Mardi Gras, Baptism, and Day Care

Sam has officially had a busy week. Chris dropped me and Sam off with my parents at the half way point between Mobile and Macon so that I could spend a full week with him in Mobile with family and friends. Chris came down later in the week so that we could go to a few Mardi Gras balls in Mobile.

Sam was pretty good for the 6 hour car ride, and we stopped often for him. He got to visit McGill with my mom, and met plenty of friends of ours from our old church and school. He finally met the rest of Chris's family, including all 6 of his cousins. He was generally very happy, and even slept through the night for the first time!!

We had a joint baptism with Sam's cousin Noah at St. Dominic's on Saturday. Sam has already been baptized but we completed the ceremony for him (godparent's and such). It was really very nice and I feel like we got to have that 'experience' that we didn't get to have at the hospital. Sam even got a nice new christening outfit!

Today I returned to work (booo). Which meant Sam had his first day at the Day Care. I was all set to bring him but it took WAY longer to get ready this morning than I thought it would, and Chris has to take him so that I wouldn't be late for work. I did go visit at lunch though, and he was doing great. Chris and I were a little shaken up. It's hard to leave your baby with stranger. But Sam had a great day there, and they were all impressed by his laid back attitude. He gave us big smiles when we picked him up. He even learned a few things at 'school'. All of the sudden, he has now discovered his hand, he can lift his head up MUCH better, AND he is supporting his weight with his legs. All of those were things I was worried he was behind with doing! I think it may still take a few days/weeks but I foresee us being much more comfortable with our new routine here in no time.

I'll post some photos later (they are downstairs on our jump drive, and I'm too lazy to go get it!). But I would like to close by saying that through out this week, I talked to many many friends and strangers, all of whom read this blog. I had no clue that MOST of them even knew we had a blog, let alone actually read it! Not only that, but I heard from them over and over that they pray for Sam often. I want you all to know that this really touched me and Chris and I can never express how thankful we are for the support and prayers. Please know that it HAS made a difference in Sam's condition...our doctors never expected him to be this healthy. Please keep the prayers coming for him and know that we are praying for you. Also know that I can't wait for the day when he understand enough to learn how many people cared for him when they didn't even know him, and he gets to say a prayer for you, too.

~Kathy

Things Sam Does

I belong to an online community of parents with kids with Sam's defect and a similar defect affecting the left side of the heart. I speak occasionally to a woman in the group who lost her daughter to an unexpected lung infection post surgery. She journal-ed a 'baby book' for her daughter from the day she was born until the day she died. She said she reads that journal often and is sad to see that many times she wrote more about technical medical data and health updates about her daughter instead of the important things like who her daughter was as a person. I noticed quickly that I have done the same thing too often. So here is a list of fabulous things Sam does that make us smile:

1. Sam can burp and fart louder than anyone I know. The first time I heard him burp was in the NICU about half an ounce into his first bottle. I sat him up to burp him and I didn't even sit him up the whole way before he burped so loud it echoed in the room. Chris love to point out how Sam can fart louder than him, which makes him feel like less of a man. Sam will fart when he coughs, sneezes, hiccups...nothing makes us laugh harder. Unless he does this when it's peacefully quiet in church...

2. Sam has recently learned to smile. And these aren't gas bubble smiles. He really loves it when you make noises with your tongue and lips right in front of his face. I noticed he even seems to imitate the same motion with his own tongue. He has even ALMOST laughed. Chris is the only one who has accomplished this with Sam so far though.

3. Most of the time, Sam wakes up from naps or from night time sleep by grunting and crying. There is one exception to this. I have noticed that the first time he wakes up after the sun rises, he will wake up peacefully and just hang out, talking to himself quietly, until we wake up, too. There is nothing cuter than opening my eyes and seeing him laying there wide awake and cooing softly, because as soon as he sees me coming for him he smiles.

4. Sam's poopy diapers are TREMENDOUS. I am constantly amazed by the poo such a little man can produce. And he HATES his diaper changes. Really, he just hates being naked.

5. The only time he LIKES being naked is when he is in his bath tub. I never expected a baby to enjoy bath time. He cries until he gets into the water, and he cries when he gets out. But while he is in it he loves it. Chris holds him from going under, while I bath him. He is really content in that water, though, and I love that.

