Wednesday, April 29, 2009

Little Mr. Clean


Here's Parker today after his bath, he loves the water! Today he weighed 8 lbs., so we actually got there sooner than I thought we would. We have a visit with Dr. Cooper (his pediatrician) tomorrow morning for a weight check and see if we need to increase his volume. Other than that, things are pretty quiet around here, which is how I like it!

Sunday, April 26, 2009

There's No Place Like Home

We finally made it home! They released us from the hospital on Wednesday evening, and since then it has been a flurry of appointments, diaper changes and most of all, eating. Our entire day and night is consumed with feeding this baby. He has to take in at least 400 cc's (13 1/2 oz.) every 24 hours in order to gain weight. Our goal is an ounce of weight gain every day. This doesn't sound like very much, especially over a 24 hour period, but when you have feeding difficulties it seems like gallons. He's doing well with his bottles, but he did come home with a feeding tube, so whatever he doesn't finish by mouth we feed through his tube.

On Thursday we had our first appointments with the Cranio-Facial Center at Scottish Rite and with our pediatrician. We met with the nutritionist and the occupational therapist at Cranio-Facial, and both were very nice. We go back on May 20th to see the plastic surgeon and the therapist again. We will see our pediatrician again next Thursday for a weight check and to see if we need to increase his intake based on his weight.

Peyton had a tee-ball game on Saturday, so Parker got to enjoy some time outside. Peyton's team has had a rough start this season and hasn't won a game yet. They tied on Saturday 4-4. Yea! At least it wasn't another loss!

Before we left the hospital on Wednesday Parker got to meet his Grandpa Gardner! Brian's Dad came through town after a golf trip to Myrtle Beach, so he came by and spent a few hours at the hospital with us. It was great to see him. He lives in New Jersey so we don't get to see him very often. I was so glad he got to meet Parker while he was still so small.

I think that's it for now, time to go feed a baby again.



Sunday, April 19, 2009

Homeward Bound

Parker continues to improve with his eating. We still have a ways to go, but after talking with the doctor today, we may get to come home this week, possibly on Thursday! We will have to come home with tube feedings, but the important thing is we will be home! Parker will be three weeks old tomorrow, and it's been a very long three weeks of traveling back and forth to the hospital every day, spending all day there with him, and his Daddy going in almost every night at 1:00 a.m. to feed him. I can't imagine that we will be more tired than we are right now once we get him home.

Parker weighs over 7 lbs. now and is normally eating 45-60 cc's by bottle (that's 1 1/2-2 oz.). The problem is he only takes a bottle three to four times per day. In order to gain weight, he needs to take in about 65-75 cc's every three to four hours. If we try to give him a bottle more than three to four times per day it just wears him out and he's only able to get down about 25 cc's (about 3/4 of an oz.). As a result, we have to tube feed him every other feeding to keep him from getting too tired. When you come home with tube feedings, you also have to learn how to change his tube. Luckily, this only has to be done once a month. Today his Daddy worked with the nurse and changed his tube for the first time. I know it wasn't easy for him, but he did great and got it in just fine. Right now I am just too chicken to try it. Besides, someone needs to hold his pacifier in his mouth and keep his little hands out of the way, and I think that's the perfect job for me.

Once we get home we will be able to begin working with the feeding team at Scottish Rite's Cranio-Facial Clinic. This clinic does nothing but work with babies like Parker with feeding issues. We will also be working with our pediatrician on weight checks, probably daily, and also will start seeing a pediatric gastroenterologist since we are going home with an NG tube. There's a lot of work still to be done, but we are excited to finally look forward to getting our baby home so we can start on the road to his repair surgery. Please keep us in your prayers as we move forward.

I've posted a few new photos from today just before I left the hospital. It kills me to leave him while he's awake, so I avoid it whenever possible. These photos were taken while he was making his last-ditch effort to get me to stay, but he dozed off right after I took these photos, so I was able to sneak out.




Friday, April 17, 2009

Great Friday!

Parker had a great day today! He took 55 cc's (1.86 oz.)from his bottle at lunch today, which is an all-time best. He then took 35 cc's (1.18 oz.) at his next feeding time, when normally he would have been tube fed. I was so proud of him, he's definitely getting stronger. He also hit the 7 lb. mark today! He weighed 7 lbs., 1.25 ozs. at weigh-in last night. Great job little man!

Thursday, April 16, 2009

Day 18

Not a lot to report today, Parker is feeling much better after the day he had yesterday. He weighed in last night at 6 lbs, 15.5 ozs., so I'm hoping we hit that 7 lb. mark tonight! He got a nice bath this afternoon and he looked so handsome I had to take a few photos. I think he's changed already. What do you think?


