The Story Continues

We sat in the post partum room and waited for the Neonatologist to come in.  The NICU nurses had told us that it would be about an hour, but I think it ended up being closer to two. Slowly our families started to trickle into our room.  When the doctor finally came in he was greeted by a huge group of people who were concerned about our little guy.  This doctor didn't exactly have the best bedside manner.
He was one of THOSE guys.

You know the ones.

The guy who's been divorced a few times.
The one who's got a HUGE ego.
The one who is NEVER wrong.
The one who is a SUPERIOR being.
I could go on, but you get the picture.

I remember that the room seemed really dark, and I wanted somebody to turn on a light but didn't want to interrupt him.  He was drinking a Diet Pepsi out of a bottle the entire conversation. He'd pause in between sentences to take a swig, and I really wanted to knock it out of his hand and yell at him to tell me what's going on with my baby.

He started by saying that he believed that Carter had come too early.  He thought that he looked to be 36 weeks not almost 39 weeks.  I told him that I knew that my dates were not wrong, but he didn't really care what I had to say.  I don't think that he took into consideration how small Carter's umbilical cord was either. Those things were taken into consideration later. He told us that so far they had found that Carter had an incomplete cleft lip, and a cleft soft and hard palate. He had also noticed that Carter seemed to have some paralysis above his right eye. They had done an echo on his heart and it looked fine.  He then said "you know, I should probably check his Kidneys too... we'll do that in the morning...it's really not a priority".  This is where Michael kind of lost his cool (yay for Daddy), and asked if we should have Carter transferred to the local children's hospital.  This was the point where the doctor lost some of his attitude and told us that we could if we wanted, but he thought it was best to keep Carter as close to home as possible since he was stable. He had paged an ENT and was sending Carter's Chromosomes off to the lab for testing. As he was leaving, he told me that he thought that the medication I was on for my Molar Pregnancy could have caused all of this.
Wonderful.
I let it sink in.
This was all my fault.
But wait! I hadn't taken any medication for my Molar pregnancy. What was he talking about?! He said "you were never on nameofmedicationthatIcan'tpronounce", and I said "No." He replied "Huh. Well, you can come and see him as soon as the epidural wears off."  Thanks, Jacka**

That moment couldn't have come fast enough.  The minute I could get out of the bed, we were out of there and in the NICU. They let us hold him even though he was on a vent. I kind of hate this picture of me holding him because I have a scared look on my face, and at that moment I actually felt relief that I could hold my baby boy.

Notice Carter's arms.  He held them this way for the first two months.  In fact, he had to wear splints to help hold his wrists straight.  They broke some of the NICU rules that night and let Michael's sister and our mom's back all at once to visit the little guy. He looked so tiny in his isolette.

Needless to say, that night I didn't sleep at all.  I kept praying to God and asking him if he was sure that I could handle this. I was really nervous for the next day because Carter was having a kidney ultrasound and a hearing test. Michael had gone home to be with our other kids. I have no idea how that conversation went down with the older two, but when I talked to Jovie on the phone she told me that Carter had a sick ear and a sick lip, but that he was SO cute. They were both so accepting of Carter from the very beginning...even though they didn't get to even see him until he was 10 weeks old.

The Big Day

Two days after that appointment I started having contractions.  They went on throughout the night and started to get stronger and closer together.  I was about 4 days shy of being 39 weeks at that point.  I finally called Labor and Delivery the next morning and told them what was going on.  They told me to come on in.  We made our short journey there and found out that I hadn't changed all that much.  I was defnitely having contractions, but I just wasn't making any progress.  They kept me there for a few hours to monitor me and see if I changed.  My doc came in to check me and since I still hadn't made any progress he decided to send me home.  He had another very serious delivery going on that day (who happened to be a friend of ours), and didn't feel comfortable inducing me since it was against hospital policy to induce anyone under 39 weeks without a valid reason.  I went home and stayed very miserable for the next two days.

When we went in to see him the next day, I still hadn't progressed much.  The doctor decided that I had been put through enough and scheduled an induction for the next morning.  We were so relieved that we would finally meet our baby boy.

The next day I was induced with Pitocin.  The labor progressed without any troubles except at one very brief moment when Carter's heart rate dropped.  After they moved me onto my side he bounced right back.  I was at an 8 when the nurse called the doctor, and about 10 minutes later I was fully dilated.  My babies always come really fast and with minimal pushing, so after the doc arrived I pushed maybe twice before Carter was here.  The next parts are all a blur to me.  In fact, it was very hard for me to even think about it for about 3-4 months.  It was probably the most traumatic thing that I have been through, but in retrospect it could have been a lot worse.  It just seemed like it at the moment.  I had a friend there who videotaped a lot, but I still haven't been able to bring myself to watch it.

