No. Body. Move.

Ssshhhh...she's asleep.

Today was a wonderful day of peace for me until about 4:00 pm. The grandmothers looked after Emma so that I could sleep in, take a long walk to try to start working off this baby weight (as if I don't have enough to deal with), and just generally get some things done. One thing of note happened before I arrived: Emma got fussy after her 12:00 feeding. More on this in a second...

When I DID walk in a little before 4, the nurse was changing Emma's dressing on her incision. It had not even been 24 hours since the medicine (aka, booger gel) had been on her incision. WOW, I can't believe how it looked today. The opening was still HUGE, but it looked so clean. This is going to be gross, but I'm going there - the edges of the incision were the good kind of pink that means skin and tissue is growing. The biggest thing is that it didn't look as deep, and I could see some more of the good pink skin/tissue coming up through the bottom of the incision. Even though I thought the overall size of the area looked bigger, the quality of the wound looked better. The nurse was encouraged, too, but we'll see what the wound care people say. I don't have a strong stomach for this kind of stuff, but I think I've become desensitized to Emma's medical issues. My mom, on the other hand, had a few moments today where she wanted to look at the incision but then started to feel sick. But she somehow didn't have a problem looking right at the giant needle sticking out of my abdomen when I had an amniocentesis. Incisions from the 2 surgeries I've had didn't bother her, but the blood and guts do, I guess. Dr. Troup didn't come by today; I know he had some surgeries, and I don't really know what he could/would have done if he HAD come by.

At 4, I fed Emma, and over the next 2 and a half hours, she cried for about an hour and a half. She was crying as Russell and I left for dinner at 6:30. BUT! The nurse we had is one of our primary nurses, meaning that when she works, she works for us. She knows that Emma isn't a fussy baby, so after we told her about the sudden change in her demeanor, she was proactive about it and spoke to a resident. The change occurred pretty much after Emma's formula changed to something more gentle on her stomach. Let's just say it's gentle coming out, but we weren't so sure it was gentle going in. So the resident prescribed Mylicon (even though it's OTC, any medication in the hospital goes through the pharmacy with a prescription). Emma was a little fussy but not bad after today's 12:00 feeding, VERY angry after the 4:00 feeding, and sleeping like an angel after the 8:00 feeding, which included the Mylicon. Russell and I stayed until about 9:30, and she was sleeping peacefully. I said in the previous paragraph that I've become desensitized to Emma's incision, and this afternoon I felt a little desensitized to her crying...not that I didn't care, but I was so exasperated that I went into robotic mom mode, just rocking Emma and patting her back, knowing that something was wrong that I couldn't fix. It was alarming and disheartening at the same time that I just felt like I had given out and given up...and then the nurse came to my rescue. Hopefully this Mylicon will continue to work and that tonight's relief isn't a fluke. What a blessing the nurse is.

Here's the only shot I got of her today - a brief moment of peace in between the screams. No. Body. Move.

What's with all the screaming? I blame the grandmothers...

I posted last night's blog in the middle of a 4-hour screaming and crying fit. We got home around 12:45 in the morning after Emma finally screamed herself to sleep. And I mean SCREAMING, not fussy, not whiny, but blood-curdling, diversions-aren't-enough type of crying. Tonight was better - only an hour and 15 minutes. But this is NOT our daughter. When and why did she turn into an unhappy, screaming baby??

I blame the grandmothers. For some reason, the grandmothers have had custody of her in the afternoons, and they're sabotaging us. Whatever they're doing with our daughter in the afternoon is turning her against us at night. My sweet husband came to the hospital today and worked about a half day from Emma's room. After last night, we both felt more comfortable with both of us being there for Emma and to talk to the wound care nurse and Dr. Troup when they came by.

I say these things lightly, but I honestly have been ready to break down because there's not much we can do to try to make things better. Plus, like I've said a million times, she's got lots of actual medical problems, so we KNOW something's very wrong to make our happy baby miserable. And consider this - I've seen her get blood taken 3 times and Russell's seen her get a shot; she did not cry at any of this, and she only flinched at the shot. So whatever's wrong now is REALLY painful.

I have a theory on last night's issues: one is gas because she apparently was really tooty this morning! The other is annoying to me because I tried to address it. I told the nurse that I saw some brownish-red smudges on formerly clean blankets in the general vicinity of Emma's IV hand, and she had dried blood on her knuckles. The dried blood could have been from when they put the IV in, but when I questioned the smudges on the blankets, the nurse felt Emma's hand. It wasn't wet with blood, so she blew it off. Lo and behold, this morning the next nurse came in (who is my FAVORITE by far), saw the blood on Emma's hand, pushed on the IV, and "it" came flying out. I don't know if "it" is the IV catheter or blood, and I didn't ask. She confirmed that the IV was leaking and moved it to Emma's foot. I'm not a medical professional or anything, but I tried to tell the nurse that my screaming daughter was smudging blood on things...hmmm, could that possibly mean that the source of the bleeding was the problem?

Tonight, we think that Emma was cold (I'll explain more on that in a bit) and that she's constipated. They changed her formula yesterday, and it's not going well. I'll spare you the details on why it was changed and how it's not going well now.

This morning, the wound care nurse came in to examine Emary's open incision. She walked in, made a face, and said "OH DEAR! THAT'S NOT GOOD." That's not exactly what you want the wound nurse to say, considering that's all she does, every day. Emma's open incision has some serious scabbing around the edges and starting to come across the middle. Those of us with no medical background would think this is a good thing...and we'd be wrong. Mostly. It's really both bad and good. It's bad because it needs to be gone before the skin below it can begin to granulate and grow back together and grow to the muscle underneath. It's good because that means the opening is beginning to dry out. When it was really infected a few days ago, there wasn't much scabbing because the infection makes the incision really wet. Are you grossed out yet? If yes, skip to the next paragraph. If no, read on. The solution is to put this gel/ointment all in the incision (it has drying qualities for the icky stuff in there) and around the incision on the scabs. The wound nurse said it would be two days before we'd really be able to tell a difference, and it would look worse before it would look better. The gel softens the scabs and makes them look like green boogers. Yes, green boogers. On my 3-week-old daughter's back. They'll eventually come off on their own in a few days and then the skin underneath can carry on with its healing. The wound should not get bigger, only grosser-looking for a little while. THEN...HOPEFULLY...we'll see some progress. To cover up this booger gel, Emma has to have some sterile gauze pads placed on it, taped to her skin, and then covered with a mesh...well, tube top basically, that goes all the way around her midsection. All this stuff is changed twice a day. Oh, and there's a second cream that's put on the healthy skin around all that stuff to protect it from being affected by the booger gel. Here are a couple pictures. First of all, notice how completely exhausted I look. So if I don't return your phone call or email, please don't take it personally - I'm barely making it! The other picture is more up close so you can see Emma's first tube top. This is why we thought she might be cold earlier - she's really not wearing a lot of clothing here. Oh, and sorry the pictures are kinda grainy - we didn't use the flash because Emma was actually calm for a brief moment.





They cultured Emma's incision and found a new and more aggressive type of bacteria growing in it. Great. I'll say it AGAIN - the day wouldn't be complete with a setback. I told you to skip to the next paragraph if the one above grossed you out...sorry, this is pretty nasty, too. They've changed one type of antibiotic they're giving her.

Dr. Troup came in to talk to us for a while about what's going on. We asked lots of questions. After meeting with him, I guess you could say we're neither thrilled nor disappointed with his answers. So much of this is wait-and-see, and his hands are tied until this incision starts going places. He won't DARE put a shunt in if there's any infection at all. The incision doesn't have to be completely healed for him to do the shunt surgery, but it has to be on that path. Dr. Troup still doesn't feel that it's necessary to do a bedside tap of the fluid (at least not yet), but we also don't want to take our sweet time with the surgery. We'll have to learn a little about wound care when we bring Emma home, and the scary part: we have to learn how to feel Emma's head and figure out if her shunt is ok for a couple weeks. For example, if it feels sunken in, she's been sitting upright for too long and we have to lay her down. That should be interesting. It's not exactly like telling an adult when and why to lie down or sit up.

Thanks so much to all of you for your support - bringing meals, calling, sending emails, text messages, leaving comments and guestbook messages on the blog, and most importantly, PRAYING FOR US. We appreciate all of this from you, but none of Emma's healing and comfort for us and her can be accomplished without Him.

