At our wit's end

I don't know how you moms do it. You know who I'm talking about - you who have colicky children. What was your natural hair color after your children got past the colicky age? And do you have a magic cream that has made the bags under your eyes disappear?

Emma doesn't have colic, per se, but she's been screaming with gas pain all day, every day since last Wednesday. It's absolutely heartbreaking. You may be tempted to blow it off as oh, crying baby, she'll be fine...and I know she will be...but she SCREAMS in pain. Her knuckles turn white, she scratches the sheets and pillowcase with her fingers, pulls her knees up in agony...it's just terrible. She loses her breath because she's crying so hard, and she just swallows more air, which creates more gas. Mylicon's got nothing on this little girl.

Emma's been eating very thick formula (which is hard to burp through) since Friday morning, and it's gone well so far. It takes a lot longer to feed her, of course, because she's sucking grits through a bottle basically, but she doesn't get mad about it. The rest of us would be throwing that bottle across the room. Have you ever gotten a milkshake, and they only give you a straw, no spoon, with which to eat it? We've all sucked our faces inside out trying to get thick milkshake through a straw, and we're asking this poor baby to do something similar.

Emma's been through so much. I know she doesn't remember specifically what she's dealt with, but her life hasn't been easy. Honestly, our family is very frustrated that we've been praying for God's mercy on her...and about the time we started praying that prayer, she began having crippling gas pain. Where is His mercy?! And this may be very boastful of me, but I'll say it anyway: I had reached a point where I could ask God for mercy...ambiguously...trusting that His will, whatever it is, would be ok with me...I wasn't asking for specific acts or changes, just mercy in whatever His plan was. I trusted Him. And that can be very hard sometimes! So now, we're even worse off after telling Him that I trust Him and to have mercy on our daughter. I will never understand why our daughter is experiencing such crippling gas pain - something completely unrelated to the reason we're in the hospital. We're going to keep on with our wait-and-see routine to make sure Emma can eat from the bottle ok. It was a little over a week ago that she didn't do so well eating from a bottle again, so maybe this go-round will be better.

Thank you to all of you who have commented on the blog, signed the guestbook, sent us cards, brought us meals, sent text messages, called us, and visited us in the hospital. We are so blessed to be loved by so many. God bless you all.

Back to the bottle

Not much has changed with Emma. She felt better yesterday than she did on Wednesday. She has had marathon days of waketime - 12 hours Wed., 13 hours Thurs., and about 14 hours today. Unfortunately, her little tummy started hurting again today, and she was screaming in pain for a good part of the day.

Yesterday, the fantastic PICU doctor told us that it's fine to keep Emma's NG tube in for a while. However, if we get to next week and there's no real change, we need to figure out if we want to feed her with a bottle again. He said there's no need to make a decision now, just to have it in the back of our minds. Well, lo and behold, while my parents were staying here last night, Emma somehow pulled the NG tube out of her nose and stomach. So this morning, the doctors asked us if we wanted to put the NG tube back in (which actually isn't a big deal) or if we wanted to try to bottle feed her again. We decided to go back to the bottle and the really, really thick, grit-like formula. Emma did ok with them. As of 9:00 tonight, Emma's had 4 bottles. She choked twice on all the saliva she generated trying to suck down the thick formula, and she choked on her spit a few more times today. We'll just see how all this goes...Oh, and Russell I are spending the night tonight after having 2 nights off, thanks to our parents. Thank you, Emma, for pulling out your feeding tube and bottle feeding again when we come back to stay for the night. If any of you see me this weekend, hand me some under-eye concealer. And a pillow and a blanket.

Even if we continue to feed Emma with a bottle for a while, we still don't really know what the next step is. The hospital isn't in a really big hurry to make us go home right now, since everything with her is minute-to-minute. So, again, it's hurry up and wait.

The latest news from the PICU (that we know of) is that a little boy next door to us passed away. He came in yesterday after running out between two parked cars and was hit by a truck. I'm not sure if his parents took him off of life support or if he just didn't make it, but he passed away this morning. Please remember this family in your prayers.

Here's a picture from the other day that I treasure for 2 reasons: (1) Emma is snuggling with her Nan; (2) Emma is actually sleeping during the daylight hours. This was short-lived. (PS-Emma doesn't have a bandage on her face; that's the tape holding the NG tube in place. Lotta good that did us last night.)

Ahhh, how nice to stretch out

We are LOVING Emma's new room in the PICU. It's so much more spacious. It's still not as nice as her room in the NICU, but that's ok. Russell and I have spent the last three nights here, and they've been ok. Monday night was pretty good, and last night was just ok. Emma chokes a lot at night, which is alarming to wake up to. She also makes a ton of noise when she sleeps, which we could sleep through when we only hear it through a monitor...but sleeping through it IN the room with her is a different story.

I last blogged that Emma choked 21 times from Sunday morning to Monday morning; she did it 12 times from Monday morning to Tuesday morning and 10 times from Tuesday morning to this morning. Even though the choking incidents have gone down in number, that doesn't mean the problem is fixed...it just means the symptoms aren't as prevalent on those given days. Emma's throat muscles just don't work properly, and there's not really any way to fix them. So we're just sitting tight, waiting to see how things develop.

Emma had a terrible day today, probably the worst day she's had ever since she was born in terms of pain. Because her breathing is so precarious right now, they can't give her much in the way of pain medicine. Mom and I were about to go bonkers. Emma stayed awake for 12 hours, beginning at 5:30 am, and she cried...no, make that SCREAMED...beginning at lunchtime until she fell asleep at 5:30 pm. We finally figured out (the stinky way) that she was gassy. Poots ruined my day. She was in so much pain; it was just heartbreaking. Since it's the hospital, she can only have Mylicon every 6 hours...which did us no good today. I have a theory, though: Emma's getting formula that runs through a tube from her nose to her stomach, and I think that some air got in that tube and caused all this. We witnessed it today, actually, and luckily caught it before it was too late. The nurse just had to come in and disconnect it at a certain point to let the air out.

It's kind of weird to watch stories on the news and read about them in the newspaper and realize that these are the kids right down the hall. You may have read in the paper about a 7-month-old boy from Easley whose death is being treated as a homicide. He was our next-door neighbor. You may have also seen that a 2-year-old little girl drowned - we saw the helicopter fly her in and then saw the helicopter crew 5 minutes later. In fact, I saw more of this sad situation than I wanted to because I had to use the bathroom; we have a toilet in Emma's room, but it sounds like a grenade going off, so we use the bathroom right outside the PICU. I couldn't get to the bathroom around the helicopter gurney last night, and I had to walk past the little girl's crying family this morning an hour after she passed away. No telling what's next. Our night nurse told us before she left this morning that it was a bad night. They anticipate a bad weekend this weekend because it's a holiday weekend. The nurses have told us that during holidays and summertime, they are full with traumas, and during the fall and winter, they're full with flu and pneumonia cases. So far, we've found that to be true - with the warm weather, one little girl drowned and another little boy fell out of a tree. He's doing well, by the way, for those of you who have been keeping up with my blog.

