Chatty Cathy

Today Emma had a pretty adventurous day. She woke up at 5:45, which was an adventure for all of us. After she got that first bottle in her, she had a great morning. Emma has been to 4 therapy sessions before today, and she has gotten slightly fussy during all of them until today. My mom and her neighbor, Jan (aka Mama Jan), took Emma to PT, and she was perfect! The therapist was impressed with her improved head control just since last week.

On the way home, Emma threw up in the car BIG TIME. Then she threw up again an hour after her next bottle. Neither of these little episodes were related to choking or burping, which frequently causes some spit-up. Emma also choked while in the tub tonight and completely threw up her entire bottle. Emma is a hard read because she's dealing with poor swallowing. When we hear her getting gurgly in the back of her throat, we've assumed it's because she isn't swallowing her saliva properly...and that's probably part of it. But now we're wondering if her reflux is stronger than we initially thought. When Emma spits up, it's pure slime and has been for weeks now. It doesn't even absorb into a burp cloth. She had a reflux test in the hospital, and it did detect some reflux. Emma's been on Zantac since she was in the hospital, but I started to wonder if maybe it's not as effective as it needs to be (I've heard that it's pretty useless on some kids). So today the pediatrician called in a prescription for Prevacid...maybe this will make a difference in the puking, etc. My only doubt about reflux is that Emma hasn't been in any kind of discomfort, so I don't really know if all this is due to reflux.

Emma was so incredibly chatty today. She has gradually been stepping up her conversations with us, and today she decided to really discuss life with us. She has started reaching for things in the last two days, and she LOVES her fists. Then, to top it all off, she has started smiling more frequently. My mom and Mama Jan brought Emma to see me at work today, and Emma hadn't smiled at them all morning. My sweet baby saw me and gave me three or four gleaming smiles. Now that'll make your day. Here's a video my mom took of Emma talking to Mama Jan. Three things: (1) Comment and tell me what you think is happening at the beginning of this video when Emma shivers/shimmies; (2) Emma might make even more noise if she would take that fist out of her mouth! and (3) She hasn't been around our dog that much, but she's picked up on how to howl.

The witching hour

We are definitely open to having visitors to come meet Baby Emma, but here's the catch: she is an amazingly happy baby...in the morning. Any mom will tell you that babies have a "witching hour." It's that time of day (usually in the evenings) that babies get cranky and fussy. Emma's is definitely in the evening. Visitors obviously come in the evenings. So her visitors get to see a cranky baby who doesn't want to be held sometimes, and if she IS held, she demands that you walk, stand, and/or bounce her. If you don't do those things, she'll let you know EXACTLY what she thinks about your childcare ability. So if you want to come visit a happy baby who won't make you pace around our den, please come visit sometime between the hours of 7 am and 11 am. Here's a happy baby Emma snuggling with her dad first thing in the morning and also laying down easily and peacefully to have her diaper changed:





I'm not going to post a picture of her screaming...who wants to see pictures of a screaming baby???

Please note that Russell chooses to hold her when she's being sweet and fun. Just kidding, Russell - you're a great dad. Love you.

Our wonderful church, Earle Street Baptist Church, does a 4th of July celebration every year. It's located in the beautiful historic Earle Street neighborhood at the north end of downtown Greenville. They have a parade down Earle Street with kids, dogs, etc. on their bikes, followed by a cookout at the church and patriotic music. It's really fun every year to hang out with our church family, and you can either watch the downtown fireworks from the church parking lot or make the quick drive downtown to see them. This year the church is graciously donating the proceeds of this event to our family to help with our medical expenses...Miss Emma is turning out to be an expensive baby! On one hand, I am so honored by our church's generosity that I feel that I have to mention it here in the blog and to invite any of you out there who want to attend...on the other hand, I'm so flattered and overwhelmed with emotion that I don't actually know the words to fully express what I'm feeling. The parade starts at 7 pm, and dinner is at 7:30 (for $5: hamburger, hot dog, or brat plus beans, cole slaw, chips, cookie, and drink). Downtown Greenville fireworks start at 9. Oh, and bring a lawn chair or camping chair. Here's a map to the church:


View Larger Map

I really hope a lot of you can come, and not because it's a benefit for our family; we're not looking for a handout. I want the whole world to know how incredible our church is - and we knew this long before Emma came along. Emma's presence in our lives has confirmed what we already knew about our church.
Side note: back to the witching hour...yep, same time as the 4th of July celebration. I apologize in advance to those of you who will meet Emma that night...let's all start praying now that she's sweet. Otherwise, the church may change its mind about donating the proceeds.