A day wouldn't be complete without a setback or two.

This blog has been full of pretty bad news lately, with the exception of funny things like me being trapped inside the revolving door and my mom and Russell getting a handfull of poop and/or pee. (You have to know both of them to truly appreciate the hilarity.) I apologize for the bad news, but these are the days of our lives. Today's setbacks are bloody poop and excessive crying. Regarding the poop - gross, I know, but it is what it is. As 2 just-in-case measures, the NICU doctor ordered an xray, and he changed her formula; however, they're pretty sure there's a lesser cause that I won't go into here because I don't want to be one of those moms or old ladies later in life who feels the need to explain in detail every ailment. The xray came back clean, and we think it's just going to happen from time to time. After about 4:00, we've been good on that front.

As for the crying, Emary isn't resting/waking well after she eats. We it's think because she needs to burp big time, and it's just so hard to burp on her tummy. I really want all of you to lay down on your bed on your stomach and imagine drinking from a straw and then burping, too. She had a major breakdown tonight, as did I...simultaneously. And then she wouldn't sleep. At all. There are so many things that could be hurting her, from something as simple as needing to burp to having too much fluid on her brain. We fed her an hour and a half early, and we think that was the simple solution. Gosh, I hope it was...I know that all babies cry, but when so many things are going wrong with your child, you just know that it's not normal baby cries. Maybe there's too much fluid on her brain...maybe Dr. Troup will do a bedside tap tomorrow to release some of the pressure...

Only one episode of diarrhea today, which could have been caused by the antibiotics. Her hiney is healing up nicely from the awful diaper rash, mainly because we've been holding a tube over her butt that blows out pure oxygen to help kill bacteria and keep it very, very dry. But that also means we have to be on our toes to immediately catch any poop that comes out! I just could not be a nurse; this is exhausting.

Earlier in the day, when Emma was actually acting like a happy baby, we got this shot in her Easter bib. Brutal honesty here: it made me so sad to put it on her and take a picture because my baby's first Easter is being spent in the hospital, fighting all kinds of problems. I just want to bring her home and put a bib on her the right way.

Don't try this at home, folks.

I don't even want to think about how much time I spend every day arranging blankets around my child inside her crib. Obviously, Emma's in the NICU, hooked up to breathing monitors, etc., so someone is always "watching" her. But I think this picture would horrify most child-raising experts and a lot of you mothers:



Yes, that's a pillow she sleeps on, covered by a blanket, surrounded by 7 more blankets (you can't see them all - some are buried). Her crib is also the storage area for a couple toys, the occasional hat or socks, and the equivalent of a diaper-changing station. Let's hope Emma can sleep in our crib at home without all this business around her.

After I posted the blog last night, Emma started crying a lot. We had no idea what exactly was bothering her, especially since we're dealing with so many problems right now. (In case you're wondering, here's the list: (1) diaper rash/raw skin down there (2) diarrhea (3) a 2" long x 1" wide x 1/2" deep infected hole at her incision site (4) an uncomfortable, boring state of being on her tummy for 19 days now and (5) increasing fluid on her brain.) Suddenly, last night, she jumped or sneezed or something, and all kinds of goop shot out of her nose. My immediate thought was, "Great. What's this, a sinus infection or a cold?" No, no, it was formula. Because Emma lays on her stomach to eat, the formula sometimes runs up into her nasal cavities. We've all started laughing during taking a drink or gotten pool water up our noses, right? And you know how much that hurts. Emma had formula up in there for a good 30 minutes to an hour. Our nurse was standing right there, grabbed the aspirator, and got even more formula out of her nose. So that was problem number 6 yesterday. We think the solution to that is trying to angle her up as much as possible when feeding her, but we were trying to do that anyway. So let's just hope that we don't deal with that again.

Praise God! I have begged and prayed and pleaded for an answer to at least one of our many problems. Today He blessed us with a nurse and a NICU doctor who decided that piggie Emma Claire is allowed to eat too much. A few days ago, someone at some point wrote in her chart that she can eat however much she wants every 3 to 4 hours. Big mistake. Huge. We're pretty sure that this has been causing an uncomfortably full tummy and some really bad diarrhea. Add to that, raw skin you-know-where as a result of the nastiest case of diaper rash imaginable, and our poor daughter has just been in all kinds of pain. But this doctor was so, so great, as was our nurse today, and they've put her on a much more restricted feeding plan. So far, so good...I'm writing this at 9:45 in her room, and it's been 5 hours since any sign of the rhea. I know it sounds silly (and maybe some people would even call it sacrilegious) to thank God for getting rid of the runs, but I'm thankful for anything that will make my daughter's life easier in the midst of all her problems.

Dr. Troup came by while my mother-in-law, Mary Jane, was here. He thinks the hole in the incision is spreading more to the left side; it WAS only in the center and on the right side. He's going to have a wound care nurse come in on Monday to look at the incision to see if there's anything they can do. There's some kind of wound care team here at the hospital that specializes in situations like ours. Troup thinks there's some kind of powder they have that helps infections and wounds like Emma's. We'll just see how it goes. Our family and the nurses think that there's more scabbing today, which I think is a good thing...I guess. I know some of you would like to see what this incision looks like, but it would probably make most of you sick. So I won't post it here...but if you really want to see what it looks like, click on my profile and email me, and I'll send it to you, ha!

Tonight she got really fussy again, and we weren't sure why. Ultimately, this was the solution:



Daddy. Leaning over, kissing her head, grabbing a hand, and putting his hand on her head and back. He saved all 3 of us twice tonight with this sweet gesture. I know that once we get her home, we can't go running at the sound of every cry, but while we're here in the NICU and she's battling all these different issues, you better believe we're going to be there for her.

Emma's not an illegal resident anymore.

Emma's social security card came today! So maybe she was never illegal exactly, but still. It felt pretty crazy to get that in the mail and realize what an important piece of information that is for this little person who we're now in charge of.

The day was off to a great start when I realized that one of our favorite nurses thus far was looking after Emma. She is WONDERFUL. That really made my day through 3:00 when she left. After she left, I've been pretty satisfied with the other nurses so far - not thrilled, but definitely not upset. I know for a fact that at least our nurse last night and our nurses today were handpicked by the nursing supervisor I spoke with. I'm still feeling pretty good about the changes that have been made after my discussion with her, and I hope that I don't have to have that talk AGAIN. We're still dealing with an incision that's much, much less than desirable, a nasty case of diaper rash (literally, raw skin...poor baby), occasional diarrhea (imagine how that feels on raw skin!!), and slowly increasing amounts of spinal fluid on her brain. Emary was awake a lot more today than she usually is, and it's pretty hard to entertain her with such limited options. Shoot, she and we would just settle for putting her on her back!

Dr. Troup came in today and didn't seem surprised that Emma's incision looked unchanged. The antibiotics aren't a continuous drip; she gets one kind every 24 hours and one kind every 12 hours. He said that we'd start to see results in 4 to 5 days. This doesn't mean that she'll be healed in 4 to 5 days; it could actually get worse and then we'll see a turning point. After that, who knows how long it will take to completely heal? Because there was some question over whether or not the incision was infected, I asked again today, point blank, "So you DO think it's infected?", and he said YES. This is what I understood from him yesterday as well, but the dodo nurse didn't seem to think that's what he said at all. Can you tell I'm still harboring a little bitterness over Emma's nursing care? I think it's time for me to let that go...