God, please have mercy on our little girl. We don't know what your mercy will look like, and we don't know what to pray for specifically. You feel the groans of our hearts when we have no words, though. We trust that you will guide us through this trial; please reveal your will to us, and let us be at peace with it. Thank you for these nurses who care so much for our little girl, and please comfort all those families around us who are struggling as well.

Modern medicine is a lot more "wait and see" than you'd think

I last posted that Emma was having trouble breathing and taking her bottle. Things haven't really improved. From 9:00 am Sunday to 9:00 am Monday, she choked on her saliva 21 times. Her oxygen level drops during some of these episodes, but it's also dropped a few times when she's not choking. Right now we're just in wait-and-see mode...so much is unknown right now.

Russell's parents spent the night at the hospital on Saturday night, and Emma cried all night long. They tried to feed her from a bottle a couple times, and Emma really wasn't all that interested. The nurse gave her Tylenol twice, and it really only calmed her down the second time she got it. Then, of course, Emma slept for about 13 hours on Sunday and was awake all night Sunday night when Russell and I stayed. She wasn't crying all night (until about 6:00 am), but she was restless and a little fussy. She's been pretty good today, though. Russell and I are spending the night tonight (Monday night), so we're really hoping she sleeps well tonight!! They put in an NG tube (feeding tube) that runs from her nose into her stomach that feeds her formula, so if any of her fussiness was due to hunger, this could make it go away. A lot has changed in the last few days, but now we're just kind of riding it out for a while. We did get to change rooms tonight because we have a GREAT PICU nurse who gave us a bigger room and found us a fold-out love seat-looking thing that Russell and I can both sleep on.

As I've said before...over and over...we're now praying for God's mercy. His mercy may come through healing and restoration...and it may not. But we know that He's looking over our daughter and holding her every minute of this hospital stay.

A major backslide

I didn't blog last night (Friday night) because things got pretty chaotic. Basically Emma couldn't take her 9:00 bottle, and her breathing has gotten worse. She's choking A LOT more, and they had to start her back on her IV fluids instead of taking a bottle. The ironic thing is that they took the PICC out of her leg Friday morning...and then had to put an IV in her head Friday night.

We are waiting to see how she does in the meantime. This is so incredibly painful, and I'm on a roller coaster of emotions. The mornings are usually the hardest times for me. It's so hard to wake up and face a whole day knowing that our daughter is fighting for her life. I immediately start the day praying that God would be merciful. This is all I can pray for now...because I don't even know what, specifically, to pray for. But His mercy on her is all she needs.

In the meantime, I'm trying my best to enjoy each moment and not look ahead...because we don't know what lies ahead. As I've said, she is moving her legs like a champ. So we're enjoying changing her diaper because she's hilarious kicking her legs around. And she is VIOLENT with those kicks. She makes it so difficult to put a diaper back on, but we love her for it. I so enjoyed sitting next to her today while she napped - I lowered the side of the crib and laid my head on a small pillow on the edge of the crib. It was the perfect position for me to gaze at her long eyelashes and perfectly pouty mouth; she held my pinkie finger for an hour.

Before my sister went back to Louisiana, she bought Emma a precious doll in the gift shop. I realize this is a typical hospital/gift shop gimic, but it's adorable. You squeeze it, and it says a prayer. I swear they actually recorded a child saying the prayer (or a variation of it) that so many of us grew up praying:
Now I lay me down to sleep.
I pray the Lord my soul to keep.
May angels watch me through the night,
and keep me in their blessed sight. Amen.

Here's a picture of Emma snuggling with her buddy. She was gazing at it saying the prayer, and I caught this picture right as she fell sleep.



Oh, and the weird-looking hospital blanket in front of her face is actually a handy contraption to keep her binky in her mouth. The blanket is rolled up and taped together, and the binky is taped to it. You put it next to her so she can snuggle with it, and she doesn't really spit the binky out. It's her binky buddy.

Another roller coaster day...and not much to show for it

Today was so up and down, and I feel completely worn down by it. We're learning a little bit at a time how to prevent Emma from choking on her spit. We can't ever guarantee that it won't happen, but there are little tricks to help. You start to hear her throat get kinda junky and raspy, and you can pretty much bet that she will choke sometime soon. She needs to lie on her side, and she needs to be sucking down pure, thick formula so that her spit will mix in with the thick formula and not aspirate into her lungs. We have to try to keep her as calm as possible so that she doesn't get upset and create all these secretions - mucus, spit, etc. that will make her choke. Emma choked 4 times today, and they were absolutely excruciating. During one of these episodes, her heart skipped at least one beat, she turned a little blue, and her oxygen dropped.

They started a reflux test on Emma today. She has a small tube in her nose that runs from this little machine that sits in her bed all the way to the bottom of her esophagus. If she refluxes, the acid will come up and hit the bottom of the tube. The tube has some sort of pH reading on it...so if acid hits it, the pH level drops, and this little machine records that. There are all these explicit instructions we have to follow about pushing buttons and writing things down - when she's upright, when she's eating, when she's done eating, when we need to record an event like choking. We're really praying that she has bad reflux. I know that sounds strange, but bad reflux can contribute to her throat closing up. At least that's something they can give her medicine for. She wasn't a projectile puker, though, so it's probably not that bad. But we'll just see what the results say.

To top it all off, Emma's head has really started to sink in the middle. That means she has to stay flat when she's lying down so that the shunt won't drain so quickly. But she has to be fed completely upright. If she refluxes, she needs to be more upright in the bed. When she doesn't burp well, she needs to be more upright. So what do we do? We don't know.

Here's a small ray of sunshine: Emma's moving her legs exceptionally well, and we saw her move one of her feet completely independent from her leg. Dr. Troup is still surprised at how well she's moving her legs, considering the large amount of fluid that's sitting on her spinal cord. Isn't it interesting how all we've been praying for this whole time was for Emma to have such good movement in her legs...and she has had exceptional movement, all things considered. And how thankful we are for that! But here's the irony: I could care less if she was wheelchair-bound for sure, if it only meant that we wouldn't have to worry about aspirating her spit, mucus, and formula and choking to death when her throat clamps down. I know that God doesn't work like that - He doesn't make deals or trades, because He is almighty and can do it all...or do none of it.

Dr. Troup told us today that the further out we get from her apnea episodes, the better the doctors feel about the breathing NOT being a brain stem problem (which can't be corrected) and being more related to the swallowing issues (which may or may not be able to be corrected). However, the swallowing issues may be the type of thing that builds and builds and builds until she reaches a breaking point and then stops breathing...and then we start this whole process all over again. We can't do that forever.

So, as always, I'm asking for prayer. Specifically, please pray for mercy - that God will either take her so that she won't have to choke her way through life or that He will show us the ways to make her life easier and safer. Ok, REALLY specifically - please pray for Emma to not salivate so much when she eats. Isn't it weird to pray for such a specific and bizarre thing? After she eats, that saliva gets stuck in her throat, even if she does choke some of it up. I'm so afraid that she's pulling it into her lungs. And now we're starting to question her ability to cough - I feel certain that involves the muscles that Emma's not so great with.