I remember Carter's head appearing, and Michael saying "Oh, he's really little".  I remember that striking me funny because he was so close to term.  The next thought that came to my mind was that maybe my dates had been off in the pregnancy and we shouldn't have induced him.  It was all my fault for going to the hospital when my contractions had gotten so intense. Then I remember the doctor looking at me over the top of his glasses and saying "I'm sorry, but your baby has a cleft lip".  I remember thinking, well that's not such a big deal.  Then I remember the doctor's face turning white and him telling the nurse very sternly to call the NICU. Carter was delivered and taken to the table to be checked out.  I don't remember much except that I never really heard him cry.  My husband came over a few minutes later to tell me that he was missing his ear. For a brief moment, that seemed like a big deal, but a few minutes later when they started doing chest compressions none of those things mattered.  They got him pretty much stable, let me kiss his forehead, and he was gone to the NICU.

We all sat silently in the delivery room.  Everyone just seemed to be stunned and numb. My Mom and Mother In Law left the room to call our families to tell them what was going on. I know that they were out there crying, but didn't want us to see. I just felt so helpless.  This wasn't how it was supposed to be.  I should be holding my little guy right now, not wondering if he was breathing or not. The next thought that I had was that we needed to get our priest there to baptize him. My Sister In Law made the phone call, and he was there before we had even been transferred to the post partum wing.  The nurse came in periodically to give us updates on Carter, but they really didn't know much.  Only that he was stable, and they were still working on him. Now, I want to make it clear that for the first two or three weeks, I had those thoughts of why us, and I wish my baby was healthy.  But I can honestly say that I do not feel that way AT ALL any more.  I know that Carter's a blessing to our family, and I'm so happy that God chose us to be his family. I actually feel like we are some of the lucky ones because we didn't know before he was born.  We would have stressed so much!  I also feel like Carter's diagnosis was a lot easier to accept because this was how he was built.  There is no reason to stress or pray for a cure because this is just who he is. It would be different had he been healthy and an injury or disease created problems for him.  God couldn't have given us a more perfect baby.

On the way to Post Partum, they wheeled my bed through the NICU to see him.  Here's the picture that we took while we were in there. Seriously, isn't he precious?!

He's grown so much since then.  In fact, our Occupational Therapist came on Monday and said that he's never seen Carter look so good, or move around so much.  We're really concentrating on rolling from tummy to back and holding his head up on his tummy.  Carter's defnitely getting a lot stronger, it just takes time.  He was supposed to have a routine Kidney Ultrasound this week, but we had to reschedule. That's fine by me, I'm still trying to get my kids back on the school schedule.

Thank You

Carter's still doing wonderfully. He really seems to have adjusted to life in the McMerrick household. I think that Daddy buying him a crib toy just like the one he had in the NICU has helped a lot as well (I knew that we'd end up with those monkeys somehow). Life has definitely been hectic, but it's getting easier as we all get used to it. We wanted to just say thank you to everyone who's supported us through all of this. Thank you to those who have helped us out during this last week. We really appreciate the love and support you have given, and the exellent dinners ;) . Also, thank you to our railroad family for the adorable train bank and perfect card and note for Carter. He loves it!

10 Weeks 1 Day Old

Carter's still doing great at home! He did decide to pull an all-nighter last night... he wasn't fussy, but didn't want to sleep. He was fine as long as I was holding him...go figure :) We can definitely tell that he is much happier here, and loves all of his new toys which would include his brother and sister. We're starting to get into a routine, and I think that by the end of the week we'll have it all under control. Thank goodness Michael is off from work until next Monday. There's NO WAY I could have done all of this without him. It's hard enough bringing a new baby home, but add monitors, oxygen, g tube stuff on top of that and it gets really overwhelming. I think that we finally figured out what Carter's problem has been with the bottle, so I'm hoping that we're on the right track with that now. He took the most that he's ever taken in one feeding today with 20 cc's. He did that really fast too, and that's close to one third of a whole feeding. Yay Carter! I've started to make his follow-up appts, and most of them are in two weeks. We're going to be traveling back to the hospital quite often for awhile.

