. We've definitely been told no children. All we've been doing for weeks now is fighting infection, and the wound will still be really prone to infection for a very long time. Now we're about to have a device put in that, if infected, could be REALLY, REALLY dangerous and would make this infected wound look like child's play. Emma may be 7 or 8 weeks old when she comes home, but she won't have the immunity to airborne disease like other 7- or 8-week-olds.
Poor little Emma has some tummy problems again. For 2 weeks, she was eating a VERY expensive formula that has to be ordered, and it was causing a few issues. They began to gradually convert it over to a different formula. That move is only going ok...we've had a few little problems with it, too. Who REALLY knows what the core issue is...the formula? Not burping enough or digesting well because she's on her stomach? A side effect of the antiobiotics? And now she'll be going on some anesthesia and pain medication with this next surgery, which will throw another wrench into the plan. We may not get a good handle on her formula for another month or two, after we can rule out other factors. Diaper rash is back in full force, but it's still not as bad as last time.
Emma wasn't great on Sunday night. Russell and I crashed one of the supper clubs that our Sunday School class does. We ate with 3 other couples and had a blast laughing and talking with friends again. Ahhh, how nice to see people who aren't wearing scrubs. In the meantime, Emma was pretty fussy for my mom. We came up to the hospital to relieve my mom, and we stayed until about 11:00. Poor little Emma was uncomfortable, her hiney was hurting, she was gassy (and PEEEWWWW, SHE STINKS)...just overall unhappy. Sorry if this is graphic, but every time she pooted, I chuckled thinking about that commercial for I-don't-know-what where the baby starts talking in front of some houseguests and says something like, "Dad...blaming me for that smell...not cool." That is SO Russell. Anyway, she's been pretty good today, a little fussy tonight...but not bad.
From Saturday to Sunday, we didn't see a huge improvement in the wound like we had seen Thursday and Friday. But from Sunday to today - HUGE improvement! Dr. Troup saw it this evening and said something funny like, "Jumping jeepers!" at how improved it was since the last time he saw it.
As you can see, there are big things (SURGERY! OPEN WOUND!) and small things (diaper rash, gas, formula) that we're worried about right now. But it's so comforting to know that our God cares about these things, big or small, because they are all worthy things that concern US. I am grateful each and every day for that...I don't know why that thought sticks with me, but it does. So we pray for all of them and appreciate all your prayers for the same. Thank you, God, that you love Emma enough to care about all her issues, big and small.
Let me back up - Big Deal #1: the shunt will take the fluid and associated pressure off her head. She will have to lie flat for 2 weeks basically - ears/shoulders/hips all on one level. She may be upright a little more than usual at first because we've allowed her head to become pretty full...so we may need some extra fluid drainage right off the bat. But we have to be careful because there's more fluid than there's space in her tummy. Then we will learn how to feel her soft spots to determine if she's been upright for too long or lying down for too long. Let me go ahead and warn some of you who will be seeing her soon: her head will look a little large compared to what you're expecting...and you will be able to see the shunt for a while. It will eventually be almost invisible under the skin, though.
Big Deal #2: after the shunt goes in and she's done with antibiotics, the PICC will likely come out. Then some people at the hospital will probably start pushing Dr. Troup as to why she's still here. At that point, it's kind of up to us as to when she leaves because it will depend on how comfortable we are with doing wound care at home! SCARY!!! Now, my dad will go out and get a degree in wound care if that means that he can finally get to hold his granddaughter. The funny thing, though, is that I'm more comfortable with in-home wound care than I am with in-home shunt care. Those first two weeks after the shunt goes in scare the bejeebies out of me - having to monitor all that flat time and questioning whether the fluid level is ok, etc. I've had to teach nurses how to care for the wound...wound care, shmound care. The shunt, I'm not so comfortable with. Oh! I almost forgot - Judie, night nurse extraordinaire, told me tonight that she would be happy to stop by our house once a week or so to check out the wound. I'm speechless. Ok, not speechless, but overcome with love and appreciation.
Which leads me to my next point - shunt care coupled with visitors. Infection coupled with visitors. I've had conversations with several people here at the hospital about allowing visitors for Emma. First of all, because of both the shunt and the wound, we will all have to hold her flat on our laps on a pillow, just like we do now. Second of all, we have to filter (nicely) who can see her. This is the hard part. We've definitely been told no children. All we've been doing for weeks now is fighting infection, and the wound will still be really prone to infection for a very long time. Now we're about to have a device put in that, if infected, could be REALLY, REALLY dangerous and would make this infected wound look like child's play. Emma may be 7 or 8 weeks old when she comes home, but she won't have the immunity to airborne disease like other 7- or 8-week-olds.
Poor little Emma has some tummy problems again. For 2 weeks, she was eating a VERY expensive formula that has to be ordered, and it was causing a few issues. They began to gradually convert it over to a different formula. That move is only going ok...we've had a few little problems with it, too. Who REALLY knows what the core issue is...the formula? Not burping enough or digesting well because she's on her stomach? A side effect of the antiobiotics? And now she'll be going on some anesthesia and pain medication with this next surgery, which will throw another wrench into the plan. We may not get a good handle on her formula for another month or two, after we can rule out other factors. Diaper rash is back in full force, but it's still not as bad as last time.
Emma wasn't great on Sunday night. Russell and I crashed one of the supper clubs that our Sunday School class does. We ate with 3 other couples and had a blast laughing and talking with friends again. Ahhh, how nice to see people who aren't wearing scrubs. In the meantime, Emma was pretty fussy for my mom. We came up to the hospital to relieve my mom, and we stayed until about 11:00. Poor little Emma was uncomfortable, her hiney was hurting, she was gassy (and PEEEWWWW, SHE STINKS)...just overall unhappy. Sorry if this is graphic, but every time she pooted, I chuckled thinking about that commercial for I-don't-know-what where the baby starts talking in front of some houseguests and says something like, "Dad...blaming me for that smell...not cool." That is SO Russell. Anyway, she's been pretty good today, a little fussy tonight...but not bad.
From Saturday to Sunday, we didn't see a huge improvement in the wound like we had seen Thursday and Friday. But from Sunday to today - HUGE improvement! Dr. Troup saw it this evening and said something funny like, "Jumping jeepers!" at how improved it was since the last time he saw it.
As you can see, there are big things (SURGERY! OPEN WOUND!) and small things (diaper rash, gas, formula) that we're worried about right now. But it's so comforting to know that our God cares about these things, big or small, because they are all worthy things that concern US. I am grateful each and every day for that...I don't know why that thought sticks with me, but it does. So we pray for all of them and appreciate all your prayers for the same. Thank you, God, that you love Emma enough to care about all her issues, big and small.
Saturday, April 24, 2010
A night off for a night out!
Yay, I took a night off of blogging in exchange for a night out with Russell! My sweet husband got us tickets to see Needtobreathe and Will Hoge (and some other guy I've never heard of) at Clemson last night. We even ended up sitting with a couple from our Sunday School class, and we saw our cousin there, too - I feel like I rejoined society for a little while. And a HUGE thank you to our moms for watching Miss Emma while we were gone. I even got to wear my rings. I haven't worn my rings in almost 6 weeks because you can't wear rings and watches in the NICU. I don't even bother wearing them at all because I don't want to risk losing them when I'd have to take them off. For those of you who may not know me that well, you may not know that I love diamonds. Going back to how sweet my husband is: Russell has graciously indulged this love of mine...within reason, of course. He gave me engagement, wedding, and anniversary rings that I LOVE. Call me materialistic if you want, but believe me when I say that I am very grateful for what we've been blessed with. I'm just being honest, people. So what a blessing Friday night was for so many reasons!
We've been seeing fantastic improvements in Emma's incision over the last two days. We can now see that it's getting smaller overall, and we can also see detailed improvements in certain areas of the wound. As I've been saying, there's a lot of white muscle separation or something like that on one end of the wound. As the gross stuff on top of the white comes out like it's supposed to, we're more and more aware of how deep the wound is at that point...and it's going to take a while for the tissue to granulate on top of it. I just hope that Dr. Troup doesn't see it on Monday before her shunt surgery and think that the wound needs more time to improve before we worry about the shunt. On the other hand, I think his main concern is infection - as long as there's no infection present now or any spinal fluid leaking through the white muscle separation, we'll probably still go ahead with the shunt.
Emma's been sleeping a TON lately, but she fights it for a while. Tonight she was very fussy, and the nurse ordered some Tylenol for her. It turns out that something was hurting because Emma was out like a light soon after the Tylenol ran its course. The nurse has been suspicious the last couple of days that something is hurting...we just don't know what. If it's her poor little head, let's hope the shunt will take care of that! I've heard that she may be fussy for a little while after the shunt goes in because she'll be experiencing significant changes in pressure and changes in the position of her skull plates. Still no estimate on when she'll actually go home.
Russell and Emma had some good snuggle and nap time today. When she's really comfortable, Emma completely sprawls out on the pillow.
We've been seeing fantastic improvements in Emma's incision over the last two days. We can now see that it's getting smaller overall, and we can also see detailed improvements in certain areas of the wound. As I've been saying, there's a lot of white muscle separation or something like that on one end of the wound. As the gross stuff on top of the white comes out like it's supposed to, we're more and more aware of how deep the wound is at that point...and it's going to take a while for the tissue to granulate on top of it. I just hope that Dr. Troup doesn't see it on Monday before her shunt surgery and think that the wound needs more time to improve before we worry about the shunt. On the other hand, I think his main concern is infection - as long as there's no infection present now or any spinal fluid leaking through the white muscle separation, we'll probably still go ahead with the shunt.
Emma's been sleeping a TON lately, but she fights it for a while. Tonight she was very fussy, and the nurse ordered some Tylenol for her. It turns out that something was hurting because Emma was out like a light soon after the Tylenol ran its course. The nurse has been suspicious the last couple of days that something is hurting...we just don't know what. If it's her poor little head, let's hope the shunt will take care of that! I've heard that she may be fussy for a little while after the shunt goes in because she'll be experiencing significant changes in pressure and changes in the position of her skull plates. Still no estimate on when she'll actually go home.
Russell and Emma had some good snuggle and nap time today. When she's really comfortable, Emma completely sprawls out on the pillow.
Thursday, April 22, 2010
What an improvement!
I know I said I might not blog for a few days, but I definitely have to share this with you because it's proof that God is listening to and answering our prayers. When we uncovered Emma's dressing this afternoon, we were looking at the biggest one-day improvement since the wound first began being dressed and medicated. My mom, Dawn, and I were simply amazed. The white spot that could possibly be the site of leaking spinal fluid is almost completely covered with granulating skin, and this skin granulation has spread to a much wider area of the wound. The corners that had split open are visibly closing back more and more every day. I'm trying really hard not to be surprised...because these are things we're asking our God for. Why should I be surprised?? Also, He is looking out for our baby's comfort, which is something else we ask for on a daily basis since we have so few options to change her position and make her comfortable. We've successfully fought off diaper rash twice in the last few days, with very little effort compared to what we dealt with a few weeks ago. He's a faithful God in the big things AND the little things.
I've also blogged that Emma has been awake for record time every day, especially yesterday. All that changed today! In the last 25 hours, she's only been awake for about 4 of them. I really hope that she doesn't give our night nurse fits. She's done so well with keeping her days and nights straight...let's keep it that way! However, once she has surgery on Tuesday and goes under anesthesia and pain meds, her internal clock will start all over again.
Dawn and another one of Emma's primary nurses went to the trouble to look at 5 of our favorite nurses' schedules to make sure that Emma will be covered by one of them at all times. They came up with one 3-day hole, but other than that, we're basically covered for over a week! What a relief and how sweet of those 2 nurses to personally make sure Emma is taken care of. The nurses we have come to love really treat her like she's their very own.
I've also blogged that Emma has been awake for record time every day, especially yesterday. All that changed today! In the last 25 hours, she's only been awake for about 4 of them. I really hope that she doesn't give our night nurse fits. She's done so well with keeping her days and nights straight...let's keep it that way! However, once she has surgery on Tuesday and goes under anesthesia and pain meds, her internal clock will start all over again.