Now if you REALLY want to pray...and I mean have yourself a little come-to-your-knees, intercessory, work-yourself-into-a-fit kind of prayer, pray for 2 other families in the PICU. One little boy is 5, and he fell from a tree between 6 and 10 feet in the air onto an asphalt parking lot and cracked his skull 6 inches. His brain is bleeding, and they think if he makes it, there will be SEVERE brain damage. The other family has a 5-month old who has a serious problem with his DNA, which, of course, can't be fixed. The hospital in Anderson didn't catch onto this and thought he had a stomach problem, so they put a G-tube in his stomach. Unfortunately, they punctured his stomach, and the contents of his stomach leaked into his abdominal cavity and gave him a blood infection. So now he is literally fighting for his life. Because of the DNA problem, there is literally NOTHING that medicine can do to help him - only our Savior can do this one.

I have always led such a blessed life, and I have always been thankful for all these blessings. Oh, how things have changed...I'm still blessed, believe me. But now it's almost embarrassing to think about the things that used to worry me and the things I used to pray so diligently for. God sure can give you some perspective on life. And I hate that perspective right now.

Another roller coaster day

Today was a day full of conversations with doctors and therapists. When I came in this morning, Emma started her heavy, labored breathing. The PICU doctor heard it and saw how hard she was working and said, now THIS is when she needs breathing treatments. She was getting all bent out of shape, so my mom started holding her and rocking her. My mom also gave her the breathing treatment; as this was going on, Emma started choking on her spit again, and everybody panicked...again. Then we put her in the bed, and she choked again, about 30 minutes later. It's the most horrifying noise and sight you can imagine, and we now know that she may always do that.

The PICU doctor and then Dr. Troup talked to us about what's going on with her. From what they can tell at the moment, Emma's throat muscles don't work like they're supposed to. We've been told by several people that swallowing liquid is one of the most complicated, exact sciences that our bodies perform. Here's Dr. Troup's analogy: when you drop a piece of meat on the floor, it stays together. When you drop a glob of water on the floor, it goes everywhere. So when you swallow a liquid, the muscles have to operate in a very exact, acute fashion to keep that liquid all together. Emma's muscles don't do that, and she aspirates some liquid into her lungs. This muscle disfunction is a result of a neurological problem. The doctors still don't know what EXACTLY caused her to stop breathing, but now they think that she was aspirating enough formula and spit, plus she may have been phlegmy, and who knows what else...that basically formed the perfect storm and made her throat clamp together. Emma can't swallow anything thin like that very well, which is why she's been choking on nothing - she can't really swallow her spit. They're also going to do a reflux study tomorrow hopefully (an MII...MMI...?) to see if she has bad reflux. If she does, this could also contribute to her throat closing up.

There's nothing they can do to fix this problem. The good news is that she can possibly grow out of it...but it's not quite that easy. You can't fix a neurological problem; you can only hope that therapy will help it. Dr. Troup said that her Chiari malformation is the most unique and unseen one that he could imagine; he's never seen anything like it or heard of it in a book or at a seminar...ever. He knows it has to be decompressed, but he wants to see another swallow study in a couple weeks. Having the ventilator in for 5 days can affect her ability to swallow, so yesterday's swallow study isn't a good baseline for him to compare to a post-surgery swallow study. After the next swallow study in a couple weeks, if it's not much better, he'll do the decompression soon after, like a month from now. If the swallow study is better in 2 weeks, he may wait another 6 or 8 weeks to do the decompression and then compare the swallowing function. The Chiari surgery won't necessarily help her swallowing function, but it's a possibility. Even if it does, we won't see an immediate difference. It will still take time for that to take effect. So...in the meantime, we have to prevent Emma from getting a cold or anything that's going to cause excessive secretions. She WILL choke on them, and her throat WILL close up again. We were assured today that if she gets a cold, she WILL be back in the hospital. If you want something specific to pray for, please pray that she stays healthy and that the Chiari malformation is causing some swallowing difficulty that can be relieved by the decompression surgery. Unfortunately, we may be keeping Emma in a figurative bubble - DEFINITELY no children around her, and she'll just stay home all the time. For a long time. The really unfortunate thing, too, is that we're going to have to limit her visitors. We will have to be more diligent with 15-second handwashing, constantly wiping down hand surfaces (door knobs, switch plates, handles, etc.), and keeping our own selves healthy.

Emma has started eating from her bottle again today and has done really well. The formula is as thick as baby food that's spoon fed, but she takes it like a champ. Our pudgy girl loves her food. One problem we came across this evening is that she gets mad when you take the bottle out, and her saliva glands are really working from eating. So when you take the bottle out, she's salivating, crying, breathing heavy...which leads to...you guessed it, choking. Sigh. I know it sounds like we can get this under control, but when she chokes, her oxygen level tanks, and you feel like you're watching your child die. The scary thing is that maybe one day we WILL watch her stop breathing from this.

I know that all of this today sounds like great developments...but there's still a lot of scary stuff. If she has to keep coming back to the hospital, there's a chance she wouldn't be able to eat orally for a while and have to have a G-tube in her stomach to feed her some of the time. There's even a chance of a temporary trach to let her breathe if it gets bad. These are horrifying things for any person to go through...which leads me back to my point - if God is going to take her, just take her. Just take her with you, God, so that she can be happy with you, with no breathing tubes, or feeding tubes and where she can walk and run and play in the perfect harmony and peace of Your home. It probably horrifies a lot of you to read this coming from a mother, but you have no idea what it's like to watch your child suffer and then imagine even more suffering for her. No idea.

We are just so desperate for prayer. So desperate. But let me assure all of you reading this blog - your love and prayers for our sweet baby are absolutely amazing. We feel God's love poured out through you every day, and there are no words to describe how blessed we feel by all of your prayers and love. Thank you.

Tonight I'll leave you with a picture of Emma snuggling with her friends. This was the strategic positioning of her binky. The binky is held in with a bulb aspirator, which the pink puppy is holding to prevent from rolling down the bed. The doll is keeping Emma from throwing her hand up and moving the binky contraption.

I don't know the difference between good news and bad news anymore

Today was a hectic day for us and for Emma. She had a good night last night, with the help of sleep (during which she breathes easier) and some breathing treatments. My sister had an absolutely delightful time with her last night, and being the perfect aunt that she is, she's going to stay with Emma again.

When I came in this morning, Emma still sounded awful, like she was struggling for each breath. Then she got kinda sleepy and calmed down a little. The PICU doctor came by to say that he's concerned about her swallowing and that he ordered a swallowing study. He also asked the pediatric pulmonologist to come back by to do another scope of her throat. I showed THAT doctor a video of her making all kinds of noises, and he was certain that she had some issues with her vocal chords. However, when he had the scope on her, she made those noises again, and her vocal chords are fine. She still has some soft cartilege in a few places that is making some noise.

