Good and Bad

We drove back to Mobile on Friday to attend a birthday/anniversary/graduation party for Chris's brother and parents. Sam did great on the drive but got a little too much stimulation too late in the night once we got in town and it took us a while to get him to sleep. He got to see all of his cousins on Saturday at the party, including his cousin Noah (in the photo) who is just two months older. Good times were had by all, and Sam did great with all the new faces.

Sadly, my Mother's father (Daniel Scully) passed away early early Saturday morning. He had been sick for some time, and while this is a sad event, it also brings some peace to our family knowing he is no longer in pain. The funeral will be Wednesday at 10am at St. Mary's in Mobile. I don't have a ton of vacation saved up at work because of Sam's surgery, so we drove back to Macon tonight and will drive back to Mobile for Wednesday to attend the service. Since the drive back and forth in such a short amount of time would be too hard on Sam, we left him with my parents. They were thrilled, clearly. I'm missing him a bit, but we'll see him again in 48 hours! It will be our third trip to Mobile in 12 days. I hate the reason for our 3rd visit, but I'm excited to see some family that we haven't seen in a while, and I'm excited for family to meet Sam.

I'll post more photos when I get my camera back (I left it in Mobile so Mom could take photos of Sam with our family as they arrive in Mobile).

~Kathy

Much Needed Update

It's been a few weeks...time for an update!

Sam is doing fantastic! He had a cardiologist appointment last week. He weighs 16lbs 1oz, and is 26.5inches long. Dr. Cardis ran an EKG and an Echo. He said everything looked great and was functioning as best as could be hoped. He took us off the Lasix entirely (finally), but we will stay on the Lisinopril and Asprin indefinitely. He is going to start spreading out our appointments (the next will be in 2 months). He thinks we will make it a long time before we have to do the Fontan surgery. The only thing I hated was he said, "We want to give you as long as we can with him before that surgery." I don't know...draw your own conclusions for the many ways you can take that statement. But on the whole, Sam's heart is doing wonderful.

Sam's cough, however, will NOT go away. He has been coughing for almost 5 weeks now. No fever, not really even a runny nose, but he coughs and coughs and coughs all day and night. Especially at night. He will spend literally hours coughing ever 2 or 3 minutes, like he can't really clear his throat. Interestingly, this rarely actually wakes him up. It DOES wake Chris and I up...and makes sleeping really difficult for us. The doctors office originally told us there was nothing they could do for him if he didn't have a fever. You can't give kids under 4 years old ANY cough medicine anymore. But I'm getting super sick of this and plan on calling again tomorrow.

We drove down to Mobile last weekend so that I could attend a Bachelorette party for one of my bridesmaids. I had far too much alcohol but hanging with the girls was wonderful. Sam spent his weekend between grandmothers' houses. He was pretty happy the whole time, and didn't seem bothered by all the 'new' faces and people handing him around. He did great on the drive TO Mobile, but he was a total butt on the drive home. My sister came back to Macon with us, so she got to handle the crying baby in the back seat for a 7 hour drive that should have only taken 5.5 hours.

We are getting ready to do it all again this upcoming weekend. We are going BACK to Mobile for a graduation/anniversary party at Chris's parents house. Hopefully Sam will behave! Enjoy the new photos!

~Kathy

Sam's First Party and Mommy's First Mommy's Day

Yesterday we went to Sam's first birthday party. Our neighbors' beautiful little girl turned 3. They had a big party in their back yard, complete with McDonalds burgers and Chick-fil-a nuggets (kid and daddy food essentials). There were a ton of kids there, and the birthday girl got WAY more presents than I ever got on any one birthday! She was clearly having a blast! Sam had a good time too. He met a bunch of new faces, including the birthday girl's 3 month old adorable cousin! My clinical instructor from one of my internships happened to be there (his daughter was an invitee). It was really nice to catch up with him and hear about his new clinic.

Today was Mother's Day. Chris kindly got up with the baby in the middle of the night, and then again when he woke up at 7am. While I slept, Chris and Sam made breakfast for me. We all went shopping for new clothes. Sam ended up with the most swag, naturally. We went to church. Sam has learned that he has a voice...and he decided to use it....ALLLL during mass. The obstetrician who delivered Sam sat right in front of us. We spoke after, and she was so surprised at how chubby Sam is getting! We went grocery shopping after church and spoke with our super sweet pharmacist, who is expecting a little girl in September. She was surprised, too, at Sam's growth. He's just thriving...what can I say!

It was a good weekend. I hate that it's over already. I hope all the momma's had a good Mother's Day. I have so many friends who are new mommies this year...I hope they especially had a good one! Say a special prayer for new mommy Christina (Catherine Cannon Arensberg's big sis) who spent her first Mother's Day in the NICU next to her first baby. Mom's go through a lot for sure, and she has already been through more than any mom I know.

~Kathy

First Fever

Sam had his first fever today. I'm actually pretty impressed we went 5 months without a fever. And I'm pretty sure this one isn't because he's sick. He got his 4 month vaccines yesterday. (We had to skip the 4 month vaccines at 4 months because he was fresh out of surgery...we are now trying to make up for lost time!) He woke up warm, but not feverish this morning. He was, however, super cranky and really didn't want to wake up at all. I brought him in to school anyway since he didn't have a fever. Naturally, school called an hour later saying he had a 100.2. Their rule is when you hit 101 you have to take your baby home. They were just giving me a heads up that his temp was rising and that I might have to pick him up.