Emma had a pretty rough day today. In the last couple of weeks, she has started spitting up A LOT when she chokes and burps. Our best guess is that her abdominal muscles are stronger now and contract stronger, making her puke. I hope this stops soon...anyway, she has choked a lot today, and some of them have been pretty bad. I'm so afraid that she's actually going to choke on the vomit, too. I cried yesterday and today for the first time in a long time. My emotions are getting the best of me again, and I don't know why exactly. Tonight it was because her choking spells were so bad, so frequent, and so upsetting to HER. It kills me when they scare her. How many times can I watch my child turn blue and wait for her to take that first sacred breath? God is teaching me more and more every day what it means to really trust Him - trust that He will take care of her when she chokes in her sleep and we don't hear it; trust that He will protect her lungs from being damaged by any saliva or spit-up that she aspirates; trust that He won't let her annhilate by way of vomit anything that's not washable.

Here's another really funny picture of our fat, fat baby. We can't quite put our finger on the animal impersonation she's making...frog? Catfish? It's really not a cute, flattering picture of her, but I just think it's hilarious.

Has it really been that long?

I just realized that it's been 5 days since I last blogged. I'm not so delusional as to think that our friends and family are on the edges of their seats waiting for me to post; I'm amazed and feel immensely blessed that so many of you care for and love our Emma so much that you actually WANT me to keep the blog updated more often than every 5 days. What a testament to God's love for us.

So much has happened this week. Emma had her first vaccines on Tuesday, and she barely flinched over the shots. "Big deal," she said. "I've been poked and stuck more times than you can shake a stick at." She's 13 and a half pounds and 24 and a fourth inches long. Russell calls her fatty bobatty. Here's a really funny picture of the fat face she makes when she's tired. She pushes all her chin fat forward and pooches her cheeks and lips out.



On Wednesday, Emma had another swallowing study. This study didn't show us a whole lot more than the first time it was done in the hospital, except that her swallowing hasn't gotten worse. Emma started eating thick formula and moved to slightly thinner formula. They could see on the X-ray that she started to aspirate some of the thinner formula into her lungs. Luckily she pulled it back out and swallowed it, so they stopped the swallowing study at that point. I know this all doesn't sound great, but the speech therapist and radiologist were encouraged. The speech therapist especially was pleased that Emma's swallowing hasn't worsened. On top of that, if you've ever met Emma in person, you may have noticed that she clears her throat a lot. The speech therapist says this is a good thing as well; if she clears her throat and coughs occasionally, she has good sensitivity. Her body's natural reaction is to clear whatever's stuck in her throat. The next step is to have an appointment with Dr. Troup and see what he thinks about the results. We'll have a visit with him soon to discuss doing Emma's Chiari decompression. That surgery could be coming up in the next couple of months.

Also during the swallowing study, Emma became a star! The therapy office she goes to is starting a new website or something, and they were thinking of some cute kids to take pictures of for the site - they thought about Emma! So she got a few shots taken; unfortunately, I was in them as well. Y'all, I was looking ROUGH. I had to do a warehouse inventory for work that morning in our unairconditioned warehouse...and THEN take pictures?! Yikes.

Emma had physical, occupational, and speech therapy this week. PT and OT mainly focused on her head control and arm strength. Emma's head size is in the 99th percentile, so she can't control it quite as well as other 3-month-olds. I know that the 99th percentile sounds like she'd look kinda freakish, but I swear she doesn't. As I noted a blog or two ago, I couldn't possibly imagine what speech therapy would be like for an infant...here's the explanation: speech therapy is more than speech - it's also about cognitive development based on our interaction with Emma. I gotta be honest - speech therapy for an infant sounded like hooey at first, but it was really fascinating to hear about the studies that have been done regarding infant development. Here are some pictures from Emma's occupational therapy: she fell slap asleep during part of it! Check out the fat arms and leg cellulite.