Picnic Day

We finally went on our picnic! It was a marvelous day. Carter handled the car ride home perfectly, and the kids were thrilled to finally meet him. He's been wonderful all day, and it's amazing to see how much better he's doing now that he's home. I expected subtle changes, and am pleasantly surprised by how much he's improved in such a short period of time. The updates will probably come a little less frequently now that we've got our hands full, but we'll be sure to update when we can. Thanks to everyone who's helped us through this tough time. We couldn't have done it without all of you.

Tomorrow

Hopefully there won't be any rain at the picnic tomorrow :)

That's really all I have to say.

Getting Ready

We're getting ready for picnic day. It's happening very very soon. Carter had an echo today, and had to be sedated for it. Luckily, he had no negative reaction to the drug that they gave him. We also got all of the home care equipment ordered, and will be going to the hospital tomorrow to learn how to use it. All that will be left is the mountain of paperwork, and saying goodbye to the support system we've had for 10 weeks.

He's Still There

Ooooops. I guess that that I made the post sound like Carter went on a picnic yesterday by saying the ENT wanted to see him in two weeks. He's still up at the hospital, but is anticipating his picnic on Thursday or Friday. We think that Thursday looks like a beautiful day for an outing, but we'll have to wait and see what the doctors think.

Meetings

Today was quite the busy day for everyone. I met with Carter's new developmentalist, and I must say that I was very impressed with her. She seemed very optimistic about what Carter can do, and enthusiastic about getting started. She will be the one who oversees his developmental therapy. She said that an occupational therapist will come to our home 1-2 times a month, a hearing specialist will come once a month, and a vision specialist once a month. Carter doesn't seem to have anything wrong with his vision, but he can qualify for services just because he can't close that eye very well. We'll take all of the help that we can get.

Carter's ENT came to see him today and decided that he didn't need the sleep apnea test. The only time that he's had problem with apnea is when he was on sedation, so they feel there's no reason for it. They want to see Carter back in two weeks, and then he'll have his lip surgery done two weeks after that. He'll get the tube put in his ear at that time as well.

God Is Good!!!

Thank you, thank you, thank you God for giving our little boy hearing! Today was a HUGE win for Carter. We got the results of his hearing test, and he has hearing in his left ear. The audiologist says that he can hear a typical conversation, but nothing quieter. She tested his ear drum for fluid, and says that he has a lot of it. That means that when he gets his ear tubes put in (to help keep the fluid drained), it's very possible that he'll only have a minor hearing loss. His right ear doesn't show any hearing, but it's possible that the fluid could have something to do with that as well. One is much better than none, so we are beyond grateful and thrilled at the same time.

He's still working toward the picnic, and is down to minimal settings on his oxygen.

Two Posts

Here's the update from yesterday, and I'll post one for today later tonight.

I got home so late last night that I completely forgot about the blog. Ooops! Carter had a good day yesterday. They are getting all of his tests and stuff done before the big day comes. He got his immunizations, another echo, and started his hearing test. We haven't heard the official results, but the nurse said that he didn't "completely pass" on his left ear and they haven't tested the right ear yet. We'll take "completely pass" as a good sign that he at least has some hearing on that side. Anything is better than nothing in our opinion. They didn't do the right ear because they needed some different equipment for it. Carter also passed off his car seat test, so now we just need to wait for him to get his feedings condensed before he takes a journey out of there.

Coming Along

Carter's still plugging along on his journey to the picnic. He had a very good day today, and got weaned down to the oxygen level that he'll be using when he gets out of that place. He's still not quite up to full feeds, but probably will be tomorrow. For some reason he was extra cute today too!

Almost 7 lbs.

Carter is almost 7 lbs. now. He's at 6 lbs. 15 oz. I can't believe that he's gained 2 lbs already! He had a pretty good day although it started off rocky when he wasn't digesting his food. Once he got some through his system, he was totally fine and has been doing well the rest of the day. They may try to increase his feed again tomorrow.

8 Weeks 1 Day

Carter is such a rock star that he actually got off of the ventilator last night. It was a lot quicker than we were expecting, and he's doing just fine back on the nasal canula. We went to see him today, and he was quite cranky. Who wouldn't be? He hadn't eaten since yesterday, and his IV went bad so they had to poke him a few times to start a new one. Since then he's started feeds again, but they are only at a quarter of the volume. Hopefully he can work his way up to full feeds again soon. We're very proud of our little guy!