SOOOO by lunch I had to pick him up! But now that he is home, had a warm bottle and a dose of Tylenol, his fever is reducing. He is napping now, and I feel pretty confident he'll feel fine by tonight. He didn't react this way to the first vaccines, but apparently it's really common for kids to get a little feverish. Poor baby...

On a more positive note, Sam is now sleeping in his own room! Now that I don't feel like I have to keep a close eye on him due to low oxygen, he has been moved to his crib in his nursery at night. He sleeps great up there, up to 11 hours at a time on occasions! And while it is nice to have our room back to ourselves, I can't help but wake up and stare at the baby monitor sometimes in anxious paranoia, just waiting for a little cry to come over the speaker.

These photos are from the weekend. Check out that battle wound on his chest! The girls are gunna go crazy over that scar when he's older!

~Kathy

So Proud!

I just had to drop a quick note and say that Sam just fell asleep completely by himself, without a peep! You just don't know how proud we are. Just weeks ago (presurgery) it would take hours of Chris and I walking and rocking Sam to get him to go to sleep. Since surgery, it hasn't taken longer than about 15 minutes for him to put himself sleep once I lay him in bed. And tonight he was totally awake, I laid him down in bed, tucked him in, and walked out....and straight to sleep he went without a single noise. I love him.

The photo is from today. Chris, his mom, and I planted some new flowers and such in our front flower beds. Sam hung out in his bouncer and watched. One of our great neighbors came by and talked for a bit. Their beautiful little girl (who is almost three) apparently prays for Sam every night! AND they told us they are expecting baby number two!! We are super happy about that...Chris is hoping it's a boy so Sam has a playmate!

~Kathy

Doctor's Visit

We had a visit with Sam's cardiologist today. Sam did great this time, and stayed still, quiet, and smiley through the whole thing! Everything looked great! The cardiologist is decreasing the lasix a bit, but the blood pressure medicine stays. In fact, the blood pressure medicine is apparently a forever thing. He also started us on aspirin, which will also be a forever thing. This kind of bothers me. Not that it's difficult to give him medicine. I just hate the thought of putting medicine in his tiny body and him being on any medicine long term. I don't know...I guess whatever keeps him happy and healthy is fine.

Chris's mom is in town so she got to come. The cardiologist was great and spent a lot of time talking to us and filling us in on the plan of action for Sam. He said that even though the surgeon said we would have Sam's next surgery at age 2, the reality is that we will wait as long as we can. He said that could be anywhere between age 2 and 6. That's great news to us! The bigger, the stronger, the better!

He also talked more about long term stuff. Once again there really isn't a lot of long term data for the outcome and side effects of these surgeries. Once Sam has the second surgery and officially has a "Fontan Circulation" system, he will be at risk for side effects involving random organs and other such things. Dr. Cardis said that there is a wide belief that all kids with "Fontan Circulations" end up with heart transplants at some point. Scary. But we knew this coming in. It's why we saved his cord blood. We're placing our bets on some pretty amazing stem cell research (NOT embryonic stem cells...cord blood is stem cells too) and technology to save his life some day...and I have a feeling it will. If we can make it another 20 years before we need a transplant, and current data says we have a good chance of that, then there is no telling what new technology will be available.

All in all, I am slowly starting to feel like Sam's life will be longer than we were originally prepared for by our doctors. And not just long, but full AND meaningful. You will never know just how warm and uplifting that realization has been for us.

~Kathy

Surgeon's Follow-up

We drove to Atlanta today for the follow-up appointment with the surgeon. Sam got chest xrays (which he didn't like), and then got a quick look over by the PA and head nurse. They took off his steristrips and took out his stitches (which he REALLY didn't like). His incision looks soooo clean! There is barely any scab left, and the scar is so thin and smooth feeling. The surgeon came in and looked at Sam. He said he looks fantastic. The surgeon estimates that Sam's next surgery will be somewhere between 18 and 24 months of age. It certainly should not be an 'emergency' situation like this one was, though! Until then, our only instructions from the surgeon was to "treat him like a normal kid!"

We have been kind of impressed with Sam's development over the last two weeks since the surgery. I don't know if it is BECAUSE of the surgery and subsequent higher oxygen levels. Sam is using his hands and arms SOOOO much more. He sleeps a million times better at night...he is getting 8-9 hours at a time now! Actually getting him to bed has become a breeze. After his last bottle, I let him get to the drowsy stage and then just lay him in his bed...he does the rest. He is far more alert, and smiles at everything. He is just a much happier baby all around. Don't get me wrong, he still has his cranky butt moments. But we kind of feel like he is the baby that we always imagined. I don't know if low oxygen pre-surgery had anything to do with it, but it's hard not to blame it on that a little.

The bunny ears are from Easter (clearly). He wasn't too happy with them on his head but I HAD to get a photo of him with bunny ears!!

~Kathy