Thursday, July 31, 2008

Brave Little Lion

Today Bobbi came to visit…she loves your feet! She brought you a new little friend—his name is Lambert. When Bobbi saw him, she thought of you because she thinks you are such a brave little lion. She is right!

Monday, July 28, 2008

A Diagnosis

We have had a big week.

Mommy’s friend Melissa got married Saturday! We had a fun, wedding filled weekend with her other friends and family. At times my heart ached for you, but I am so glad I got to share this special time with her. It was also lots of fun dating and dancing with Daddy! Also on Saturday Mommy's other friend Melissa came to visit you in the hospital. I didn't get to see her, but she brought you a big, beautiful blanket with your name on it, and her mommy brought you some cute essentials like socks, burp cloths (oh man, will those get some good use) and towels!

On Friday you had a surprise eye surgery. We thought you were going under anesthesia just so that the doctor could get the most accurate measurement of your eyes for glasses and contacts (we will eventually have both). When they got in there, they saw you had glaucoma in both eyes. Since your right eye had scar tissue from your previous surgery that was increasing eye pressure, they went ahead and removed it while you were already under. The left eye is being treated with medicine. Vision is still very possible for you as long as your brain processes the images correctly. Tomorrow I am going to order your glasses since you are already thinking about opening your eyes. We will graduate to contacts when you come home from the hospital and your drops are finished.

The most important event of this week was your diagnosis of Smith-Lemli-Opitz Syndrome (SLOS). We were hoping for better news. It is a genetic disorder which prevents you from producing cholesterol. Since cholesterol can’t be transferred through the placenta, your low levels before birth caused the congenital abnormalities you have now. After birth the body still needs to make most of it’s own cholesterol, so you will need to go on a special diet to keep you as healthy as possible. It is amazing how you have all the characteristics of SLOS--you could be the poster child. Your cataracts, cleft palate, extra finger, physical features, small stature, digestion problems, weak suck and swallow are all typical of the syndrome. . You even have Hirschprung disease that is only rarely seen in SLOS children.

The two things I feared the most for your diagnosis were slow cognitive skills or a shortened life span. Both are likely with SLOS. From what I have read, the majority of children with SLOS have moderate to severe mental retardation. Some don’t learn to walk or talk. Life expectancy can be shortened depending on severity, or it can be normal with the right diet and medical care. Since you have every issue associated with the syndrome, the doctors fear you are on the more severe side.

The entire time your dad and I were expecting you, I imagined what you would be like. In all those dreams I never expected you to be anything but sweet, happy, beautiful, and smart. In the days that followed, there was a mourning period for the little girl I had been anticipating. I no longer had the assurance you would be any of those things I thought were a given. But within a few days I came to know your personality well. You are without a doubt the sweetest baby ever created; always very happy unless it is bottle or bath time. You are absolutely beautiful and precious—everyone says so. And I think you are very smart. You know the smell of alcohol means you are about to get stuck. You know how to play possum when the OT is around, but then perk up as soon as she leaves. You know that when Grammy is there you barely have to fuss for her to hold you, but Mom isn’t as easily manipulated. I had managed to convince myself that by the time you started school your medical issues would be fixed and your features would change as you grew—you would be that bright, bubbly little girl and this struggle would be a memory. So when this diagnosis came Wednesday evening, the mourning process began again.

I am sad for you to not experience so many of the joys in life, simple and otherwise. Depending on how severe your photosensitivity is, you may not be able to spend any time in the sun, which would eliminate the possibility of the zoo, beach, park. You probably won’t have the motor skills to ride a bike. I will be pleasantly surprised if you learn to read. You most likely won’t fall in love and be married. There are no known instances of anyone with SLOS having children.

While we were waiting to find out what your prognosis was, I struggled with what I wanted for you. On one hand I wanted you to be as normal as possible which to me meant cognitively. On the other, I was afraid that you would have a rough childhood if you didn’t meet society's standards of beautiful. The thought often crossed my mind that if your mental development was lacking you might even be happier. You wouldn’t know you could be any different, and would be surrounded by people who loved you. Now that it looks like that’s the case, those thoughts are only a small comfort.

This raises so many other questions. With independent living not possible, what happens if you outlive us? How will I survive if you don't? With a 25% chance all of our children will have SLOS, how will you have brothers and sisters? Do we risk SLOS again, or adopt? And when we do have more children, how do I make sure they experience fun things such as family vacations while never letting you feel left out? How will we pay for years and years of medical bills?