I'm not usually the type of person who asks God, "Why?" It's usually a pretty futile exercise, and I trust Him enough to understand that we're not always meant to understand why things happen...because I trust and understand that He only works for our good and not to harm us. But I admit that there are certain times that I do ask why because things are just so unreasonably unfair and...JUST NOT RIGHT. I have to admit that I've been pretty angry at Him for brief moments of time over the past 6 months that we've known about Emma's spina bifida. How could something like this happen to an innocent baby who has done nothing wrong and who is coming into this world at a huge disadvantage from Day 1?! But I also know that it's ok to be angry and upset...these are real emotions that I have to own up to and deal with through prayer and just generally through my relationship with the Lord before I can begin to really move on. These days I find myself on a roller coaster of anger, grief, exhaustion, despair, brief glimpses of hope, and joy over our new baby girl when she's sleeping peacefully and not hurting. Plenty of good people have dealt with some pretty horrible things, and I haven't asked why...I DO ask why when it comes to babies, though. In my mind, babies can't cope...they don't know to pray or ask for help, can't call a friend or even communicate where something hurts and how it hurts. This does not seem right to me. They do things that harm themselves, but they don't know not to do it (i.e., pulling out 2 IV's when you haven't even been breathing fresh air for an hour). As we have watched our problems snowball over the last week, I think, I THINK, a lesson (not necessarily the only lesson, but A lesson) is that right this moment, the spina bifida thing isn't a big deal. An infected incision is a very big deal. I realize that this time we're in the hospital dealing with these specific things is a small amount of time compared to the years of therapy and "training" that we have ahead of us. I'm sure there will be times when despair will set in again because we won't be able to say, "This should clear up in a couple weeks." But for now - I think I'm supposed to be learning that I should be thankful in the future that we're not battling a gaping, infected wound or racing the clock for shunt surgery to relieve fluid pressure on her brain.

Quick side note: a NICU nurse and a woman who takes blood from these babies both have children with spina bifida. I really think this birth defect is more common than we know.

This up close and personal video is not all that exciting. We're pretty sure that Emma's going to be a talker because the noises you hear in this video are the general noises we hear from her all the time, asleep or awake. My sweet husband spent the night on Wednesday night and slept a total of an hour because every time she made a peep, he jumped up and made sure she was still asleep and generally ok. So if you know Russell, you can watch this video and appreciate the image of Russell jumping and examining her at every sound. Daddy's a sucker already :) It's a little close because I was holding the camera while she was lying on her tummy on my lap.

The moment we've all NOT been waiting for...

...an infection. Yep, Emma's incision is infected. Well, that's what my mom and I heard from Dr. Troup, while a nurse heard something else. He thinks it is or could be (however you want to construe the conversation) a surface infection, so Emma has to be on IV antibiotics. Russell and I spent an hour waiting for the nurses to get a PICC line or an IV in her tonight. The PICC line didn't work, so now she has a regular IV, which doesn't last as long as a PICC. This comes as no surprise to us, as they've had a tough time with Emma's IV's from the time she was born. When we finally got back to her room after they worked on her, she was screaming because she was hungry, she had dried blood all over one hand, and I saw a blood-soaked guaze pad that they hadn't cleaned up yet. No mother should ever see her child's blood like that. I didn't feel sick, but it made me want to cry for days for my baby. We've heard that most babies on these antibiotics are on them for 10 days. Let's assume she goes home 11 days from now...that will be a total of 27 days in the NICU. We've had a number of people comment on how much worse the incision looks today. We've gone from a dime-sized hole, to a nickel, and finally now a quarter, with the addition of the separation of the incision out to the side of the hole. Again, perspective - this is on someone whose back is only about 7 inches wide. Don't get me wrong, I certainly don't want her to have an infection, but the plus side is that we've been making backward progress for a full week now; if she has an infection that is preventing some forward progess, we should see results from the antibiotics in a couple days.

Dr. Troup has now put the shunt surgery on the back burner because there's no way he's going to do anything until this back situation is MUCH more cleared up than it is now. Best case scenario (which, honestly, is NEVER case scenario for us so far), the incision starts to turn around tomorrow and we could have the shunt put in...maybe Thursday of next week. This estimate is mine, not his, so I could just be full of it. If he starts to feel that we need to move on the fluid on her brain, he'll do a bedside tap, like I described in last night's blog.

The new disaster of the day (because, hello, no day is complete without one)...diarrhea. As for the diaper rash, the 3 wonderful nurses on the hall tonight were working on her, running a tube into her diaper to blow pure oxygen on her rear. Can you even imagine how that feels? Cooling, comforting, chilly? In addition to the great nurse actually assigned to us, the other 2 wonderful ones said they'd keep an eye on her, too. One of them even has a myelo (abbreviated medical term for the specific type of spina bifida Emma has) kid, as well, and we've spoken to her before about her experiences as a parent. It just feels good to know that someone is there with Emma who specializes in myelo kids in the NICU because her own child was one.

Speaking of nurses, I think I've straightened out the nursing situation. I spoke with a nurse supervisor, and she is VERY concerned about our problems. She is taking charge of our specific assignments, addressing problems with some of the bad nurses we've had, and is going to be checking on us very frequently. She was horrified at the nurse who jacked Emary's legs up over her head and asked to see the picture. She tapped my camera and said, "I'd hold on to that picture." Hmmm, interesting, isn't it? She was so very apologetic and embarrassed by our level of care thus far. I don't want her to be so embarrassed or anything, but looking at a solution to our nursing problem finally something feels like something went right today.

So far, we have been praying for pretty general healing - healing of everything about Emma's spina bifida. Here recently we've found ourselves still praying for that healing, with the addition of intense pleading with God for specific things - healing of her incision and her diaper rash. I'm pretty sure Emma had a crying jag tonight because she was pooping on and off for about 10 minutes. If you saw her little hiney, it would make you cry, too. Ok, so that makes prayers for healing of the nerve damage and spinal fluid complications from the spina bifida, the diaper rash, the diarrhea, and the incision. Now add to that a prayer that the IV will make it for 10 days (this rarely happens) without having to be replaced and a prayer that she won't try to yank it out or bend her hand too much. Right now they've kind of splinted her hand so that she won't bend it and put stress on the IV. A nurse told us earlier that babies heal SOOOO much faster than adults. That may be true, but adults are also aware that if they need to, they can keep certain areas of their bodies stationary. Babies actually do the opposite - they wiggle whatever hurts or is uncomfortable. Here's a picture of her pitiful little hand with the splint.



Earlier my mom said that she feels as if a weight has been lifted off her shoulders because Emma is now being treated with antibiotics. I agree that only good can come of this...well, maybe only good SHOULD come of this. The way things have gone for us so far, I'm trying not to make any assumptions. However, I'm now worried that having an IV in for 10 days just won't work out - 10 days is a loooooong time. How can our baby possibly be ok with an IV for 10 days?!

One bright spot in the day was that I got trapped in the giant revolving door in the lobby of the hospital - I'm not being sarcastic; it really was funny. Russell was picking me up to eat dinner, and he was waiting in the car right in front of the door. I go beebopping through the door, walking, walking, and then the door just stops turning. So there I am, looking at Russell through the glass, and I can't go anywhere. He was laughing so hard that he couldn't get out of the car. I started laughing hysterically and couldn't stop, even though it was hurting my incision SOOOO badly. Russell finally got himself together enough to walk up to the door to get it turning again. Could I have possibly been too short to keep the door activated? Surely not...

After all this, at least our daughter's still cute. Well, WE think she is. This shot of Emma is what my mom and I captioned, "A Formula Hangover."

Backward progress

Let me warn you - you won't read much positive news in this post. My feelings won't be hurt if you don't want to read it - I don't blame you, as it seems that there hasn't been a whole lot of good news from this blog the last few days.

For starters, most of the nurses here at the NICU still aren't good. I'm going to speak with someone tomorrow about this. Not only do they not do anything, but when they do actually do a small bit of work, we are usually upset or mildly horrified at how they do it. The end result of that is round-the-clock monitoring by us - Russell is spending the night tonight, my mom is going to be there at 7:30 tomorrow morning, and I'll be there at 11 am.

Regarding her incision, the hole that's opened up has gotten larger (it's now nickel-sized), and the opening has spread out from the middle. It's still runny and leaky, which isn't good. We know for sure that her shunt won't go in tomorrow. Because the incision is not faring so well, the shunt may not even go in on Friday. The reason is that there's a muscle flap under the open skin protecting the spinal area. If the incision gets infected, the muscle flap protects the spinal area from infection. The problem with the shunt is that if the shunt is in there and an infection in her back develops, there's a chance that the shunt will get infected, too, even with the protective muscle flap. If the shunt gets infected, we've got BIG problems. On the other hand, the fluid on her brain isn't getting better. She's not really showing any outward symptoms of fluid build-up, but you also don't want to just wait for that to happen. A temporary alternative to the shunt is for Dr. Troup to come into Emma's room and tap her brain. Yep, tap it. Like you tap a keg of beer. That will drain some fluid off and buy us some time if we need it. None of this sounds appealing, does it?