Russell and I officially enrolled in a genetics study this week. It's hard to explain the deal about spina bifida - they say it's not hereditary, but it's still a genetic disorder. I don't know. Anyway, the Greenwood Genetic Center is a pretty big deal in the world of genetics, and a nurse came to our house this week to conduct an interview and take blood samples from me and Russell. They will pay for my multivitamins and for my jumbo doses of folic acid. These are only jumbo DOSES, not jumbo pills. I'm currently taking 4,000 micrograms of folic acid per day; the recommended amount for prepregnant and pregnant women is 400. I've been taking 500 for years. Anyway, they'll pay for all my vitamins through the study, and we'll become one of their statistics if we have another child naturally: a second child with a neural tube defect even when taking 4,000 mcg of folic acid or a second child without a defect. Russell got stuck 3 times because his veins roll around a lot in his arm. So that's where Emma gets it.

Emma had an appointment with the hospital pulmonologist on Thursday. We're not sure why we had to go see him. This is the guy who did 2 bronchoscopies to make sure she doesn't have vocal chord paralysis. I honestly think he was expecting to find a child who was withering away. He was shocked that she had grown (um...hello...that's what children do: grow. Aren't you a PEDIATRIC pulmonologist?) and that she was awake and alert and happy. Then she choked...and it was a bad one. That doctor FLIPPED OUT. He ran outside and asked if she needed oxygen and was just freaking out in general. Of course, Emma brought herself out of her choking spell. The best part is this: my mother-in-law, Mary Jane, was with me. Mary Jane was wearing a shirt with a regular scoop neck and then a little keyhole opening below the neckline. Well, Emma mistook this doctor's visit for target practice. After she choked, she puked and hit the bullseye: right through the keyhole so that the puke started to run down inside MJ's shirt. So on top of the doctor flipping out about the choking, he also was trying to figure out how to help MJ (who wasn't upset by the puke at all) clean puke running down her shirt. He finally just handed her some paper towels, rather than dab the puke on a rather personal part of her body. MJ and I have really gotten some chuckles out of that.

While Emma was in the hospital, they had a photographer there who was taking pictures, and we took advantage of this "complimentary" service in the hospital. Luckily, my in-laws and my parents were there, so we all got pictures with Emma. However, I haven't seen them. But they're coming this week! I don't know how many or how good they are (there's only so much you can do in a hospital room), but I'm excited to see how they turn out. Even more exciting than that, though, is the portrait session we had today with our friend Susan Brewer. She is WONDERFUL. Check out her website. We're going to have some fantastic shots from our session with her today...oh, I can't WAIT to see them!

Ok, I think I've pretty much caught you up. Big week, huh? Miss Emma has been an angel this week, for the most part, and she's been sleeping great. Oh, except for last night. We only slept for about 5 hours. Call me boastful, but after all we've been through, I'm the QUEEN of finding the small blessings in life. One of those small blessings (well, actually, it's a big one) is that when Emma was going through the newborn, middle-of-the-night-feeding stage, she was in the NICU. So Russell and I were able to sleep peacefully at home. I guess we should just suck it up and deal with the less restful nights that we'll experience here and there now.

Back to the real world

I officially went back to work today. Yes, it was hard, but easy, too. The things that made it easy are as follows, in no particular order: (1) my mother-in-law spent the night, so I had no worries about getting Emma anywhere by a certain time; (2) Russell woke up in time to help with Emma if she decided to get up while we were getting ready; (3) my coworkers are wonderful; (4) summertime is business casual dress. I obviously wanted to be back home with my sweet baby, but it was nice to work again. And the work wasn't stressful, either. That can change at any moment, but it was a nice day to go back to work.

Let's see, I think my last post was Thursday...what's happened since then...oh! Occupational therapy on Friday morning. That went well. Emma was in a pretty good mood until she was wet/dirty and/or hungry. Then it was all over. The occupational therapist was wonderful, and she did some things to loosen up Emma's arms and hands and work on her upper body strength. And neck strength. We went out to eat with a delightful couple from our church Friday night. Saturday morning we woke up to Emma having a terribly hard time breathing, but she was herself again by midmorning. We had a great weekend with some visitors, too. Father's Day was wonderful for all the men in our family but I think especially meaningful for Russell's first Father's Day ever and my dad's first Father's Day as a granddad. My parents graciously had me, Russell, Emma, my mother- and father-in-law, my brother- and sister-in-law, our nephew, and my parents' neighbors over for Father's Day dinner. Emma had a good day today, but she had some pretty bad choking episodes.