But as I write this I have to remind myself that doctors don’t know everything, and that God isn’t limited by what science says is possible. He stepped outside the bounds of what is considered “normal” to make you the way you are; He can most definitely step outside the bounds to heal you. I have to be careful not to make excuses or exceptions for you. It would be easy to fall into the trap of expecting too little from you, but Daddy and I are deciding now not to let that happen. Always I will gently (and when necessary not so gently) push you to do your best, whatever your best is. My hope is that the small bit of cholesterol you were able to produce before birth was all saved up for your brain, and you will shock the medical field with the progress you make. And if that’s not so, it won’t make any difference to the quality of your life. You are going to love your life no matter what, and I will love mine because you will be nothing less than a total blessing. You already are.

Wednesday, July 23, 2008

July 23

We are still in the hospital…I was hoping, once again, we would be home by now. So this time, I mean it when I say I am not guessing when we will finally bust out of here. The pod you are in is a regular revolving door—babies come and babies go so quickly. It needs to revolve in our direction.

Your feeds are up to 36 CCs over an hour every three. Halfway there. It took 10 days to get to this point—at Women’s it took 4 days to go from 0-65 CCs. Your reflux has been really good up until yesterday. You spit up really big a couple times in the night—I am hoping it was just a fluke and you are feeling better today. The renal doc came to look at your kidneys yesterday to see if she can find the cause of your high BP. She didn’t seem concerned, telling me that your BP isn’t high enough or consistent enough to warrant any meds and that she didn’t know if the high BPs were while you were upset. I told her your BP is usually only taken once, maybe twice, a day and always when you are asleep. Then they will take it several times in a row until they get the lowest number possible, and that is the one they write down. They will take it more often when I ask, but I don’t know if they write it down or not. But all the numbers I have seen are well above the normal range for infants. So now the nurses are supposed to take BP every 8 hours and document other outside factors also, such as whether or not you are fussy and if the cuff was on the arm or the leg.

Your ophthalmologist should come today to do a refraction test! You have peeked your eyes at me a few times in the past two days. I keep telling you not yet, just a little longer! I am anxious for you to see, hoping the visual stimulus helps you to perk up a little. A developmental doc will check you out today also to let us know if you are behind—there is a little concern over your weak muscle tone. Still slowly working with OT. There is some progress, you are much more tolerant of the bottle in your mouth.

Daddy has been missing you lately. This week is a busy one for us and he doesn’t get to spend as much time with you as he wants. But when you are together, you two are pretty cute!

Friday, July 18, 2008

July 18

I just knew today would be a good one!

This morning you took 8 CCs from your bottle--what a big girl you are! I really believe you try and want to take the bottle, and I am pretty confident that sucking isn't your problem. My gut tells me there is some reason that you can't swallow well. Usually you will latch on, take a few good sucks, and then once your mouth fills with milk you break away and start to panic since you don't know what to do next. With your small tongue it is so hard for you to manipulate the fluid in your mouth. I am not sure how to teach something like that...I guess it will just take practice and trying a bunch of different methods. But we are so proud of your 8!

The ophthalmologist came today to check on you and we got good news there also! He said your eyes looked good--no infection. He did comment that one cornea was still a little hazy, and also mentioned small pupils, but he adjusted your medicine and didn't seem too concerned. I was surprised when he told me that you would probably be fitted for contacts because they work best. I wanted to say, "Really? Best for who?" because I can't imagine wrestling with a 6 week old over contacts. I am sure it will be like anything else though, and over time you and I both will get used to it. The best news was that you opening your eyes isn't at all a problem. In fact, it is exactly what you should be doing until you get the glasses or contacts. As long as your eyes are closed and in an infantile state, I don't need to worry about the eye-brain connection. If your eyes were open and not seeing clearly is when we have a problem. So you have a break from me encouraging you to open your eyes (at least until we get some corrective lenses on you...then I'll want to see some peepers!).