Dawn and another one of Emma's primary nurses went to the trouble to look at 5 of our favorite nurses' schedules to make sure that Emma will be covered by one of them at all times. They came up with one 3-day hole, but other than that, we're basically covered for over a week! What a relief and how sweet of those 2 nurses to personally make sure Emma is taken care of. The nurses we have come to love really treat her like she's their very own.
Wednesday, April 21, 2010
Don't be alarmed if you don't hear from me.
Today was another relatively uneventful day. As I've said before, I'd prefer uneventful to a downslide. We ARE facing another bout with diaper rash, but we're trying really hard not to let it get as bad as it did last time. I know we'll fight this fight often, but at least at the hospital we have the "luxury" of sitting in a hospital room with an oxygen connection to blow on her little hiney. Since we're on autopilot (as Dr. Troup says), I may not post every day for the next few days. No need to just fill up space. I say that now, but watch me end up posting every day...
Dr. Troup came by today and felt Emma's head for fluid build-up...he still says we're ok, and that was about all he came to do. Dawn was our nurse today (yay!) and asked the wound nurse to come back by to check out the wound. The wound nurse mentioned that some skin on the edges of the incision has kind of rolled over into the wound, which I had noticed. This skin won't really adhere to anything else because it's just a healed edge and that can't grow to anything else. Bascially, Dr. Troup will have to remove that healed edge to create a rough edge that will heal to the new skin that will grow up next to it from inside the wound. On one hand, it seems counterintuitive to purposely remove healthy skin, but I also can see how that skin isn't going to adhere to anything that fills in next to it. Dr. Troup hasn't mentioned anything about this to me, but I'll definitely ask him tomorrow. Tomorrow is the last day we'll see him until Monday because he's going out of town. Monday is the day before her surgery, so it kinda scares me that he won't check on her until then. But what can you do?
New frustration with nurses: there must be a secret good schedule and bad schedule...because all our good nurses, even ones that we've had only once, all have the same schedule, basically. Which leaves us with no one that we know to be good on their off days. Sigh. It just never seems to end.
Emma has been either half awake or fully awake, with some very brief catnaps, for 9 consecutive hours. She was fussy during the late afternoon hours, so my mom laid back in the recliner with Emma and put her on her chest. Emma loved it! Even though she was still lying down on her tummy, it was definitely something new for her. Emma was swinging that left arm around and kept smacking my mom in the face.
Oh, she's reached 9 lbs, 8 oz. Hefty considering she was 7 lbs, 2 oz. 5 weeks ago!
Dr. Troup came by today and felt Emma's head for fluid build-up...he still says we're ok, and that was about all he came to do. Dawn was our nurse today (yay!) and asked the wound nurse to come back by to check out the wound. The wound nurse mentioned that some skin on the edges of the incision has kind of rolled over into the wound, which I had noticed. This skin won't really adhere to anything else because it's just a healed edge and that can't grow to anything else. Bascially, Dr. Troup will have to remove that healed edge to create a rough edge that will heal to the new skin that will grow up next to it from inside the wound. On one hand, it seems counterintuitive to purposely remove healthy skin, but I also can see how that skin isn't going to adhere to anything that fills in next to it. Dr. Troup hasn't mentioned anything about this to me, but I'll definitely ask him tomorrow. Tomorrow is the last day we'll see him until Monday because he's going out of town. Monday is the day before her surgery, so it kinda scares me that he won't check on her until then. But what can you do?
New frustration with nurses: there must be a secret good schedule and bad schedule...because all our good nurses, even ones that we've had only once, all have the same schedule, basically. Which leaves us with no one that we know to be good on their off days. Sigh. It just never seems to end.
Emma has been either half awake or fully awake, with some very brief catnaps, for 9 consecutive hours. She was fussy during the late afternoon hours, so my mom laid back in the recliner with Emma and put her on her chest. Emma loved it! Even though she was still lying down on her tummy, it was definitely something new for her. Emma was swinging that left arm around and kept smacking my mom in the face.
Oh, she's reached 9 lbs, 8 oz. Hefty considering she was 7 lbs, 2 oz. 5 weeks ago!
Tuesday, April 20, 2010
That bad feeling wasn't just a feeling...
Four weeks ago when Emma came to NICU 2, my mom and I walked into her room and saw poop coming out the top of her diaper into the bottom of her incision. Clearly, this was cause for concern, and we had a really bad feeling about it. Her incision opened up the following Friday, and it started showing signs of infection soon after. Today I asked an infectious disease doctor specifically what kind of bacteria was cultured. We had previously been told that it was an aggressive bacteria. It turns out that (1) it's very rare, (2) it's found in infants' gastrointestinal tracts, and (3) when it grows, it specifically targets wounds, in addition to a couple other places on the body. Hmmm...a bacteria found in poop that attacks wounds...sounds like the exact thing we were worried about 4 weeks ago when no one had changed our daughter's diaper in hours and hours and hours!!! So that bad feeling we got back then really was cause for concern. It's especially concerning that the nurse that day told us to just change her diaper every few hours, not every time it's dirty, because she'll just poop again. That's not even good sense. Needless to say, she's on our list of don't-even-think-about-assigning-this-nurse-to-us-again nurses.
Emma had another marathon wake-time day - 6 and a half hours! That officially makes 3 straight days of 6+ consecutive hours of awake time. But she did sleep all night last night...let's hope she keeps that up when we go home.
One of the NICU doctors is FINALLY making some changes to Emma's formula. We hope to see some improvement in some things that I won't go into detail about, but let's just say it has to do with poop.
Dr. Troup came by, but I'm not really sure why. There's not much to do right now except wait, but I appreciate him coming by. He's still coming over to check on her head circumference and just check on us in general, I guess. The shunt surgery is still on for Tuesday!
We have a great nurse tonight, and she's back again tomorrow night and Thursday night. Another one of our primary night nurses is on Thursday night, too, so I now officially have some peace of mind about these 3 consecutive nights. Ahhh, that's nice. That's about it for today - nothing really exciting going on.
Emma had another marathon wake-time day - 6 and a half hours! That officially makes 3 straight days of 6+ consecutive hours of awake time. But she did sleep all night last night...let's hope she keeps that up when we go home.
One of the NICU doctors is FINALLY making some changes to Emma's formula. We hope to see some improvement in some things that I won't go into detail about, but let's just say it has to do with poop.
Dr. Troup came by, but I'm not really sure why. There's not much to do right now except wait, but I appreciate him coming by. He's still coming over to check on her head circumference and just check on us in general, I guess. The shunt surgery is still on for Tuesday!
We have a great nurse tonight, and she's back again tomorrow night and Thursday night. Another one of our primary night nurses is on Thursday night, too, so I now officially have some peace of mind about these 3 consecutive nights. Ahhh, that's nice. That's about it for today - nothing really exciting going on.
Monday, April 19, 2010
Seriously, how are you still awake?
All you moms out there - when do babies start staying awake for 6 to 7 hours at a time?
Emma has now gone 2 days in a row being awake for 6 straight hours...and I mean AWAKE. Then she naps for an hour or so and then she's awake for another couple of hours. I was under the impression that babies are still relatively sleepy at 5 weeks!
We officially have a time and day for Emma's shunt - Tuesday, April 27 at 8:00 am - one week! Dr. Troup told me today that while she's under anesthesia, he'll first look at her back under a microscope - to make sure that everything still looks ok in there, especially since this white spot in her back has kind of stalled out and has something to do with the muscle flap protecting the spinal area. I'm sure he didn't want to freak me out again, but I feel certain he's going to make sure there's no spinal fluid leaking or any sort of direct passage into her spine before he puts the shunt in. There can be no other direct passage to or from the spine and/or spinal fluid before the shunt goes in; the shunt absolutely cannot get infected or then we're talking SERIOUS problems...much worse than anything we're dealing with now. So then he'll flip her over and put the shunt in. She'll be back on an IV for fluids and pain medication, not sure for how long. I know this is a whole other surgical procedure, but I just feel like we're about to go backwards 6 weeks...only worse. 5 weeks ago when she had her first surgery, at least her incision was closed. Now we have a huge open incision, 2 more small incisions from the shunt surgery, and the task of monitoring the amount of time she spends lying down versus upright.
Today's nurse was ok - she was nice, pretty attentive, but not my favorite. These nursing schedules are confusing to those of us who work 5 days a week, Monday through Friday. I went through the day by myself from 10 to 4:15 with an active and difficult-to-maneuver baby. Luckily my mom will be there with me tomorrow, and then one of our awesome day nurses will be back on Wednesday when I'm by myself again. Our favorite night nurse will be with Emma the night before and the night after her shunt surgery - you just have no idea how good that makes me feel. If I had a million dollars, there are 4 nurses I would hire personally to look after our daughter 24/7...come oooonnnn, lottery!
Now on to something really touching. Up until my high school years, I grew up with a family in Greenville, the Vecchiones. I call them Aunt Irene and Uncle Andy, and their kids call my parents Aunt Judy and Uncle Ben. They have two children, Nina and Mary Christen, and my mom is Mary Christen's godmother. Aunt Irene and Uncle Andy are originally from Pennsylvania, and they moved back up there about 16, 17 years ago. We've missed them ever since. We do still keep in touch, and we see them occasionally, but I sure would like to have them back here!! Anyway, Mary Christen lives in DC, and she's doing a half ironman (that's a 1.2-mile swim, 56-mile bike, and 13.1-mile run) in Emma's honor. I was so floored and flattered that MC has decided to honor our sweet Emma with this tremendous physical accomplishment. Look at those distances again - this is a huge personal accomplishment, and MC is honoring Emma with this feat. Mary Christen has contacted the Spina Bifida Association (SBA), which is located in DC, and she has set up a way to donate via her website. Please visit Mary Christen's website, and support her and the SBA! Her goal is to raise $3,160 for SBA...because Emma was born on 3-16. Even if you can't give, go to MC's website, leave her a supportive message, and be sure to read the sweet things she wrote about my mom. It's all true.
While we're talking about people doing nice things for Emma, I've got one more thing that I don't have all the details on. I want to go ahead and mention it, though, to make you aware! A lady (whom I've never met) works with a close friend of mine, and the youth group at her church in Pickens is doing a fundraising dinner for us early this summer. It was originally scheduled for late May, but now an additional church has signed on for the festivities, so it's going to be early summer. This first started as a fundraising dinner, but it's now turned into something bigger...they're considering doing an American Idol-type thing, with people singing in a competition. People will pay to vote for their favorite singer(s), and then the dinner will be afterward. This will come as a shock to those of you who are used to reading these long blog entries, but I really don't have the words to express my gratitude, shock, and appreciation to these perfect strangers. Even though I know the Lord can do anything and connect us all one way or another, I still can't believe that our little baby has reached so many. Consider this - there are only four people in our circle of friends and family who have ever seen her...yet she is reaching hundreds. That's God, my friends.
I'll leave you with this picture of the front of our house, complete with a pink mailbox bow and a diaper wreath on the door. I don't care if these things are falling off the mailbox and door in shreds...I'm not taking them down until Emma comes home. Now that we have a surgery date, I really hope that I can finally take them down in two more weeks. Besides, those white diapers are looking pretty gross when you get up close and see all that pollen...
Emma has now gone 2 days in a row being awake for 6 straight hours...and I mean AWAKE. Then she naps for an hour or so and then she's awake for another couple of hours. I was under the impression that babies are still relatively sleepy at 5 weeks!
We officially have a time and day for Emma's shunt - Tuesday, April 27 at 8:00 am - one week! Dr. Troup told me today that while she's under anesthesia, he'll first look at her back under a microscope - to make sure that everything still looks ok in there, especially since this white spot in her back has kind of stalled out and has something to do with the muscle flap protecting the spinal area. I'm sure he didn't want to freak me out again, but I feel certain he's going to make sure there's no spinal fluid leaking or any sort of direct passage into her spine before he puts the shunt in. There can be no other direct passage to or from the spine and/or spinal fluid before the shunt goes in; the shunt absolutely cannot get infected or then we're talking SERIOUS problems...much worse than anything we're dealing with now. So then he'll flip her over and put the shunt in. She'll be back on an IV for fluids and pain medication, not sure for how long. I know this is a whole other surgical procedure, but I just feel like we're about to go backwards 6 weeks...only worse. 5 weeks ago when she had her first surgery, at least her incision was closed. Now we have a huge open incision, 2 more small incisions from the shunt surgery, and the task of monitoring the amount of time she spends lying down versus upright.
