2 Week Check-Up

His first taste of M&M's. He was a fan! We've started taking him out and about more. Sometimes it is amusing to see people's reactions and sometimes it makes me sad. I want to tell the people who stop and stare for a long time, "Just ask me." I am more than happy to explain. I sure am learning a lot about how to treat people with differences, and I am able to teach my children about these things as well.

Playing outside with his big brothers. No matter how upset he is, going outside makes him happy right away. We were given some darling hats to keep that beautiful new head protected from the sun this summer.

We went in yesterday to Dr. Siddiqi's office at Primary Children's for Isaac's 2 week post op check-up. I wondered how he would do entering the hospital, but it didn't seem to bother him at all. It was kinda neat sitting in the waiting room with so many children and parents who had gone through similar things. The doctor said that everything looked great. Right above his eyebrows there is still some swelling, probably because of the drainage tube. That will go away eventually. He will have deep tissue swelling for up to a year. We don't go back to the doctor again for 6 months - that is amazing to me!

The swelling above his eyebrows is pretty visible in this picture.

The knot at the end of his stitches on his left side came out a bit so I clipped it off. This side is looking the best. Dr.Siddiqi said to massage his scar with vitamin E oil for one minute two times a day for a year. I started this morning and he was like a dog getting his ears scratched. =) He loved it and kept moving his head into the massage. It must be really itchy and uncomfortable with his stitches getting all tight and dried out. It's so nice to be able to do something for him that feels good. It also helps loosen up the dried blood and clean things up.

With the swelling mostly gone the lumps and bumps are becoming much more obvious. The doctor said they are from screws and where bone meets and overlaps a little. He is sleeping much better and acting much more like himself. I think getting better sleep makes all the difference so we are hoping that he gets that back to normal soon. 

1 Week Post Op

We've had a rough transition back to life, but it does get better each day. The first night home he screamed until 2 in the morning - I could not find any way to comfort him. Finally we both fell asleep in the spare bed in his room, but even then he was fussy all night. Saturday he cried most of the day which sounded extra sad because he had screamed himself hoarse the night before. He wanted me to hold him constantly or sit right next to him as he played on the floor. He couldn't be alone for a minute. Naps never last more than an hour, usually closer to 45 min, and he always wakes up crying. Alan and I looked at each other Saturday night with total exhaustion and wondered what we had done. He did do a little better when we elevated his mattress and added pillows for cushioning. We've kept up on his pain medications, but he seems the same whether he's medicated or not. The last couple nights we've only given him Tylenol in the evenings to help with sleep.

He has been eating and drinking great since the moment we got home which is so wonderful! Each day he laughs a little easier and is even starting to play by himself again. In talking with other cranio moms it seems that it takes 2-3 weeks before you feel like life is returning to "normal".

I'm amazed that Isaac looks this good after only one week! The swelling goes down more each day, which reveals more lumps and bumps, but the doctor said that is to be expected. I can already see some of the stitches are dissolving. I think his head is heavier and more awkward that it was before, so Isaac is getting used to that. It's really hard to not be able to communicate with him about what helps and what he is feeling.

He's still wanting to learn how to walk and still loves to explore.

The scab behind his ear is where the drainage tube came out. His head shape really is dramatically different than before. I do miss his old head, but I'm grateful for the healthy future he has in store with his new one.

This is the face we are seeing way too much of, but I am so grateful that we see less of it each day. He has been such a fighter and so patient with all that he has had to go through. I am so proud of this little guy and so inspired by all the strength that can come in such a small package.

Home!

 

Isaac slept a lot better than I thought he would. He woke up really playful and ready to get on with life. He loved going on walks in this stroller, it helped when he was restless from not being able to get down and explore.

 

He thought taking the lid off of the puffs was so funny. He sat on my bed with me and played with toys happily for a while.

 I thought this view was pretty cute. He was darling in his hospital gown.

 Playing peek-a-boo with Grandma in the curtain.

We were anxious to get him home, it was obvious he was ready and would do much better at home. He still wasn't drinking anything from a bottle, but he was eating enough baby food that they felt it was okay. He wasn't sleeping well with all the distractions either and just needed to be out of there. About 1:30 we finally got the go ahead from Dr. Siddiqi. He said we could take him home and besides pain management there wasn't any special care that he needs. That is amazing to us but we'll take it!

As soon as we were home he immediately started crawling around and playing with toys. He's a little unsteady but just amazes us with how well he's doing. He played for a bit and then I gave him a bath to get off all that hospital gunk. After his bath I made him a bottle hoping that being at home would make the difference. We snuggled up with his blankie, just like he's used to, and he drank the whole thing! That really is amazing considering that we have been trying so hard to get him to drink anything at the hospital. There really is something to having rituals and habits that help children know what to expect and that they are safe and loved. After the bottle I laid him in his crib and he went right to sleep.