This evening the geneticist came by to check you out again--I wasn't there again this evening. Daddy had some more special Daddy-Daughter bonding time with you. But the doctor told Dad that he had some ideas of what it may be so Monday they will draw blood and do an X-Ray to either confirm or deny their suspicions. As much as I would like to know what they are thinking, we won't be told until they are positive and I completely understand why. Honestly, it doesn't make too much of a difference and I might be happy never knowing. It would be nice to have a name to put with this, and an idea of what the future holds. But mostly I am afraid of what they will tell me was the cause. If it was something genetic, that means I had nothing to do with why you aren't perfectly healthy. But it also might mean no brothers or sisters for you, since chances are this could happen again. If it was environmental, it means as hard as I tried, I still couldn't do everything perfect enough to keep you healthy and I would have a very hard time dealing with that. And if that's the case it still might mean no brothers or sisters for you, because I can't imagine being pregnant again without worrying myself sick for 9 months. And I was planning for a big family! I love my relationships with your aunts and uncles; siblings are the best and I would hate for you not to have any.

But I guess the common denominator is that I have no control over anything, and maybe that's what God is trying to teach me through all this. You dad and I didn't even expect you for several years--I didn't choose when you came and look at how happy we are now. I just have to keep telling myself that, "God created your inmost being; He knit you together in your mother's womb. I praise Him because you are fearfully and wonderfully made; His works are wonderful, I know that full well. Your frame was not hidden from Him when you were made in the secret place. When you were woven together in the depths of the earth, His eyes saw your unformed body. All the days ordained for you were written in His book before one of them came to be." God doesn't make didn't just slip by Him. You are the exact way He wanted you to be, and while I still don't understand it I am confident He knows better than me.

Look at you in your pretty bow Mrs. Elaine brought you. You are so beautiful (and you have a beautiful Grammy too).

Thursday, July 17, 2008

July 17

I have been with you since 8:00 this morning, but still I am having Audrey withdrawals. Daddy is with you tonight while I get some things crossed off the to-do list that I keep putting off. One of those things is to update you on the last few days of your life! It is hard to keep this current because things change so quickly, and when we stay at the hospital overnight like we have most of this week, I don't have internet access. So here is the latest scoop.

Your fever broke a couple days ago—spinal tap results came back perfect, praise God! The doctors say you had a UTI and that’s why the fever. I know that made you so uncomfortable, but it is much better than one of your surgery sites being infected. You are such a good baby. I know I tell you all the time—do you get tired of it? It’s not just my biased opinion though; all your doctors and nurses agree that you are so tolerant and easy. Even still, you have been fussy for a couple days. I really think it is because you are hungry. They started your feeds on Monday but it was only 3 CCs an hour on a continuous feed. Just enough to start your tummy moving and make you realize you don’t feel full. Tuesday they moved you up to 6 CCs an hour, and today 9 CCs. That is less than half of what you need, but the TPN makes up for the rest. You are tolerating them well as far as your G-Tube and colostomy goes. Prevacid is helping with your reflux. You met with your new OT today to work on the bottle again. You already are cranky about it being in your mouth, but like last time, I am sure it won’t take long before your tolerance improves. Last night I had a dream that your surgical line had to be removed and I was so worried you would need IV after IV again. When Daddy and I came in to see you there was a new stat on your monitor, and it was clicking away the amount of milk you had taken by bottle. It was up to 50 CCs and rising—that would have been crazy enough. But in my dream, you were holding the bottle and feeding yourself! Now that would be an improvement! No huge rush though—the G-Tube buys us time to learn how to take a bottle without the stress of a deadline.

In the meantime I am learning how to care for your ostomy bag. Not a fun job. You know, for a minute I actually thought how I really lucked out in not having to change dirty diapers. What a silly mommy! And as much as I don’t like it, it is much worse for you. Your skin is so sensitive, and the area around your stoma (the part of intestine that is sticking out) gets chapped and bleeds from the stool sitting on it all day. Emptying it doesn’t bother you, but changing it sure does. We are all praying it doesn’t get infected so we can have the reattachment surgery as soon as possible. The ophthalmologist still hasn’t been by to fit you for glasses, but it doesn’t really make a difference since you haven’t opened your eyes. You turn your face towards me when I talk to you and you raise your eyebrows in the cutest way to “look” at me—I keep telling you the eyelids are the key! I am still worried about the eye-brain connection being established, so let’s make tomorrow the day…ok? Your blood pressure is still high. We have been blaming it on the pain from your surgeries, but you aren’t in pain anymore. So today you had another abdominal ultrasound and a follow up ECG. It may be your kidneys (which are a little small) or your PDA causing the problem. The test results should be back in a couple days. While they did the ultrasound, they also looked at your liver and right leg. The liver because we still aren’t sure what caused it to look different on the first one and your leg because it is larger than your left. This may mean that your surgical line has a block and would need to be taken out.