Today's nurse was ok - she was nice, pretty attentive, but not my favorite. These nursing schedules are confusing to those of us who work 5 days a week, Monday through Friday. I went through the day by myself from 10 to 4:15 with an active and difficult-to-maneuver baby. Luckily my mom will be there with me tomorrow, and then one of our awesome day nurses will be back on Wednesday when I'm by myself again. Our favorite night nurse will be with Emma the night before and the night after her shunt surgery - you just have no idea how good that makes me feel. If I had a million dollars, there are 4 nurses I would hire personally to look after our daughter 24/7...come oooonnnn, lottery!
Now on to something really touching. Up until my high school years, I grew up with a family in Greenville, the Vecchiones. I call them Aunt Irene and Uncle Andy, and their kids call my parents Aunt Judy and Uncle Ben. They have two children, Nina and Mary Christen, and my mom is Mary Christen's godmother. Aunt Irene and Uncle Andy are originally from Pennsylvania, and they moved back up there about 16, 17 years ago. We've missed them ever since. We do still keep in touch, and we see them occasionally, but I sure would like to have them back here!! Anyway, Mary Christen lives in DC, and she's doing a half ironman (that's a 1.2-mile swim, 56-mile bike, and 13.1-mile run) in Emma's honor. I was so floored and flattered that MC has decided to honor our sweet Emma with this tremendous physical accomplishment. Look at those distances again - this is a huge personal accomplishment, and MC is honoring Emma with this feat. Mary Christen has contacted the Spina Bifida Association (SBA), which is located in DC, and she has set up a way to donate via her website. Please visit Mary Christen's website, and support her and the SBA! Her goal is to raise $3,160 for SBA...because Emma was born on 3-16. Even if you can't give, go to MC's website, leave her a supportive message, and be sure to read the sweet things she wrote about my mom. It's all true.
While we're talking about people doing nice things for Emma, I've got one more thing that I don't have all the details on. I want to go ahead and mention it, though, to make you aware! A lady (whom I've never met) works with a close friend of mine, and the youth group at her church in Pickens is doing a fundraising dinner for us early this summer. It was originally scheduled for late May, but now an additional church has signed on for the festivities, so it's going to be early summer. This first started as a fundraising dinner, but it's now turned into something bigger...they're considering doing an American Idol-type thing, with people singing in a competition. People will pay to vote for their favorite singer(s), and then the dinner will be afterward. This will come as a shock to those of you who are used to reading these long blog entries, but I really don't have the words to express my gratitude, shock, and appreciation to these perfect strangers. Even though I know the Lord can do anything and connect us all one way or another, I still can't believe that our little baby has reached so many. Consider this - there are only four people in our circle of friends and family who have ever seen her...yet she is reaching hundreds. That's God, my friends.
I'll leave you with this picture of the front of our house, complete with a pink mailbox bow and a diaper wreath on the door. I don't care if these things are falling off the mailbox and door in shreds...I'm not taking them down until Emma comes home. Now that we have a surgery date, I really hope that I can finally take them down in two more weeks. Besides, those white diapers are looking pretty gross when you get up close and see all that pollen...
Sunday, April 18, 2010
A nice relaxing Sunday
Today was pretty uneventful, but I'll take uneventful over bad news any day. We found out that Emma's state screening came back normal for a lot of the abnormalities that it tests for. She had a bad night from about 4:00 am to 7:00 am and slept the rest of the morning with one eye cracked. Then she was WIDE OPEN from noon to 6:00 pm!! We couldn't believe it - 6 hours straight is a very long time for a 5-week-old baby. So hopefully she will sleep really well for Judy tonight, who had to endure a lot of screaming for a very long time last night.
Emma's incision is looking better and better every day, but only if you know what to look for and where. We are gradually seeing the right and left corners starting to close up again, and we see more pink granulation throughout the wound. I think the granulation is there more than we know, but there's this yellow gook on top of it that has to come off first. Thankfully, with each dressing change every 12 hours, more and more of that stuff is coming off onto the medicine-soaked gauze that's stuffed in there. That little white circle that I've been concerned about may be more than a circle - it could actually be the end of a line of white that runs almost the whole length of the incision. This could more separated muscle than we realized. Whatever it is, we're hoping the granulating skin will grow on top of it, and we can just move on! One of the sutures came out today while the nurse was dabbing the wound, and I think this was one of the sutures that was holding the muscle to the skin. I'm going to be sure to ask the doctor tomorrow because we can see a few other sutures hanging out in there. If the muscle has separated, they're just going to come out, and there's not much we can do about it, but I'm going to ask about it just to be sure.
Some diaper rash has started creeping in again, and I'm NOT going to let it go on as long as it did before. I plan on spending all day tomorrow with her diaper open spraying her little hiney with oxygen if I have to. Emma's dealing with so much...why do we have to add diaper rash to the list...again?!
I feel great about tonight's nurse and tomorrow night, but I'm not so sure about tomorrow and Tuesday during the day, as well as Tuesday night. So if you need something specific to pray for, please pray for some good nurses tomorrow through Tuesday night. I know we're taken care of on Wednesday and Wednesday night.
Emma's incision is looking better and better every day, but only if you know what to look for and where. We are gradually seeing the right and left corners starting to close up again, and we see more pink granulation throughout the wound. I think the granulation is there more than we know, but there's this yellow gook on top of it that has to come off first. Thankfully, with each dressing change every 12 hours, more and more of that stuff is coming off onto the medicine-soaked gauze that's stuffed in there. That little white circle that I've been concerned about may be more than a circle - it could actually be the end of a line of white that runs almost the whole length of the incision. This could more separated muscle than we realized. Whatever it is, we're hoping the granulating skin will grow on top of it, and we can just move on! One of the sutures came out today while the nurse was dabbing the wound, and I think this was one of the sutures that was holding the muscle to the skin. I'm going to be sure to ask the doctor tomorrow because we can see a few other sutures hanging out in there. If the muscle has separated, they're just going to come out, and there's not much we can do about it, but I'm going to ask about it just to be sure.
Some diaper rash has started creeping in again, and I'm NOT going to let it go on as long as it did before. I plan on spending all day tomorrow with her diaper open spraying her little hiney with oxygen if I have to. Emma's dealing with so much...why do we have to add diaper rash to the list...again?!
I feel great about tonight's nurse and tomorrow night, but I'm not so sure about tomorrow and Tuesday during the day, as well as Tuesday night. So if you need something specific to pray for, please pray for some good nurses tomorrow through Tuesday night. I know we're taken care of on Wednesday and Wednesday night.
Saturday, April 17, 2010
Who knew such big decisions would be made on a Saturday?
Today I had a wonderful day at home doing all kinds of things that have been put on the back burner around our house. I feel so accomplished and relieved! While I was at home, a LOT was going down at the hospital. Russell, my mom, and his mom took turns with Emma, and they gave me great reports from Dawn and the doctors. First of all, Dawn dressed Emma's wound yesterday, so she had something to compare it to today. She said it looked wonderful, and she and Russell could both see an improvement in the amount of pink granulation coming through.
Some other big things that happened relate to Emma's antibiotics and her shunt surgery. One of the pediatric infectious disease doctors came by and determined that Emma needs to be on one of her antibiotics for one more week, which will be next Monday. She contacted Dr. Troup, and he was in agreement with this decision. On top of that, he decided that Emma's shunt surgery will tentatively be scheduled for next Monday or Tuesday. This is a pretty big step because he is absolutely the last person who will project even an estimated date for anything! He actually said that he'd be willing to do it this Thursday, but he's going out of town on Friday; he just doesn't want to go out of town the day after he does the surgery...which I appreciate very much! This doesn't sound great that her surgery is still another week out AND the antibiotics have to keep flowing for another week, but to be honest, it doesn't bother me one bit to give Emma more good medicine and more time for the wound to heal before she has to go on her back for the shunt. The shunt requires her to spend some time flat and some time upright, so the wound really needs to be in a lot better shape for that to happen. I wonder if the doctors also want to give that suspicious white spot in the middle of the wound some more time to heal...
God is really taking care of our little girl. Some days it doesn't feel like it, but today I really do feel His comfort, even though we got news that Emma still needs another week of antibiotics. I just know deep down that He's going to do great things with her incision this week.
I wouldn't dare post a picture of Emma's fully open wound, but I do have a picture of one step of the dressing, just so that you have an idea of how big it is. This is what it looks like before the outer dressing goes on it. There's a piece of gauze soaked in gel medicine and then pressed into the wound. You can also see the Press 'N Seal around the edges. Hopefully it's not too graphic for you! Now you can see that the wound is a pretty big deal, and it's easy to see why Emma has to be on her tummy all the time.
Tonight's sweet nurse Judy is fantastic. She told us that next weekend, Russell and I should take a day trip together before Emma comes home since she would be here at nighttime and Dawn would be here during the day - two nurses we completely trust. It's so nice to have a nurse genuinely care about us and actually tell us to leave; this means she doesn't view us as parents who will do her job for her when we're here! Tell me this wasn't meant to be - her name is Judy (my mom's name), and she has a daughter named Mary Beth. Maybe we WILL take a day trip...Judy suggested the Grove Park Inn. Wouldn't that be nice on a beautiful spring afternoon?
Some other big things that happened relate to Emma's antibiotics and her shunt surgery. One of the pediatric infectious disease doctors came by and determined that Emma needs to be on one of her antibiotics for one more week, which will be next Monday. She contacted Dr. Troup, and he was in agreement with this decision. On top of that, he decided that Emma's shunt surgery will tentatively be scheduled for next Monday or Tuesday. This is a pretty big step because he is absolutely the last person who will project even an estimated date for anything! He actually said that he'd be willing to do it this Thursday, but he's going out of town on Friday; he just doesn't want to go out of town the day after he does the surgery...which I appreciate very much! This doesn't sound great that her surgery is still another week out AND the antibiotics have to keep flowing for another week, but to be honest, it doesn't bother me one bit to give Emma more good medicine and more time for the wound to heal before she has to go on her back for the shunt. The shunt requires her to spend some time flat and some time upright, so the wound really needs to be in a lot better shape for that to happen. I wonder if the doctors also want to give that suspicious white spot in the middle of the wound some more time to heal...
God is really taking care of our little girl. Some days it doesn't feel like it, but today I really do feel His comfort, even though we got news that Emma still needs another week of antibiotics. I just know deep down that He's going to do great things with her incision this week.
I wouldn't dare post a picture of Emma's fully open wound, but I do have a picture of one step of the dressing, just so that you have an idea of how big it is. This is what it looks like before the outer dressing goes on it. There's a piece of gauze soaked in gel medicine and then pressed into the wound. You can also see the Press 'N Seal around the edges. Hopefully it's not too graphic for you! Now you can see that the wound is a pretty big deal, and it's easy to see why Emma has to be on her tummy all the time.
Tonight's sweet nurse Judy is fantastic. She told us that next weekend, Russell and I should take a day trip together before Emma comes home since she would be here at nighttime and Dawn would be here during the day - two nurses we completely trust. It's so nice to have a nurse genuinely care about us and actually tell us to leave; this means she doesn't view us as parents who will do her job for her when we're here! Tell me this wasn't meant to be - her name is Judy (my mom's name), and she has a daughter named Mary Beth. Maybe we WILL take a day trip...Judy suggested the Grove Park Inn. Wouldn't that be nice on a beautiful spring afternoon?
Friday, April 16, 2010
Sneaky little sucker, aren't you, doc?
HAPPY ONE MONTH, EMMA CLAIRE!