Emma was very fussy for a long time this afternoon, even after she ate at 5:30. This could also be a symptom of the fluid on her brain...who knows? She could be bored or uncomfortable, too. I'm writing this post in her hospital room at 9:30 pm, and she's fussy...again. She's been so good for so long, and I think you can only ask so much of a newborn.

I have one-upped Russell and my mom today - Emma pooped and peed in my mom's hand, and she peed in Russell's hand. According to my mom, her incident was her own fault - she didn't pull Emma's low-riding diaper up far enough. With Russell, it was the nurse's fault - she wanted to put Emma on the scale diaperless. You're just asking for it then, and of course Russell was the one to get peed on. I'm sure my time will come, though, ha!

Today's picture is of Russell with our naked baby, trying to (1) air out her poor diaper rash (let's just say she's bleeding a little and leave it at that); (2) air out her incision; and (3) give her a change of scenery. Apparently she was smiling at Russell a lot during our attempt at making our little girl happy. Oh, scratch that, fussy again...

What is THAT?!

This morning when we walked into sweet, sleeping Emary's room, we encountered two new "situations" - Emma sleeping on her side, propped up by rolled up blankets, and a watery, runny incision. The nurse thought she'd be comfortable with a change in sleeping position, while it still allowed the incision to be exposed. Great in theory, disastrous in practice. Emma was frank breach for a good part of my pregnancy, meaning her feet were over her head. So what does she do when you give her the chance now? Draw her feet and legs up as much as you'll let her, which puts pressure on her lower back incision. So there she was, on her side, bending where the incision is, with one leg in particular much higher than the other one. Then things went from bad to worse...as I blogged yesterday and Sunday, the incision has opened up into a pretty substantial hole right in the middle, but we've been fighting it by putting peroxide on it. The peroxide fights infection and also hardens the tissue - the nurses and doctors use the word "granulate" I think. I don't actually know what that means, but I think it has something to do with the skin hardening and healing. Anyway, not only was Emma on her side, but the nurses had also decided that she probably didn't need the peroxide anymore. WRONG. Because she hadn't had a peroxide treatment in a while, something was running out of the incision...first of all, gross...second of all, we had never seen that before. The NICU docs came by not long after that, and they were very concerned about it as well. They got in touch with Dr. Troup right away, and he said that we needed to continue with the peroxide. DUH. Why would you just stop following a doctor's orders just because you've been doing it for a few days? So anyway, we treated it and 4 hours later it started looking the same way - leaky and runny. We treated it again, and voila! It looks like it did yesterday. We're looking for forward progress from day to day, but I guess you could call it forward progress from this morning. Sigh.

Dr. Troup came by at the point during the day that the incision looked fairly dry, so he of course wasn't worried about it. Kind of like when your car's making a funny noise on the way to the repair shop but doesn't make it again until you're on the way home. He still didn't know when her shunt surgery would be, but he wasn't worried about it being as late as Friday because Emma's going to have to stay longer because of this horrid incision situation. We were making such great progress. We are just praying that it doesn't get infected. If it gets infected, our stay in the NICU could double from 3 weeks to 6 weeks.

Emma's been eating like crazy. She doesn't spit up (well, she did tonight because she ate too fast and burped too fast), and she doesn't spill a drop! She is knocking the nurses' socks off with how much she eats. I think a lot of the other babies in the NICU don't eat as well as she does. Russell and I both have experienced a lot of frustration with the normal baby stuff - eating, changing clothes, burping, changing diapers, but not for the reasons that most moms and dads feel frustrated. We feel heartbroken, desperate, frustrated, and annoyed all at the same time when we're by ourselves trying to do all those things. We can't just turn her over or prop her up or bend her however we need to. Every move we make is done with consideration of the incision, which makes all of those things terribly difficult. We're just ready to live our lives with a child who doesn't have an incision that stretches from one end of her back to the other. She will most likely have other problems to contend with later...those will be frustrating as well. But for those of you who are parents already, you know how difficult those first couple of months are with that first child. Now imagine doing all the things you have to do to care for your child...but doing them all with your child living on her tummy and being largely immovable.

Yesterday a resident told us that he noticed the index card I had posted over Emma's crib that refers to God's plan and design for each of us. He stated that he was a Christian, too, and he hoped that it was ok that he came by and prayed over her yesterday morning around 8:00. I, of course, said that was fine, and we had a great conversation about our faiths. When we were discussing Emma's incision today with all the residents and the head NICU doc, this particular resident stated that when he came by at 8:00 THIS morning, it was much, much drier...how much do you wanna bet he came by and prayed over Emma at 8:00 again? God is surrounding Emma with His children. There's something comforting knowing that someone is placing his hand on her head and praying for her health and healing when I can't be there.

I'm too tired for a creative title

Today was a very busy day, but I feel like we don't have a whole lot to show for it. Emma's incision is healing, but there's still a pretty big hole in the middle of it...healing is going to take a while. The good news, though, is that Dr. Troup said that since her incision split open right there, she won't have a scar; the skin will just regrow there instead of scar.

Emma's shunt surgery was supposed to be Thursday; due to a very unfortunate turn of events (I'm not being sarcastic here), it could now be Friday. I won't bore you with the details, but there are 3 options as to when the surgery will be: Thursday morning, late Thursday afternoon, or Friday. If it's late Thursday afternoon, there's a pretty good chance we won't know about it until they walk in her room that afternoon and say, Hi, we're here to take Emma to surgery. If it's Thursday morning or Friday, we should know for sure tomorrow.

Emma had a couple tests run this morning to detect any serious bladder problems. We received definite results from one of the tests, and the NICU doctor was still waiting to see the results from the other one; however, he "heard" that they were good. I think the NICU docs keep each other informed about all the babies, but they don't want to report anything to patients without seeing the actual results themselves. These tests will be repeated as Emma gets older, I think in approximately 6-month increments. Just because these two particular tests come back good doesn't mean she won't have ANY bladder issues, but these tests pick up on a couple really serious problems.

I finally got to hold Emma tonight at her 9:00 feeding, and she's REALLY squirmy when she's being burped. She's got a pretty strong neck already, and she's always turning it back and forth on her own. Tonight she also tried to start crawling, I swear. The nurse was amazed at how Emma just hitched her knees up under her and looked ready to take off!



When we put Emma on her back in her crib, she doesn't know what to do with her arms and legs with nothing to lean them on. The result is arms and legs straight up in the air, and it's hilarious to watch. I tried to catch a little of that in this picture, but the picture really doesn't do the whole production justice.

A mischievous little grin

Today ended better than it started. I started out the day by pulling something in my back - WOW, I have never felt pain quite like that. That must be what it feels like to be stabbed. It still hurts to reach for things and to bend forward. When we got to the hospital, we fed Emma right away, and she stayed fussy for the next 2 and a half hours. In the midst of that, Dr. Troup came by and told us Emma's shunt surgery would probably be Thursday, not Tuesday, as he already had 3 surgeries planned for Tuesday. THEN he said that her discharge was probably pushed back a few days because her incision had opened up. So now, we could be looking at a total of 3 weeks in the NICU...which means we're now only about halfway through. Emary's incision scares me - she's got a hole in the middle of her lower back that's just a little smaller than a dime. Yuck. Yikes. It's gradually healing, but my problem with it is that it's healing for a second time - it was better than this last week. They/we have to pour peroxide on it every 4 hours. Not only does peroxide clean it, but it also makes the open portions of her incision harden and heal faster. I didn't know peroxide could do that, but I saw with my own eyes how fast the hole started "filling up" from the morning to the evening. At least it doesn't hurt her, though. Towards the middle of the day, I finally got the peace and quiet I had been looking for. We relaxed for the rest of the day, feeding Emma and changing her diapers, reading and watching TV. I just can't wait for another one of these Sunday afternoons...at our own house, not at the hospital.

We think we've figured out the routine Emma's established for herself...well, at least when she prefers to really be wide awake and entertained. When I told the nurse today that we think we may know what her awake and sleep routines generally are, she said, "Great, Mommy! You're already getting to really know your baby!" It felt really good to hear that when I only feel like a mom part of the time, with Emma being in the hospital and us being so dependent on doctors and nurses. Emma enjoys being entertained and held during the early afternoon - that's her time to really open her eyes and explore the world around her.