Whew. We still have a ways to go. But already so many issues have been resolved. Priorities now are getting you to open your eyes, lowering that blood pressure, and increasing to full feeds. Tonight, you sleep sweetly. Tomorrow we will wake up and have a great day.

Sunday, July 13, 2008

July 13

This morning you started running fever. The highest it got was 100.8, but with all your surgeries we are afraid of infection traveling to your brain. To make sure everything is ok, the doctor took blood and urine for analysis, and also did a spinal tap. My plan was to stand next to you, hold your hand and comfort you the best I could but I was told there wouldn't be room for me. So instead of staying to listen to you cry, Daddy and I stepped into the hall. Mema stayed with you, and she said you didn't fuss much at all. She told me the part that upset you the most was being curled up into a ball on your tummy to expose your back. God sure knew what He was doing when He gave you such a high threshold for pain and your dad's laidback personality.

Your results won't be back in a couple days, so to be on the safe side, you have been started on three antibiotics. We know that your eyes and ears aren’t infected. Our best guess right now is your surgical line might be the problem. If so they will pull it out and give you a normal IV. Fortunately, you will probably start on small feeds tomorrow, so it wouldn’t be long before it came out anyway.

For the last two nights, Daddy and I have stayed overnight in a room TCH has for parents of NICU babies. What a great comfort for us! I was able to stay as late as I wanted even if Daddy needed to go to bed. First thing in the morning we could hop out of bed and see you. The best part was knowing that if you were in pain and needed me, the nurse could give me a call and I would be at your bedside in a moment. Even though the nurse said you slept well both nights and the grandma of your roommate across the hall confirmed it, I still had a hard time leaving you again tonight. The goal is to get you back up to your full feeds as soon as possible so we can go home; you and I will cuddle together all day and then with Daddy at night!

Friday, July 11, 2008

July 11

You had your fourth surgery in as many weeks today, and it was such a success! Your retinas are completely intact and the surgery went smoothly including the intubation. The anesthesiologist confirmed you are difficult to intubate, but since he was prepared it only took one try. The most exciting news was that the retinal surgeon said you had, “A good chance for good vision”. Your Grammy liked to have fallen out on the floor when she heard that and made him repeat it! We are all so relieved foremost that you came out of the surgery well and secondly that you most likely will have vision.

Once you are back up to full feeds with the G-Tube in a week or so they will pull the central line out and it will be time to go home! We should be done with surgeries for a few months now; the next one will be to have your colostomy reversed, and then at 6-18 months you will have the first of several surgeries to repair the hole in your palate. It’s interesting to me how my perspective has changed so quickly about so many things. Just last week I was so anxious to have the NG tube and central line removed. Today I can’t wait for the patches, ostomy bag and G-Tube to go away. When Daddy and I were trying to make a decision on whether to do the NG or G-Tube, both options made me nauseous, but eventually I made some peace with the G-Tube. About the same time I was told you would need the colostomy, and suddenly the G-Tube seemed like a piece of cake. I really want to hate the procedures you are having, knowing the pain you go through and the risks involved. But I keep telling myself to be grateful that this technology is available, because the alternative to not having these surgeries is much worse. And how blessed are you to be born in Houston, Texas where we have some of the best medical care available in the world? Anything you could ever need is just down the street from us. We are fortunate in so many ways—God has been so good.

This first picture is of you sleeping in your snazzy new sunglasses Honey and Grandpapa gave you today! Get used to the feeling Precious, you will have glasses on your face for at least 6 years. Good thing you are still cute as a bug.

Daddy was determined to take a picture of you while recovering from surgery. You were laid out so that all your new contraptions were exposed. We didn’t want to use the flash since we could see part of your new eyes peeking out from the patch, so he covered it with his finger, and you turned out red. He thought it was so cool, I bet a bunch of red pictures start popping up.

Thursday, July 10, 2008

July 10

You turned one month old yesterday! The first night I had to leave you in the hospital, I was only expecting you to stay a week or so, and I thought that week would be the longest of my life. By God’s grace, I am happy to say this month has gone by surprisingly fast. I am still as anxious to bring you home as ever, but am so thankful the days go quick and the nights go quicker.

