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.

And the neurosurgeon finally shows up...

Our pediatric neurosurgeon is PHENOMENAL, and he's the only one in the Upstate. So when he finished our baby's surgery around 4:30 yesterday, he had 2 emergencies to tend to, and he didn't get done until 10:00 last night. We never heard from him at all and had no clue what the heck was going on with our daughter. His nurse reminded him this morning that he hadn't spoken to us about Emma's surgery, and he said it was the first time in 18 years that he had forgotten to speak to a family. Yep, forgotten. So the odds strike again: (1) having a baby with spina bifida; (2) having a baby born breech (only 3% of babies); and (3) the first family in 18 years' of a surgeon's professional career to have been forgotten. Again...can we just win the lottery, please?

Anyway, he finally came to see us this afternoon around 6 pm after the office visits he had all day. He, of course, apologized profusely and felt so bad. I'm telling you, it's just hard to be mad at this man. After all, he saved our daughter's life yesterday. Oh, and he's a genius. The good news is, when Emma arrived, she didn't greet him with any surprises. The lesion on her back is low, and she will likely have some bowel and bladder function issues, as well as some ankle function problems. He can't guarantee this is all it will amount to, but in the grand scheme of spina bifida, this is pretty good news. Of course, we would love for our daughter to not have to deal with any of that, and that is what we will CONTINUE TO PRAY FOR! We were surprised that the incision on her back is so large because he's VERY concerned about little girls having pretty (aka - really small) scars. However, Emma's is in the shape of a Y, with each piece of the Y at about 2 inches - pretty big on her tiny little back and hiney. It turns out, though, that when she was born, there was very little skin covering the area AROUND the lesion, so he had very little skin to pull together. The spinal cord itself was easy for him to work with, but she just didn't grow very much skin on top of and around it. Here's crazy odd number 4: the area needing covering was in the perfect shape of a heart, something he had never seen before. He had to use a lot more skin around a pretty small spinal problem to get it covered. So even when she gets married, she will never forget the Young name! And if she ever wants a tattoo, we can tell her that she's already got one. We ended up talking to him for about an hour and a half.

I have still been in a lot of pain today, and they can't quite manage it like I had thought they'd be able to. It has been a very busy day with lots of visitors, and I didn't get down to the NICU until 2:00 this afternoon. The NICU folks are having trouble getting a central PICC line in Emma, which is a longer-lasting alternative to an IV. She needs it for fluids and painkillers, but they're also giving her a ridiculously small amount of formula through her nose - they can't let her intestines get lazy, basically. She has a ventilator tube in to help her breathe since painkillers slow down breathing, but they will probably take it out tomorrow - her breathing is above average for kids in the NICU recovering from surgery. In the meantime, she is enjoying sucking on the ventilator tube and making cute little noises. We can see her little tongue moving a lot when they have her head turned on one certain side.

We tried to pick a picture for today that is good for the faint of heart - not too much incision or ventilator tube. In this picture, you can kind of see the wound on her back, but it's not too bad. The red glowing light is some kind of oxygen sensor. This is also one of only 3 times we've seen her with her eyes open, and Daddy was lucky enough to be there with a camera!

Baby Emma is Here!

Our C-Section was scheduled for 9:00 this morning, but we were the first ones there so they started about 8:30. There was some trouble getting my spinal block in, but once they did, everything else went smoothly. As soon as Emma was delivered at 8:42 AM, she hit the airwaves with some strong, healthy cries. What a beautiful noise it was. We were able to see her for a moment, and Russell was able to snap a few pictures there in the O.R. before they had to take Emma away to the NICU. After an hour or so in recovery, they were able to take Russell and I by the NICU to see Emma for a few minutes. Emma weighs 7 pounds 2 ounces and is 19 and 3/4 inches long. Turns out, she's a fiesty little girl as she pulled her first two IV's out. As a result, they had to put a PICC in her (basically a more stable IV in case you're like us and don't know what that is). She is sleeping on her tummy, and she has already been trying to lift her head!

We met with the neurosurgeon around noon before Emma's surgery and basically gathered that the lesion is low on her back, but the hydrocephalus was high and will require a shunt eventually (likely sooner rather than later). Both of these were things we expected, so no major shock there.

Emma's surgery began about 2:00 PM and lasted about 2 and 1/2 hours (we think). As soon as her surgery was over, apparently the neurosurgeon was pulled into some other emergency. As of Tuesday night, we had not spoken to the neurosurgeon to get a report on how things went exactly. What we do know that is that after the surgery she is doing well and resting per the NICU nurses. We were able to see her again at about 10:00 PM after I was able to get up for the first time. She has good movement in her legs but is definitely a tired little girl after a busy Day 1 of her life.

I personally am in some pain and just wish that I could be well so that I can gaze at my sweet little girl in the NICU. All in good time. Russell is pretty stoked about sleeping on the lovely recliner-turned-bed in our room. Other than that, he is so excited about being a daddy.