Emma was so smiley today! I know people say babies don't smile; maybe they don't smile for reasons we can identify, but they DO smile. She would tease us with this little grin for a split second, and then it would be gone...it almost made us question if we had even seen it at all! I was able to grab this one picture, though - it's blurry because I had to move fast!



And finally, at the end of a long day, at the beginning of a long week, I was able to snag this picture of Daddy longing to bring his baby home, before he knew I was taking it. This is what makes me cry tears of joy and tears of sorrow each and every day.

Now that's what I call holding my baby

Hooray! Today I finally got to hold Emma - actually hold her in my arms, against my chest. I, of course, started crying, and it was just amazing. She was a little fussy this afternoon, we think because she had another case of extreme boredom and maybe a little bit of hunger. It definitely wasn't time for her to eat yet, so we put her on her back, and I rocked her in my arms. She and I were both so happy!

I won't go into details about her incision because it could get kinda gross. But I will say that Dr. Troup wasn't concerned about the consistency of it changing since we've been putting her on her back some. I, personally, am concerned that where it once was level with the rest of her skin, there's now kind of a hole there. It just makes me nervous to be moving her around!! I know that most first-time parents are scared they're going to break their kid, but once all this heals on Emma and we're past the shunt surgery, it's all downhill for us. We'll be able to move, feed, and change her like champs after all this. Dr. Troup didn't even feel for the fluid on her brain because it wasn't going to change his assessment of when to shunt her. One thing broke my heart a little for the first time today: you can kinda tell that she has extra fluid on her brain just by looking at her. So please, please pray that she'll have this surgery on Tuesday before it gets any worse by waiting until Thursday to do it. Emary still isn't showing symptoms of fluid on her brain - she's still eating like crazy, right on schedule; her breathing and heart rate are fine as well.

Russell and I had a visitor today during our dinner break at home. Lola, our dog (and really our first child), has been staying at my parents' house for the last 2 weeks. Staying at my parents' house is like Doggie Disneyworld for her. My dad brought her to visit us tonight, and it was absolutely wonderful! We loved on her for an hour or so, and when my dad got up to leave and take her back to their house, Lola ran down the stairs and never looked back. So much for missing Mom and Dad. Here's a cute picture of Lola and her daddy snuggling...we miss her so much.



Our nephew, Mason, went home from the hospital today, and they still don't know why he had seizures yesterday. So we're praying it never, ever happens again!

This pic of the day is what Emma looked like when Russell and I walked in this morning. She managed to get her giant hat over her eyes and was perfectly content sleeping like this. That's really all for today - probably more uneventful since it was a Saturday, but oh, what a nice Saturday it was to just relax with Russell in our baby's room.

So THAT'S what your whole face looks like!

Today was a big, big day. A little bit of bad news, but still a good day. Dr. Troup came in this morning and told us that Emma could be turned on her back today. He's still concerned about the fluid on her brain, and it's even worse today than yesterday; that's 3 days in a row of fluid growth. She'll definitely have a shunt put in on either Tuesday or Thursday of next week. Emary has to be able to lie on her back for a while because of where the shunt will be, right underneath her skin on the front of her body. Even though a shunt sounds like it would be noticeable, it's really not, unless you know what you're looking for. Dr. Troup said that we needed to "road test" her incision; he was pleased with how it has healed and wanted Emma to start alternating lying on her back and on her stomach.

When it was time to flip Emma over, we started by putting her on a pillow on her back to feed her. First, though, Miracle Worker Jean Brown from the Shriner's Hospital brought over some sort of diaper rash cream that is supposed to be the best thing ever (dork mom alert: excitement over diaper rash cream). So our NICU nurse put Emma on her back, and flips her feet up over her head to put the cream on. Literally, LEGS TOUCHING HER FACE.



I immediately starting cringing because I just knew that this act of contortion was opening up this huge yet delicate incision on her lower back, as her lower back had never been bent even close to this much. After that, my mom got to feed Emma. Judy was crying so much, I was just hoping that her salty tears didn't drown Emma! It was so, so sweet. As Mom sat her up to burp her, I noticed that Emma's incision was bleeding and oozing (gross, I know) onto the top of her diaper. At that point, we decided to only put her on her back to feed her and still put her on her tummy in her bed. I later told a doctor about the feet-over-the-head incident, and she was HORRIFIED. She spoke with the nurse about it, and the nurse was really apologetic - she had no idea that we had to be THAT delicate with the incision because she didn't realize putting her on her back was brand new. I understand where she was coming from, but still....this is what we've been working towards for 10 days, and it felt like a backwards step. I got to hold Emma and feed her at 6, and Russell fed her at 9 - both times, there was more oozing (TMI, I know, I know, but I'm almost done). So we're really praying that her incision will dry out and heal up so that she can spend some more time on her back...maybe on Sunday and Monday?





Was it amazing to feed Emma on my lap? Yes. Do I really feel like I've held her? No. In fact, absolutely not. I knew before she was born that I wouldn't be satisfied with putting her on a pillow on my lap. Don't get me wrong, I'm thankful for the progress we've made and that I can now feed her on my lap. But I think a lot of you with kids will agree that there is absolutely nothing like holding your baby in your arms or laying them on your chest. That's what I'm holding out for.



Emma was so sweet today, and we had a fantastic day together. Man, she's a good baby. My mom and I sat in her room with her, peacefully reading and writing thank-you notes. It was positively blissful. She's been doing well with keeping her legs and hips straight, and she responds to her physical therapy pretty well, too. When we put her on her back for the first time (aka, when I thought the nurse was ripping her incision open), Emma flailed her arms and legs around because she had no idea what to do with them. It was absolutely hilarious. Her eyes were as big as saucers, and I got to see what her entire face looks like - not just half of it!! This is a picture from that first-time experience, and I thought it was funny enough; then my friend Kristen pointed out that she looks like she's on a newborn roller coaster - ohhhh, that makes it even funnier.



Ok, last picture: Russell says she's raising the roof. Once you put labels like that and the roller coaster comment on the pictures, you can really imagine this little 10-day-old baby dancing or on a roller coaster.



In other news, our nephew Mason had two seizures this morning. The doctors ran some tests and were unable to determine what was causing the seizures, so they're keeping Mason overnight and then will probably just send him home tomorrow. My poor mother- and father-in-law had both of their grandchildren in the hospital today. And my father-in-law could only see one of his grandkids since only Mary Jane can come to the NICU. On top of that, you can't visit other areas of the hospital and then come to the NICU, so she couldn't even bounce back and forth between her two grandkids. Please keep Josh, Allison, and Mason in your prayers. Hopefully they can either figure out what's going on with Mason or he'll never have a seizure again!

Thanks to all of you who have been so supportive of us, through bringing us meals, calling, emailing, texting, commenting/guestbooking on the blog, or even simply by praying for us. Russell and I have felt so loved. We know that God loves us and Emma more than we can imagine, but I can't help but think that we get at least a hint of the power of that love through all of you!

Short(er) and sweet, just like Emma

Tonight's blog will be shorter than the last few, not because Russell's writing it, but because I'm exhausted.

Emma is now turning her head on her own when she's mad, hungry, and/or uncomfortable. Her little neck is getting pretty strong, and she's also turned on her side once. She got a Hepatitis B vaccine the other day; I wasn't there for it, but Russell said she only flinched a little and looked at the nurse like, "Is that all you've got?" No tears or even a peep. Her hands are still bruised from the numerous IV's, and one of her heels has 8 prick marks on it from IV's. She's a tough little cookie.

Today was the first day that she got fussy over anything, and my mom and I determined that it was a combination of things. One was that her hips were a good bit higher than her head after she ate, because of how the physical therapist arranged her fort. Imagine drinking on your stomach and trying to digest it laying down with your head down an incline. On top of that, she sneezes (oh my gosh, SO CUTE) after she eats because some of the formula runs into her nasal passages and irritates them. We won't know what to do with ourselves once we get her home and feed and change her right side up and on her back, respectively. We also think she is finally getting uncomfortable after being on her tummy 24 hours a day for 9 days. I have a "tummy time" toy that I'm going to put in her crib while we're there tomorrow to see if that will entertain her a little. Dr. Troup still thinks she'll go on her back tomorrow or Saturday.