You have had so many visitors since you came to Texas Children’s! Pastors Jeff and Chris came to see and pray over you on Monday before your surgery, and Mrs. Elaine from church came to see you yesterday. She brought you the cutest bows to put in that pretty hair! Aunt Paula’s friend Maria works at TCH and came by also. Her son was in the NICU for a couple weeks also, and they created the sweetest CD of lullabies and prayers. Then, we had a visit from Dr. Justin. He read the Monday JVBC blog that requested prayers for you and happened to be in the pathology lab later that day when your slides during surgery were coming in. I bet he checks on you again from time to time. Most special was last Sunday when you got to meet your Aunt Shelby and Uncle Clayton for the first time! Texas Women’s made an exception for them and allowed them to see you for a little while. And of course, every day you see Grammy, Honey and Mema. We love having friends come spend time with us and break up our day a little!

You seem to be coping with your pain well. The nurses are good about giving you more meds when your heart rate starts to go up and you become fussy, but you are going longer stretches without them. This morning was rough for us. You aren’t much of a bleeder, so yesterday they had to heel stick you three times to get enough to run tests. It showed your potassium levels were high, and while the doctor attributes it to the way the blood was drawn, the only way to know for sure is to take more blood. So today they took blood through an IV draw and it took 5 times before they got it—three in your arm and two in your scalp. I was there to hold your hands, talk in your ear, kiss your face and sing songs, but you just cried and faced me as if to say, “Make them stop!”. Actually, we both cried and when they finally got what they needed, we were both exhausted.

You are still NPO, meaning no feeds. You probably won’t eat again until Saturday, since tomorrow you are having your second surgery this week. This one is for the cataracts and is partially exploratory. Your eyes won’t dilate to give the doctor a good look at the back of your eyes, so he will try to fix whatever he comes across while he is in there. We are hopeful that your retinas aren’t damaged, but we won’t know for sure until tomorrow. Babies can’t have lens implants because when the eye grows the lens would fall back. This means your vision will be extremely bad and will require glasses immediately to properly establish the brain-eye pathway. By about 6 years old your eye should be full grown and you will have another surgery to implant the lens.

I know I tell you all the time, but I am just so proud you. I can’t believe how tough you are despite your circumstances. You are always so easy to please and keep happy even though a good portion of your life you have been in pain. You have completely spoiled me for any future siblings you might have! Ok, on my way right now to see you. I love you sweet baby!

Monday, July 7, 2008

July 7

Whew, what a day we had today! Early this morning we started the transfer process from Texas Women’s to Texas Children’s. It was bittersweet to leave Women’s—bitter because we know so many of the staff and families that we will miss, sweet because that is one chapter we are leaving behind to move forward. You are 4 weeks old today, and it was the first time you have ever been outside the hospital. There is such a huge world you know nothing about! When it was time to go, we didn’t get to ride with you in the ambulance since there wasn’t room with all the medical personnel. But they let Daddy and I know that you did not appreciate being in the sunlight. We were encouraged, hoping that means you have sight underneath those cataracts!

Once we got settled in, the doctors and nurses started prepping you for surgery a little after noon. We made sure everyone knew how difficult you are to intubate. The anesthesiologist didn’t seem to think she would have any difficulty, but assured us if she did they had other options, such as the LMA. Turns out she couldn’t make it work either! She called the ENT to come examine you and find out why everyone was having such a hard time. You would never guess what he told us! He said hat you had completely normal anatomy back there and the reason no one could do it is poor equipment and bad lighting! Your jaw being set back doesn’t help much either, but Dr. Duncan slipped your tube in without any problem! So now we know only to have surgeries on Monday and Thursday when Dr. Duncan is there to intubate you. And praise Jesus, you didn’t have any problem coming of the respirator right away.

As for the rest of the surgery, that went well also. When you came out of the OR into recovery, the hospital tried to page us, but we were out of range. So it wasn’t until a bit later when you were back in the NICU that I got to see you. Because of that, we haven’t spoken to the surgeon about the surgery yet, but tomorrow I will get details on how much of your intestine was removed. Your G-Tube was placed and should be ready to use in a day or two, and also your littlest finger was removed! Turns out they couldn’t just tie it off, so Dr. Minkus cut it off as an afterthought.

You were definitely uncomfortable and alert for a couple hours post-op. Your voice was hoarse from the intubation and was heartbreakingly sweet sounding. I hate that you feel so badly and I can’t hold you. Just like last time, we held hands and I laid my cheek down on yours and spoke softly in your ear until you stopped crying. Eventually they gave you some morphine which made you feel almost immediately better, and put you right to sleep. Tonight I pray you sleep sweetly until morning when I can be with you again.