Today was a pretty decent day, after Emma got over her screaming and crying fit that she had for a while early this afternoon. She's been pretty sleepy ever since. So far, so good with our nurses - Dawn, one of Emma's primary (AND AWESOME) nurses, is here today, Saturday and Sunday, and Emma's night nurse is another one of her primary nurses that we really like. That nurse is here tonight, Saturday, Sunday, and Monday nights. What a relief.
As I suspected, Dawn was NOT pleased with Emma's nursing care Wednesday night and Thursday. She wrote out new instructions for dressing Emma's wound and placed them over her crib - SURELY a new nurse will see them there...but we're hoping for as few new nurses as possible. She verbally reviewed Emma's dressing instructions three times on Wednesday with the night nurse, in addition to them being written down on Emma's official "report card." Neither Wednesday night's or Thursday's nurse reviewed those written instructions. We also figured out today that because Wednesday night's nurse dressed the wound completely wrong, Emma's medicated wound gel got on her healthy skin and has caused some really nasty-looking red irritation. Thanks a lot.
Dr. Troup came in today to check out Emma's incision, and he and Dawn were able to have a conversation about the wound and what the wound care nurse had communicated to Dawn. I mentioned in yesterday's blog that Dr. Troup didn't seem worried about the white goopy spot in the middle of Emma's wound. The reason he didn't "seem" worried is that he was making an effort not to appear worried for my benefit. I told him that one of the NICU doctors said we needed to be on the lookout for clear, watery spinal fluid leaking out in that spot. So I asked Dr. Troup how we're supposed to know if spinal fluid is leaking when Emma's topical medicine is clear gel. He said, "Well, when I was poking around in there the other day, I was trying to see if any fluid would leak, and it wasn't. We do need to keep an eye on it, but I didn't say anything because I didn't want you to freak out." To which I responded, "Yeah, I kinda am!" So I think we're still just waiting to see if any spinal fluid will leak when the wound is cleaned out and that little white spot is provoked!
I overheard Dr. Troup say something to the NICU doctor outside our room about Emma's shunt. The problem is that I only heard the last part of his sentence...so this is what I heard: "...wound isn't healing enough for me to do a shunt." The first part could have been "I know that the...", "We'll see on Monday if the...", "I doubt that the..." Who knows? So on Sunday or Monday, the NICU doctors, pediatric infectious disease doctors, and Dr. Troup will decide if she needs to come off the antibiotics. Then who knows what after that? Based on how Dr. Troup feels about the wound's progress (there's a dressing technique that he and the wound nurse disagree on - his technique gets some gross stuff out of there faster, but we're doing it the wound expert's way right now, which is a little more effective and less risky in the long run), I don't think he's comfortable with doing a shunt anytime at the beginning of next week. Nowhere close. He may decide Monday to dress the wound his way, which will make things progress to a point where he can do the shunt, I think. I think that we won't even make it out of here in 6 weeks. Maybe it's going to be 7 or 8 :( This coming Tuesday will be 5 weeks. But like I said in last night's blog, I can't think about what will happen Sunday or Monday...I can only take it a day at a time and be thankful that Emma has fantastic nurses for the next 2 days and 3 nights.
Tonight, I leave you with this:
Nothing too exciting, but we just think she's cute. Even with the weird PICC line sticking out of her head.
Oh, PS - she hit 9 pounds tonight, and the nurses keep commenting on how fat she's getting. Good baby fat, not childhood obesity fat.
Today was a pretty decent day, after Emma got over her screaming and crying fit that she had for a while early this afternoon. She's been pretty sleepy ever since. So far, so good with our nurses - Dawn, one of Emma's primary (AND AWESOME) nurses, is here today, Saturday and Sunday, and Emma's night nurse is another one of her primary nurses that we really like. That nurse is here tonight, Saturday, Sunday, and Monday nights. What a relief.
As I suspected, Dawn was NOT pleased with Emma's nursing care Wednesday night and Thursday. She wrote out new instructions for dressing Emma's wound and placed them over her crib - SURELY a new nurse will see them there...but we're hoping for as few new nurses as possible. She verbally reviewed Emma's dressing instructions three times on Wednesday with the night nurse, in addition to them being written down on Emma's official "report card." Neither Wednesday night's or Thursday's nurse reviewed those written instructions. We also figured out today that because Wednesday night's nurse dressed the wound completely wrong, Emma's medicated wound gel got on her healthy skin and has caused some really nasty-looking red irritation. Thanks a lot.
Dr. Troup came in today to check out Emma's incision, and he and Dawn were able to have a conversation about the wound and what the wound care nurse had communicated to Dawn. I mentioned in yesterday's blog that Dr. Troup didn't seem worried about the white goopy spot in the middle of Emma's wound. The reason he didn't "seem" worried is that he was making an effort not to appear worried for my benefit. I told him that one of the NICU doctors said we needed to be on the lookout for clear, watery spinal fluid leaking out in that spot. So I asked Dr. Troup how we're supposed to know if spinal fluid is leaking when Emma's topical medicine is clear gel. He said, "Well, when I was poking around in there the other day, I was trying to see if any fluid would leak, and it wasn't. We do need to keep an eye on it, but I didn't say anything because I didn't want you to freak out." To which I responded, "Yeah, I kinda am!" So I think we're still just waiting to see if any spinal fluid will leak when the wound is cleaned out and that little white spot is provoked!
I overheard Dr. Troup say something to the NICU doctor outside our room about Emma's shunt. The problem is that I only heard the last part of his sentence...so this is what I heard: "...wound isn't healing enough for me to do a shunt." The first part could have been "I know that the...", "We'll see on Monday if the...", "I doubt that the..." Who knows? So on Sunday or Monday, the NICU doctors, pediatric infectious disease doctors, and Dr. Troup will decide if she needs to come off the antibiotics. Then who knows what after that? Based on how Dr. Troup feels about the wound's progress (there's a dressing technique that he and the wound nurse disagree on - his technique gets some gross stuff out of there faster, but we're doing it the wound expert's way right now, which is a little more effective and less risky in the long run), I don't think he's comfortable with doing a shunt anytime at the beginning of next week. Nowhere close. He may decide Monday to dress the wound his way, which will make things progress to a point where he can do the shunt, I think. I think that we won't even make it out of here in 6 weeks. Maybe it's going to be 7 or 8 :( This coming Tuesday will be 5 weeks. But like I said in last night's blog, I can't think about what will happen Sunday or Monday...I can only take it a day at a time and be thankful that Emma has fantastic nurses for the next 2 days and 3 nights.
Tonight, I leave you with this:
Nothing too exciting, but we just think she's cute. Even with the weird PICC line sticking out of her head.
Oh, PS - she hit 9 pounds tonight, and the nurses keep commenting on how fat she's getting. Good baby fat, not childhood obesity fat.
Thursday, April 15, 2010
And the winner is...
My sister, Anissa! And no, she didn't have any unfair advantages regarding what odd thing was on Emma's medicine cart. She emailed me her answer and not only nailed what the odd item was, but also what it was for. Dr. Troup and a couple of the nurses were very concerned about Emma's delicate baby skin. The wound care nurse said that they've started using Glad Press 'N Seal right on people's skin. It's really gentle on skin but still sticks to it. In this picture, you can see the shiny Press 'N Seal around the edges, and the gauze is taped to the Press 'N Seal. The Press 'N Seal is just cut into strips that are lined up with the edges of the incision; it doesn't actually go over the open wound. So when it's time for a dressing change, you just peel the Press 'N Seal up, and everything comes off without harming the little booboo's skin. The wound nurse said it's only a matter of time before Glad realizes that the medical profession is using it, and they'll start producing it for hospitals and charge three times as much.
Today was kind of frustrating on a few different levels. Again, no one will really identify what the white gooey spot in the middle of Emma's wound is. The best thing I can come up with is what Dr. Troup seems to think - the muscle has separated (from itself? from the skin? I don't know.). He doesn't seem worried. So I'm trying my best to not be worried, either. NICU doctors have told us we need to make sure spinal fluid isn't leaking. Apparently it just looks like water when it leaks.
The next frustrating thing that really almost ruined my day was a nursing situation...AGAIN. AGAIN, AGAIN, AGAIN. I posted a couple days ago that I didn't feel great about the nurse on Tuesday night. Last night I felt even worse. Last night's nurse was the same nurse who we felt so uncomfortable with that Russell spent the night a while back. We specifically requested to not have her back, but apparently that request was somehow overlooked. As I said yesterday, Dawn received new and improved instructions on dressing Emma's wound, including the new Press 'N Seal use. Dawn is very, very attentive, smart, and caring, so I know for a fact that she correctly documented AND verbally communicated the dressing instructions to last night's nurse. (Side note: sweet Dawn even called the NICU this morning on her day off to check on Emma and see if Dr. Troup had come by.) So when 4:00 dressing change time rolled around today, today's clueless nurse peeled up the Press N' Seal, only to find that the night nurse had dressed the wound completely wrong. It doesn't even make sense how she dressed it. So then I had to give today's nurse instructions on how to do it properly. Two problems with this are:
1. Today's nurse was stubborn (even though she requested my help) and didn't fully listen to me until she realized her way wasn't going to work, so the dressing change took half an hour, and Emma was starving and ticked off because it had been 4 and a half hours since she had eaten. Some adults can't make it that long.
2. I didn't pay complete attention to the wound care nurse's instructions yesterday because I wasn't aware that I would be teaching OTHER nurses how to do it!!! Again, I don't blame Dawn because she did her job in regards to documenting and verbally communicating instructions.
After we finally got the wound dressed the way I think (I THINK, I HOPE!!) it's supposed to be, I demanded to see the nurse manager IMMEDIATELY. I was nice to her and not rude at all but very clear about how disappointed we are and how ridiculous Emma's care has been at times.
Emma is currently in a state of monitoring - monitoring the development of the wound, monitoring the fluid on her brain, monitoring the little red irritated vein the PICC is in, etc. So what good does it do for the people who monitor Emma to be a revolving door of one-time nurses who have no idea if something is improving or getting worse?! My nightmare scenario is that Emma is crying, a new nurse comes in to console her, and lays her on her back or puts pressure on this incision because they haven't seen it uncovered and don't know any better. I don't understand why no effort is made to assign the same group of nurses to high-maintenance babies like Emma...babies with specific, unique, and critical needs. I understand that there are over 100 nurses in the NICU, and we can't just have the same 2 every time. But we've been here for 4 and a half weeks. That's plenty of time to establish a history of nurses who have cared for and can continue to care for Emma. I explained these concerns to the nurse manager, and I'm really hoping that I don't have to have a 5th conversation about nurses. I bet I've earned a reputation for being THAT mom...too bad...my daughter has a gaping, 3-inch infected hole in her back and fluid on her brain. We've earned the right to good care. We've had tonight's nurse before, and she's good...and she's not back again until next Wednesday. Figures.
The nurse manager suggested that tomorrow Dawn and I write out dressing instructions and take step-by-step pictures as she changes the dressing. This will also allow any new nurses to see pictures up front of how severe the wound is. I know Dawn will be happy to do this. After getting to know her pretty well, I feel certain that Dawn will be ticked that Emma didn't get the level of care she has tried to set up for her, but she won't really voice that to me.
For now, I will thank God that I can go home at ease with Emma's nursing care tonight, tomorrow, Saturday, and Sunday (Dawn AND Erica are here this weekend!). I can't think ahead to Sunday, her last day of antibiotics - this is supposed to be a turning point in regards to the next step for her. I just have to think about tonight and tomorrow morning. She will be taken care of. After that, I'm taking it a few hours at a time. I think I might be a little closer to learning how to truly rest in the Lord's plan. Believe me, I am nowhere close to being at ease with all of this and worry-free...but just taking things a little bit at a time and not thinking too far ahead allows me to trust that He is looking ahead for me.
Today was kind of frustrating on a few different levels. Again, no one will really identify what the white gooey spot in the middle of Emma's wound is. The best thing I can come up with is what Dr. Troup seems to think - the muscle has separated (from itself? from the skin? I don't know.). He doesn't seem worried. So I'm trying my best to not be worried, either. NICU doctors have told us we need to make sure spinal fluid isn't leaking. Apparently it just looks like water when it leaks.