6. Sam's sneezes are HILARIOUS. He usually sneezes 3 or 4 times in a row, with the last sneeze being more of a failed sneeze. You know when you go to sneeze but it doesn't really happen? Well the same thing happens to him, except the failed sneeze comes out as the funniest little yelp. We LOVE when he sneezes.

7. Besides his smile, our favorite face that Sam makes is when he is asleep and stretches. He tilts his head back, and with his eyes closed he raises his eyebrows making a million wrinkles on his forehead, and then puckers his lips. It's such an old man face, and I love it.

8. When Sam gets fed his bottle, he usually spends the whole time looking at you eye to eye. At first, he used to look at me like he was pretty sure I had no idea what I was doing. And most of the time I was pretty sure he's right. But recently (probably as his eye site has gotten better), he takes to grinning at you while he eats. And today, he reached his hand up and touched my chin while he ate. Ah...be still, my heart!!

9. Sam much prefers to lay on Chris's chest than mine. Can't say I blame him...I'm a little more lumpy. But Chris can hold him on his chest and in two minutes Sam is sound asleep. This came in handy during Sam's colicky days.

I promise to include more of who Sam is, and who he is becoming in my updates. I don't want him or me to look back to only remember the medical side of his baby-hood.

~Kathy

Test Results

I went last Thursday and had Sam's blood test done. The cardiologist wanted to get a red blood cell count. If it was unusually high, that would mean Sam isn't getting enough oxygen (because of his heart defects) and his body is trying to compensate by making more red blood cells. If this was the case, then we would need supplemental oxygen (an O2 tank and nasal cannula) to help Sam get the O2 he needs.

Dr. Cardis called me today and told me that Sam's red blood cell count was high but not unusually high. He said it looked like what he would expect for a baby with about 80% oxygenation at all times (and Sam tends to run lower than that, so basically Sam's doing good). Bottom line: No supplemental O2! That's great news for us...I can't even imagine keeping a nasal cannula on a baby 24/7! We may come to needing the O2 as we get closer to surgery but at least we don't need it this far out. We are so thankful!

Check out Sam's naked baby photos Chris took last night pre-bath! We had just done some footprint art, so his feet are still painted white.

~Kathy

2 Month Check-ups

Sam had his 2 month check up with the pediatrician and cardiologist today.

We went to the pediatrician's first. He weighs 11lbs 3oz and is in the 25% for height, weight, and head circumference. He has been in the 25% since he was born so at least he is growing proportionately and the doctor said there is no need to be concerned. He got 4 shots and an oral vaccine. He wasn't too happy with that, and of course I had to hold him down so that was no fun for me either.

The cardiologist was second. Again, they had trouble finding a pulse oxygen reading on him. And, just like we experience on our home machine, his oxygen would read REALLY low (in the 50s) and then suddenly jump to 80. The doctor is worried that, even though Sam is not blue or breathing heavy, his oxygen may be chronically low. The danger is that this means low oxygen to his brain and body and could lead to developmental delays. He wants to run a blood test that will tell him how chronically low it has been. If it is too low, we will have to put Sam on an oxygen tank 24/7. This is troubling to me but we will do whatever we need to.

The cardiologist wants to see him for his next check up in one month. Sam will be three months old then, and the doctor thinks we will start getting ready for surgery at that visit. We will run another echocardiogram, and then schedule a heart cath in Atlanta. He and the surgeons in Atlanta will use those to determine a surgery date and also to determine exactly what will be done during surgery. The procedure they will do is an open heart surgery called the Bi-directional Glenn. We were hoping Sam would qualify for a different procedure, one that would have slightly better outcomes. But the doctor said Sam doesn't have quite the right type of defect for this to work out. We'll see...they have to do the heart cath first to know for sure.

Anyway, this first surgery will be done in Atlanta sometime between late April to early May. I was hoping to make it a little further along, but the doctor thinks its better to go ahead an do the surgery so that Sam can get higher oxygen saturation rates, which will help with his development like I stated earlier.