Sunday, July 6, 2008

July 6

This video is from a couple weeks ago, the day after your first surgery. Your Aunt Paula and Honey are loving on you! You are so stinkin' cute. Your cheeks are so red because the nurse had just taken off the pads and tape from your NG tube.

Saturday, July 5, 2008

July 4

Daddy and I had a rough night yesterday. I was a little discouraged from the news we received on you. In the morning, the cataract surgeon came to check you out, and it sounds like she suspects you might have some retinal involvement along with the cataracts. If so, your prognosis isn’t very good. There isn’t much they can do if the retinas aren’t fully developed. Then I spoke with your general surgeon (Dad says not to be confused with the surgeon general…silly Daddy) and he says your colostomy is necessary. I trust him when he tells me this is the most conservative, risk free option, but I really hate to have to do it. And then when we got home late last night, there was a letter from the state health department saying your blood screenings show you have a thyroid disorder. They also said there are several factors that can make the results inaccurate and more testing must be done, but it was really more than I was wanting to handle last night. Dad and I spent awhile struggling with the “why” of it all last night. It had been a couple weeks since I had given into the emotion and I think I just needed to be sad for a bit. Daddy too—he has been so strong through all this and he needed to let it out. It seems so unfair—why you, why this? But what I realized is that nobody who goes through this ever thinks it is fair. And the amazing amount of love I feel for you is small in comparison to how much God loves you. So if I hurt this much for you, I can only imagine how Christ feels. I am sure He was crying with us last night. And that is why it is so hard, because we just have to have faith that even though this doesn’t seem fair, and I am positive that God hurts for you too, He created you and put you together like this for a reason. Your dad does a good job of praying that God’s will be done in you. I am not there yet. I don’t know what His will is and I don’t know if it matches up with mine so I am afraid to embrace it. So now I am praying to want to want God’s will in you. Is that silly or what? But everything seems brighter after a good night’s sleep and I woke up anxious to see you today.

Dad and I went home last night (we have been staying at Mema’s ever since you were born since she lives so much closer to the Med Center and we only go home a couple times a week to change out clothes and check on the cats). This morning we had to get a lot of things done on that side of town, so we didn’t get to see you until after the 3:45 shift change. But you spent the morning with Grammy, Mema, and….Aunt Paula! She came to see you again this weekend because she loves you so much! You looked so cute in the 4th of July outfit your Mema bought you and enjoyed cuddling with everyone. At your 6:00p feeding you did such a great job! You took 9 CCs from the bottle and had a good sucking pattern down. I was so proud of you that at the 6:30 break we went to buy you an iPod! I thought you would enjoy listening to that in your crib over the beeping of monitors and the crying of other babies. You do love music. And your Aunt Paula bought you the book “Barnyard Dance” (since she is the dancing Aunt). When we came back you were sleeping soundly, so story time will have to wait until tomorrow.

Wednesday, July 2, 2008

July 2

Hi Sweetness! You did a great job this morning with your bottle! Mama fed you for the first 5 minutes of your OT appointment and you took 5 CCs! Ideal is 2-5 CCs per minute, so it was still pretty slow, but you had a great rhythm down. I am so proud of you! When I handed you off to the OT you got frustrated and didn’t do much else until our time was up. For the rest of your feeds you weren’t as enthusiastic, but as Daddy and I were leaving this evening you were going to town on that binky. I am encouraged by your progress! I pray that you show enough improvement by Monday to convince the doctors you can pick this up in another week or two and we can cancel your surgeries for next week!

You were so cute this evening—you kept stretching your arms down to your sides and up over your head. Your eyes were open and you looked like…such a person! Daddy couldn’t get enough of you tonight. He really missed you yesterday, and I could tell how happy you were to be with him tonight also.

July 1

I told the doctor this morning that Daddy and I decided on the G-Tube for you. We are trying to combine as many surgeries as possible, so right now the plan is for you to be transferred to TCH on Sunday for a Monday surgery. They will place the G-Tube and give you a colostomy and maybe Dr. Yen will check you out this week and consider doing your cataract surgery at the same time. I am not excited about the colostomy—I had thought that wasn’t going to be necessary. Tomorrow I will discuss why they feel this is best with the doctor.
Daddy didn’t get to visit with you this evening. He didn’t miss too much though. You refused to wake up to take your 9:00p bottle. This time you weren’t acting, you were completely out. I gave up after awhile and left while you were sleeping peacefully.