The next frustrating thing that really almost ruined my day was a nursing situation...AGAIN. AGAIN, AGAIN, AGAIN. I posted a couple days ago that I didn't feel great about the nurse on Tuesday night. Last night I felt even worse. Last night's nurse was the same nurse who we felt so uncomfortable with that Russell spent the night a while back. We specifically requested to not have her back, but apparently that request was somehow overlooked. As I said yesterday, Dawn received new and improved instructions on dressing Emma's wound, including the new Press 'N Seal use. Dawn is very, very attentive, smart, and caring, so I know for a fact that she correctly documented AND verbally communicated the dressing instructions to last night's nurse. (Side note: sweet Dawn even called the NICU this morning on her day off to check on Emma and see if Dr. Troup had come by.) So when 4:00 dressing change time rolled around today, today's clueless nurse peeled up the Press N' Seal, only to find that the night nurse had dressed the wound completely wrong. It doesn't even make sense how she dressed it. So then I had to give today's nurse instructions on how to do it properly. Two problems with this are:
1. Today's nurse was stubborn (even though she requested my help) and didn't fully listen to me until she realized her way wasn't going to work, so the dressing change took half an hour, and Emma was starving and ticked off because it had been 4 and a half hours since she had eaten. Some adults can't make it that long.
2. I didn't pay complete attention to the wound care nurse's instructions yesterday because I wasn't aware that I would be teaching OTHER nurses how to do it!!! Again, I don't blame Dawn because she did her job in regards to documenting and verbally communicating instructions.
After we finally got the wound dressed the way I think (I THINK, I HOPE!!) it's supposed to be, I demanded to see the nurse manager IMMEDIATELY. I was nice to her and not rude at all but very clear about how disappointed we are and how ridiculous Emma's care has been at times.
Emma is currently in a state of monitoring - monitoring the development of the wound, monitoring the fluid on her brain, monitoring the little red irritated vein the PICC is in, etc. So what good does it do for the people who monitor Emma to be a revolving door of one-time nurses who have no idea if something is improving or getting worse?! My nightmare scenario is that Emma is crying, a new nurse comes in to console her, and lays her on her back or puts pressure on this incision because they haven't seen it uncovered and don't know any better. I don't understand why no effort is made to assign the same group of nurses to high-maintenance babies like Emma...babies with specific, unique, and critical needs. I understand that there are over 100 nurses in the NICU, and we can't just have the same 2 every time. But we've been here for 4 and a half weeks. That's plenty of time to establish a history of nurses who have cared for and can continue to care for Emma. I explained these concerns to the nurse manager, and I'm really hoping that I don't have to have a 5th conversation about nurses. I bet I've earned a reputation for being THAT mom...too bad...my daughter has a gaping, 3-inch infected hole in her back and fluid on her brain. We've earned the right to good care. We've had tonight's nurse before, and she's good...and she's not back again until next Wednesday. Figures.
The nurse manager suggested that tomorrow Dawn and I write out dressing instructions and take step-by-step pictures as she changes the dressing. This will also allow any new nurses to see pictures up front of how severe the wound is. I know Dawn will be happy to do this. After getting to know her pretty well, I feel certain that Dawn will be ticked that Emma didn't get the level of care she has tried to set up for her, but she won't really voice that to me.
For now, I will thank God that I can go home at ease with Emma's nursing care tonight, tomorrow, Saturday, and Sunday (Dawn AND Erica are here this weekend!). I can't think ahead to Sunday, her last day of antibiotics - this is supposed to be a turning point in regards to the next step for her. I just have to think about tonight and tomorrow morning. She will be taken care of. After that, I'm taking it a few hours at a time. I think I might be a little closer to learning how to truly rest in the Lord's plan. Believe me, I am nowhere close to being at ease with all of this and worry-free...but just taking things a little bit at a time and not thinking too far ahead allows me to trust that He is looking ahead for me.
Wednesday, April 14, 2010
What's wrong with this picture?
Here's a picture of all the meds and supplies that Emma needs on a daily basis. Her medicine cabinet, if you will. Now please identify what looks out of place on this cart. Leave a comment on the blog if you think you know what it is! I'll post on tomorrow's blog what it is and why Emma needs it on her medicine cart.
Whew, what a day. Emma was fussy this morning and early afternoon and FINALLY went to sleep mid-afternoon. She actually wasn't so great yesterday morning and early afternoon, either, but yesterday was more screaming and crying than today. I think that now that she's a month old, she's awake more in the morning and is kinda bored. Oh, and she's old enough to hate wet diapers now.
After Emary finally went to sleep around 1:30, the wound nurse came at 2:00. She had not come by in 9 days since she first visited Emma. You'd think that they would follow up with patients, but apparently they don't - unless you specifically ask them to come back. So Dawn, our primary (and absolutely wonderful) nurse asked them to come back because she, personally, wanted them to follow up on Emma's wound. Dr. Troup had added his own twist to the wound nurse's instructions, and once she was made aware of that today, she told Dawn to try to convince him to only do it her way. There's still one little part in the middle of her wound that, strangely, no doctor (or wound nurse) will really identify. It's still white and soft, and there's some black stuff underneath it...except the wound nurse thinks it could actually be a deep, deep hole underneath. Black holes are only ok in space, not on my daughter's back. So we'll see if some doctor sometime somehow will finally identify exactly what that is...
Dawn not only ordered the wound nurse to come in because she personally wanted her to, but she also decided that she would give Emma a very difficult and time-consuming bath, as well as change her linens early, in the midst of a difficult behavioral day. She has been a fantastic nurse, and none of these things that Dawn did for Emma today were absolutely necessary on her shift by any means. She was just geniunely looking out for our child, and we are so grateful for her in our lives right now.
Like I said, Dawn gave Emma a bath today - her first bath! It was a little different than most babies' first baths, but it was still a bath. She even was under heat lamps, which babies looooove. Emma had her mullet shampooed, but we couldn't wash any other part of her hair because of the PICC. Here are some pictures of the big event:
Dr. Troup didn't stop in to check on Emma today, but there's not a lot he can do from day to day right now. I'm sure he'll be in tomorrow.
Ok, this last picture is how we have to hold Emma to move her from her crib to a pillow on our laps. It's funny when she's really sleepy because her arms and legs dangle down like this and she could care less that she's not lying on her tummy for once.
Whew, what a day. Emma was fussy this morning and early afternoon and FINALLY went to sleep mid-afternoon. She actually wasn't so great yesterday morning and early afternoon, either, but yesterday was more screaming and crying than today. I think that now that she's a month old, she's awake more in the morning and is kinda bored. Oh, and she's old enough to hate wet diapers now.
After Emary finally went to sleep around 1:30, the wound nurse came at 2:00. She had not come by in 9 days since she first visited Emma. You'd think that they would follow up with patients, but apparently they don't - unless you specifically ask them to come back. So Dawn, our primary (and absolutely wonderful) nurse asked them to come back because she, personally, wanted them to follow up on Emma's wound. Dr. Troup had added his own twist to the wound nurse's instructions, and once she was made aware of that today, she told Dawn to try to convince him to only do it her way. There's still one little part in the middle of her wound that, strangely, no doctor (or wound nurse) will really identify. It's still white and soft, and there's some black stuff underneath it...except the wound nurse thinks it could actually be a deep, deep hole underneath. Black holes are only ok in space, not on my daughter's back. So we'll see if some doctor sometime somehow will finally identify exactly what that is...
Dawn not only ordered the wound nurse to come in because she personally wanted her to, but she also decided that she would give Emma a very difficult and time-consuming bath, as well as change her linens early, in the midst of a difficult behavioral day. She has been a fantastic nurse, and none of these things that Dawn did for Emma today were absolutely necessary on her shift by any means. She was just geniunely looking out for our child, and we are so grateful for her in our lives right now.
Like I said, Dawn gave Emma a bath today - her first bath! It was a little different than most babies' first baths, but it was still a bath. She even was under heat lamps, which babies looooove. Emma had her mullet shampooed, but we couldn't wash any other part of her hair because of the PICC. Here are some pictures of the big event:
Dr. Troup didn't stop in to check on Emma today, but there's not a lot he can do from day to day right now. I'm sure he'll be in tomorrow.
Ok, this last picture is how we have to hold Emma to move her from her crib to a pillow on our laps. It's funny when she's really sleepy because her arms and legs dangle down like this and she could care less that she's not lying on her tummy for once.
Tuesday, April 13, 2010
Dirty mullets are NOT cute on one-month-old little girls.
Check out this nappy hair. Because of the PICC in Emma's head, we can't wash her hair for risk of infection. And her hair is getting long, too. Gosh, I cannot WAIT to bathe her!! It looks like she has a bald spot, but it's just the baby bald spot. Her hair also looks pretty brown, but it's actually lighter than that. Being dirty makes it look darker, too. Ich.
For the second day in a row, Emma's gained 4 ounces in a day. She now weighs 8 pounds, 13 ounces. She's going to outgrow all our newborn diapers and clothes before we even get her home! The good news is that the NICU doctors have told us time and time again that good eating and growth is the best thing to help babies heal. Believe me, homegirl doesn't play around when it comes to eating. Praise God that she enjoys her food...this is one of His ways of taking care of her.
We learned today that we'll probably have to have a car bed for her to travel in for a while. I don't know how long "a while" is, but this is something we'll just borrow from the hospital I think. Because of where the incision is and how babies lie in an infant carrier, she probably can't go in her infant carrier. So it looks like she'll be a shut-in until she can travel for a good period of time in the infant carrier...because even if she can travel in the car with a car bed, what do we do with her once we get where we're going?? The social worker assigned to us is very proactive and is already thinking of things to address with Dr. Troup regarding helping us care for her when we leave.
Dr. Troup and his nurse came by today, and I requested that Erica, our nurse extraordinaire, change the dressing an hour early so that he could see the wound. I just really want him to see the wound so that he'd have an idea of when a shunt could go in. He was pleased with the progress, and there's now only one little place in the middle where he thinks that muscle and skin are still separated. He thinks the white stuff with a little black coming through in the middle is necrotic (dead) tissue and that it's just going to come up on its own. One funny thing I've learned about the NICU is that over-the-counter drugs like Mylicon and hydrogen peroxide have to be ordered from the pharmacy. So when he asked for some peroxide so that he could "play" with this part of the wound, it was going to take an act of Congress to get peroxide quickly. You could tell he was irritated with this, but I know he understands why. He used the blunt wooden end of a sterile cotton swab and scraped around in there trying to get some of that tissue to come loose, and the peroxide would have helped that. Even though I've been looking at this incision for 4 weeks now (a month!!), I still couldn't watch him scraping around in that wound with a piece of wood! We also asked if they would culture the incision again to test for more infection-causing bacteria, and he said no - they would only do it if it starting getting runny and oozing again.
Still no word on when the shunt will be, but we expected this. I have a feeling that it's going to be last-minute...Dr. Troup's going to walk in one day...let's say Friday, for example...and say, "Well, based on how the incision looks and how full her head is, let's do the shunt Monday." (DO NOT SPREAD RUMORS THAT THE SHUNT WILL GO IN ON MONDAY. THIS IS PURELY HYPOTHETICAL!) As I've already said, Dr. Troup is kind of a big deal around here, and we still continue to learn that more and more. Even though he does a very specific thing for the hospital, he's still a big deal because there aren't a whole lot of doctors out there who do what he does. And do it so well. So I think he can get surgeries scheduled pretty quickly without anyone giving him a hard time.