Last night we learned our lesson about Ultimate Crib Sheets. If you don't know what they are, find out. Ok, I'll tell you: a crib sheet has white fabric on top, vinyl on the back (read: waterproof or bodily fluidproof). It doesn't wrap around the sides of the mattress; rather, it's flat on top, and it has these little elastic straps on the edges that you wrap around the crib slats. You keep your regular crib sheet on the bed underneath. Then, in the middle of the night when your baby's diaper fails you miserably (as it inevitably will), you don't have to struggle with removing a sheet (and possibly a mattress cover) and putting a new one on; you just take the Ultimate Crib Sheet off and ta-da! Clean sheet underneath. We've been great about keeping these sheets on Emma's bed. So far, no accidents. So of course, last night, the one night we don't put one on her bed, her diaper seemed to be nonexistent. We had to wake her up (and greatly anger her) getting her out of her crib, take off the crib sheet and the mattress cover, and struggle to put on another crib sheet and Ultimate Crib Sheet (I repeat, lesson learned). Drop side cribs are dangerous, but they must be so much easier to put a sheet on. Anyway, my mother-in-law did Emma's laundry today, and I was breaking a sweat this evening taking off the 3 am crib sheet and Ultimate Crib Sheet and then putting back on the mattress cover, crib sheet, and Ultimate Crib Sheet. God has blessed us mothers with Ultimate Crib Sheets, and I will never again take this divine blessing of modern motherhood for granted.

It's late as I write this blog, so it's time to cut it off. One reason it's late is that during the summer, I'm working longer hours Monday through Thursday, and I have Fridays off. When I came home, Russell and I educated my mom on Wii Fit - she loved it! So of course I had to get some Wii Fit time in as well. Then my mom and I took a very sticky walk through the neighborhood. I've got about 15 pounds to get off, and I don't know when I'm going to find the time to do this without sacrificing my sleep. Tomorrow Emma goes to the pediatrician for shots and a well child visit. She has another swallowing study on Wednesday, 3 more appointments on Thursday, and 2 appointments Friday. Busy girl.

Here's a picture of one of our visitors since Emma has been home. Dan is a good friend of ours from church, and he and Emma had some great bonding time. The thing I love about this picture is that it looks like Emma is warning him with her little fist: "If you don't spoil me rotten, I'll knock you into next week."

Maybe 3 days in a row is pushing it

We took Emma out for errands for the third day in a row today and learned a valuable lesson: although she enjoys the car, she will only sit in it for so long. The other days we've taken her out, she's been in her stroller a lot more. Today she stayed in the car a lot and wasn't thrilled about it towards the end of the day. But overall, she was a great baby today!

We're about ready for her to be over her little cold. She picked it up over a week ago at the hospital, and she's still a little snotty in the morning. The big problem, though, is that we think all the mucus is draining into her tummy and making her full. She spit up 4 times today (and she doesn't normally do this) in response to 1 burp and 3 choking episodes, and it was pretty slimy coming out. Gross, huh? We still get very frustrated that with all Emma is dealing with, she has diaper rash, gas, and a cold. Really??

Tomorrow morning (bright and early - 8:00), Emma has her first occupational therapy appointment. I have no idea what to expect from this, considering her main needs are along the lines of physical therapy and speech therapy. She begins these two therapies next week. Speech therapy for infants - yes, it exists. Speech therapy is actually what helps kids who have throat issues swallow and eat better. I don't know what to expect from that, either. My wonderful mother- and father-in-law are spending the night tonight, and my mother-in-law is going to occupational therapy with Emma and me.

That's about all for today - nothing very exciting. I will say, though, that God has blessed us with 3 really fun days of cruising around town with Miss Emma.

Happy 3 months to Emma!

Our sweet Emma was born 3 months ago today on March 16! In other news, Emma is officially mobile. Well, let me back up a bit.

