I’ve actually written most this blog already, but I’m adding this to the top because when I write while I feel apprehensive, I tend to write with a depressing tone. I’m getting very pity-party-ish so let me start out by saying…
Thank God for family! My parents are coming for Jonny’s surgery to be supportive and my sister is helping us clean house so we have a nice clean house to come home to after he comes home. Our friends and family and minichurch are all praying and we can really feel their support and we have a certain uncle and auntie who would (and have) willingly, on a drop of a dime, drive all the way over here, kick us into a hotel and take a night shift to stay up with Jonny who was kickin-and-a-screamin. I know God will pull us through this just like the last surgery and the 3 months of wearing harness/hip casts.
We just put Jonny to bed for the last time before his surgery. Technically his surgery is at 2:50pm-ish tomorrow, but we’ve heard that before and the last surgery was pushed back 4 hours from the original start time.
The reason knowing the exact time of the surgery is so important is because Jonny can’t eat anything 9 hours beforehand, can’t drink formula 7 hours beforehand and can’t eat or drink anything at all 4 hours beforehand. Which means, no food after 5am tomorrow, formula only after that until 7am, and then water/pedialyte only after that until 11am.
Jonny is right in the middle of cutting his 6th tooth and teething on 7 and 8. He has been getting up in the middle of the night regularly for the last week. Mama has been working for the last 4 days so I have been getting up with him when he needs a bottle, needs to be rocked back to sleep, or just needs his daddy. It really hasn’t been too bad. The longest he’s stayed up is about an hour at a time and when he’s awake, he just wants to be held and only cries when you put him down. When he was a newborn, he just cried all the time for hours on end at night. This is NOTHING compared to that.
Ugh, but when you are trying to stay in shape, when you are on that kind of a sleep schedule, your energy is sapped, you tend to eat whatever is easiest to make (in this case, birthday cake and leftover party junk food) and workouts be damned. I think I’ll start back up in August?
If Jonny gets up tonight, I am going to get him up and feed him some cake and ice cream, some animal cookies and a big bottle of milk to boot. The poor kid can’t have any solids except pureed food for 3 weeks so we better get as much in as possible tonight. If he stays up all night from the sugar rush, so be it. I’d rather have him stay up all night and sleep all morning into the afternoon so he’s not starving and dehydrated by the time we have to take him in. I’m pretty sure his sleep schedule is about to be properly obliterated after his surgery so, anything goes today/tomorrow.
I fed him a steady diet of chips, crunchies, animal cookies, crackers, cheerios and basically anything he wanted today.
The surgery itself is supposed to last 3-4 hours. They are cutting the muscles currently in the back of his mouth around the cleft, and reattaching them together sealing off the small hole. In addition, they are inserting tubes in his ears, but that is a 3 minute procedure and relatively minor. He will be in the hospital until he is able to take food on his own again which could be Thursday or even Friday.
I’m going to bring my video camera to the hospital tomorrow to see if I can upload the birthday videos while we wait for Jonny to get out.
The recovery from the surgery is the hardest part. Jonny will have to adjust not only his eating/drinking, but also relearn how to breathe, suck, swallow and talk. For 3 weeks he cannot put anything in his mouth so he doesn’t rip the stitches out. He will have braces for his arms aptly named “Freedom Splints” that will keep his arms straight and not allowing his hands to reach his mouth. He won’t have to wear them all the time; only when we aren’t watching him closely. The doctor DID say that if he was crying inconsolably, to let him suck on his thumb because the damage done by screaming is far worse than sucking on a thumb. So that is actually a huge relief. We initially thought he would not be able to suck on his thumb either.
I can’t imagine going through a surgery like that and can only imagine the frustration from having to relearn those skills, let alone the pain from the surgery itself. I can only pray that we are making the right decision for him and that it will be better in the end.
AND… in a completely unrelated blog that should have been written yesterday or some other time than right before Jonny’s surgery so it would sound less “crazy-worried-parent-ish,” we had his 1 year check up on Monday.
Let me start THIS blog by saying “10am appointment (nap time is 11am) + typical delays at the doctors office=cranky baby for said checkup.”
After being poked and prodded for 10 minutes, Jonny was NOT HAPPY about his time at the doctor’s office AT ALL. Then, the doctor turned out the lights, covered up one of his eyes, and pointed a bright light in the other. Jonny furiously tried to cover his eyes and turn away from the light but daddy was instructed to hold his hands down while the doctor held his head still. After 5 minutes of that, the doctor seemed to think that Jonny’s cries were WORSE on one side than the other leading him to believe that Jonny may have some sort of problem with his eyes. Personally, I think that he was equally cranky for both eyes, but nevertheless, we were advised to seek a pediatric optometrist to verify that he doesn’t have a “weak” eye.
I’m beginning to think that doctors arbitrarily pick part of your anatomy to be worried about with each checkup by throwing darts at a board with anatomy parts labeled as the numbers. (Eyes, and ears, and mouth, and nose…head, shoulders, knees and toes, knees and toes!).
Oh, and then he had to get 3 shots directly after that… (does this sound like a pity party yet?)
Thanks for bearing with me. It will be nice to have all this out of the way and done.
this is Sara’s friend Angela…just wanted to say that we are praying for you all!!! Hope the surgery and recovery go well.
This is Sara’s mom in case you don’t recognize the name. You probably do by now but I also didn’t want you wondering who this random person was.
Wow Julie and Jason, you really have had to deal a lot with that poor sweet baby and I know it has to rip your heart out. Hopefully this will be it.
And I do understand doctors having to be very careful because of all the absurd malpractice suits they have to fight all the time but it DOES make it frustrating because it has caused them to be alarmists. I swear, about 95% of the stuff they make you worry about always ends up being nothing, which is good of course, but it’s frustrating having to wade through the process of finding that out. One of the little girls I baby-sit for is supposedly very deaf, her parents are even learning sign language in case she loses her hearing all together. Now who am I to say anything because she has had hearing tests here in Yakima and also at Children’s Hospital in Seattle and the conclusion is the same, nearly deaf. No matter what, I don’t believe it for a second. She’s three years old and talks darn near as well as any other 3 year old I know and besides, SHE CAN HEAR! If I’m behind her and ask her something she turns around and answers me. When our cuckoo clock goes off she hears it in the other room and runs to listen. I have even whispered behind her to see if she hears and she will respond. She HATES her hearing aids so rarely has them on here so all of that is without any aid. So, long story short, I’m sure Johnny’s eye is just fine, it just sounds like he was annoyed and who wouldn’t be.
Good luck, we’ll be praying for you.