Wednesday, April 15, 2009

Parker's Horrible, Terrible, No Good, Very Bad Day

My poor baby had quite a difficult day today. His day started with a new feeding tube and an inexperienced nurse. NOT a good combination. Now you can probably imagine how uncomfortable it is to have a tube stuck up your nose and down your throat into your stomach, but imagine having to go through it twice because the first time it went into one nostril and out the other. Now try to imagine you're an infant and can't communicate (or say really bad words) having to go through this. Not to worry - Mommy uttered those really bad words for him under her breath, and it took all I could do not to say them really loudly to the obviously very nervous, very young, inexpeienced nurse.

After we settled down from the tube fiasco, we found out that today would be the day that Parker would have what is a very common *ahem* "procedure" on his little boy parts. After the neonatologist realized he would be having said procedure in the afternoon, she ordered labs because when he was first admitted his platelet count was a little low. Apparently to check on whether or not you might bleed excessively during a procedure, you get blood drawn. Makes sense, right? This time a second nurse decided she probably needed to help the young, nervous, inexperienced nurse with the blood draw. They started out with a heel stick which wouldn't bleed enough, so they stuck him again. It took a long time to get the blood drawn because the blood - get this - kept clotting. After about 30 minutes, they get done and send the blood to the lab. The lab promptly calls back and tells them they can't use the sample because IT CLOTTED. So what does this mean? You got it - they stick him again. This time in the hand, and again, must do it twice because he clotted again. They finally decide that he (and they, thankfully), have had enough and stop, figuring that he's clotting so much during the blood draw that he should have no issues with his "procedure".

I had to leave for a while to pick Peyton up from school, and when I got back, said "procedure" has been performed. One of the more experienced nurses comes to tell me that Parker is having "moderate" bleeding from the procedure and they had to call the neonatologist to come check on him. They now must check the bleeding every five minutes to be sure it's slowing, which of course causes him more pain. At this point I'm close to becoming unglued. Good thing I was so tired I couldn't put up much of a fight, because it wouldn't have done either of us much good at that point. Parker had some Tylenol which helped him sleep. I felt like I needed a valium. The bleeding did begin to slow, so I guess he will be fine. As for me, I got to feel all kinds of Mommy guilt. Tomorrow has got to be better, right?

Monday, April 13, 2009

Rock Star


What a difference a day makes! Parker is doing so well today. His Dad came back to the hospital for his 1:00 a.m. feeding, (yes, my husband is already an amazing father, he's been doing this almost every night since Parker was born)and he took 40 cc's (1.35 ozs.) for him. This is fantastic! He also weighed in last night at
6 lbs., 14 oz.! Our goal was birthweight by today which was 6 lbs., 11 ozs., so he blew that goal out of the water by gaining 4 ozs in one day! Go Parker!

This morning he ate a personal best of 54 cc's (1.83 ozs.) from the bottle, so we hope we're turning a corner. He's definitely more alert and awake, which helps when he eats. His actual due date was today, so maybe now he feels fully baked. :)

Sunday, April 12, 2009

Bath Time!


We got to help the nurse give Parker a bath last night - he loves it! I have the best baby, he hardly ever cries unless he is hungry or has a dirty diaper. I just hope he stays that way when he gets home!

He also gained another ounce last night bringing him to 6 lbs., 10 oz., just one ounce away from his birth weight. His goal was to get there by tomorrow, so we are right on schedule! Yea Parker!

Also, Parker's genetic testing came back yesterday and everything looked normal, so it appears that Pierre Robin it is, and not a genetic problem. This was also quite a relief.

Enjoy the photos!






Friday, April 10, 2009

My Baby Does Not Suck!

As a matter of fact, he sucks so little they won't let him leave the hospital. That's right - he's still in the hospital.

After Parker was born on Monday afternoon, we were moved to my room at around 6:00 that evening. They took Parker to the nursery to check him in. We ate some dinner and waited for him to come back. My family left and they brought Parker back to my room so I could try to feed him. When I tried to get him to nurse, he had a really hard time latching on and sounded very conjested. Brian and I suctioned out his mouth a couple of times and just got clear fluid, so we figured it was just left over amniotic fluid or something. After a few minutes when the conjestion didn't improve, we decided to call the nurse to take him back to the nursery to be checked again.

After what seemed like half of forever, our nurse came back into the room and announced that the neonatologist had determined that Parker had a cleft palate and was going to the "Special Care" Nursery, which is the NICU (his lip is fine, which is why no one saw it earlier). I couldn't believe what I was hearing. My whole body went numb. Then the tears started. I was so scared, angry, confused. How did this happen? Was it my fault? What would this mean for his future? I turned the lights out and cried. Brian remained calm, and tried to console me as best he could, but I was very upset. I know he was too, but he kept it together for me.