We can't thank our family, friends, church members, and so many others enough for all your thoughts and prayers. You have all been instrumental in our ability to make it through everything we have experienced - you all are blessings from above.

This is one of the pictures of her before surgery. Do you see the bandages on her little hand? That would be the aftermath of Emma vs. IV's.

Our baby has fat cheeks.

We had our last ultrasound this morning (Monday), and we found out a couple things about Miss Emma - first of all, her weight is back up again, to their best estimate. Of course, they have to qualify their estimate because it's pretty tight and hard to measure in there, and they say that their guess may be off plus/minus a pound. To quote Clark W. Griswold, "Drumroll please....drumroll..." 7 POUNDS SEVEN OUNCES! So in 3 weeks, they think Emary went from the 14th weight percentile to 52nd percentile. The next thing we found out is that she has HUGE cheeks. We have a fat baby. She gave us a good profile shot, and I almost couldn't believe what I was seeing! The ultrasound tech printed, like, 5 copies of the chubby cheek profile, so we have plenty to distribute!

She is still breech, and I found out this week that only 3% of babies end up breech. Add to that the chance of her having spina bifida, and I'm just wondering why we haven't won the lottery with these kinds of odds. Her feet are up over her head, and I only have to endure one more day of being kicked and punched in the ribs!

So here we are, getting ready to go out for my last meal as a big, fat pregnant woman...aka, the last meal where no one will question how much I eat. Sad.

My c-section is tomorrow morning at 9 am, and I should be out of recovery by 12. Emma's surgery will begin sometime around 12, but it could be later, depending on how she's doing simply from being born. Her surgery could last anywhere from 2 to 4 hours. Once she's out of surgery and in the NICU, Russell and I will pretty much be able to see her right away...if our moms don't beat us there! They only let 2 people at a time back in the NICU, and there are only 4 people total with authorization. Of course, Russell and I are 2 of those people, and we gave each set of our parents the option to choose who the other 2 would be. Clearly, the moms won.

"What, you want me to name someone? You want like a name? Oh, the pressure of a name... I got it."

Name that movie!

On October 9, 2009, one of our Maternal-Fetal doctors said to us, "I'm sorry to have to tell you this, but your baby DOES have spina bifida. I'll leave you two alone for a while," and he left the room. In the next few, worst moments of our lives, Russell and I prayed a tearful prayer that God would heal our child and make her "complete and whole."

As you've figured out by now, our daughter's name is Emma, but there's a little more to it than that. I am the third Mary in my family, and my mother-in-law, Mary Jane, is the second Mary in her family. (Yeah, I know, we're both named Mary Young.) We wanted to keep Mary in our daughter's name, but we thought it would be overkill to call her Mary Fill-in-the-Blank. So we decided on Emary (pronounced like Emory, the college). When we were figuring out what to actually call her, I looked up the name Emma online. In its English origin, it means "complete" and "whole." Given her diagnosis, that's pretty significant; on top of that, God was simply repeating back to us the words we prayed to Him in October.

We know that no matter what happens with Emma physically, she will always be complete and whole in God's eyes, as she is one of His beloved children. What a blessing it was to have Him speak to us so intimately about our baby.

Today was another doctor's visit, and I made sure to drink a sugary Sprite before we went. The visit was rather uneventful, but Emma did kick, roll, and punch enough to satisfy the doctors. We scheduled our pre-op for Monday, so now we just have a little bloodwork and one more ultrasound to go! The GREAT news is that my sister, Anissa, is driving up from New Orleans on Sunday and gets to come to the ultrasound with me :) Russell, my mom, his mom, and I are the only ones allowed back in the NICU once Emma is here, so for some of our family members, the ultrasound is as close as they can get for a little while.

One more day of work left! It's very cool to be able to say, one more day of work, one more ultrasound, one more haircut, one more day of maternity dress pants...

11 ultrasounds down, 1 to go

We had another ultrasound yesterday, Monday, March 8, and everything seemed ok. Nothing better, nothing worse, really. The fluid on Emma's brain had not changed from the week before, but it's still much higher than what we're used to. They did not do any growth statistics on her; the last we know is that she was in the 14th percentile of her weight 2 weeks ago. She was just over 5 pounds, which doesn't sound like a small 14th percentile baby to me - what kind of babies are they comparing her to?!?! I think they'll do more growth measurements next Monday, the day before she's scheduled to arrive. They measured her vitals yesterday and gave her a "test" based on those vitals, plus her movement and practicing breathing. She was being a little rascal and wouldn't move very much OR practice breathing. She was a sleepy little girl, and I thought we would be there for hours. She finally got over her stage fright, though, and gave them what they wanted!

She is breech and always has been, with her feet, legs, arms, and fists up over her head and in front of her face. There are times when I sit down and can definitely feel something digging up under my right rib cage.

