I have spent most my free time doing things that need to be done or sleeping so this blog was written, waiting to be finished, over the course of a few days.
Jonny has been home from the hospital since Friday 7/17. His surgery the previous Wednesday went as expected which is to say it went well and it is done.
Jonny was less than thrilled as was to be expected. He neither ate nor drank from Wednesday until Friday Morning. He was hydrated intravenously and was fairly lethargic after the surgery. Thursday was a little better, but not only would he NOT eat or drink, but he would put nothing (including fingers/thumbs) even near his mouth even when he wanted to.
Unfortunately, he would have to eventually allow something to come close to his mouth if we were to leave the hospital.
Thursday night, he still showed no signs of wanting to eat or drink, but was pretty content other than that. He was a little stir-crazy from being cooped up in a hospital room, but we all were so you couldnât blame him. Mama thought that the I-V was probably hindering his recovery since the only thing that would overcome the apprehension about putting things in his mouth was hunger and thirst. She didnât voice her opinion because she didnât want to overstep her bounds and wanted to let the nurses do their job.
Thursday evening the doctor came and checked up on him and Mama offered her opinion. Of course, the doctor agreed and signed a consent form to take him off the I-V if he hadnât eaten or drank by Friday morning.
And wouldnât you know it, 2 hours of hard playing in the family play room after taking the I-V out Friday morning, Jonny was so thirsty that he finally overcame his fear and took 4 oz of formula which meant that we could all FINALLY go home.
Since coming home, Jonny is doing pretty well. He is on Oxycodone and Tylenol (every 4 hours or so). The doctor said that if we watched him closely and he didnât put sharp things in his mouth, he wouldnât have to wear the âFreedom Splintsâ all the time. We figured since we will be watching him 24/7 we might be able to forego the whole âFreedom Splintsâ altogether?
Well, yesterday, Mommy got Jonny a new âball blowingâ toy which looked harmless enough, but it had an edge on the corner and of course, Jonny discovered it. He started to chew on it before Daddy could take it away. And wouldnât you know it, we found a thin piece of what I could only describe as âTuff Skinâ in his mouth and had to call the doctor to see if he did any damage.
Fortunately, the doctorâs office said not to worry too much about it, it was a protective layer over the suchers, but now we have to be extra careful and make sure heâs not putting ANY fingers or toys in his mouth. We went a couple nights with the freedom splints on and it was not fun for mommy and daddy OR Jonny.
Jonny has been up at least every hour through the night. The problem with freedom splints is that every time Jonny rolls, moves, is startled, or wakes up for any reason, he will suck on his thumb to put himself back to sleep. He naturally sleeps on his side and with freedom splints and a hip brace, he finds it difficult to say the least to get comfortable.
With freedom splints on, any and every movement wakes him up and he fusses uncontrollably until he has a mommy or daddy chest to fall asleep on. Mommy has taken to trying to rock him to sleep on the couch, daddy has taken to sleeping with him in his office chair. He wakes up pretty much every time we put him down so we are trying to keep him on our chest through the night⌠(yeahâŚI know)
Jonny with his âFreedom Splintsâ and hip brace, trying to sleep at night. Daddy flashing a camera didnât help the cause much. I tried to shield the flash.
This blog has been written over the course of 3 days and this is day 3 now. We have finally decided that for our sanity and for Jonnyâs saftey, we will sleep him without the freedom splints. The sleep schedule is literally like having a newborn again, except he weighs 18 lbs and rocking an 18-pounder ainât quite the same as a 7-pounder when itâs all night. I tell you what though, I got my bicep workouts for the week. The doctor said that given the choice of crying uncontrollably or sucking on his thumb, the crying would eventually do the worse damage. So we will give the poor guy his thumbs back and see how he sleeps tonight.
Jonnyâs new bedâŚaround 3am-ish
During the day, Jonny is still Jonny. He is content in almost every way. He may still feel some pain, so we are giving him Tylenol as needed. His favorite pastimes now are walking around the house (with Daddy or Mommy holding his hands), and he learned how to put the basketball in the hoop, ALL BY HIMSELF!! Not only did he discover how to do that, he does it with both hands and LOVES IT! Daddy could not be more proud. Iâve already began looking up âbasketball prodigiesâ to see how young the talent was discovered in these child superstars. đ
We can tell the difference in his speech and his hearing already. The day after surgery, Jonny said âDa-daâ for the first time (previously it was âRa-Raâ). My heart melted. He has so much more inflection in his cooing and using sounds he never had before. He is pointing at everything he sees, is even giving âHigh fivesâ and has started waving when people say âbye-bye!â
He eats okay, not great, but swallowing takes some getting used to after surgery. He swallows a LOT of air with his bottle just like a newborn and will fuss and scream like a newborn after each sip even though he keeps going back for more. We still havenât found a good way to deliver his liquids. He isnât supposed to use a sippy cup or anything requiring sucking so we are still using his usual haberman bottle.
But, hey, we got 1 week down, 2 more to go. His checkup is August 5, at which time we will see if we get the âAll Clearâ from the doctor. Man, I am counting down the days.





Wow, the things the three of you have endured in the past year. I am sincerely humbled, I never had anything like that with my four girls combined so can’t even say “I know how you feel”. All I know is little Jonny is so lucky to have gotten such great parents who have taken such good care of him and have raised a happy, content baby in spite of all the obstacles. Sara and Greg always talk about how sweet he is.
I too am glad you have a week under your belt and before you know it all will be well again.
You are in my thoughts and prayers.