Emma had a great morning and early afternoon on Monday. We went to the doctor and rode in the car for a while. She LOVES the car! Emma had a rough afternoon and didn't breathe well for a while. We gave her some medicine to calm her down a little on Monday night, and she slept like an angel all night.

We had grand plans for Miss Emma on Tuesday, and we carried them out beautifully. Emma went to my parents' house for the first time until about lunchtime. Then we went to a childrens' store here in Greenville and to visit my coworkers. My grandmother (Memaw) will be 100 years old in July, so we wanted to go ahead and get a picture of her, me, and Emma. Memaw is in the very late stages of Alzheimers and can't really put words together very well; she doesn't know who we are or anything, but we were able to get a great picture or two with her. Then my mom, Mama Jan (my parents' neighbor and Emma's adopted grandmother...not to be confused with Mama Jane, my mother-in-law), Emma, and I went to the outlets in Gaffney. Emma ate in the car in the parking lot and then loved her stroller so much that she fell asleep for our shopping trip. She was angel during the ride home and wasn't too fussy until about 8:00 at night. Then she slept all night again Tuesday night.

Today, Wednesday, was another grand day of travel for Emma, but not as much as Tuesday. We went to see Dr. Troup this morning for a post-hospital visit, and he wants to have another swallowing study done on Emma. The first one was done after she'd had a ventilator in for 5 days, which can make her swallowing worse. In addition, swallowing can improve over time. Anyway, that study will be in the next week or two, and then we'll go back to see Dr. Troup again. After THREE HOURS at Dr. Troup's office (they were very apologetic for the long wait, and it's not as bad when you have a good and entertaining baby with you), we ran a few more errands, and Emma was an angel. She was great all day and a little fussy in the evening, but not bad. Today was my mom's birthday, so my parents and Russell and I went out to eat at Giovanni's while my in-laws watched Emma.

Any of you who have visited Emma in the hospital or at home know that she's a loud breather - the noise is actually called stridor. This is because she has tracheobroncomalacia (floppy cartilage in her trachea and bronchial tubes); when air goes through these passages, it's just noisy. She will grow out of this. However, in the meantime, she sounds like she's having a severe asthma attack all the time. When we took Emma to the doctor's office on Monday, we were walking in when another mother was going back with her child. A nurse came out a few minutes later to make sure Emma was ok because the mom who had gone back was concerned that something was seriously wrong with Emma. We told the nurse that the stridor was normal and that she was ok. Mere minutes after the nurse left, a man sitting in the waiting room said, "It sounds like she's having trouble breathing..." Yes, we know. We appreciate everyone's concern. I'm going to have to have a cute little sign to put around her neck that says, "I'm a loud breather, but I'm ok. Nobody panic. You do not need to call 911, but thanks for your concern. You're welcome to squeeze my fat rolls and check out my long eyelashes instead, though."

We have a few more plans for tomorrow with Mama Jane - hopefully some more errands! Emma's not exactly the easiest baby by yourself, but she's very easily managed with 2 people. Especially grandmothers who can't keep their hands off her anyway :) Oh, I forgot to add that I'm very proud of my mom - today I told her that after we got Emma back in her car seat that I was going to make my mom learn how to fold up the stroller. I put Emma in the back seat in 5 seconds, and by the time I got to the back of the car again, Judy was standing there with a folded stroller and a smug look on her face like, "What, THIS stroller? I got this." Show-off. I had to practice a few dozen times before I was remotely able to operate the stroller.

Here are a few more pictures of Emma. We let her hang out in our bed for a bit last night, and she loved it. Those pillows are much cozier than her crib.





This is Russell's favorite thing ever - no explanation needed.





Here Emma looks like a precious little schoolgirl having lunch, with her ruffled skirt and Mary Jane socks sticking up.




PS - On a blog post the other night, I discussed a verse that has become very important and meaningful to me, and I realized later as I was lying in bed that I put the wrong verse location on the blog. The verse I was talking about is in 2 Corinthians Chp. 1, NOT 1 Corinthians.

Sorry it's been so long...

I know it's only been a few days since I posted, but a lot has happened since Emma's been home. God has blessed us with so many loving and caring family and friends (and people we don't even know!) who are keeping up with the blog...so here's the big update since we've been home.