Russell and I are still praying for healing for our sweet baby - we will continue to do so, as long as it takes. Thank you so much to all of our friends and family who have supported us through this pregnancy! Not much longer now...

On a different note, Lola is NOT ready for the baby to come because that means she can't curl up in my pregnancy pillow anymore.

10 Days and Counting...

Welcome to our blog! Russell and I hope that this will help our loving friends and family keep up with what's going on with us and with Emma as we approach the big day - March 16. For this first blog, I'll go ahead and explain what's going on with us and our baby, just to get it out of the way for those of you who don't know or aren't clear.

On October 9, 2009, we found out that (1) good news: we were having a baby GIRL! and (2) bad news: she has a birth defect called spina bifida. There are different types of spina bifida, and she has the most common, yet most severe form. Basically, during the first 28 days of her existence, she was a plate of cells that rolled up into a tube (the neural tube). However, at some point towards the end of that rolling process, the bottom of the plate did not finish rolling up, and her spinal cord is still flat to this day. Because it has been flat, nothing could form properly on top of it - vertebrae, tissues, skin, etc. When she is born, her spinal cord will be completely exposed. This will require neurosurgery in the first 24 hours to finish rolling up the cord and then to close everything on top of it. Nothing can be done to retroactively fix any nerve damage that has been done due to the spinal cord being exposed. She will not exactly be paralyzed, but there can be varying degrees of muscle and joint impairment. Even when she's born and the pediatric neurosurgeon has an idea of what we're dealing with, we still won't really know what we're dealing with. Every child with spina bifida is different, in dozens of ways that you don't fully know the extent of until they stop growing (which could be as long as 20 years). The other major effect of spina bifida is the pooling of spinal fluid in the brain. This is something that has been monitored throughout our pregnancy, but there's nothing you can do about it. The fluid on Emma's brain hasn't been that bad. She will still most likely have to have a shunt eventually (a tube that drains the fluid from her brain, and it's there forever). Shunt surgery sounds really scary, but it's so routine and common that it doesn't really freak us out.

Regarding spinal cord injuries, the lower the injury, the better - because only functions below the spinal cord injury are affected. The best they can tell is that her lesion is low, so that's good news. Once she's born, they can pinpoint exactly which vertebral (is this a word?) level we're talking about, and that will give us a better estimation of specific problems we may be dealing with. But still - it will just be an estimation. When adults have fluid on their brains, it's very serious because there's not a lot of room in there for swelling; not so with newborns. Their plates aren't fully formed and connected yet, so there IS room for a little extra fluid, at least for a little while. We have been told that even though there is fluid on her brain, she won't be born with an enlarged head or anything.

The doctors guess that a folic acid deficiency contributes to the development of spina bifida, but I was taking MORE than they recommend for pregnant women....so that reasoning is out. Other things working against us are (1) we're white (2) we're of Irish/that-part-of-the-world descent and (3) we live in the Southeast, specifically South Carolina. Doctors have no idea why these are common denominators in the development of spina bifida. Doctors know for a fact that it's not hereditary, but our daughter will be more likely to have a child with spina bifida, so I don't really understand how they can make the it's-not-hereditary claim, but I'm just going with it. Our neurosurgeon, the OFFICIAL on spina bifida, called it a lightning strike. If we decide to try for a second child, we do have a slightly higher risk of a second child having spina bifida, and they will try to counteract that by prescribing me a dosage of folic acid that is 1,000 times stronger (literally) than what they recommend for regular pregnant women.

We learned last week that Emma will be born on March 16 - exactly a week before her due date. We have the option of having her naturally or having a C-section. Having her naturally sounds CRAAAAZZY to me, considering a neurosurgeon, surgical team, and the NICU have to be ready for her, NOT TO MENTION that she'll be born with an organ (spinal cord) exposed!! One doctor even questioned my decision to have a C-section (and subsequently made me feel guilty)...needless to say, I have requested not to see him ever again. So now we're trying to make it to March 16, and hopefully Emma doesn't have different plans.

Russell and I have been surrounded by loving and praying friends and family that continue to amaze us. We truly couldn't have made it without all of you, and we will continue to treasure your prayers. We know that the love that has been showered on us is truly God's love poured out through all of you. No matter what happens, we will pray every single day for healing. There currently is no cure for spina bifida, but the world of stem cell research is very promising. We are banking Emma's cord blood, which contains stem cells, at Duke (the center of U.S. stem cell research) for this reason.

Phew, that was exhausting. Sorry for the deluge of information, but we have been asked every question under the sun over the past 5 months. Hopefully this first post has answered most of them! The Spina Bifida Association has a great website with more information. And finally, here's a 3-D ultrasound image of Emma at 29 weeks. She always has her hands up in front of her face, like she does in this one. Don't be alarmed that she looks kinda goopy - that's how the 3-D image comes out. Plus, all you parents understand that it's pretty goopy in there anyway. So far, we have had 10 ultrasounds.