June 30

Today was supposed to be the day we gave the doctor a decision on which tube you should go home with. I have a leaning toward the G-Tube, but really I don’t like either of our options. Daddy and I need to think and pray about it a little more.
You did pretty good on your feedings today! This morning you tried hard for your OT. You did not try hard for your mom. You were “asleep” for your noon bottle. Funny how you perked right up as soon as our time was up and they started giving you your tube feed. And for your 6:00p you looked like you were doing such a good job sucking, but when we measured what you took it was almost nothing. Are you going to be an actress? You do a really good job faking me out.

June 29

Daddy and I spent the day with you as always. You started some reflux medication today, and it seems to be doing the trick. If you spit up at all it is way less than before. You have been opening your eyes more and more these days. So simple, but it is my favorite thing you do. Daddy's favorite is when you pucker your pretty little lips like you want a kiss.

June 28

Dad and I were at the hospital for your OT feeding this morning...apparently you are taking the weekend off. You just weren't willing to take the bottle and were gagging so easily. I had to leave after your feeding to go home and get some things done, so you had some special Daddy-Daughter time! Starting tomorrow either Dad or I are going to start trying to give you a bottle for 10 minutes before each feed. Maybe with extra practice we can get this down more quickly!

June 26

This morning you met with a different OT--she was much more gentle with you so you took less milk (6 CCs). But you didn't throw a big fit or spit up--what a good girl! You were moved up to 50 CCs and are handling it so well. I suspect you have reflux and will need to go on medication but your digestive system is looking good. Dr. Bloss who did your anoplasty and biopsy told us on Friday that he doubted you had Hirschsprung’s--he said he only had seen one baby in all his years who had both Hirschsprung’s and anal stenosis. Today we found out you make baby number 2. That means another surgery down the road, but right now it is probably 6 months out. It isn't posing a problem and so the plan is to wait until you are a bit bigger. The better news I found out today is that when they remove your central line in a few days, you won't need any sedation at all! I was expecting them to put you under again so I am way excited now. You are still on track to come home within a couple weeks!

Grammy, Honey and Mema visited with you today, just like every other day. And your Granddaddy came today also! They all gave me good reports on you--everyone loves you so much.

June 25

We had another good day today! Your OT came this morning at nine and tried a different bottle to see if you would take it better…no such luck. It only gagged you and made you angry (I don’t blame you at all). We went back to the Haberman and you did better with that one. By the time our 25 minutes were up you had taken 10 CCs—that’s a big improvement from yesterday! I am very proud of you! Afterwards, your Grammy spent most of the day with you and said you kept everything down and had mostly slept.

I spoke with your doctor at 1:30 and she had some preliminary test results for us. Your chromosomes are normal—thank you Jesus! The doctors are still searching for a diagnosis, but a lot of syndromes have been ruled out. Your biopsy shows there may be Hirschsprung’s, but it is being sent of to TCH for a closer look. The important thing is you are doing so much better with your feeds since your surgery! You were moved up to 40 CCs per feeding at 3:00, so tonight they are taking you off your IV other than the saline with heparin to keep your surgical line clear. If you continue to handle your feedings and digest everything well, the doctor will take your line out in a few days! Then all we have to do is figure out how to get that bottle down and we can go home. I know it is such hard work, but it is the quickest way home so we have to practice. Otherwise the doctors will discuss us going home with a feeding tube…either in the nose or stomach depending on how long it looks like it will take to master the bottle or nursing. No matter what happens, we are shooting for you to be home within 2 weeks—that is ahead of the schedule we originally thought!

I missed you so much today. I had to leave the hospital unexpectedly in the morning and when I got back at 1:30, the nurses closed the unit at 2:00 for a stat surgery. We both are spoiled in spending the day together, my heart hurts when we are separated for too long. When Daddy and I came to see you in the evening, you had a new FISH mobile on your crib! You don't know it yet, but Mama really really really doesn't like that was ironic. Also a little ironic that you can't see the mobile, but what a sweet gesture from the hospital. Daddy and I took pictures next to you and your fishies of us making fish faces. You did a better job in our picture than I did!