Then Dr. Troup and his nurse, the PICU doctor, and the pulmonologist plus a bunch of nurses and staff all convened about her. They were very pleased with how well she was doing off the vent...well being that she was breathing on her own still and that her oxygen and blood gases are good. But her respiratory rate is still really low...for some reason, no one seems worried about that. Or maybe there's something they're not telling us...anyway, the doctors still don't really know what's going on with her, which is why the swallowing study and possibly a study to see if she has reflux were requested. If Emma does well for a week, and she can leave on pretty good respiratory terms, she'll have the Chiari decompression done in a month or so. Then she'll have the fluid pulled off her spinal cord in the next few months after that. Dr. Troup just wants to be in the clear with her respiratory issues before he intubates her for another surgery. I asked Dr. Troup: if she does ok for a while in the hospital and she goes home with us, how do we know she's not going to stop breathing again in 3 weeks? And he said, "I can't promise that won't happen."

So then Emma had the swallowing study. This involved her sitting in a chair that moves back in an x-ray machine while the speech pathologist (who actually studies feeding and swallowing) fed her with all kinds of variations of bottles, nipples, and formula thicknesses. Emma aspirated immediately, meaning that she takes formula into her lungs. The best solution they could come up with is sitting her upright, almost at a 90 degree angle, while also pulling her head up from the base of her skull. THEN she has to be fed this incredibly thick formula/rice cereal mixture. And I mean, THICK. When we got back to the room and learned how to do all this, the speech pathologist was giving us the "recipe" for her formula. Her recipe is 1 oz of formula to 2 and a half teaspoons of rice cereal. She somehow came up with 2 oz formula means 8 teaspoons of rice cereal...great math, huh? So we're trusting this woman with teaching us to feed our baby so that she doesn't suck formula into her lungs, and she can't add 2 and a half plus 2 and a half. This sounds like an easy solution to the problem, right? Wrong - she's still not breathing well, and she's choking on her spit all the time now. Any type of problem swallowing is a neurological problem...the neurological problem could also cause her to stop breathing. So if Emma doesn't breathe, it could be because she's aspirated so much formula and spit into her lungs OR it could be that there's a neurological problem that causes her to stop breathing AND not be able to swallow.

We'll be here in the hospital for a while, just watching her lie uncomfortably in a hospital bed while she chokes every now and then and trying to feed her the right way. The reflux study could be helpful because reflux can actually cause the vocal chords to close up. Still not optimistic about that, though...I'm just so discouraged right now. With each day, things are getting ruled out as being problems, which sounds good. Except that with each problem that is ruled out, a solution is ruled out. And today's problem that was discovered is not encouraging - she can't swallow correctly. And may never be able to. And to top it all off, she's getting shots in her stomach to prevent blood clots because her PICC leg is so swollen. And her nose is bleeding because the oxygen running through the nasal cannulas is drying out and irritating her nose. She's been crying the most pitiful little cries for an hour now, and we don't know why. She's still struggling to breathe. She will struggle to eat. And I'm struggling to understand why God brought her here to suffer.

Prayers needed, now more than ever

Today they took Emma's ventilator out at 1:15. She struggled to breathe for a while after that, and then she went to sleep peacefully. Even though she was sleeping peacefully, her respiratory rate was very low. She woke up again and fought harder than anyone should have to fight for each and every breath. I would give my life for her to be able to take even one easy breath. We all cried and cried watching her fight and struggle to breathe. She finally was getting tired, and I was begging her to fall asleep so that she'd breathe easier. Then she choked on her spit and probably some other secretions as a result of taking the vent out. So of course, she gasped for air even more and broke our hearts even more. You can actually hear all the junk in her throat and you just want to be able to clear it out for her; unfortunately, suctioning it out can make it even worse.

Finally, the respiratory therapist got permission from the PICU doctor to give her breathing treatments that will reduce inflammation in her throat and get rid of some of those secretions. As soon as Emma received that breathing treatment, she was out like a light and breathing well again...breathing less, but not fighting to breathe.

Which leads me to my next concern...Dr. Troup mentioned to us that there is a large fluid pocket in Emma's spinal cord that could eventually affect her arm movement. This would be a surgery for a later date. However, now we're seeing Emma's arms tremble...I've noticed it all day and especially now that she's sleeping. My sister noticed it, too. This is definitely something I'll mention to him tomorrow. I'm sure I'm totally overreacting, but I think I've earned the right.

My sweet sister is going to spend the night here tonight with Emma. Russell and I have such a hard time being here for 12 plus hours every day, and we can at least sleep at home. Somewhat. The nurses here are amazing, and what a blessing that we can go home at night, with some relative peace of mind. Now that she's having such trouble breathing when she's awake, we want someone to be with her to hold her hand and talk to her while she's struggling. Go ahead, call us bad parents for not being here 24/7. But I'm being open and honest. Now, if she were a 4-year-old asking for her mommy, things would be different.

At this point, they're just going to wait and see how her breathing goes. We have no idea what happens next. Unless she stops breathing again - then we go for another surgery. 12 hours passed between the first time and the second time she stopped breathing, so we don't know what to expect now.

I keep telling Emma how much we love her. Over and over. And I try to imagine that God has her in His big arms, cradling her. The thing I'm struggling with (and that millions of people have struggled with over time) is why a loving God can let her suffer. Alzheimers patients and their families, like my coworker and friend, Leigh's mother come to mind - why has she suffered for so long? This may sound like an awful statement to make, but if God is going to take Emma, then just take her...why make a baby suffer? You would think that the last thing a mother would want is for her child to be taken from her...but actually the last thing a mother wants is for her child to suffer. The selfish desire is to have her child with her...but I've learned quickly that the TRUE love of a mother overrides any selfish desires. And this is exactly why God gave His Son - He loves all the rest of us, ALL His children, so much that He unselfishly watched His heavenly Son suffer the most horrific tortures man could conjure up - a temporary pain so that the rest of us could have eternal life - life with Him without pain, suffering, or hurt. I have a better understanding of the love that God has for us - I can't imagine watching my daughter suffer, at my own will, for anyone else. John 3:16 takes on a whole new meaning as a parent.

So please pray that our daughter doesn't suffer. Russell and I have prayed many times that God would not only heal her spina bifida, but that He would protect her from all the other nasty things in this world. This prayer hasn't been answered...because here we are again at the hospital. But we're still praying. Praying for comfort, her suffering, healing of all her problems, big and small. Please join us in this prayer. I have tried all along to pray prayers of faith, for this is what God asks of us...but I'm going to be honest: I won't stop praying, but it's getting harder and harder to believe that He will answer our prayers. I will pray for healing for Baby Emma...always...but when she's suffering, it's easier to ask Him to just take her pain away, no matter how He does it.

Today was semi-eventful. Tomorrow, Monday, is the big day. In preparation for that, they took Emma's ventilator down a little - it was forcing her to take a minimum of 15 breaths per minute. She breathed over that for most of the day, which is good. They also changed her sedation. She woke up at 4 am WIDE OPEN, and her sweet nurse Angie sat with her to keep her company and also to make sure she didn't grab one of the many tubes and wires that surround her. Later in the morning, Emma wasn't rowdy, but she was very awake for about 3 hours - she was looking at people, listening, following with her eyes, squeezing people's fingers, and moving her legs a little. They actually ended up giving her some meds to get her to rest.