I'm a little nervous about tonight's nurse because she had no idea how to feed Emma. None. She has already spoken with one of the other nurses who has only had Emma once about helping care for her, including how to change her dressing. YIKES! She was anxious to watch how Russell and I did it. I'm going to have trouble falling asleep tonight. Once I do fall asleep, I'll sleep like a log, but as soon as my eyes pop open in the morning, I'll be calling to see how it went. I suppose I need to have ANOTHER conversation with a supervisor about the night nurses. We've got the day nurses pretty well under control, plus we're here during the day just in case a nurse isn't sure about something. But at nighttime, we don't have the same nurses NOR are we here. Scary. I'm not really being a control freak about this, but there are lots of things going on with Emma that are out-of-the ordinary, and new nurses are sometimes overwhelmed by her. The fact that she has a PICC in her head, eats on her tummy, and gets doses of Heparin flushed through her PICC (which no other babies get) are 3 things right off the bat that throw new nurses off a little. I know the nurses are a lot more knowledgeable than I, but there are idiosyncrasies about Emma that new nurses ask us...it would just be easier on my mind if she had nurses who didn't need to ask us questions about how to care for her.
This video is a little dark because she's sleeping, but it's a snippet of how much noise Emma makes when she sleeps. Take this noise, plus the 3 or 4 seconds it took me to get to her with the camera, times every 5 to 10 minutes. Thank goodness for the video monitor at home, or we'd be up every 10 minutes checking on her. We're going to be heavy sleepers once we get used to all this noise at night. She sounds like a creaky door in a haunted house, doesn't she?
For the second day in a row, Emma's gained 4 ounces in a day. She now weighs 8 pounds, 13 ounces. She's going to outgrow all our newborn diapers and clothes before we even get her home! The good news is that the NICU doctors have told us time and time again that good eating and growth is the best thing to help babies heal. Believe me, homegirl doesn't play around when it comes to eating. Praise God that she enjoys her food...this is one of His ways of taking care of her.
We learned today that we'll probably have to have a car bed for her to travel in for a while. I don't know how long "a while" is, but this is something we'll just borrow from the hospital I think. Because of where the incision is and how babies lie in an infant carrier, she probably can't go in her infant carrier. So it looks like she'll be a shut-in until she can travel for a good period of time in the infant carrier...because even if she can travel in the car with a car bed, what do we do with her once we get where we're going?? The social worker assigned to us is very proactive and is already thinking of things to address with Dr. Troup regarding helping us care for her when we leave.
Dr. Troup and his nurse came by today, and I requested that Erica, our nurse extraordinaire, change the dressing an hour early so that he could see the wound. I just really want him to see the wound so that he'd have an idea of when a shunt could go in. He was pleased with the progress, and there's now only one little place in the middle where he thinks that muscle and skin are still separated. He thinks the white stuff with a little black coming through in the middle is necrotic (dead) tissue and that it's just going to come up on its own. One funny thing I've learned about the NICU is that over-the-counter drugs like Mylicon and hydrogen peroxide have to be ordered from the pharmacy. So when he asked for some peroxide so that he could "play" with this part of the wound, it was going to take an act of Congress to get peroxide quickly. You could tell he was irritated with this, but I know he understands why. He used the blunt wooden end of a sterile cotton swab and scraped around in there trying to get some of that tissue to come loose, and the peroxide would have helped that. Even though I've been looking at this incision for 4 weeks now (a month!!), I still couldn't watch him scraping around in that wound with a piece of wood! We also asked if they would culture the incision again to test for more infection-causing bacteria, and he said no - they would only do it if it starting getting runny and oozing again.
Still no word on when the shunt will be, but we expected this. I have a feeling that it's going to be last-minute...Dr. Troup's going to walk in one day...let's say Friday, for example...and say, "Well, based on how the incision looks and how full her head is, let's do the shunt Monday." (DO NOT SPREAD RUMORS THAT THE SHUNT WILL GO IN ON MONDAY. THIS IS PURELY HYPOTHETICAL!) As I've already said, Dr. Troup is kind of a big deal around here, and we still continue to learn that more and more. Even though he does a very specific thing for the hospital, he's still a big deal because there aren't a whole lot of doctors out there who do what he does. And do it so well. So I think he can get surgeries scheduled pretty quickly without anyone giving him a hard time.
I'm a little nervous about tonight's nurse because she had no idea how to feed Emma. None. She has already spoken with one of the other nurses who has only had Emma once about helping care for her, including how to change her dressing. YIKES! She was anxious to watch how Russell and I did it. I'm going to have trouble falling asleep tonight. Once I do fall asleep, I'll sleep like a log, but as soon as my eyes pop open in the morning, I'll be calling to see how it went. I suppose I need to have ANOTHER conversation with a supervisor about the night nurses. We've got the day nurses pretty well under control, plus we're here during the day just in case a nurse isn't sure about something. But at nighttime, we don't have the same nurses NOR are we here. Scary. I'm not really being a control freak about this, but there are lots of things going on with Emma that are out-of-the ordinary, and new nurses are sometimes overwhelmed by her. The fact that she has a PICC in her head, eats on her tummy, and gets doses of Heparin flushed through her PICC (which no other babies get) are 3 things right off the bat that throw new nurses off a little. I know the nurses are a lot more knowledgeable than I, but there are idiosyncrasies about Emma that new nurses ask us...it would just be easier on my mind if she had nurses who didn't need to ask us questions about how to care for her.
This video is a little dark because she's sleeping, but it's a snippet of how much noise Emma makes when she sleeps. Take this noise, plus the 3 or 4 seconds it took me to get to her with the camera, times every 5 to 10 minutes. Thank goodness for the video monitor at home, or we'd be up every 10 minutes checking on her. We're going to be heavy sleepers once we get used to all this noise at night. She sounds like a creaky door in a haunted house, doesn't she?
Monday, April 12, 2010
Months and months and months?!
I thought today was going to be uneventful...and I guess it kind of was. Nothing actually happened per se, but we learned some information that the doctors and nurses already knew.
Emma has been a gem today. Well, it's 9:00 pm, and she's doing ok tonight so far, at least. I walked in this morning at 9:30, and she had moved up to the end of the crib about 8 inches. I know her arms aren't terrifically strong, so I know she used her legs, too, to push herself that far. I'm very encouraged that her legs are this strong this early, even if it is just the quad muscles that she was using. The concern about use of her legs has been the lower part of her legs so far. We haven't seen a lot of independent movement from her lower legs and feet...yet. We're praying that God will still develop those muscles and lay His healing hand over her legs, from the knees down.
Dr. Troup came in today, and I gleaned a lot of info from him. First of all, Emma has to be on her antibiotics for the next 7 days. (Quick side note: there's a red splotch where the PICC goes in, and there's a red, raised line running down the side of her head. The nurses don't know what this is, and they're keeping an eye on it. We'll be asking a NICU doctor tomorrow, believe me. Please pray that this isn't something that's inflamed or infected, etc. It's not the actual vein that the PICC is running through.) Dr. Troup said that he's willing to do a shunt even with the PICC in her head; he's really looking out for that incision and making sure that all infection there is gone. He can't do a shunt until the incision is healing enough that she can lie on her back and also be held upright for awhile. So the shunt could conceivably go in at the end of this week...but I still think that's too soon, based on the snail's pace progress the incision is making. I told him that we're glad to not be coming to the hospital to see backward progress anymore, but it's still not great because we're in a little bit of a holding pattern. He interrupted me and said, "No, you're in a SUBSTANTIAL holding pattern...but it's okay. The wound is going to take months and months and months to heal." OH. MY. GOSH. He also said that he can still do a bedside tap to drain some fluid, even with the PICC in.
This leads me to our next educational conversation with our fantastic nurse, Erica. Basically, we'll be trained on how to dress Emma's wound. We'll probably have to continue to put medicine on it. We won't be able to bathe her or even sponge bathe her in enough water that will run and drip onto the incision. Just wiping her down with a damp washcloth. Erica also told us that after Emma's shunt surgery, she'll most likely be back in NICU I for 1-3 days and then in NICU II for 1-3 days. But that's just from the shunt; if they're still not ready to send us home because of the incision, we'll be here longer.
Our little Emma is eating like a horse, and even the wonderful nurses who have had her time and time again are amazed at how quickly she eats. She has been gaining 2 ounces a day here lately, and tonight she gained 4 ounces from yesterday. She now weighs 8 pounds 9 ounces, and she was only 7 pounds 2 ounces when she was born 4 weeks ago. Sunday night was measurement night, and she was 20 1/2 inches long, or 3/4 inches longer than when she was born. I think you can attribute a little bit of this weight to fluid buildup in her brain, but not a whole lot! Here's a shot of our chubby baby...check out that belly!
Emma has been a gem today. Well, it's 9:00 pm, and she's doing ok tonight so far, at least. I walked in this morning at 9:30, and she had moved up to the end of the crib about 8 inches. I know her arms aren't terrifically strong, so I know she used her legs, too, to push herself that far. I'm very encouraged that her legs are this strong this early, even if it is just the quad muscles that she was using. The concern about use of her legs has been the lower part of her legs so far. We haven't seen a lot of independent movement from her lower legs and feet...yet. We're praying that God will still develop those muscles and lay His healing hand over her legs, from the knees down.
Dr. Troup came in today, and I gleaned a lot of info from him. First of all, Emma has to be on her antibiotics for the next 7 days. (Quick side note: there's a red splotch where the PICC goes in, and there's a red, raised line running down the side of her head. The nurses don't know what this is, and they're keeping an eye on it. We'll be asking a NICU doctor tomorrow, believe me. Please pray that this isn't something that's inflamed or infected, etc. It's not the actual vein that the PICC is running through.) Dr. Troup said that he's willing to do a shunt even with the PICC in her head; he's really looking out for that incision and making sure that all infection there is gone. He can't do a shunt until the incision is healing enough that she can lie on her back and also be held upright for awhile. So the shunt could conceivably go in at the end of this week...but I still think that's too soon, based on the snail's pace progress the incision is making. I told him that we're glad to not be coming to the hospital to see backward progress anymore, but it's still not great because we're in a little bit of a holding pattern. He interrupted me and said, "No, you're in a SUBSTANTIAL holding pattern...but it's okay. The wound is going to take months and months and months to heal." OH. MY. GOSH. He also said that he can still do a bedside tap to drain some fluid, even with the PICC in.
This leads me to our next educational conversation with our fantastic nurse, Erica. Basically, we'll be trained on how to dress Emma's wound. We'll probably have to continue to put medicine on it. We won't be able to bathe her or even sponge bathe her in enough water that will run and drip onto the incision. Just wiping her down with a damp washcloth. Erica also told us that after Emma's shunt surgery, she'll most likely be back in NICU I for 1-3 days and then in NICU II for 1-3 days. But that's just from the shunt; if they're still not ready to send us home because of the incision, we'll be here longer.
Our little Emma is eating like a horse, and even the wonderful nurses who have had her time and time again are amazed at how quickly she eats. She has been gaining 2 ounces a day here lately, and tonight she gained 4 ounces from yesterday. She now weighs 8 pounds 9 ounces, and she was only 7 pounds 2 ounces when she was born 4 weeks ago. Sunday night was measurement night, and she was 20 1/2 inches long, or 3/4 inches longer than when she was born. I think you can attribute a little bit of this weight to fluid buildup in her brain, but not a whole lot! Here's a shot of our chubby baby...check out that belly!
Sunday, April 11, 2010
I'm not patient enough to be in the medical field.
As our nurse said today, our whole country wants what we want, and we want it now. I want sweet Emary's wound to heal NOW. And when I see progress from one day to the next, I expect to see it every day after that. Unfortunately, that's not the reality of our situation. I feel like Emma's incision isn't really getting any better...but again, at least it's not getting any worse. I just can't imagine how long it's going to take to heal. A few days ago there was a round white part in the middle of the wound that looked different than the rest of it. The nurse asked Dr. Troup what that was, and he said necrotic tissue (this is dead tissue, for those of us who took biology for non-majors). Yesterday and today I noticed a little sliver of something black in there. Black! That scared me, and today the same nurse who asked the doctor about the white stuff noticed it, too. She said that black usually means necrotic tissue, and she's thinking that it's tissue underneath that's dying and is coming up to the surface. Dying tissue doesn't sound great, but this can result from infection. Let's hope that all this tissue death is over with! This was the deepest part of the wound, so hopefully, in my medically uneducated mind, this means that the deepest part of the wound is finally healing, filling in with good stuff, and pushing out the bad!
