Sunday, June 24, 2012

Loving it

We have been in Nashville for a week now. It feels so good to be home and settled into a routine. William is doing great. He saw his home care nurse, pediatrician, and cardiologist in one week... Busy guy! He is gaining weight every day and finally hit 8 pounds on his one month birthday! He is still wearing his newborn clothes but I'm sure at this rate he will outgrow them quickly! Our home care nurse said if he gains weight well for three weeks she can discharge us to just our weekly card visits.

Cincinnati has already scheduled our pre-Glenn cath and we are waiting to hear from them to find out the date. Can't believe they are already planning his next surgery. I'm not looking forward to being back in the hospital, but the Glenn is a much less complex surgery, with a recovery period of about a week if there are no complications. Also, everyone says life is much better after the glenn, because we won't need to weigh him or check his Sats every day, and we should be able to lose the ng tube (if we haven't already). Life has been so wonderful here the past week with all the cuddling we have gotten in, it's hard to picture it being any better. I think mainly life will just be easier for him - his heart won't be working as hard.

Eating has been a "struggle". I put it in quotes because we focus on staying relaxed and positive about it, even though it isn't going the way we want. Struggle seems to imply crying and frustration and we don't have that. Will averages 15-30 ml a bottle, out of 70. The most he has taken is 40. We have a long way to go still. A positive for Jared and me is that he sleeps through the night (10pm-6am) and is awake a lot during the day.

I'm glad I haven't had much to update. Things are slow and easy here, just the way we want it!

Thursday, June 14, 2012

Goodbye for now, Cincinnati!

Will had his follow up at Children's today. I was very nervous about his weight gain, because if he wasn't where they wanted he was going to be readmitted. We should have known, however, that Will always pulls through. His weight was up, his Sats and blood pressure were good and the doctors were extremely happy once again.

So today we said adios to the hospital where our son spent his first precious weeks and are ready to head back home to Tennessee. We won't be back until it is time for his cath and stage 2 surgery (late summer/early fall).

I guess this ends the first chapter of our adventure to heal Williams's heart. Unfortunately, we still have a long road ahead of us. He has done so well being "home" (at my parents' house) this week, and we are so confident he will continue to thrive and push through. In the meantime we are going to continue to enjoy every second with our amazing little super hero. He is such a calm, alert and happy baby, who seems so wise beyond his years already. There will be much more to learn still from our little man.

Next step: conquering our interstage period!

Tuesday, June 12, 2012

First night

Our first night was challenging and rewarding. Will didn't keep down his first two feeds or his night medicines. We called the cardiologist and were terrified we would have to go back but he trusted our intuition that it was more stress and normal baby stuff. The rest of his feeds stayed down, and his 4 am and morning morning meds. He also gained weight, which is great.

Last night we took Will on his first walk, which he slept through. It was a wonderful feeling.

Monday, June 11, 2012

We are free!

Will was discharged confidently from Cincinnati Childrens today. After they upped his feeds he gained just enough to scrape by. From a cardiac standpoint, the doctors are very pleased. However, we have a follow up on Thursday, and if he is not gaining weight he will be readmitted. Meanwhile, we will be enjoying our time as a "normal" family.

Guess what?

Just signed our discharge papers.... We are bustin' out of this place!!!!!!!

Sunday, June 10, 2012

Our bump

We have hit our bump in the road. Will is still losing weight despite his fortified and strictly scheduled feeds. Please send more prayers to our son. We want him to be healthy. We want to go home.

Saturday, June 9, 2012

Weight gain

Jared and I are now doing full care for Will here at the hospital. We are so ready to go home. Unfortunately, Will is not gaining weight (losing slightly) and they won't let him be discharged until he starts gaining. From a cardiac standpoint he is still doing well.

Thursday, June 7, 2012


That's why I'm singing baby don't worry
Because now I've got your back
And every time you feel like crying
I'm going to try to make you laugh
And if I can't, if it just hurts too bad
Then we'll wait for it to pass
And I will keep you company
On those days so long and black

Still here

We are still here! Not much happened yesterday. Today we had a test with the ear, nose and throat doctor. He showed us that Will has a paralyzed vocal chord from the surgery. We were surprised because he is a very noisy guy. He wasn't aspirating during his swallow study so they said not to worry about it yet. We will check back in a few months and see what's going on at that point. It is possible that the nerves were only stretched and could fix themselves, but we won't know until around six months if that has happened. Worst case scenario there would be an extra surgery for Will, but the doctor said that is unlikely.

