a very long post about Isaac...

It’s been a very long, hard week. Foolishly I thought that this surgery and recovery would be much easier than the last one. I guess the surgery was easier. They had some similar challenges as the last one in terms of taking several tries to intubate him and poking him in every possible place to get blood and establish an IV. And of course, it was equally as hard to give him up to the surgeons and in the days leading up to the surgery Walter and I couldn't help but have flash backs from the last surgery. We kept reminding ourselves that this would be easier and shorter. I did get to walk to the OR with him this time and stayed until they sedated him. I was nervous to do that but I was thankful to be with Isaac until he fell asleep. He went to sleep holding my hair (his security blanket) and the first thing he grabbed for after he woke up was my hair.

Pictures are courtesy of Sarah! 

This is called the huddle...

Mommy's sad...

I’ll backtrack a little bit because some of what happened in the week leading up to Isaac’s surgery dictated one of the procedures. Miraculously he started drinking four to six ounces of milk at a feeding and all of a sudden he was drinking twelve to sixteen ounces of milk a day. This was absolutely amazing progress! What most people don’t know is that the plan was that he would also get a g-tube at his surgery on Tuesday and due to the fact that he made so much improvement with taking in liquids, we were able to skip the g-tube! The other wonderful thing about Isaac drinking more milk is that he can take Miralax! Woohoo! I never thought I would be excited about that but I’ve been working for months to get him to drink enough milk to allow him to take Miralax…and it works! So far, this is the only thing that will make Isaac poop! Hooray!

Still, the only method to get him to drink anything is with the squeeze bear; I’ve definitely come to appreciate “the bear” especially after this last surgery when he couldn’t close his mouth enough to nurse. Some people are baffled by Isaac’s feeding problems. I’ve pretty much just come to accept it and that’s the advice I would give anyone who doesn’t understand. It will get better. One day he will feed himself. One day he will eat solid food. One day he will drink from a cup. It will happen. But not any time soon. And rather than force the issue I think it’s best to accept that yes, he’s behind and has a lot of catching up to do, whether that’s from his first surgery or not, we’ll never know. I see my friend’s babies who are half Isaac’s age or more passing him up in developmental areas that Isaac has yet to reach. Trust me, it’s a bummer and it’s disappointing. According to the GI doctor, Isaac is the average length of a six month old and average weight on a four month old. I’m not really into averages per se because I know that according to family genetics both of our children will be smaller. But, that was hard to hear and I work so hard each week for Isaac to gain his goal of ten grams a day and it really shouldn’t be like that.

For a couple weeks we had a break from hours on end of screaming. And I promise, when I say screaming, I mean screaming. Since the surgery we’ve had some really, really bad nights. Wednesday night Isaac screamed for six hours. How is that even humanly possible? Apparently it is. Don’t worry, the following night he only screamed for three hours. It is only by God’s grace that I have survived the last fifteen months. Most mornings I have no idea how I can possibly function. 

As I said, recovery from this surgery has been rough. Isaac felt miserable until today. I have been praying and praying that this surgery would not affect the progress we’ve made with his fluid intake and thankfully, it has not. Actually, we’ve experienced even more improvement in the last two days. Ironically though, the thing to go with this surgery, was nursing. This is one of those things that I’m okay with but it also makes me sad. He hasn’t nursed for two days and I stopped trying to get him to nurse because his nose has been so clogged that he couldn’t anyway and the whole process just made him even more frustrated than he already was. The beautiful thing about nursing on demand and following your babies cues is that you know when it’s time; you know when they’re hungry; when they need comfort; and as I’ve now experienced with both Isabella and Isaac, you know when the nursing relationship is coming to an end. This is another reason why “the bear” is vitally important. If it weren’t for that we would most certainly be back in the hospital for a g-tube.

At his surgery last week, Isaac had an adenoidectomy, tubes put in his ears, and a turbinate reduction. He also had tons of blood work done, a couple different scopes and biopsies, and a hearing test. The scopes showed nothing abnormal and his hearing test was also normal. I don’t know yet about the blood work but I assume it was also normal since I haven’t heard anything.  The turbinate reduction was unplanned. The ENT found that Isaac’s nasal passage was almost completely blocked due to this certain tissue in his nose that is larger than it should be. She also found that the flap (epiglottis) covering his voice box (larynx—anyone reading this who is doctor can tell me if I have this wrong) is protruding into his airway which obviously causes problems. Apparently, this may be solved by removing his tonsils…which is another surgery when he is two. If that doesn’t work then he’ll need another surgery to fix that flap. The doctor said that because of the Craniosynostosis his anatomy is pushed back and very narrow. We’ve always known he’s had trouble breathing but we didn’t really know all the parts and pieces. Now he needs to learn to close his mouth and breathe out of his nose! See, you think all of these things should just happen but sometimes they don’t!

For this surgery we were at the Cleveland Clinic, and let me tell you, it’s a super nice hospital and I’ve been very impressed with the facility and of course the doctors have been amazing…until we went upstairs to our hospital “room”. Our “room” consisted of a curtain that closed us off from the other four children. Talk about a nightmare…four unhappy children all taking turns screaming throughout the night. Yeah, not fun. Needless to say, we were begging to leave and may have fudged the amount of “real” nursing that Isaac was doing just so that they would discharge him.

We’ve been home since early Wednesday morning and are taking things day by day. Like I said, Isaac is feeling much more himself today. Tomorrow he has his first real physical therapy appointment (last time it was an evaluation which he screamed through…he always has to be so difficult!) and as you will hear all about in another post, Isabella is starting ballet tomorrow. As you can imagine, she is thrilled!

Until next time,

Sierra

p.s. I promise I’ll also get back on track with the One Thousand Gifts because I miss sharing!