Ok, enough about the nasty incision. Emma was so well-behaved today. She's even getting a little more patient about eating. She's very aware when it's time to eat on her 4-hour schedule, but she's less fussy about it while we're getting the bottle and her pillow ready. Ha, that sounds a spoiled luxurious life, doesn't it - getting her pillow ready! The irony is that spoiled and luxurious would be getting to feed her like a regular baby. That day is coming...soon I hope.
My worry for the day is that Emma has to have the state screening they give all newborns for the third time. The first test came back abnormal, but they anticipated it because of the meds she was on. Apparently, the second one has come back abnormal, too, and she wasn't on any kind of meds when they conducted that bloodwork. I wasn't there when the NICU doctor came by today, and he didn't document much about it Emma's chart, so I don't really know what that's all about. If you're looking for something specific (and additional) to pray for, please pray that this test comes back ok - I just can't handle something else going wrong. Especially since these tests are designed to detect endocrine, blood cell, and metabolic disorders that can be deadly if not detected (and hopefully treated/cured) now.
No pictures for a couple days...when not much is happening, there's not a lot of new stuff to take pictures of!
Ok, enough about the nasty incision. Emma was so well-behaved today. She's even getting a little more patient about eating. She's very aware when it's time to eat on her 4-hour schedule, but she's less fussy about it while we're getting the bottle and her pillow ready. Ha, that sounds a spoiled luxurious life, doesn't it - getting her pillow ready! The irony is that spoiled and luxurious would be getting to feed her like a regular baby. That day is coming...soon I hope.
My worry for the day is that Emma has to have the state screening they give all newborns for the third time. The first test came back abnormal, but they anticipated it because of the meds she was on. Apparently, the second one has come back abnormal, too, and she wasn't on any kind of meds when they conducted that bloodwork. I wasn't there when the NICU doctor came by today, and he didn't document much about it Emma's chart, so I don't really know what that's all about. If you're looking for something specific (and additional) to pray for, please pray that this test comes back ok - I just can't handle something else going wrong. Especially since these tests are designed to detect endocrine, blood cell, and metabolic disorders that can be deadly if not detected (and hopefully treated/cured) now.
No pictures for a couple days...when not much is happening, there's not a lot of new stuff to take pictures of!
Saturday, April 10, 2010
Playing frisbee golf is hazardous for new moms
Some of you may remember (or may have even been there..cough,MageeandTyler,cough) when I broke my right wrist in graduate school at Clemson. I'd like to say I was saving a baby from a burning building or something heroic like that. What actually happened was that my friend Magee and I were playing frisbee golf with a few other people, and we got to the hole first, so we were tossing a frisbee back and forth. I was running really fast on wet, slick brick to catch a long frisbee toss from Magee, slid and fell back, and caught myself on my wrists. I know people TELL you not to catch yourself on your wrists, but that's a lot easier said than done. Anyway, I broke my wrist clean through the thickest part of the bone, and I don't have any trouble with it at all now. That is, until I became a mom who has to feed her daughter on her stomach, on a pillow in my lap. Depending on how Emma wants to turn her head for that particular feeding, we alternate which hand feeds and which hand goes under her head to support it and turn it enough so that she can get her mouth around the bottle. Well I can really only comfortably feed Emma with my left hand under her head because my right wrist can't rotate enough to prop her face/head up enough. So I blame Magee for throwing me that long pass...thanks, Magee, now I can't feed my baby. Ha!
Anyway, no visit from Dr. Troup today. The pediatric infectious disease and NICU doctors came by together to check out Emma's incision. I wasn't here, but the pediatric infectious disease doctor's notes say that the wound is smaller. I'm not so sure I buy off on that - looks the same size to me - a 3 in. equilateral triangle, same as yesterday and the day before. There's a use for 9th grade geometry I didn't anticipate. Both doctors were pleased with the lessening amount of infected-looking nastiness (those are medical terms - look it up). I personally am concerned about this one little spot in the middle that appears to still open up to the muscle underneath - it's not attached to the rest of the healing skin and tissue that's growing, and that worries me. I hope to be around tomorrow or Monday when some combination of Emma's many doctors are looking at it to ask them what they think.
Emma had a GREAT day today, as far as her feedings and demeanor go. She is moving her head like you wouldn't believe. There's a chance that when she comes home, she'll have to sleep on her stomach for a week or two still. Normally, I'd be freaking out about that, but I'm not that worried now - she can move her head from side to side like a champ (and fast!), and she's so used to sleeping on one side of her face by now.
All in all, today was pretty uneventful. I'd like to be able to say that Emary's improving, but at least things aren't getting worse...that's how it has been for a while now. Our nurses have been great. I probably shouldn't say that because I don't yet know who her night nurse will be from 11 pm to 7 am. This is a pretty important nurse because she changes the dressing on the wound, and there are some people around here I wouldn't even want pumping my gas, much less treating my daughter's infected wound. In the end, though, we look back at where we were a week ago and thank our Lord that several problems peripheral to the infected wound have been resolved.
Thank you so much to all of you have not only kept us in your prayers, but have TOLD us that as well, through emails, texts, cards, etc. Each morning we wake up is a scary morning, knowing that the day to come holds all kinds of possibilities for success or failure. So even though I'm sure it gets old for a lot of you, it never gets old for us to hear the support and feel the blessing that each of you represents.
Anyway, no visit from Dr. Troup today. The pediatric infectious disease and NICU doctors came by together to check out Emma's incision. I wasn't here, but the pediatric infectious disease doctor's notes say that the wound is smaller. I'm not so sure I buy off on that - looks the same size to me - a 3 in. equilateral triangle, same as yesterday and the day before. There's a use for 9th grade geometry I didn't anticipate. Both doctors were pleased with the lessening amount of infected-looking nastiness (those are medical terms - look it up). I personally am concerned about this one little spot in the middle that appears to still open up to the muscle underneath - it's not attached to the rest of the healing skin and tissue that's growing, and that worries me. I hope to be around tomorrow or Monday when some combination of Emma's many doctors are looking at it to ask them what they think.
Emma had a GREAT day today, as far as her feedings and demeanor go. She is moving her head like you wouldn't believe. There's a chance that when she comes home, she'll have to sleep on her stomach for a week or two still. Normally, I'd be freaking out about that, but I'm not that worried now - she can move her head from side to side like a champ (and fast!), and she's so used to sleeping on one side of her face by now.
All in all, today was pretty uneventful. I'd like to be able to say that Emary's improving, but at least things aren't getting worse...that's how it has been for a while now. Our nurses have been great. I probably shouldn't say that because I don't yet know who her night nurse will be from 11 pm to 7 am. This is a pretty important nurse because she changes the dressing on the wound, and there are some people around here I wouldn't even want pumping my gas, much less treating my daughter's infected wound. In the end, though, we look back at where we were a week ago and thank our Lord that several problems peripheral to the infected wound have been resolved.
Thank you so much to all of you have not only kept us in your prayers, but have TOLD us that as well, through emails, texts, cards, etc. Each morning we wake up is a scary morning, knowing that the day to come holds all kinds of possibilities for success or failure. So even though I'm sure it gets old for a lot of you, it never gets old for us to hear the support and feel the blessing that each of you represents.
Friday, April 9, 2010
Drug overdoses happen to celebrities of all ages...remember?
Today has been a pretty decent day. Good nurses, good feedings, minimal fussiness.
Only a few, relatively minor events...one was that Dr. Troup decided he wanted to dress Emma's wound a little differently because he wants the nastiness to come out quicker. There's no real change in how her wound looks, according to the nurse (I wasn't here when it was changed at 4 am and 4 pm). This is a little disappointing because we saw a pretty decent improvement each day from Monday through yesterday. Dr. Troup still says her head feels full, but we're ok.
The pediatric infectious disease doctor came in, too, and she said the culture of Emma's wound has grown a trace amount of bacteria that's found in fecal matter. Because it's such a small amount, they're not that concerned about it. However, if the incision isn't healing like they think it should in the 9 days that she has left to be on antibiotics, they'll culture it again and see what's growing that's preventing it from healing.
As I said yesterday, the PICC in Emma's head is in the last resort vein in the last resort location on her body. Since it's been in, it has gotten REALLY close to being clogged 3 times. This would be catastrophic because there's nowhere else to adminster the antibiotics...so she went on ANOTHER medicine today that runs through the IV to help keep it clear. Now I want you to think back to celebrity news from November 2007...remember when Dennis Quaid's newborn twins were given 1,000 times the dose they were supposed to get of some kind of medicine? Yep, it's this same medicine that Emma's now getting. I do appreciate tonight's nurse calling the pharmacy just to check that she is getting the correct amount. She even said, "I'm going to call the pharmacy to check on this dosage just to make sure we don't have a Dennis Quaid incident on our hands." Thank you, God, for a careful, precautious nurse!
Emma officially hit 8 pounds last night; tonight she was 8 pounds, 3 ounces. They'll measure her length again on Sunday night.
These two pictures are of Emma relaxing with her daddy. This first one is the semi-upright position that we have to resort to sometimes to get her to burp. Sometimes, like tonight, it still doesn't work. She either belches like a fat, beer-drinking, NASCAR-watching man, or doesn't burp at all. I know it looks like Russell's hand is on top of her wound, but it's really not - we have to be very careful to support her butt so that gravity isn't pulling her body weight and the wound down, but still not push up on it with our hands at the same time.
This one is how we'd all like to sleep - sprawled out on a pillow that's bigger than we are, being rocked in someone's lap. At least she's got comfortable sleep going for her.
Side note: I have to get my little dig in about NASCAR - I hate it; Russell enjoys it. Oh, and my friend Chuck works for Aflac racing. I've got to voice my opinion as much as possible on this topic. Oh wait, I WILL say this - on race days, Chuck and his wife, Terri, dress their precious 9-month-old son in cute and hilarious Carl Edwards/Aflac clothes that are sent to Chuck at work. That's just funny and really cute, even to a NASCAR naysayer.
Only a few, relatively minor events...one was that Dr. Troup decided he wanted to dress Emma's wound a little differently because he wants the nastiness to come out quicker. There's no real change in how her wound looks, according to the nurse (I wasn't here when it was changed at 4 am and 4 pm). This is a little disappointing because we saw a pretty decent improvement each day from Monday through yesterday. Dr. Troup still says her head feels full, but we're ok.
The pediatric infectious disease doctor came in, too, and she said the culture of Emma's wound has grown a trace amount of bacteria that's found in fecal matter. Because it's such a small amount, they're not that concerned about it. However, if the incision isn't healing like they think it should in the 9 days that she has left to be on antibiotics, they'll culture it again and see what's growing that's preventing it from healing.
As I said yesterday, the PICC in Emma's head is in the last resort vein in the last resort location on her body. Since it's been in, it has gotten REALLY close to being clogged 3 times. This would be catastrophic because there's nowhere else to adminster the antibiotics...so she went on ANOTHER medicine today that runs through the IV to help keep it clear. Now I want you to think back to celebrity news from November 2007...remember when Dennis Quaid's newborn twins were given 1,000 times the dose they were supposed to get of some kind of medicine? Yep, it's this same medicine that Emma's now getting. I do appreciate tonight's nurse calling the pharmacy just to check that she is getting the correct amount. She even said, "I'm going to call the pharmacy to check on this dosage just to make sure we don't have a Dennis Quaid incident on our hands." Thank you, God, for a careful, precautious nurse!
Emma officially hit 8 pounds last night; tonight she was 8 pounds, 3 ounces. They'll measure her length again on Sunday night.
These two pictures are of Emma relaxing with her daddy. This first one is the semi-upright position that we have to resort to sometimes to get her to burp. Sometimes, like tonight, it still doesn't work. She either belches like a fat, beer-drinking, NASCAR-watching man, or doesn't burp at all. I know it looks like Russell's hand is on top of her wound, but it's really not - we have to be very careful to support her butt so that gravity isn't pulling her body weight and the wound down, but still not push up on it with our hands at the same time.
This one is how we'd all like to sleep - sprawled out on a pillow that's bigger than we are, being rocked in someone's lap. At least she's got comfortable sleep going for her.