Speaking of Dr. Troup, he came in wearing his funny tie-dyed lab coat to check out her head and incision. The incision still looks good, but the fluid on her brain is even higher than it was yesterday...this isn't good news. He's even more sure that she'll have to be shunted before we go home, either on Monday, Tuesday, or Thursday of next week. She has to be on her back and be able to stay there comfortably before she can be shunted. He'll continue to monitor her tomorrow, Saturday, and Sunday. I'm hoping for Monday or Tuesday because I just want it over with, and I don't want to just wait for the pressure to manifest itself in poor feeding, breathing, or heart rate before he does anything. But I trust Dr. Troup - he's pretty great.

I realize that the shunt surgery is a whole different procedure than what we've been dealing with, but it will still feel like we're taking backwards steps. Dr. Troup wants her out of the NICU for infection reasons (the NICU is kinda yucky because of the caliber of some of the people who visit babies in there). If we took her home and came back for the shunt, she'd go through pediatrics, not the NICU. Anyway, once she has the shunt, she'll go back to NICU I and be stuck with and fed through IV's all over again. We'll have to start the bottle feeding process all over again. Shunts can change the way babies eat, too, because they initially cause a sudden, large inflow into the abdominal cavity, pressing against the stomach and making the baby feel more full than she actually is. I pray, pray, pray that this all goes well because we've made so much progress (better and faster than a lot of myelo babies, apparently); I'd hate for this second surgery to interrupt this progess.

The nurses in NICU 2 for the last 2 days have been outstanding - now we couldn't be happier! Emma's diaper rash is better than when she first got it, but we can't quite get rid of it. The nurses are really keeping an eye on it and trying hard to get rid of it, which we appreciate.

This is Emma after a short nap following her long afternoon of squirming, whining, and crying. She looks completely comatose, and she's desperately trying to wake up to eat dinner. Once she hits 12 or 13 years old, she'll probably be mortified that I shared this picture with people, but I think it's funny. It's also pretty funny that every mother has heard and read the lectures about putting a baby in a crib with no blankets, no stuffed animals, not even a crib bumper...and here's our baby, surrounded by about 13 blankets.

If Mama Ain't Happy, Ain't Nobody Happy

If Mama ain't happy, Dr. Troup finds out about it. And as we learned yesterday afternoon and all day today, if Dr. Troup ain't happy, everyone and their brother bends over backwards until he is. Maybe it's just coincidence that things took a turn for the better after I talked to him, maybe not...

The day didn't start out great. From the moment I walked back to see Emma at 11:00 until we left for lunch at 12:45, I was bombarded by a nurse a couple times, a physical therapist, a March of Dimes volunteer, a social worker, a NICU doctor, and 3 residents. The best part of that whole time was when I decided to temporarily tune out a couple of them to just look at Emma and let her hold my finger. Today's nurse told me that I would feed Emma at noon, and my mom jumped in and told her I would NOT be feeding her, as I was going to rest this afternoon. Then the nurse said, "Oh, so you'll feed her later then? You haven't fed her yet, have you?" I responded, "We've been feeding her for 4 days." I'm not sure why these NICU 2 nurses ARE NOT GETTING IT - they suddenly think we're clueless. Anyway, my mom took me home to rest, and she went back to the hospital. Russell picked me up at 5, and my mom had a wonderful afternoon with Emma.

Judy had a very long conversation with today's nurse, and they got to be great friends. If you've ever met my mom, you know she can be very persuasive and convincing, especially to strangers. All I know is, she and the nurse really bonded, and when I got there at 5:30, Emma had been moved to a private room that is only reserved for babies and their families who are being discharged in a day or two. These are called Family Learning Centers, and they're for parents to stay in with their babies before they go home to make sure they know how to care for their children. It has a bathroom, table and chairs, couch that folds into a bed, microwave, fridge, and flat screen tv. Oh, and a baby. :) There's still a chance that Emma could be moved back to a semi-private room if another family needs the room that we're in now, but we'll cross that bridge when we get to it. Another nurse came in to whom we are distantly related, and the two nurses and my mom had a good ole time together playing with Emma and getting a few footprints and a VERY difficult handprint from her. I can only imagine how hard that handprint was to get, as I felt those little fists balled up tight in my ribs for a couple months. It even turns out that Emma's nurse is a friend of a friend of mine (I don't know who), and she's been praying for Emma for a few months now! God's a sneaky guy who's just full of surprises, isn't he?

When Dr. Troup came, he asked the nurse why we had been moved to the private room that is set aside for families who are leaving. She replied that she didn't think it was right for our family to be stuck in the crappy room when the other one was available. (Ok, so she didn't say crappy, but it was.) He agreed and asked, rhetorically, why it wasn't done sooner. He didn't seem happy that it took this long for someone to get us in there, but he was very appreciative of this particular nurse's attentiveness.

I blogged yesterday that Emma is making her hips and legs all crooked. Well this morning she had fixed her problems herself (with the help of her physical therapy fort, of course), in less than 24 hours! The OT and PT were pleased with her quick progress and gave us a couple other little things to work on. I learned how to wrap her ankles with the tiniest gauze strips you've ever seen. We were concerned that she wasn't moving her right leg very much, and today she moved it almost as much as her left. Dr. Troup was pleased with her incision. Now for the bad news - her head felt a good bit harder and tighter than it did yesterday, meaning that the fluid has increased. There's now a chance that she will have to have a shunt before we take her home. This could mean an overall increase in our hospital stay of a day or 2, or, if she has to have the shunt this weekend, it may be no change at all. Either way, Dr. Troup really wanted her to go home first and come back for the shunt. Still a possibility, but we have to wait and see. One of the indicators of too much fluid is when it affects Emma's feedings. Unfortunately, she has gotten onto a binge cycle: she eats every 3 hours and eats like a horse at one feeding, very little at the next, then chows big time again, etc., etc. The night shift nurse is going to try to get her on a more stable schedule and quantity tonight so that she doesn't binge, even if she COULD eat more. The doctors need to be able to tell if those small portions she's eating are due to the spinal fluid build-up or due to being too full from a previous, large feeding. Too much fluid will also start to affect her breathing and heart rate. Scary, huh? Finally, there were 2 or 3 people trying to correct Emma's diaper rash today. It seemed like there were lots of people scrambling today to set everything right - from diaper rash to a private room!

I am still experiencing a good bit of pain, and I had to get a refill on my medication. Not resting is a part of that, I know, but it is what it is.

Today's picture reminds me of The Seven Dwarfs. Reach back into your childhood and picture the dwarfs' hats. They flopped over at the top, where the point was. That's what Emma's hat looks like in this picture! If one of the dwarfs was named Chubby, this is what he would have looked like. Look at those cheeks and that chin.

So do want me here or not?

In yesterday's blog, I expressed my extreme disappointment with NICU 2. If I only knew what was in store for us today...

I won't go into details because my blog would crash from data overload. I swear I'm not a whiner, but my mom, the nurse supervisor, the hospital social worker, and Dr. Troup can collectively vouch for me that most everything about today was a disaster.

Let's see...lowest points would be:
- the nurse telling me that she would be FORCING me to "hold" Emma on my lap, flat on her tummy on a pillow, even though I'm not ready for that quite yet
- walking into Emma's room and seeing pee running out the front of her diaper all over the pad she was laying on
- also seeing poop come out the top of the back of the diaper and creeping into her incision - there is no easier way to get an infection! Ask people in 3rd world countries!
- opening the diaper to find that it clearly should have been changed hours ago, based on sheer volume
- opening the diaper to an extreme and brand new, never-before-seen case of diaper rash, which actually isn't supposed to happen in the NICU...because it's the NICU!!!
- changing the pee-soaked pads underneath Emma myself to find that her umbilical cord stump has been bleeding, for the first time in 8 days. It also has been sitting in the urine.
- having the nurse instruct me repeatedly, all day, to take Emma's temperature myself, change her diapers, and feed her, while she sits at the front desk talking to her friends (witnessed this with my own two eyes)
- an occupational therapist talking in confusing circles for half an hour about all the therapy and help and problems my 8-day-old baby will have

Again, these are the lowest points. Add about 10 more lesser issues to the mix, and what do you get? A complete breakdown on my part. I only had time to take 2 pictures of Emma today. I was pulled in about 10 different directions, and none of them had my baby at the end. My mom was in disbelief at how I was bounced all over the place today...I just felt kind of numb and like I was hanging onto the bottom rung of the sanity ladder.