We know there will be bumps ahead but we are so grateful for how well everything has gone. Alan and I talked on the drive home about all the emotions that have been a part of this process. We both agreed that the strongest emotion has been gratitude. Gratitude for so many things in every aspect of this journey. We are loved by the Lord and he has given us evidence of that love at every point along the way.

Highs and Lows

Alyssa, Jeff and Josh got to visit today.They were very excited, especially because they got to miss school. They came to see Isaac and then they went to the family play center and had lots of fun. Grandma Barnes stayed with Isaac and we all had lunch together in the cafeteria. Jeff had a hard time looking at Isaac, Josh seemed ok with things, and Alyssa kept telling me that he didn't look like Isaac.

 Isaac was more playful today than he has been before. He sat in his crib and looked at books and toys for a while. It was so nice to see, we even got a few smiles out of him. I love the wink he gave me in this picture!

After lunch things went downhill fast. He started throwing up everything again and being inconsolable. He threw up on his IV so much that we needed to change the dressing around it. While they were changing the dressing it came out a little and they couldn't get it back in. We opted to leave it out as long as we can, but that means that he has to be drinking enough fluids on his own and controlling his pain with only oral medications. He hasn't slept much at all since this morning and when he's awake he is really hard to comfort. We are working to get little bits of baby food in and to keep them down, he won't have anything to do with formula. Alan is staying later tonight to try to get Isaac asleep and settled a bit. I'm getting super exhausted and hoping I can find the energy to get through this night because I think it is going to be a long one.

Looking Better

Isaac looked much better this morning. The swelling went down enough that both eyes are open pretty far. He slept well through the night except when he was having his vitals checks. We have seen a few doctors today and there is a small chance we may go home tonight, but most likely it will be tomorrow. The doctor took out his drainage tube which may make the swelling get worse, but so far it hasn't. We're really glad not to have the drain in the way when we are holding and moving him.

He is much more alert today and wanted to be held and look around a bit. We even got a hospital stroller and took him out on a little walk around the hospital and one of the gardens. When we were walking the halls we got our first shocked response to his scar from a guy walking by. I told my mom that we are going to have to get used to that.

Getting Over the Hump

Today was a really hard day for Isaac. During the night his fever spiked again and we had to stay right on top of his pain. He woke more swollen this morning and it just got worse throughout the day. One of the plastic surgeons said that the face swelling is very painful. He cleaned out the drainage tube a bit hoping that would help his head drain better.

 

The nausea was really bad today. Isaac threw up everything we tried to have him eat, especially his pain medication. We switched to a gentler pain medication and gave him some anit-nausea medication as well, which really helped. He still won't take formula but he is taking apple juice fairly well.

 

He got a little wash cloth bath today. He was cold and didn't really enjoy it, but it was good to clean him off a bit. I put his calming lotion on afterwards that hopfully reminded him of home. He got a tiny little hospital gown to wear when we were all done.

 

 

 We got our first good look at his incision today and it is pretty scarry looking. I'm sure to a plastic surgeon it looks beautiful but to me it looks pretty painful and reminds me that we have a lot of healing ahead of us.

We had lots of visitors today which was a nice distraction. Grandma Blake got a break from watching the other kids and came up with Grandpa Blake for a visit. We are so grateful for all the love and support we are getting, it makes all the difference in the world. We feel so blessed.

First Night Post Op

Our first night in the PICU went as well as it could. I felt okay to send Alan and my mom home for some sleep. I stayed and was able to get a few hours of sleep little bits at a time. Isaac slept pretty well, but we had to watch his pain closely. He is still fighting a fever, but it is going down slowly. His heart beat was irregular most of the night and they thought the direct line in his neck might be causing it so the nurse took the line out early this morning. It didn't seem to help, but his heartbeat has been normal for the past few hours so they are no longer worried about that.

At 4:00 this morning Isaac had a 3 ounce bottle and threw it all up an hour later. He hasn't really eaten anything since, but he has IV fluids so he is doing well. They took out his catheter during the night as well and he has since had a wet diaper which is great. Everything is on track to be able to move to a regular floor sometime today.

Grandma Barnes got here before 7 this morning. Isaac's head wrap had fallen off during the night and the doctor said just to leave it off. We can now see his new head shape. The back of his head is quite swollen so his head just looks really big. It is definitely round and he looks different than before, but he is still our beautiful boy.

 

 

He is having more discomfort today and really wants to be held. We are all taking turns enjoying holding him. He opened his eyes right up when Dad came this morning and has been resting in his arms ever since.