Side note: I have to get my little dig in about NASCAR - I hate it; Russell enjoys it. Oh, and my friend Chuck works for Aflac racing. I've got to voice my opinion as much as possible on this topic. Oh wait, I WILL say this - on race days, Chuck and his wife, Terri, dress their precious 9-month-old son in cute and hilarious Carl Edwards/Aflac clothes that are sent to Chuck at work. That's just funny and really cute, even to a NASCAR naysayer.
Thursday, April 8, 2010
What does a mom have to do to stay informed?
I left off on last night's blog saying that I was going to call the hospital to see how Emma's new IV was and if she was fussy after giving her Mylicon just before we left the hospital. The fussiness wasn't a problem, but the IV was. Apparently, all her veins were "blown," according to the nurse. The short-term IV's have temporarily worn out her accessible veins, and they had to try a PICC (a long-term IV). The problem with the PICC is that it would have to go through the only place where the veins aren't worn out - her head. Dr. Troup doesn't allow PICCs or IV's in his babies' heads because he doesn't want any risk of infection in there before or after he puts in shunts. So last night the nurse had to track down a NICU doctor, who then tracked down Dr. Troup to try to get his permission to get a PICC in. They did all this between 9 and 11 because Emma had to have one antibiotic at 9ish and the other at 3 am. They temporarily gave her the 2 antibiotics with a shot, and this afternoon they put the PICC in Emma's head. The PICC is a pretty big deal - so big, in fact, that I have to sign a consent form. And also a big deal because I know Dr. Troup doesn't normally allow them. But the ONLY way I knew about all this important stuff is because I called. If I hadn't called, they would have come looking for me this morning and scared the daylights out of my mom and mother-in-law probably because, again, this is a pretty big deal. Needless to say, I have requested to speak to a nurse supervisor AGAIN because this was only one of the many issues I had with last night's nurse.
I spoke with Dr. Troup's nurse this morning, and she and Dr. Troup both spoke with the grandmas today. It's not quite as big of a deal to have the PICC in Emma's head because she doesn't have the shunt yet. But once she's done with the antibiotics, that PICC will come out immediately. Dr. Troup and his nurse both thought her incision looked much, much better. I, personally, didn't think it had changed a whole lot from yesterday, but they were quite encouraged. The center of the hole is filling up with good stuff - skin, good tissue, etc. You can still see a little infection here and there, but it definitely looks better than it did a few days ago. The opening/hole is still about 3 inches wide by 3 inches long. The pediatric infectious disease doctor came by (there's a doctor for everything, I tell you), and she said that Emma needs to be on the antibiotics for 10 more days. 10 MORE! Which I'm pretty sure means that the shunt won't go in until after that. I guess we'll be here for 2 more weeks. From today. But that's just a guess. They didn't get the PICC in as deep as they wanted, but it goes 14cm deep in a vein, which is about to her collarbone. They hope that will be good enough for 10 more days. They're also going to ask a lab somewhere if they can swab the incision to see if spinal fluid is leaking. That's all we need. I don't think there's any reason to believe that it is, but they just want to be sure.
Emma had a few fussy moments today, and I only saw a little bit of them. Apparently she needed some Mylicon after her 8:00 am and pm feedings, but I wasn't around for either of those fits.
This picture is a shot of Emma's first hair accessory. I don't even want to think about how they're going to get all that tape off her head without ripping out her hair. Oh! Her hair is starting to turn strawberry blonde...there's only one person in our families with red hair - Russell's grandmother. Here's the amazing part - sweet Grandma (and I mean, SWEET, SWEET lady) has Alzheimer's. Not too bad, but it's there. She told me a few months ago that she wanted a redhead. I wasn't sure if she was joking around with me or if it was the Alzheimer's talking. But here we are looking at increasingly strawberry-blonde-colored hair! I wonder if it'll stay that way! Since we were born, mine has always been blonde, and Russell's has always been brown...
I spoke with Dr. Troup's nurse this morning, and she and Dr. Troup both spoke with the grandmas today. It's not quite as big of a deal to have the PICC in Emma's head because she doesn't have the shunt yet. But once she's done with the antibiotics, that PICC will come out immediately. Dr. Troup and his nurse both thought her incision looked much, much better. I, personally, didn't think it had changed a whole lot from yesterday, but they were quite encouraged. The center of the hole is filling up with good stuff - skin, good tissue, etc. You can still see a little infection here and there, but it definitely looks better than it did a few days ago. The opening/hole is still about 3 inches wide by 3 inches long. The pediatric infectious disease doctor came by (there's a doctor for everything, I tell you), and she said that Emma needs to be on the antibiotics for 10 more days. 10 MORE! Which I'm pretty sure means that the shunt won't go in until after that. I guess we'll be here for 2 more weeks. From today. But that's just a guess. They didn't get the PICC in as deep as they wanted, but it goes 14cm deep in a vein, which is about to her collarbone. They hope that will be good enough for 10 more days. They're also going to ask a lab somewhere if they can swab the incision to see if spinal fluid is leaking. That's all we need. I don't think there's any reason to believe that it is, but they just want to be sure.
Emma had a few fussy moments today, and I only saw a little bit of them. Apparently she needed some Mylicon after her 8:00 am and pm feedings, but I wasn't around for either of those fits.
This picture is a shot of Emma's first hair accessory. I don't even want to think about how they're going to get all that tape off her head without ripping out her hair. Oh! Her hair is starting to turn strawberry blonde...there's only one person in our families with red hair - Russell's grandmother. Here's the amazing part - sweet Grandma (and I mean, SWEET, SWEET lady) has Alzheimer's. Not too bad, but it's there. She told me a few months ago that she wanted a redhead. I wasn't sure if she was joking around with me or if it was the Alzheimer's talking. But here we are looking at increasingly strawberry-blonde-colored hair! I wonder if it'll stay that way! Since we were born, mine has always been blonde, and Russell's has always been brown...
Wednesday, April 7, 2010
I sure wish today had ended better than it started...because it started pretty well.
As I type this blog at home, Emma is having her fourth IV put in since last Thursday. The third one just went in last night, and it's already gotten clogged. Prior to the IV going in tonight, she had ceased screaming for about 4 minutes. That was our cue to leave. We fed her at 8:00 tonight, and she was ok for a little while...then the screaming ensued. She also had a fit after she ate at noon, and we gave her Mylicon. It worked then...not so sure if it worked tonight. It sure did seem to take a while to kick in, and I'm going to call the hospital after I finish the blog to see if she stopped screaming. On top of that, I'm not crazy about the nurse we left her with. Despite the sign hung over her crib that says, hugely, "Delicate surgical incision," this nurse didn't quite seem to understand what we're dealing with. For you prayer warriors out there, please, please pray that that nurse hasn't harmed our baby. Anyway, you moms out there: if Mylicon worked on your kids (and I know it's not for everyone), how long did it take to really kick in? Emma's lying on her tummy, so I don't know if it will take even longer for her.
By the way, these tummy problems she's having all started when her new formula started on Sunday. New formula that I've asked 2 NICU doctors, 1 nurse practitioner, and 3 nurses to change. I would give anything for my daughter to not hurt, but all this screaming is her own version of "I told you so."
Dr. Troup sent his nurse in today to check on Emma's incision - this was both good and bad news. What do you want first? Let's start with bad and try to end this blog on a good note...since we're not seeing much good lately. When the nurse peeled back the dressing, we noticed that the opening had spread in a new place that used to be nice and sealed up. Yes, the incision has opened up even more after 2 days of topical medication and 6 days of antibiotics. Dr. Troup's nurse and our NICU nurse said it was probably because the new bacteria they identified 3 days ago has still been attacking the wound and skin, and the new antibiotics haven't had a chance to kill it yet. It's scary to think that bacteria has been attacking my 3-week-old daughter's skin and tissue. My insurance company isn't thrilled about that, either, by the way...nor were they too pleased when I informed them that a nurse yanked Emma's legs up over her head. So we'll see what happens there...now for the good news - the rest of the incision looked ok. Not great, but ok. We can definitely tell that it's not as deep, and it's filling in with pink tissue and skin, and the gooey infection is gone. There's still some white goo in there, but it's good stuff, apparently. Although this is good news, we're still very, very far from complete healing. As in, weeks.
This picture is funny (to us, at least) and sad at the same time. It's funny because Emma has no idea what to do with her legs when she's not on her stomach. It's sad because Emma has no idea what to do with her legs BECAUSE she's on her stomach all the time. Russell and his mom put her on her side to change her position for a bit, and up came the legs. This is how she prefers to be, I think, because she spent the last few months inside me with her feet up over her head.
One thing I want to point out in this picture is that her feet are wrapped with little strips of gauze. I mentioned this in a previous post - they're wrapped to keep her feet in more of a flexed position and to keep them more turned out than turned in. The need to flex her feet is a result of lying on her stomach - her feet then have the tendency to go into a pointed position. When they go into a pointed position, they also have the tendency to turn in. The big thing there, though, is that spina bifida kids' feet have a major tendency to turn in. So that's the purpose of those little ankle wraps.
As I type this blog at home, Emma is having her fourth IV put in since last Thursday. The third one just went in last night, and it's already gotten clogged. Prior to the IV going in tonight, she had ceased screaming for about 4 minutes. That was our cue to leave. We fed her at 8:00 tonight, and she was ok for a little while...then the screaming ensued. She also had a fit after she ate at noon, and we gave her Mylicon. It worked then...not so sure if it worked tonight. It sure did seem to take a while to kick in, and I'm going to call the hospital after I finish the blog to see if she stopped screaming. On top of that, I'm not crazy about the nurse we left her with. Despite the sign hung over her crib that says, hugely, "Delicate surgical incision," this nurse didn't quite seem to understand what we're dealing with. For you prayer warriors out there, please, please pray that that nurse hasn't harmed our baby. Anyway, you moms out there: if Mylicon worked on your kids (and I know it's not for everyone), how long did it take to really kick in? Emma's lying on her tummy, so I don't know if it will take even longer for her.
By the way, these tummy problems she's having all started when her new formula started on Sunday. New formula that I've asked 2 NICU doctors, 1 nurse practitioner, and 3 nurses to change. I would give anything for my daughter to not hurt, but all this screaming is her own version of "I told you so."
Dr. Troup sent his nurse in today to check on Emma's incision - this was both good and bad news. What do you want first? Let's start with bad and try to end this blog on a good note...since we're not seeing much good lately. When the nurse peeled back the dressing, we noticed that the opening had spread in a new place that used to be nice and sealed up. Yes, the incision has opened up even more after 2 days of topical medication and 6 days of antibiotics. Dr. Troup's nurse and our NICU nurse said it was probably because the new bacteria they identified 3 days ago has still been attacking the wound and skin, and the new antibiotics haven't had a chance to kill it yet. It's scary to think that bacteria has been attacking my 3-week-old daughter's skin and tissue. My insurance company isn't thrilled about that, either, by the way...nor were they too pleased when I informed them that a nurse yanked Emma's legs up over her head. So we'll see what happens there...now for the good news - the rest of the incision looked ok. Not great, but ok. We can definitely tell that it's not as deep, and it's filling in with pink tissue and skin, and the gooey infection is gone. There's still some white goo in there, but it's good stuff, apparently. Although this is good news, we're still very, very far from complete healing. As in, weeks.
This picture is funny (to us, at least) and sad at the same time. It's funny because Emma has no idea what to do with her legs when she's not on her stomach. It's sad because Emma has no idea what to do with her legs BECAUSE she's on her stomach all the time. Russell and his mom put her on her side to change her position for a bit, and up came the legs. This is how she prefers to be, I think, because she spent the last few months inside me with her feet up over her head.
One thing I want to point out in this picture is that her feet are wrapped with little strips of gauze. I mentioned this in a previous post - they're wrapped to keep her feet in more of a flexed position and to keep them more turned out than turned in. The need to flex her feet is a result of lying on her stomach - her feet then have the tendency to go into a pointed position. When they go into a pointed position, they also have the tendency to turn in. The big thing there, though, is that spina bifida kids' feet have a major tendency to turn in. So that's the purpose of those little ankle wraps.
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