It wasn't until around 11:30 p.m. that we actually saw the doctor that admitted Parker to the NICU. He explained Parker's condition and what we may be looking at for the future and some information about the Special Care Nursery. I have to admit I remember little of what he said, I was so shell-shocked and upset. I do remember the doctor saying these babies have a really hard time eating/feeding because part of the roof of the mouth is missing, creating problems forming a good suction on the breast or bottle. In retrospect, that was quite an understatement.

On Tuesday evening, Dr. Burstein from Atlanta Plastics came to see Parker. Dr. Burstein is affiliated with Scottish Rite's Cranio-Facial Center, and does the majority of their surgeries. He has an excellent reputation and is considered to be the best for this type of surgery in the southeast, so at least in dealing with this problem we are in the right place, thankfully. He examined Parker and thought he looked really strong. When Dr. Burstein checked Parker's mouth, he pushed his tongue against the tongue depressor and yelled. The doctor said this was a good sign, because babies with clefts tend to have "floppy" tongues which can obstruct their airway. Parker's tongue is not floppy, so luckily he doesn't have this problem. Dr. Burstein talked to us for a while and explained what he thought happened with Parker and his cleft. He believes Parker has what is called "Pierre Robin" Sequence (looks like the bird, but is pronounced "roban"). In Pierre Robin, somewhere between six and twelve weeks gestation when the facial bones are forming, the baby tucks the chin to the chest and stays there, possibly getting the chin stuck between the collarbones. This pushes the chin back and the tongue up into the roof of the mouth, blocking the palate from being able to close together. Parker's cleft is the exact size and shape of his tongue. They will still do genetic testing to rule out a genetic problem, but the doctor thinks this is likely what happened with Parker. He said in some babies they need to do surgery when they are about a week old (!) called a mandibular distraction to lengthen the jaw to help with breathing. Luckily, he did not believe Parker needs this surgery and prefers to see how his jaw grows on its own. He would like Parker to be followed at Scottish Rite's Cranio-Facial Center and their feeding clinic, then he would have surgery to repair his cleft at around 9 months old. He said after surgery most babies make a full recovery and needs very little follow-up after that. I felt a lot better after talking to Dr. Burstein.

We started out in the 2nd floor NICU, where we were from Monday night the 30th through Saturday night, then we were moved to the 7th floor NICU on Saturday night, where we have been ever since. The 7th floor NICU is a transitional unit where babies go that are not quite as critical and are on their way home. It is so much nicer upstairs! We're working with physical/occupational therapy every day until Parker figures out how to feed from the bottle. The special bottle he uses is called a "Haberman Feeder". It's a bottle that requires very little suction to get milk out, but he's still having a hard time with it. He needs to take in 50 cc's (1.69 oz) every three hours in order to gain weight, and right now he usually takes in around 20cc's and gets so tired he just poops out on us and goes to sleep. We also only have 30 minutes to feed him, then we have to stop because at that point he's probably expending more energy and burning more calories than what he is taking in. Wish I had that problem. I've also been working with the lactation nurses here at Northside to see if he will also be able to nurse some as well. In the meantime, I'm permanently tethered to a breast pump every. three. hours. Good times, people, good times.

The bottle feeding and nursing have both been very slow going, which is why we are still here. Right now, he tries to take a bottle two to four times per day, and the other feedings he gets through tube. He's never finished a whole bottle, and when he doesn't, the remainder of the bottle also gets fed by tube. The important thing is that he is gaining weight. He was 6 lbs., 11 oz. at birth, then lost a few ounces and weighed 6 lbs, 5 oz. As of last night he weighed 6 lbs., 9 oz., so we're almost back to birth weight. They want him back there by the time he's two weeks old, so he has two more days to gain two more ounces-come on buddy, you can do it!

The doctor that has been seeing him here in the hospital has started to talk about sending us home with tube feedings, which terrifies me because the feeding tube has to be changed every three days, and they expect us to do it. We watched the nurse do it last night, and I can tell you I want no part of it. This is something that I will probably have to leave up to his Dad.

Well, I think that should bring everyone up to date - now I'll try to post a little update every day so everyone knows how he's doing as well as a few photos here and there. Please pray for Parker's feedings and growth, for Mommy and Daddy's sanity, and that he can make it home with us soon. I have now been in this hospital for 13 days, and most days I'm here for 10-12 hours. I just can't bear to leave him for much longer than going home at night to sleep, and even that's hard for me to do.

We're going to be able to give him a bath tonight, which I'm really excited about. Hopefully I'll have some photos to post later.
Lilypie Kids Birthday tickers
Lilypie Second Birthday tickers