The nurse let us put a little outfit on him yesterday! But it is more trouble than it is worth here. We are about to give Will a bath now!

Tuesday, June 5, 2012

Happy anniversary Jared!!

Today is our second anniversary. We celebrated with Red Robin and spending time with the best present we have ever received (Will!).

Baby boy was still struggling with the bottle all day. He wouldn't take it at all for me while Jared was working. He just holds it in his mouth without sucking. I told everyone all he needed was the magical touch... Jared has done a much better job with his feeds. So after work I had Jared try, and Will drank half of his bottle! That is the most he has done so far! I'm so proud of my guys!

Monday, June 4, 2012


On Friday, our team in the cicu decided William was ready for "the floor". That is the recovery or step down unit, where patients are sent to prepare to go home. They were ready to send him this weekend, but they said they prefer to wait until Monday with such a complicated condition, so that they have a fresh, full staff.

We waited all day, and were becoming discouraged that they would move us. Finally around eight this evening we were ready to go.

Here on the floor, we are monitored still, but less closely. Jared and I will be taking on responsibility for his care. We have the diapers, swaddling, and feeding down. There are still skills we will need to learn, such as administering his meds and placing his ng tube. A big bonus... We can now hold him whenever we want, and we have a bed and shower in our room here!

The most important thing we are focusing on now is feeds. Will missed that valuable first week of feeding, so he is struggling with a bottle. Jared and I are being very patient. He has accomplished so much already, he deserves as much time as he needs for this. It is, however, the main factor in determining when we finally get to go home. Right now he takes about 10 ml out of 60 by bottle, the rest by tube. It has only been a few days so we are still optimistic.

Please continue to pray for Will. As well as he has done, we still have so much to overcome. We are not home yet, and even then we have the difficult interstage period to contend with. We know William is a warrior and will do everything he can, but he is just a baby, only 12 days old, and still needs the immense support he has received to continue.

Sunday, June 3, 2012

Slow days are good days.

Today is a slow day for Will, and that means it's a good day for us. This morning, I got to hold him for two hours. It was wonderful and peaceful. He was very cuddly and slept the whole time. Around eleven he had a bath, which he hated. After that I had my first time bottle feeding him (the nurses had done it up until then), but he was very upset from the bath so it did not go very well. We tried for about twenty minutes, but the nurse said you never want to push it too long. I'm ready to try again when he is. He is starting to recognize hunger and wake up around feeding time, which is a good sign at least. His nurse ordered him a crib, so now he is sleeping soundly in that.

Right before lunch, my parents brought our dogs to see us. I had not seen them or been outside in eleven days! So Grandma and Grandpa sat with Will, and we sat in the grass with our dogs for a while.

Now we are watching a movie and all three of us are feeling pretty good.

Saturday, June 2, 2012

One week post-op

Today, Will is one week post op, and still exceeding expectations. This morning he took a bottle, and they took out his nasal cannula. He is doing great! Last night, Grandpa Ray spent the night with Will so Jared and I could sleep in a parent room down the hall and try to catch up. I trust him, but still came in to check on him throughout the night! I just can't help it!

Dad got to hold him this morning!

Friday, June 1, 2012

Happy day

I was feeling down about not holding Will this morning, but shortly after, the nurse asked the doctor if I could hold him and we finally got the okay! It took a lot of effort to move him but it was so worth it! He fussed when they picked him up but fell right to sleep in my arms.

Today, I was surprised when they decided to take his art line out. They also removed his NIRS (he can wear hats now!). So we should be able to hold him more!

He has started feeds (via ng tube) and tolerating them beautifully. The OT and speech therapist came today and he actually drank a tiny bit from a bottle.

At rounds today, he was called a rock star... Duh!

My poor baby.

Yesterday, the chest tubes, pd cath,and pacer wires came out. Apparently it will still be a while for the arterial line.

After the surgery, chest closure and extubation, I expected things to be much easier around here. The problem is, now in addition to healing Will's heart, we are experiencing all of the non-sedated baby "problems" as well. I hate that when Will is crying, I can't pick him up. When he is exhausted and can't sleep, I can't rock him. When the nurses are peeling bandages off and it hurts him, I can't hold him. I can't wait for this to be over. Seeing Will upset kills me inside, because I know there is so little I can do.

That's all for now.