Yay for a baby sleeping through the night! Emma was beginning the trend when we left the hospital, and it has continued since then. I think the least she has slept was 7 hours, and the longest was 9 and a half hours. It helps that her formula is really, REALLY thick with all the rice cereal now. For all you moms out there who are familiar with rice cereal and its magical powers, we have to put 1 tablespoon of rice cereal with 1 oz of formula. That essentially makes grits.

Emma's diaper rash is still pretty bad, but not as bad as it was on Wednesday and Thursday. Thanks to all of you who left comments or signed the guestbook with diaper rash suggestions. They've been so helpful! I've tried a few of them, and we're working on getting that diaper rash whipped. So far, though, I have to say that the best thing is something called Ilex...but only if you use it right. We can thank Jean Brown at the Shriner's Hospital for this stuff. She is the spina bifida nurse who is the official on bowel and bladder control issues. She even speaks across the country on it and has written a book. The only pharmacy I've found that can order it is Bi-Lo. It's basically this thick, thick paste that goes on and stays on. If you try to peel it off, it'll peel the top layer of skin off. So when Emma poops, it stains the Ilex and she still looks dirty, but you just keep blotting it until the wipe comes away clean. Then you put more Ilex on where it has started to erode or clump away. I know this sounds gross and unsanitary, but this stuff WORKS. I think it works because the skin underneath never ever gets exposed to moisture. The only time we leave her hiney bare is if we're airing it out. So hopefully we can stay diligent with the Ilex and with some of the other suggestions you all have given us and we can beat this thing! With everything else that Emma is suffering through, we shouldn't have to deal with diaper rash, too.

Emma's choking spells have gotten significantly worse. From Thursday morning to Friday morning, she choked 22 times, and it's only gotten better by a couple episodes a day since then. The episodes have been really severe, too - lips turning blue, face turning blue and red. Then they're sometimes followed by spitting up a lot of mucus. We think that maybe the cold she's fighting has caused the increase in choking...and I can guarantee that's what a doctor would tell us. Speaking of doctors, Emma has a follow-up appointment at the pediatrician tomorrow. We also have an appointment with Dr. Troup on Wednesday. I'm not sure what he's going to tell us on Wednesday. He may just say, "Let's come back in 3 weeks and see how we're doing," or he may say, "Let's schedule another swallowing study for a week from now." We have no idea.

Emma's right foot and leg are still really swollen, and we still don't know why or what to do about it. We prop it up at night with a rolled-up blanket (I know - the horror of leaving a blanket in the crib with a baby! She's fine, trust me.) and hope that it gradually gets better. That's something we'll mention to the pediatrician, even though Emma's already had an ultrasound on it.

Her gas pain is getting a little bit better, but she still has her moments. Actually, as I type this blog entry, she's pretty darn upset. I think it's gas pain, but I'm not positive. It's getting increasingly hard for Emma to breathe, and crying doesn't help this. Her breathing is very shallow, so she takes a lot of breaths, and it's very labored. And heartbreaking. Listening to her closely makes it feel like I'm struggling to breathe, too.

Russell and I made it to church this morning while my parents watched Emma. Oh, how wonderful it was. Our church family has been amazing through this experience. Emma has had many visitors since she's been home, and it's been great to be able to share her with our loved ones. We, of course, have to prepare visitors for how loudly she breathes and for the possibility that she could choke while someone is holding her. And anyone holding a baby runs the risk of being spit up on.

Russell's parents spent the night here on Thursday night, and my parents spent the night here last night (Saturday night). They stayed in our bedroom across the hall from Emma, and Russell stayed in our guest bedroom, far, far away from the baby. There is no greater blessing than parents willing to do this.

God has taught me some very valuable lessons since we found out about Emma's initial diagnosis of spina bifida in October. Since the most recent developments about Emma's ability (or lack thereof) to swallow, I've learned even more. There's a verse in 1 Corinthians 1 that says that God comforts us in order that we are better able to comfort others. I'm not saying that I'm going to become a counselor or anything after this, but I truly hope that God will use my experience as others deal with tough things in their lives.

I'll leave you with a few more pictures.