Later in the day, they changed her pain medication to a constant drip that will leave her system in about 30 minutes after you cut off the drip. That way, when they try to take her off the vent tomorrow, if she doesn't breathe well, they can't blame it on any medication. But today they had to increase the amount of that medication PLUS give her another one because she was even getting fiesty on those. She's a fighter, big time. They stopped her feeding tube this afternoon because they want her stomach empty; if she spits up tomorrow off the vent, she could possibly aspirate some of it back into her lungs, which are unstable anyway.

Which leads me to this point: we can already see many inherited traits in Emma. She has a combination of my blonde hair with Russell's grandmother's hair; she has my eyes; she has Russell's nose and mouth. She has Russell's toes. The last couple of days have shown us, though, that she has two of her great-grandmothers' fiestiness. These two great-grandmothers are no longer with us, but we can see them in the way that Emma sleeps with one eye open and fights sleep so that she doesn't miss anything (like Russell's Mama Dot); we see them in the way that she fights and fights to get her way (like Mama Dot and my Mama Parris - Mary Audrey, one of Emma's namesakes). I know that these two women are looking down and pointing their fingers at her (like they both always used to do) and saying, "Now that's my little girl. You tell them just exactly what you want." They try to get Emma's arms down under her blankets so that she doesn't pull on her tubes, but she always manages to sneak those arms out. A second nurse called her Houdini tonight.

So anyway, tomorrow they're going to see if she can breathe on her own without a ventilator. There's some confusion about whether the vent will stay in but off until she needs it for a little while or if they'll just completely take it out and see what happens. Neither scenario sounds pleasant. Russell and I just don't know if we can sit in the room with all those doctors and nurses and just wait on her stop breathing again. We have no idea if they'll just keep her off the vent if she is breathing but still isn't breathing well. We don't know what's going to happen tomorrow, but there may be a conversation about another surgery at the end of it.

In the meantime, here's a picture of Houdini doing whatever she wants with her arm. Before I took this picture, her arm wasn't actually resting on the bed, it was just suspended over her head while she was sleeping. Hilarious, considering they were TRYING to sedate her.

Still Waiting

Not much change today. We're just waiting out the time on the ventilator, and hopefully Emma will do well enough this weekend that they can try to take her off of it on Monday. If she improves a little over the weekend and they can wean her off of it, they'll try to completely take her off on Monday. Then they'll just wait...wait for her to either breathe on her own for a long time or wait for her to stop breathing again. That's the scariest thing I can imagine. You may think us uncaring parents for this statement, but there's no way we can be in the room with her while we wait for her to stop breathing again. If they can't even try to wean her off the vent or if she does stop breathing when they take her off, we'll sit down and talk about having the Chiari surgery. It's kind of a given that she'd have it in either one of those cases, but we still have to discuss the risks and expectations. The expectation is that the Chiari malformation isn't causing these problems, but it's one more thing to cross off the list of possibilities. I asked Dr. Troup today how long we'd wait after the surgery for results, and he said it would be hard to say, but probably a week. In addition, the results wouldn't necessarily be 100% or 0% improvement; it could be anywhere in between, which really muddies the waters. What do we do if her breathing only slightly improves, but not enough for her to breathe on her own?? We don't have an answer.

Today they did another EEG to test for any seizure activity. Emma was asleep, so there wasn't a lot of brain activity to measure, but they still concluded that seizures aren't causing her problems. I wish they were. It's so strange to pray for seizures, or a virus, or an infection, or a shunt malfunction...but we need (1) an answer and (2) a way to fix it.

Here are some pictures of her in the hospital crib. We haven't taken many; it's so hard to see her lying there without being able to pick her up. It's amazing, too, that we now get so excited to see her opening her eyes or trying to move an arm, when just days ago she was all over the place. But soon after the amazement, we realize that she could be in pain, and that's something else to look for in order to give her meds. The worst is when she tries to cry...squints her eyes...tries to make a noise, but can't because of the tube in her throat. So all you moms, be thankful when your babies cry; something may be wrong, but at least they have the ability and outlet to tell you. Emma has been swaddled or had her arms wrapped up in blankets that look like angel wings, and she hates this. She loves to move her arms, but the second she gets one free, she's grabbing a tube.

Oh, and look at that strawberry blonde hair! Russell's grandma is the only one with red hair...and so fitting that she finally got a little girl with her hair after 2 sons, 5 grandsons, and 1 great-grandson.

Back in the hospital again...and this time it's SERIOUS

I'm running on no sleep, more tears than I've ever cried, and more anxiety, fear, and anger than I've ever had...so pardon me if this particular entry is hard to follow or is just very abrupt.

Tuesday afternoon Emma started having a hard time taking a deep breath and didn't have enough breath to cry. She wasn't taking a bottle very well, and when she exhaled, she wheezed/whistled. We took her to the pediatrician at 6:00 (the only pediatrican in town open until 7), and they gave her a breathing treatment and told us to go straight to the hospital. We got to the pediatric floor of the hospital sooner than they expected us. Emma's room was clean but wasn't totally ready, so we sat in there while they got it ready. I was feeding Emma her bottle when her eyes rolled back in her head, and she turned blue in an instant. And I mean INSTANTLY. She stopped breathing and was completely limp. Luckily, nurses were in there, and we yelled for help. Of course, we all thought she was choking. One of the pediatric ICU (PICU) nurses just happened to be on the pediatric floor because she didn't have a patient, and she came running in. She's the one who really got Emma breathing again because she's a little more trained on emergency situations. In the end, there were about 20 people in her room in mere seconds. They transferred her over to the PICU, and the doctor told us he hoped it was just a cold/virus. There's something in babies' brains when they're less than 3 months old that will trigger them to stop breathing when they have a virus. We know that God was watching over our child by the way these events unfolded.

Emma stopped breathing again early Wednesday morning, so they ran a scope down her throat to see if there was any vocal chord paralysis or anything funny going on in her airways. All of that looked fine. After that, they put her on a ventilator to make sure she didn't stop breathing again. They did an EEG to measure her brain waves to see if she was having seizures. She was kinda sedated and very sleepy when they did the EEG. The results came back fine, but since she was alseep, they want to do another one when she's more awake. They did an MRI of her Chiari malformation and of her spine to see if there's something else going on there. The Chiari malformation is very common with spina bifida kids; the bottom of the brain is pulled down into the neck a little. It usually doesn't cause problems, but it can occasionally. Emma's Chiari is very compressed and would require surgery eventually, but Dr. Troup still doesn't think it's causing the breathing problems. There's also a really large fluid pocket in the middle of her spinal cord lower down that will cause major problems later in life, even affecting her arm movement, but this is not related to her breathing problems now. This is a surgery for later.

The goal right now is to get Emma off the ventilator to see how she does on her own. This morning, Emma wasn't under much sedation, so she was taking breaths on her own - unfortunately, she wasn't taking very many breaths at all, and they were very irregular. Because they're so irregular, she and the vent can't get in synch. She's basically fighting the vent. So now they've had to sedate her completely so that the vent does all the breathing for her. I can occasionally see her take her own breath, but it's very shallow and rare.