He okayed Sam for a trip to Mobile, and he okayed him for day care. We still have to be SUPER careful about him getting sick, so everyone get ready for me to request you wash your hands before holding him. I hate to be that way, but I also don't want to be the cause of any serious medical complication for Sam.

I'm a little stressed about having to prepare for this surgery. But we knew this day would come, and I am just happy that we were able to avoid surgery until now. I'll update when we get the results of the blood test.

~Kathy

Something's Working

It has been over a week since we started Sam on Prevacid and Nutramigen to help stop his 'colic.' At first it didn't seem to be working at all. The only thing that did change was that he was able to sleep for longer chunks of time at night, which I attribute to the Prevacid decreasing his reflux. But he still cried A LOT and was an absolute kill joy between 6pm and midnight. Following the advice of my sister-in-law and our neighbor, we bought a vibrating bouncy seat. The first night we had it, I was surprised to see that it actually did help. He seems soothed to some extent. It doesn't last forever, but he can sit in it for a while and at least give us some quiet time to eat! But he was still crying at night more than I think is normal.

So I found this stuff called Gripe Water. It's supposed to be a herbal supplement that soothes stomach discomfort and claims to also decrease hiccups (which Sam has in abundance). I tried it for the first time last night and we actually had a really nice, quiet night! I thought maybe it was just a coincidence, but we used it again tonight and had the same results!!! So, somewhere between the Prevacid, Nutramigen, vibrating bouncy seat, and Gripe Water, it appears we have taken Sam from unbearable at night to a sweet angel baby! (Knock on wood) AND as a bonus, Chris and I are getting much more sleep!

Let's hope it lasts!!

~Kathy

So Very Tired

Mr. Sam has decided that he not only rarely sleeps, he also enjoys screaming all afternoon/night. Let me explain...

Starting at about 3 weeks old, Sam started a bad habit of not falling asleep for good until midnight-2am consistently. Then he started staying awake longer, and longer, and LONGER during the day, but still wouldn't actually fall asleep until 12-2am. I mean, this kid has stayed TOTALLY awake from 6pm until 2am on multiple occasions, and this is AFTER having already been awake 90% of the day. THEN he started becoming fussy starting near sundown and lasting until 12-2am. He gets to the point where he won't stop fussing/crying unless you are walking with him. THEN he starting crying/screaming starting near sundown and lasting until 12-2am. When he is screaming, not even walking can console him.

I figured it was colic. Colic in itself is not fun. But recently, as this whole thing has slowly progressed, I decided he may have reflux. For one, when he spits up, he spits EVERYTHING up. He rarely dribbles...it's always ounces and ounces of fluid. After he spits up he seems IMMEDIATELY happier. Recently he has started whimpering while feeding, which makes me think it is hurting to eat. Also, he does not sleep long between feedings at night. I attribute this to it being painful to lay flat because of reflux.

Two days ago, Sam cried and screamed ALLLLLLL DAY. By midnight I thought I was going to go crazy. The doctor had a spot for us the next day, and agreed with me that it is probably a combination of colic and reflux. He gave us a prescription for Prevacid and he gave us a special formula to supplement his feedings with. He said it may take a couple of days to see any difference if there is going to be one. I sure freakin' hope there is going to be one!

~Kathy

Cardiologist's Report

We followed up with the cardiologist yesterday after our ER visit from earlier last week. I brought our O2 meter to show the cardiologist just how difficult it is to use. Not only could the nurse not get our meter to read a reasonable number, but neither of THEIR two 02 meters could get a good reading! But the Cardiologist said not to be as concerned with the o2 number and to look for other things like blue lips and blue gums.

After that, they ran an EKG and an echocardiogram. Both came out with wonderful results. The MD said the EKG looked nearly identical to the one they did right after he was born, which means that everything is staying very stable (no stretching or shrinking of any heart parts). With the echo, they saw that his pulmonary pressures looked great and also quite stable. The MD says he is nearly positive that based on the EKG and echo results, we will be able to skip any surgical intervention until the Glenn surgery (technically the second of the planned surgeries) which will happen between 3 and 6 months. All good news!

On another note, Sam is a beast. He weights 9.35lbs! obviously his heart is not affecting his appetite yet!

~Kathy