Surgery

Carter had his G Tube placed today. We got there just as they were about to give him medication to sedate him while they put him back on the vent. Unfortunately, he had a bad reaction to it, and stopped breathing while he was in Michael's arms. It was pretty scary, but luckily the respiratory team was standing right there when it happened, so they got him breathing again without any problems. His surgery went really well.

Right now Carter has this foley catheter that we will administer feedings to. It looks a little worse than it eventually will because it has a surgical dressing on it.

Here is what his g button will look like in six weeks when they put it in. We'll have a tube that we hook up to it to give him his feeds. His is actually more to his left side. The diagram in the right corner shows what it looks like from a side view. We're hoping that he won't have it for very long.

G Tube

Well, there has finally been a decision made. Carter is having a G Tube placed tomorrow. This is a feeding tube that is inserted into the stomach through a small incision in his side. A little tube will come out of it, and we'll administer his feedings through that. The doctors feel that this will get him home a lot quicker than waiting for him to be ready to come home on an NG tube. There is a long list of reasons why they feel that this would be better, and although we're a little disappointed it's good to get the ball rolling on this. It probably really is better for Carter than the NG tube would have been. He will still be able to bottle feed, and as soon as he can take all of his feedings by mouth, he will have it taken out. The doctors told us to expect his picnic sometime next week IF everything goes smoothly.

26 CCs

Carter had another AMAZING day. First, he took 12 cc's out of a bottle for his therapist this morning. That's the most he's ever taken for her, so she was quite proud. I went up tonight and he took another 14 for me. Hopefully he can start to build a little more stamina to take more at each feeding.

Michael talked to the nurse practitioner today, and she told us that they still think that Carter has acid reflux even though the test didn't show it. They are going to continue to treat him for it, and see what happens. Right now it sounds like they are leaning toward sending him home with an NG tube which is a tube that goes into his nose and down into his stomach. Michael and I will have to learn how to place it in case Carter pulls it out. No problem... if it means that Carter can come home then we can handle it. The NP also told us that the thing that we need to concentrate on most is getting Carter to keep improving on the bottle. He can come home as soon as he has shown that he can take a lot of his food from it.

He did another amazing thing today. Tonight I was holding him in a sitting position to practice his head control, and he actually held his head up by himself for quite a long time. He did it three separate times. If he can keep improving on that, it will mean that he's not too far behind on that milestone. Carter says NO to developmental delay. I'm telling you... this kid's amazing!

What?!?

So, Carter had his upper GI today and what do you know... It didn't show any acid reflux. We are beyond perplexed on what is going on with this little guy. He seriously shows all of the signs of reflux, and nobody seems to know what else it could be. We have no idea what this all means, or where we will be going from here. Hopefully we can get some answers tomorrow. The good news is that Carter's therapist was very impressed with how much he's been taking on his bottle feeds, so she upped them to four times a day as long as we, she, or one of his primary nurses does it. I still think we're getting closer to going on a picnic, but I must admit that I feel a little frustrated today.

Mikey had a big day today too. He started T-Ball which I think he really liked, and he had his preschool program. I'm going to post pictures tomorrow.

Amazing

That is the one of the words I use to describe little Carter. I swear that I fall more in love with him every single day. He might have a lot of challenges ahead of him, but I just know that he's going to be simply amazing. He was certainly amazing today when he took another 15 cc's from a bottle. I really think that he could have taken more, but he had a serious diaper issue going on. His upper GI got postponed until tomorrow, so we need to keep our fingers crossed for good news. I think that Carter's almost to his finish line in the NICU... he just needs to keep up the amazing work.

On another note, Carter has a little friend named Gavin. Gavin was born a couple of days before Carter, and his daddy has been a friend of mine for 14 years (yes Chris, it's been that long). They were in the NICU together at the hospital they were both born at, and Gavin actually got to go home a couple of weeks ago. Unfortunately, he's now very sick with pneumonia, and is at the children's hospital with Carter. Their stories have been intertwining since the week they were born. Please keep little Gavin and his family in your prayers. He's a tough little kid, and is going to be just fine, but he could certainly use some prayers to help him through it.

He's a stud

Carter downed his entire bottle today! We started with 10 cc's, and the nurse added another 15 which he took 5 of. He started out not too interested in eating, but then took off like a champ. It seemed like he's really getting the hang of it. His biggest enemy right now is the acid reflux, so he's going to have an upper GI done tomorrow to see what's going on. This will give us some answers on what we can do to help him with it, and also to decide what kind of feeding tube Carter will need. If he can keep downing his bottles, he won't even need one! ;)