She looks like she's waiting for her next spa treatment in her bathrobe. Based on that crazy hair, she needs to be waiting on a cut and a style.

Home Again

Yes, Emma made it home again. The plan the last few days was for her to come home today, and then last night her right leg (especially her foot) started to get really swollen. This was the leg that always got really swollen whenever they put a PICC or IV in it. So then this morning, one of the doctors ordered an ultrasound to make sure she didn't have a blood clot. I was going to just hit the floor crying if they told us that she had a blood clot and that we'd have to stay in the hospital for yet ANOTHER problem. But thankfully it wasn't a blood clot; they actually just think that Emma's veins are "messy" from all the times she's been messed with and stuck. I think it'll take a while for her veins to cleaned up again. Elevating her leg will make it better.

Emma still has some pretty bad gas pain, even though she's been burping much better these days. She just struggles so hard to breathe, especially when she chokes, and I think she swallows a lot of air this way. I just don't know what the answer is. She's not screaming all day or anything, but the afternoons and evenings really aren't that pleasant. We feel like we're on pins and needles waiting to see if she's going to scream in pain.

In addition to the swollen leg and gas, we now have two more problems: diaper rash that's bleeding and spreading and a cold. First, the diaper rash: worse than it's ever been. She had blood in her diaper today, poor baby. We're trying to keep her lying on her tummy with her diaper open to let as much air get to it as possible. She contracted a cold these last few days in the hospital, as did I. So far mine has made my throat really sore. Emma's has made her really, really snotty. Since we learned that she chokes on her secretions, the doctors told us that a cold will be very dangerous for her: they said she'd choke all the time on the mucus. Last night my mom was holding her, and she threw up all kinds of mucus all over my mom. (I know this is gross, but bear with me.) She did it twice, on a smaller scale, today. What this means is that she's actually NOT choking on her mucus - she's swallowing it. So this puking is actually a good thing! No one wants their child to have a cold, but today a doctor wondered if this is something that can improve, and perhaps her swallowing will gradually get better. Who knows.

Sooooo...anyway, we're finally home. It sort of feels like we're home again with the same baby who has to be on her tummy all the time, but for different reasons now. Before, it was because of the wound on her back (which is completely healed now, by the way), but now it's because it makes her tummy feel better and to let her hiney air out. We've put together her bouncy seat and her swing, and we can't wait to get her walking in her stroller. She loves to move and be on the go, but we've got to her butt all healed up first. Here's a picture of her loving her trip in the wagon on the pediatric floor. I know her face looks like she's scared, but I promise she's not; in fact, she's looking at my mom wondering when she's going to stop talking and starting pulling her again.



Here's Emma in her cute little going-home dress today, completely sprawled out taking a nap. She had lost some weight when she came back to the hospital, but since she started eating rice cereal, she's packed on the pounds again. Please notice the fat roll in the middle of her right thigh; if you look really closely, you can see some baby cellulite on her left thigh!



Well, time for a final feeding. Emma's been eating her last bottle at 10ish and sleeping until about 7. Let's hope she continues this trend for our first night back at home.

We've been missing out

Emma has now been in the hospital for almost 4 weeks (this go-round). And we spent 3 and a half of those weeks in the PICU. What a crock. If I had known the pediatric floor was this great, I would have asked to move days before we actually did move. Let's compare: we no longer have to walk down the hall to a community bathroom; we have our own. I can shower here in our own shower when I spend the night and stay all day the next day. We have access to ice without asking a nurse. We also have access to a refrigerator, coffee, a water machine, cereal, ice cream, milk, juice, and free movie rentals. Those last 5 things are technically for patients, but Russell and I are eating and drinking Emma's share of those things. We haven't rented any movies...yet. We have more counter space. We have drawers. We have curtains AND shades to block the sun when necessary.

Our nephew, Mason, got to meet Emma yesterday...oh, how precious. He's two, and he wasn't allowed to see Emma when she was in the PICU. He's been asking about her, and I think he was pretty excited to meet her yesterday. Here's Mason being a sweet little boy and petting her tummy...and don't miss out on how happy Mary Jane is with both her grandchildren for the first time.