Even if they don't reach the goal of getting Emma off the vent, Dr. Troup will still do the Chiari decompression surgery next week. He took some fluid off her brain through a reservoir in her shunt - one, to test it for infection, and two, to pull extra fluid off. However, he doesn't think that any of these three things are causing the breathing problems. So it's just a waiting game to see what happens.

There's still a slight hope that there's a virus or infection somewhere causing all this, but as time passes and her breathing gets worse, this hope is fading. The best thing that could happen would be a virus - that's easy. She can get over that, and we can all move on.

So many people are wondering why none of this came up in the NICU. Two of our NICU nurses are asking themselves the same thing, and it's horribly sad. It's no one's fault; no one saw this coming. There's nothing on a test or a scan that could have detected any of this.

We keep asking ourselves why God could let this happen, how He could let a baby live like this, why she was in the NICU for 7 weeks and only home for a week. But it was the best week of our lives. We'd give anything to have her back home again. In my mind's eye, I keep seeing the moment that she stopped breathing over and over again. That was the last time I held her. Emma definitely recognizes my voice and knows who I am. Last night before we left, Emma was pretty alert and gazed at me while I told her how much I love her, that God loves her even more than I do, that He's taking care of her, holding her in His arms even as she lies in that hospital crib, and that He's with her always - she is NEVER alone. She kept eye contact with me the entire time that I was telling her these truths; I know she felt the Lord's love pouring out through me.

Please pray that her breathing problems are caused by the Chiari malformation or a virus.

So now we wait.

Very hopeful

We are really hoping for some good, long sleep tonight, and here's why:

Emma ate at 7:00 this morning, and she stayed awake the whole way to, during, and from her pediatrician's visit. Then we got home, she ate, and she slept for about an hour. Then she ate again and stayed awake the whole way to and from the visit to Dr. Troup. She napped for about 20 minutes at Dr. Troup's office. Then we got home, and she ate and went to sleep at about 5:30. That's a whole day without sleep! It's totally off of her schedule, which is a little alarming when we're trying to get a 2-month-old to follow a different schedule than the one she's been on for the first 2 months, but hopefully it won't haunt us later...like tomorrow. When our sweet Aunt Kathey is coming to help me.

All this awake time and Emma was SUCH an angel. I can't imagine her being any better than she was today. She weighs 11 and a half pounds now and is 21 and 3/4 in. long. She's in something like the 30th percentile for her height and 70th for her weight...so basically she's short and fat. The pediatrician did tell us to start mixing Emma's Neocate formula with either Alimentum or Nutrimagen to see how those formulas do for her. It looks like maybe she does have a milk protein allergy, like some of you have suggested, and it's nice to finally be able to rule out other things so that we can determine that one fact. Hopefully she'll grow out of it in a year or 2 like most babies do. Emma's first day out in public...and she pooted loud and stinky ALL. DAY. All day. She never does this. Until her first public appearance. And she squeaks a lot because of something going on with her trachea, but a lot of babies do that and grow out of it. So she was the stinky, noisy baby in the waiting room. At least she wasn't crying!

Dr. Troup's visit went really well, too. He said, "Marvy," about her shunt incisions and the way it's draining. That's his funny way of saying that he thinks they look marvelous. Then he was shocked when we showed him her wound and how small it is. He was even MORE shocked with something he didn't expect to see - movement of her legs! I think in his mind, he had an idea of how much movement she would have, so when we flipped her on her back (the first time he'd ever seen her on her back and awake) and she started moving those legs around, he was visibly and audibly excited. He started telling his nurse all these types of movement to document in the computer. We've been seeing this movement all along and didn't realize that his expectations were lower than what she's been doing. So that's encouraging! The bad news is that she has to have a CT scan in a month, and we have to do "natural sedation." That means getting her so hungry and tired that she's screaming crying, then giving her a bottle and letting her go to sleep. Then she has to just be still for 2 minutes while they do the CT. I'm going to be worried about this visit for a month because Emma doesn't sleep after a bottle during the day. She just doesn't. So we might be there for hours. There's no alarming reason to have the CT scan; it's protocol for his shunt kids.

We got one of many medical bills in the mail today. This one in particular was for the NICU doctors. Essentially, they got paid a minimum of $846.00 per day to come by and see us for 10 minutes. If I had known that, I would have had them waiting on us hand and foot. You just let me know if you can find another job where you get paid $846 for working 10 minutes. Multiply that by however many babies a day...wow. And some days were more expensive than that. Probably if they had to actually handle a child. Anyway, the NICU doctors charged a total of $46,799.00 for 43 days in the NICU - there are still 7 days that haven't been billed yet. That doesn't include nursing staff, medicine, and the actual use of the hospital facilities. I'm interested to see how much her stay was. I'm very fastidious with our personal records, so I'll have a number one day. Insurance will cover some of this, but I've heard that it won't cover it all. I know we'll be ok, though - God has always taken care of us, and there's certainly no reason He's going to stop now. For one thing, no child care costs. My sweet mother is retiring from her paid, part-time job and is beginning an unpaid, full-time job. I really hope that baby hugs are payment enough.

Today Emma found her fist with her mouth. She's not quite sucking her thumb, but I would appreciate it if the fist would do when I don't want to get out of bed to put the binky back in her mouth when she's going to sleep.

It doesn't really feel like Mother's Day...

Maybe it hasn't sunk in yet! I just feel like everyone has made a mistake - I'm not a mom. Today is a day for MY mom, not me. But I do appreciate the two big gifts that I got today - a baby who slept from 11:30 to 5:45 last night, and then again from 6:30 to 9 this morning! The other gift is a Sony Handycam from Russell and Emma so that I can film anything Emma does that Russell misses while he's at work. Unfortunately, Emma wasn't quite as good today as she was yesterday - very fussy today. We're hoping for another good night's rest!

Tomorrow Emma has her first 2 doctors' appointments since we've come home. We're going to the pediatrician in the morning and Dr. Troup in the afternoon. Today we battled some pretty loose poop that got on Emma's incision again, so hopefully the pediatrician can help us figure out something for her formula. Dr. Troup's visit isn't really because he needs to see her again, but the next time we'd see him otherwise would be for a brief visit at the Shriner's Hospital. The Shriner's Hospital here in Greenville has a spina bifida clinic that people drive hours to come to. The kids rotate among 4 or 5 doctors or therapists, and he's one of them. None of these visits are particularly long; if there's a problem that needs to be addressed more intensely, you come back to that specific doctor's office at a different time. Dr. Troup requested our visit tomorrow for us, not him, because he knew there was no way we could wait until the Shriner's clinic to see him again. I don't know if he does this for all parents, but he knows we ask lots of questions. And he's right - I wouldn't have waited until the Shriner's clinic to call with questions. Actually, his nurse called to check on us at the end of last week, which was really nice. It's not like the day after surgery or anything; they were just calling to check how we were doing since Emma came home.