Let me just say that I, Russell, my mom, and Russell's mom are all hands-on people. We aren't lazy and certainly aren't trying to get out of changing diapers, etc - we've done it a few times every day for a while now. And it's no small feat, I might add, as Emma's on her tummy, and we can't bend her. But if we're going to walk in the door and virtually be told, "OK, here's your baby, see ya later!", then why even bother having her in the NICU?? I nicely addressed some of these issues with Dr. Troup, acknowledging that I could be overreacting, but he himself was NOT pleased. He sent a nurse supervisor to talk to me, who was completely embarrassed and horrified at how things have started for us in NICU 2. She clearly understood that we're capable of caring for our child and that we absolutely should not shoulder that responsibility while she's in the NICU. She assured me that our nursing problem would be resolved with some rescheduling...so far, so good. The nurse on duty from 7 pm to 7 am is delightful, just like all the other great nurses we have had, up until today.

Today, 4 medical professionals from various disciplines told me that they had been looking for me - where had I been?? My number is plastered all over every paper in the place, so I don't know why it's so hard to call me and ask me to meet them at a specific time. Apparently, getting to the hospital at 11 am and staying all day isn't good enough. Yet countless nurses and doctors have told me for a week now not to live at the NICU...take time for myself...relax at home while I can. Ok, folks, so which is it - HOME OR NICU? I was in some pretty bad pain today myself, so I actually felt like relaxing. Oh, well.

As for sweet baby Emma, she really started crying for the first time today, but it's only when she's hungry. This, I can handle. Easy solution! She's had one leg that's swollen from a PICC line complication, and this swelling is going down. Her incision is a little gooey right in the middle, but Dr. Troup still is "happy" about it. He's no more concerned about the fluid on her brain than he was yesterday or Friday. I think...I THINK...Emma's physical therapy that started today (please remember, the therapist wasn't a great communicator) is about half beginning therapy that will continue after she's out of the NICU and half trying to adjust her hips, legs, and feet muscles to how they should be if she were on her back. She hitches her left leg under her hip, which rotates her hips to the right and causes her to lean onto her right side. They want everything to be straight because she doesn't need any more hip and leg abnormality than what is already there that we just don't know about yet. She is surrounded by this little fort made out of blankets and rolled-up pee-pee pads. Emma's eating like a champ but has lost weight back below her birth weight over the last 2 days, for some reason. Probably because she's pooping like a champ! They have to record all her poops, and they were running out of room on the Poop Page at 9:30 tonight. Both grandmas, Russell, and I all fed her today - both because we wanted to and because we had to, since no one else was around to do it.

I'm praying for a better day tomorrow. Emma has a physical therapy appointment at 11 am tomorrow (ahhh, see how easy an APPOINTMENT is, people?!). My mom and I are eating lunch, and then she's making me come home to rest for a few hours. I understand her concern, and I'm not trying to wear myself out, but I really want to just be with my daughter. I was physically present all day today, but I wasn't able to be there with my daughter emotionally. :( Sorry the blog has been a downer for a couple days, but that's just kinda the way it's gone. I try to be an optimistic person, but I'm also realistic. Life is hard, and you have to face it head on. I truly believe that facing it, owning it, admitting to God that you need help, and letting Him stand with you through it is the only thing that safely gets you through these things. If I can just get through each day one at a time with Him, facing the bad stuff, then I can move on to the next day and not look back - because I know I've handled things the best way I can, with my Lord standing beside me.

Like I said earlier, I only got 2 pictures today. This is a picture of Russell feeding Emma - one of the only peaceful moments from today. It's no coincidence that this is when the new nurse was on duty.

You'd think NICU 2 is a good thing...but you'd be wrong.

Today started out on a good note and definitely ended on a sour one. Emma has been eating really well, and I spent a lot of quality time with her. She stayed awake for a while this afternoon and was perfectly content looking around, moving her arms around, and making cute noises. I have only heard her cry once a few days ago (I blogged about it), and other than that, she has been the perfect baby...and no pacifier needed!

The good news first: Dr. Troup came by to see her this morning before my mom and I got to the hospital, and he told the nurse that her incision looks "marvelous." He felt her head and isn't any more concerned about the fluid on her brain than he was on Friday. His rough, tentative timeline for her is this: stay on her tummy for the rest of the week, lay on her back at the end of the week and over the weekend, monitor how the incision is when she's laying on her back, and then bring her home early next week. Later in the afternoon, the nurse told us that Emma would be moved to NICU 2, which is where babies go who are doing really well. Sounds like good news, right? WRONG, WRONG, WRONG.

Russell and I came to see Emma in her new location tonight. It is a semi-private room with no curtain to separate her from the baby who is 5 feet away from her. Our daughter has a large incision that we are trying to protect from infection, yet she is sharing a room with another baby and 4 other people who belong to that baby. They have to walk past Emma to get to their baby, too. In NICU 1, Emma was opposite the main doorway and a good distance away from other babies in her own little room, just without a door - for the specific reason of limiting other people's contact with her. To protect against infection. Duh.

The other baby is horribly fussy and cries a lot. Loudly. If that baby upsets my good sleeper and prevents her from sleeping and...dare I say it...MAKES EMMA CHRONICALLY FUSSY now that she's recovering from major surgery without pain medication, I'm going to blow a gasket. We haven't been tiptoeing around her, and we have been able to talk and laugh without phasing her a bit. But our talking and laughing is no match for another screaming baby 5 feet away. Then there's the pacifier...the only reason she has needed a pacifier was to stop hiccups. Then you take it out, and she's fine. I walk in tonight, and there she is with the pacifier in her mouth. I took it out twice and (1) watched her come to the brink of tears twice and (2) watched her heart rate go over 200 for only the second and third time in 7 days. (It's supposed to stay below 200, and hers is usually around 140 to 180. The alarm starts going off once it reaches 200.) The icing on the cake is that I didn't see the other baby's mom or her sister wash their hands or use the antibacterial gel a single time. Not once. Changing a diaper, etc. and NO HAND WASHING. The nurses and families in NICU 1 use the antibacterial lotion and wash their hands religiously, as do we.

So maybe I'm being an overprotective mom already. But when my baby spends her first 7 days with no tears, no pacifier, and recovering from major surgery in remarkably good spirits, I think I have every right to be upset about another baby and its family disrupting this progress. ESPECIALLY if her incision gets infected. I'm going to have a conversation with the neurosurgeon tomorrow because I don't know if he knows that they moved her - moving her is the NICU doctors' call.

Russell phrased it this way: It's like moving from the Ritz-Carlton to a semi-private room without a curtain at Motel 6.

Today's picture is of a peacefully sleeping Emma, back when we were blissfully unaware of the Bates Motel to which we were about to be moved. The hospital shirt they put on her is on backwards, in case you're confused about which side is up! And yes, there's a hole in it. Nice, huh?

A Big Day for Little Emma

Let me just go ahead and sum up the big events of the day:
1. Emary's feeding tube was removed.
2. Her PICC line AND IV were removed, meaning...
3. No more pain medication and no more fluid feeding through the IV.
4. In one day, she went from eating 20 cc's in a bottle, to 45 cc's, to 50 cc's. (30 cc's is about an ounce, and most newborns eat 2 to 3 ounces per feeding.)
5. She is maintaining her own temperature, so with everything listed above removed, she was able to move to a big girl's crib in the NICU. (Same location, different crib.)
6. They measure length and head circumference on Sunday nights; due to the fluid on her brain, the head circumference is a big deal, but the increase in her head size was very reasonable and not concerning (to the nurse, at least).

Russell and I both changed a diaper today. Russell changed 2 actually, and he was really itching to change the first one. This REALLY bodes well for me :) He also took her temperature. He is proving to be a very hands-on daddy! I'm more nervous than he is about changing her diaper and moving her back too much.

Dr. Troup didn't come to see Emma today, but we should see him tomorrow. We are pleased with the incision, but we obviously have no medical background to back this up. However, we think the doc will surely be pleased as well - his concern was the skin pulling apart, and it definitely is NOT doing that.