June 24

Today was a big day for you little girl! We met with the OT this morning for the first time since your first surgery when they took you off feeds. We tried a special bottle for babies with cleft palates called a Haberman. In 25 minutes you took 5 CCs and you screamed and gagged the whole time. (Although I got the impression you were gagging because you were screaming. Your Uncle Clayton used to make himself do that also—so dramatic.) Afterwards you were so exhausted that we just sat and rocked for a long time.

You were also moved up on your feeds twice today! From 15 CCs to 25 CCs to 30 CCs. Each time very little residual, if any, was pulled back. Whooohoo!

When Daddy and I came to visit you after the evening shift change, you were very uncomfortable and fussy. You were working on a BM and it hurt your little bottom because of the surgery. Daddy discovered that if he patted your bottom—rubbing your bottom or patting your back wouldn’t do—you would settle right down. So he patted you until you were finished—I think it gave him a good forearm workout. While I was changing your diaper you started throwing up again. Not good timing. Fortunately it didn’t get as messy as it could have since I had to flip you over diaper-less and dirty. After we all got cleaned up, you fell asleep and Daddy and I snuck some kisses from you and headed home around 10.

You are making such great improvements, at this rate it won’t be anytime before we get to go home!

June 23

What a sweet girl you are. I love spending the day with you, just holding you and watching you while you sleep. It is the best feeling ever when you hear my voice and turn towards me and I know that you know it’s me. You make the cutest face when you are trying to “see” me and I look forward to those times when I see even the littlest bit of your precious eyes. Daddy and I are so anxious for you to have your cataract surgery, but the priority now is your digestion.

Right now you are taking 15 CCs per feeding. Our goal is at least 45-50 CCs. Tomorrow we are meeting with an occupational therapist (OT) who will help us figure out how to best get you to take a bottle, and maybe eventually nurse. You were willing to take a bottle before your feeds stopped last week—it was very slow, but you did it. Slow we can handle.

This evening you weren’t your usual quiet self. Lots of fussing and crying—well, maybe not lots compared to other babies, but lots for you. When Daddy leaned over to talk to you and give you kisses, you smacked him right in the face. Oh, Mama thought that was funny! You must have been hurting still from your surgery—that and you threw up several times. Not just a little baby spit up, but it came from deep in your belly and you made some pretty big sounds for such a tiny person. I have never believed people when they say they wish they could take someone’s pain for them. That has always sounded like a cliché and probably an exaggeration to me. But now I understand…I would throw up all day if it meant you didn’t have to. You are such a trooper and always in such good spirits considering the circumstances. I can’t wait to get you home.

June 22

The food strike is over! You were fed for the first time in 9 days today—5 tiny CCs. It seems like such a small amount to me, but we have to start out slowly to see how your tummy takes it. You didn’t have any residuals…so it is already an improvement over the 4 CCs you were digesting every 3 hours before the surgery. I am taking that as a victory.

There are still no results on the genetics test or biopsy. I was told not to expect either for another couple of weeks. The best geneticist Texas Children's Hospital (TCH) has is on vacation and if he hasn’t diagnosed you yet, most likely no one else will be able to. As for the biopsy, we may get some preliminary results this week, but it will have to be sent on to TCH also. We are all learning patience through this process!

June 21

Still just sleeping the day away. That is a good thing though…sleep is healing and you need to do a lot of that! We just quietly held you most all day. It’s amazing how easy and entertaining it is just to watch you do nothing. You have the cutest mannerisms…you love to stretch your arms out, and you sit with your hands clasped on your belly like Grammy and Mema (much to your Granddaddy’s dismay).

Tuesday, July 1, 2008

June 20

Since the nurse practitioner had such a tough time intubating you last time, the doctor did it himself this time. At least he tried to. He couldn’t get it in and unfortunately you were totally awake while he tried. You are such a trooper. So they used an LMA. This is preferable because it can come out as soon as your surgery is over.

The surgery itself didn’t last long at all and this time the power held out! We went in to see you as soon as we were allowed and you looked so good. You were starting to wake up and didn’t appear to be in any pain. Daddy and I sat with you and held your hand and you mainly snoozed today.

June 19

When the doctors went in to do the barium enema, they found you still have the contrast in your stomach from last week! This makes it obvious something is not right. The surgeon had already assessed that you have anal stenosis (a narrowing of the rectum) and is suspicious of Hirschprung’s (a section of the bowel without nerve endings). So tomorrow you will have an anoplasty and a biopsy of your lower bowels.