Emma's incision looks AMAZING. There's one small place in it that was really deep. The wound nurse told us to be careful that the edges don't start to heal and roll into the depth of the wound. If that happens, it will just heal as a crevice, instead of heal from the bottom up to form a flat surface. Now it's getting so small that it's hard to tell if the edges are rolling, so I'm going to ask Dr. Troup about it tomorrow. He's the one who would do something about it anyway. I think he'd have to either cut or burn those edges of skin off, which I don't think would require anesthesia - maybe just local anesthesia. The fluid on Emma's brain is draining like it's supposed to, I think. We just keep feeling her soft spot to determine if it's too low or too high and lay her flat or raise her up accordingly. We can definitely tell that the size of her head has decreased since the shunt. It's still bigger, comparatively, but it looks better than it did. In this picture, you can still tell that her forehead looks kinda high, but her double chin balances it out on the bottom :)

What an overwhelming day...

And not because Emma was a handful. She was angel today. Well, she didn't feel like an angel from about 4 am to 5:30 am this morning, but she has been GREAT. We're working on her schedule - basically, the Babywise theory. For the most part all day, she has slept, eaten, and been awake on a 3-hour cycle. During her wake time, she has just been loving life. My mom has spent the night the last 2 nights to help with the nighttime feedings since Russell has had to work. To top it off, she's stayed all day to help me! She kept Emma today while I got to go to the gym - yay! Now we'll just see how Emma does tonight, and Russell's not getting out of nighttime duty this time!

So the whole reason that today was an overwhelming day is that Mother's Day is coming up. Obviously, I knew it would be my first Mother's Day, and that has been really meaningful to me. But yesterday I got my first Mother's Day card in the mail. Aw, how nice, I thought. Then today I was completely inundated with cards and gifts in the mail! I started getting all weepy and emotional because so many OTHER people think it's a big deal that it's my first Mother's Day. God is so surprising - He really knows how to love on us in the most meaningful and surprising ways. Most surprising of all are the gifts and note from sweet Betty; she was a high school classmate of mine, and we have connected once again through Facebook - the great uniter! Her sister was in a terrible car accident the day before Emma was born, and her spinal cord was severed around the breastbone level. Betty has also started a blog (it's in the "Blogs I Follow" section of my blog) about her sister's journey. Betty has been so sweet and supportive through everything we've gone through with Emma - what a blessing she has been to me. If you want to see someone with unfailing faith and hope in our Lord, read her blog. It will bless you, I promise.

Well, time for one last feeding and then we'll hope to sleep for a while!

Advice needed

I'm officially asking for mommy advice regarding sleeping through the night. Emma is 7 weeks old, old enough to start to sleep more during the night. Of course, in the NICU, their goal is NOT to get babies to sleep through the night; they just keep them on a feeding schedule of every 3 hours for younger babies and every 4 hours for babies like Emma.

So here we are at home. Russell and I slept for about 5 hours last night, mainly because Emma didn't go to sleep until 1:15. Like I said, at 7 weeks, we've got to start working on this schedule. The part I need advice on is how often all you mommies out there fed your kids when they were starting to sleep through the night. Right now, the plan is every 3 hours, with the last two feedings at 9 and 11ish. I know every child is different, but I'm just trying to get a few ideas. Feeding Emma every 4 hours isn't going to work because she can't eat enough at each of those feedings to keep her full during the night. What worked for all of you?

We didn't get a ton of sleep last night, and Emma was awake all morning. But she wasn't fussy! She's been a GREAT baby when she's awake; she was starting to get kinda fussy for a while there, and I think it had something to do with the fluid on her brain. My wonderful mother (who has been SUCH a blessing staying with me at the hospital and helping me out at home, just the right amount) came over this morning and let me and Russell nap and shower this afternoon. It was about that time that Russell and I decided we needed a new feeding and sleeping plan.

Emma has adjusted well to being at home, and we've had her sleeping in both her crib and the pack 'n play. She has slept through all kinds of noise tonight - phones ringing, the tv, us talking...how great! We're definitely looking for silver linings anywhere we can find them - we can appreciate that God has blessed with more sleep the last 7 weeks than most parents would get; Emma has learned how to eat on a schedule; she can sleep through a lot of noise because her room was directly across from the nurses' station. There are some others, but these are the ones we're thankful for now, as we're adjusting to being home with her.

We changed Emma's wound dressing this morning and again tonight, and we could even see a difference in just 12 hours. The home health care nurse called to schedule our first appointment for tomorrow morning, and she was doubting whether we needed her 3 times a week. I thought to myself, well, great - ANOTHER nurse who doesn't seem interested in helping us. Maybe it was a bad first impression; based on our conversation, I'm not so sure she realizes what we're dealing with here. She didn't even know Emma had been in the NICU for 7 weeks and was pretty surprised that it was that long.

Now here's a picture of Russell and Emma having a staring contest. You can see on the side of her head where the shunt went in; her hair is shaved right there, and it really looks like she has a mullet in the back.

She's home!

Well, bringing Emma home is everything everyone said it would be - sleeping all day and so far (at 11 pm), not sleeping at night. Ha, seriously though, it's been WONDERFUL having her home!!

Russell and I got trained on the breathing monitor this morning, and it can go off for many reasons, not just if she stops breathing. Great. Then we did some last minute paperwork, and off we went! We left the hospital around 1:00 this afternoon. Russell drove the car to the front while the nurse and I put Emma in her car seat for the first time! We put the car seat on this big cart, along with all her other belongings, and wheeled her to the elevator. I noticed that she was staring at the walls as we were rolling down the hall, and I wondered if it would make her sick, especially since she's started spitting up here recently. Turns out, I was right. Right before we got to the elevator, out it comes. Now would be a good time for me to mention that I was the most carsick child you could imagine. 30 minutes in the car, just across town, spelled disaster for me. My parents even had to have their car reupholstered. You know what they say about payback...anyway, Emma spit up all over the car seat and her new little outfit. Once we got to the first floor and started rolling down the hall again, I could see it in her eyes as she watched the walls go by (at a pretty fast pace, I might add)...and she puked again. Once we got her in the car, I put a blanket over half her seat so that she wouldn't get sick AGAIN looking out the window. It worked.

We got her inside the house, took her right to her nursery, and changed her diaper as she fell alseep on the changing pad. She slept like an angel until her 4:00 feeding, then slept until her 8:00 feeding, and she's been awake ever since. I've go the video monitor here next to me, and it appears that she's fighting sleep. Russell goes in there periodically when she really gets going to give her the pacifier or check her diaper...but we're wondering how long this will last.

Speaking of Russell, he had an interesting experience tonight. He fed her at 8:00, and shortly after she was done eating, I was holding her. I thought I was seeing the spit-up face...and out it came! It was projectile this time; it landed on the arm of the sofa, with Russell as the ultimate target. But never fear, Russell was quick on his feet and jumped/rolled off the sofa onto the floor. He hit the deck to avoid the projectile vomit, and I was laughing so hard I could hardly even help Emma.

Emma's incision is looking great today; the wound nurse estimated that it would take another month to heal. We're obviously praying for God to heal it faster. One piece of great news is that by the time I go back to work (June 7), we won't be dressing it anymore. That just means that we don't have to teach anyone else how to do it, and it's a pretty detailed process.

Here are some pictures from the day:



A surprised and confused Emma - wondering what she's doing on her back and what kind of contraption she's sitting in!



Asleep in her own crib at home and exhausted from moving day.