Our latest adventure with Emma is putting her in a wagon here at the hospital and wheeling her around the floor. She LOVES it. She looks all cute and snuggly with two pillows, her Boppy, and a blanket...unfortunately, I didn't take a picture of it today. I'll try to remember to take one to post on the blog. I do, however, have a picture of Emma in her swing, which she also loves. In this pic, she loved it so much, she went right to sleep.



We're not sure how much longer we'll be here in the hospital, but we think it will just be a few more days. I know this sounds like good news, and it is...to an extent. The downside is that we didn't come to the hospital and get something fixed; we came to the hospital to find out that something else is wrong that CAN'T be fixed. A malformation of Emma's brain stem has caused her vocal chords/throat muscles to not work quite like they're supposed to. So now we just have to take it a day at a time and pray that God will be merciful to her. As I've said before, I don't know what that means exactly; but I do know that it will be good and according to His plan. We will carry on as if this hospital visit didn't happen - Emma will have normal well child visits, as well as visits to Dr. Troup. She'll have the surgeries that had already been planned for her.

Pray for Emma, and pray for Scilla.

Sorry to bore you...

...but there's not much change with Emma. This is good and bad, I guess. Emma's choking episodes have been pretty bad today and very scary. She was pretty fussy for a good part of the afternoon because of her bad gas...of course. It kills me how it sounds so ordinary and routine to say that she has gas, but to see the pain on her face and hear the pain in her cries is just unbearable.

The big news for us is that we're moving to "the floor" tomorrow. "The floor" is the regular pediatric part of the Children's Hospital; we won't have as much one-on-one care as we have in the PICU, but Emma's not really depending on monitors or IV's or anything like that. Her medicine is minimal - the only thing administered by nurses is Zantac and Ativan on the rare occasion that we feel like we can't take her fussiness and restlessness anymore. We only do that when it's hard for her to breathe because she's so upset, and she's only gotten it 3 times. But phew, what a lifesaver it's been on those 3 occasions. Once we get to the floor, I don't know how long we'll stay, but we'll just stay the course: keep bottle feeding Emma and monitoring her oxygen levels and choking episodes.

Well, that's about it for now...see, I told you it was boring.

Please continue to pray for God's mercy on our sweet baby. We don't know what the future holds, but we're praying that God will grant us peace and our baby mercy from her pain and struggles. Please pray for Scilla, my sweet high school classmate, Betty's, sister. She is back in the hospital and is in a lot of pain. (Check out Betty's blog on the right side of my blog homepage.) God, please heal our pain and grant us your peace, mercy, and reassurance.

This room stinks

Emma is stinking up her room. We keep telling her it's not ladylike, but I don't think she can help it. She's still pretty gassy, and today has been somewhat painful for her but not the worst day she's had. The last two days have been pretty mundane, with the exception of all the crying.

Emma's still eating from her bottle ok, but she's also still choking on her saliva. The formula is too thick for her to actually choke on it when we're feeding her, so she saves those harrowing moments for when we're not expecting it. We're going to keep an eye on her for the next few days and then consider going home. We're just taking it one day at a time and trying not to overthink what the future holds after we get her home. Jesus said, "Who of you by worrying can add a single hour to his life?...But seek first his kingdom and his righteousness and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." This is very easy to read, very hard to live...but I'm trying. God knows I've worried more about tomorrow than today than I should, but in this period of unknown, it's important now more than ever for me to focus on enjoying our little girl and getting her through each day, one at a time.

We've definitely learned that Emma doesn't like tub baths; she prefers to lie on the counter and be soaped up with a washcloth. One of the many downfalls to having her in the hospital for 10 of her 11 weeks here on earth is that she hasn't really had the chance to get used to the things that other babies are used to by now - tub baths (although some babies still don't like them) and being located in places other than a crib or someone's arms. That last one's a killer - she may be spoiled rotten when we go home...we'll see. Today's victory is that she enjoyed the portable swing that my mom brought to the hospital. She swung herself right to sleep after a fussy 5 minutes of getting used it. Then she choked on her saliva and woke herself up, so we stopped the swinging and just left her in it. Minutes later she was back asleep again and probably would have stayed there all night. Victory! She likes her swing! In fact, we even got a video of her smiling about it. Ok, so maybe it's just a reflex smile, but it's still cute, even if her mouth is hanging wide open catching flies.

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.