Emma entertained us tonight during her 9:00 feeding. The nurse said that she "sings" when she eats. As the feeding went on, Emma just kept on making this sweet little noise of contentment, right on rhythm. Russell grabbed the camera, so we have most of it on video. She sang and sang the whole time she ate, and the nurse even said, "It's too good to be true!" She told us that most babies do not do it so loudly, for so long, and so on rhythm. The nurse told us that she does have pretty big hands and feet and long fingers. This might all mean that she has long piano fingers and great rhythm, which would delight Mary Jane (my mother-in-law) to pieces, since no one else is even close to being as musically inclined as she is. I almost posted the video, but it's a little long, and I'm trying to exercise some self-control and not be one of "those" moms.

I, personally, am still in a little pain. It's getting a little better each day, but I have my moments. Russell is only allowing me two trips up and down the stairs, but it's really not the stairs that get me - it's getting in and out of chairs. He's not a very bossy person, but he is when it comes to my health. He is a wonderful caregiver, and I thank God for him every day for so many reasons.

Today's picture is of her in her Furman cap, in her big girl bed, squeezing my finger. They put a hat, socks, and a small folded blanket on her back to keep her warm since she's not under the warmer anymore. We will be able to bring clothes for her very soon! We will most likely bring gowns that have elastic at the bottom and snaps that make the gown either be a gown or pants. The reason she needs snaps is that they will put them on her backwards, so the snaps are on the back and they can leave the snaps open where the incision is.



Thanks to all of you for your continued prayers. God has not healed Emma of the complications from spina bifida...not YET. This is still our prayer; in the meantime, He is blessing her and us with great strides in other areas. Even though she made a lot of progress today, I still found myself in a glass-half-empty state of mind every once in a while: other newborns are doing all these things on Day 1 of their lives. Emma wasn't born with any complications that prevented her from doing these things on Day 1, so when you think about it that way, maybe she DIDN'T make that much progress...she was just catching up to things she should have been doing all along. I know this kind of thinking isn't healthy, but I just get frustrated sometimes that the spina bifida surgery has kept her from doing the non-spina bifida things that she was capable of doing anyway. I'm not complaining, and I'm thankful for her progress, but these are the small disappointments that I still pray for relief from.

Well, enough of that negativity - I have to get to bed so that I will be refreshed for my sweet little girl tomorrow! Thanks again to all of you for keeping up with us and being the best support we could ask for.

March 20 Update

This is Russell filling in tonight, so you will notice the blog title isn't as catchy and most likely the grammar will be a bit off. Today was a really good day for Emma, especially when it came to feeding. She took a lot more from the bottle throughout the day and tonight at 9:00 Mary Beth was able to feed her for the first time. Emma seemed to rest very well today which is a great thing as she doesn't need to wiggle with that incisision. Today was Dr. Troup's day away from the hospital, so we didn't get an update from the neurosurgeon, but the nurses and doctors in the NICU are all very pleased with the way Emma is progressing. They also took her off of antibiotics and Tylenol, and have decreased the amount of pain medication she is receiving.

As far as Mary Beth, she was discharged from the hospital this afternoon about 5:30, which is good and bad. Good because we should be able to rest a bit better from home, but bad because it was really tough to leave Emma behind. We pray that this is only for a few days. We found out that before Emma is discharged, we will likely spend one more night in a family room in the NICU, but more on that later on.

Sorry for the shorter blog, MB is much more articulate than I. Here is a pic though from today.

A First Time For Everything

Today was a big day! Russell and I went to see Emma in the NICU around noon, and the nurse was just about to give her her first bottle! Most parents get to see their kids eat for the first time, but it's not quite that straightforward for us. Emma has been fed through an IV, as well as through a feeding tube in her nose. But today they wanted to try her on a bottle; she ate about a third of that bottle but then was so tired that she had to go back to sleep, and they fed her the rest through the tube. Well, she was very tired, plus the cutest hiccups I've ever heard in my life prohibited her from really being able to drink anymore. She slept the rest of the day because this was all very exhausting. She wouldn't wake up enough for the bottle again, but that's ok - baby steps.



Dr. Troup came to see her and was pleased with how her incision was healing. He noticed that the skin on her scalp was very tight where the fluid is built up, but he wasn't really concerned. He'll be back to see her on Sunday. Russell and I will be going home tomorrow (Saturday), but I'd much rather stay here as long as Emma is here. We only live 15 minutes from the hospital, but that's just too far!

We have little baby mittens on Emma so that she won't scratch her face with her long fingernails. We can cut them or file them, but I don't want to make her uncomfortable and squirmy while her incision is still really delicate. She keeps trying to put her whole mittened hand in her mouth, so we think she might be a thumb-sucker. Every time we pull her hand away from her mouth, she pulls it back. Here's the video of our stubborn rascal, if you're interested. BE WARNED: you can see her incision, so if you think it'll bother you, just don't watch it. Actually, just ignore the incision because you'll miss the point of the video! Those are Russell's big hands at the end - it makes her look tiny, but she's one of the biggest kids in the NICU. If you turn your sound up, you can hear some of her baby noises, too.

Her pain is my pain

Today was a pretty eventful day for everyone. I started feeling a little better today, and the pain was much more tolerable. Unfortunately, I think I traded in my pain for sweet baby Emma's :( She came off the ventilator, so we can see her face better now. Not too long after that, Russell and I were there when they turned her head from one side to the other. This woke her up a bit, and she started opening and moving her eyes, squeezing our fingers with her little hands, and moving her mouth a lot. Russell went to get my mom so that she could see all this, and then it all fell apart. I think Emma realized she had pain in her back, and she started wiggling her back around, trying to get comfortable I guess. The more she moved, the more she irritated her back, and the harder she squeezed my fingers. She was making the most dreadful, pain-filled faces I could possibly imagine...and then she started crying. The nurses were surprised that it was her because she's had a ventilator in the whole time, and this was the first time she cried. I know that all babies cry - the simple act of crying doesn't bother me. But not all babies have major surgery with an incision that's a third the size of their backs. She was absolutely ripping my heart out - I knew she was crying because she was in pain, and I could do NOTHING about it. I had a finger inside one of her hands, and my other hand was resting on her head. She reached up with her free hand and grabbed one of my fingers that was resting on her head and started squeezing that finger, too, every time she made a painful movement. Even though I was so upset, it was so touching to have my 2-day-old daughter grab my finger, as if she needed both of Mommy's hands to squeeze when she was hurting. The nurses were trying to reassure me that she was ok, just in some discomfort (she's still on pain medication, but a lower dose), but I just don't think the level of pain/discomfort even matters when you're a mom. You just want it GONE!

Right when I thought I couldn't take it anymore, they took her for a CT scan of her brain to measure the ventricle fluid. This determines when the pediatric neurosurgeon (Dr. Troup) wants to put in a shunt. The fluid on her brain doesn't necessarily cause long-term damage because it will eventually be fixed with a shunt. However, in the short term, it can be dangerous because it can hinder her ability to independently breathe, regardless of how strong her lungs are. During our second visit to the NICU, Dr. Troup came by to check on Emma. He said the incision looked as good as or better than he expected. This is great news because he was concerned that the skin could pull apart, which would prolong her stay in the NICU; if that still happens, it's not a real danger because he did some precautionary things during surgery to protect her spine, but we still don't want her to stay there any longer than necessary. The CT showed what he expected, and there is no immediate need to put a shunt in, but he'll just keep an eye on it over the next week or two.

We went to see her in the NICU tonight after all our visitors had left and discovered that her nurse had put a little newborn cap on her. Local churches and charities knit them for the NICU, and the nurses pick them out for their babies. Most of the ones for girls are pink, but our nurse thought it would be nice to have a different one. She picked out a purple one with a little purple and white ball on top - THAT'S MY LITTLE PALADIN! She's wearing it in this pic, but it turned out looking a little blue because we can't use a flash.



Our sweet nurse also took some pictures of her and is making a sign for her that will hang over her bed in the NICU. Emma has been sleeping fine, and she's been taking a good amount of formula through a tube in her nose. I read to her tonight, and we prayed over her - prayers for healing of her incision and the defect in her spine itself. Please join us in this prayer.