We're going home tomorrow and NOW you start projectile vomiting?

Emma is playing a mean, mean trick on us - we're going home tomorrow (yay!), but today she's started projectile spitting up during feedings. Our daughter does NOT spit up, ever. We've only personally fed her 3 times today, and she spit up big time for two of them. Spit up sounds so mild...violent, projectile, coming-out-her-nose spitting is more like it. I had to go home and change clothes! We're keeping our fingers crossed that this is just a fluke, but we also think we've pinpointed a few things that may have something to do with it.

First thing tomorrow morning, Russell and I will be trained on the breathing monitor that we have to bring home with us. Since Emma is sleeping on her tummy for a while, she has to be on a breathing monitor that apparently will wake the dead if she stops breathing. Honestly, I'm just as nervous about putting her on her back to sleep because she's not very comfortable on her back...but I know we'll get there eventually. The wound nurse came by and is very pleased with Emma's wound. We are to keep dressing it twice a day the way we always have until it is completely healed. We'll have pediatric home health nurses come out to see her 3 times a week beginning this Wednesday to make sure everything's ok with the wound and her shunt. Emma got the ok to ride in her car seat without any adaptations from Dr. Troup and the wound care nurse, too. She'll have lots of doctors visits coming up in the next couple of weeks, so it's nice to know that it will be easy to transport her. The physical therapist is going to set her up with some therapy appointments here in Greenville, too. She's going to be a very busy baby! Let's see, what else...she passed her hearing test today...and she weighs 10 pounds, 9 ounces for her last weigh-in at the hospital.

I'm so sad to leave tonight's nurse, Judie. I just love her. And we don't even know who our nurse will be tomorrow...which is unfortunate, considering we'll spend a good part of the day with her during the discharge procedures. All our primaries are off on the day she leaves :( So many of the nurses are sad that Emma is leaving. A lot of them have really taken her on as one of their own. I'm sad, too, to an extent - I feel like a few of them have become our family...I mean, they've been taking care of our daughter during one of, if not THE, most fragile times in her life. What a blessing some of them have been. We're also so blessed to have all of you praying for us. I can just feel that God loves our baby girl so much. I've prayed with her during the day when it's just been the two of us - what an incredible thing to pray aloud to our God and watch my daughter's eyes wander around as I speak to the God who loves her. I have been praying Psalm 91 over this child for months and months...and oh, how delightful it was to read that Psalm aloud to her, face to face. Now I'll probably be reading it aloud to her at all hours of the night! That's ok - God doesn't fall asleep on us.

Emma has been so good today, and she's had some good, quality awake time. We're pretty sure that she'll sleep great tonight, sleep like an angel tomorrow, and be up all night tomorrow night for her first night at home. Isn't that usually how it works?

Today was a big day for our families. The NICU rules for the number of people allowed to see Emma changed today, and 6 people are now allowed to see her. My dad and Russell's dad got to see her for the first time! For those of you who don't know my dad, he's a former football player, so he's a pretty big guy. His hands are big bear paws, so I had to snag a picture of him holding Emma's teeny tiny little hand.







Everybody (and I mean EVERYBODY) in the NICU knows that we're going home either tomorrow or Tuesday. This is all going to depend on Dr. Troup, to an extent. He has to release Emma first, and we have to do our discharge stuff with him. Then we have to do discharge procedures with a NICU nurse, the wound nurse, the physical and occupational therapists, and the social worker. So if Dr. Troup can't get over here until later in the day tomorrow, it may very well be that all these things won't get done until Tuesday...and that's ok. I can deal with it. We said our goodbyes to the 3 day nurses who have been sent to us from heaven above. I'm tearing up as I type because I'm convinced that without these 3 nurses, Emma would be going home later than she already is. Of course, I could also say that there a few nurses who are the reason we've been here as long as we have. But it is what it is, and God has taught us so much during Emma's stay here. And I'm very thankful for the uninterrupted sleep that we've had over the last 7 weeks. Kiss it goodbye.

Emma's wound looks fantastic today! Yesterday it was only ok because the night nurse Friday night had never had her before and didn't saturate the packed gauze with the medicinal gel...so every time Emma moved, the dry gauze rubbed all over the tender healing tissue and made it bleed a little. It's not a huge setback or anything, but it wasn't exactly forward progress either. That nurse was very good, but she just didn't understand the real importance of keeping the wound wet. That's why you need consistency in nursing care! Whatever, move on...God has blessed with some great ones, too.

Emma's soft spot is getting softer, and I think the fluid is even visibly improved! She had what I like to call an Abraham Lincoln hat. You know, he wore that tall black top hat...well her head was kind of starting to do that. Now it's definitely going back down.

I hope they don't mind that I post this (if they ever read this blog), but we met a couple last night who is adopting a little boy born on Monday with spina bifida. They are not from Greenville and live about 2 hours away. They already have 2 kids in their early teens and 2 years ago decided to try to adopt a special needs child. They received a phone call on Wednesday about this little boy, and here they are! One of the NICU doctors asked if we would speak to them about our journey and about spina bifida since they have been thrown into this so suddenly. My parents have offered up their house for when they visit on the weekends (the dad is still working, not sure about the mom). They're a wonderful couple (OBVIOUSLY), and it was such an interesting perspective to see regarding this disability. It was kind of weird to talk about our hopes for Emma physically and express our disappointment and fear about this disability but then hear them take the same disability with such calmness. This is what they were asking for! I mean, not spina bifida specifically, but it's just such a different point of view to talk to someone who is still hopeful, yet expectant of something like this all along. What an amazing family...and this child will be blessed beyond measure.

We've finally gotten Emma's formula under control, or at least until all her other issues improve/heal. The doctor who said, "FINE!" the other day about changing it explained to us last night that he didn't understand why I was so adamant about changing formula. Now, though, he sees that we're trying to prevent stool from seeping onto the dressing. Oh, sorry, poop - we've been using the medical term for poop around here, but I think it sounds pretentious. Emma spit up for only the second time EVER today, and we were NOT happy. When your child isn't a spitter, it's very scary when she does. At least we were here in the hospital; otherwise, we'd be hovering over her the rest of the day. Oh my, speaking of hovering, Emma's respiratory monitor just went haywire, and her alarm went off indicating that she wasn't breathing. Well that'll keep you up for days...if any crazy letters sneak into the middle of words here, it's because I'm still shaking. The nurse is now fixing the monitors...I think I need to ask her for some Valium.

No energy for much more than this

I'm exhausted. It's late. It's been a good day with Emma, but I'm just tired. So I'll catch up on things tomorrow. But I do have to leave you with this:



Emma got her first full shampoo today after her PICC line came out. Dawn was holding Emma in this amazing towel-swaddled, sideways, under-arm, propped-on-her-hip position to wash her hair. We were AMAZED at how she did this. Anyway, Emma was completely flabbergasted by what was going on - being swaddled for the first time ever, having a complete shampoo and water on her head for the first time ever, and being on her back yet suspended in the air. She looked over at me with these huge eyes like, "Mom. What the HECK is going on here?!" Luckily I got a great picture of that expression! Under those heat lamps, her hair really does look strawberry blonde...