Parkers update

I know I haven't been updating the blog nearly as much as I should, sorry friends. Parker has been doing very well. He is still working on his bottle skills. Sometimes he gets it all down, other times he fights it. Thankfully we have the G tube so we are able to give him the nutrition he needs. There is no set time for how long he will have the G tube. I'm sure he'll have it at least through flu season so that I he gets sick and doesn't want to eat, at least he'll have a way to get nutrition.
Parker had an appt with the eye doctor last week. His retinopathy is improving and is now stage 1, it was at stage 2. He will follow Parker until it is completely gone.
Today Parker has physical therapy. They showed us some exercises to help work on his head and neck control. He has physical therapy once a week at sunrise hospital. Really, all of his progress will depend on us. We really have to work with him to get him caught up to where he needs to be. Even though his corrected age is 1 1/2 months, they treat him like his real age 4 1/2 months. He is a strong kid, so I know he will catch up quick.
Next week we are booked every day with follow up appointments. Makes the days go by super fast!
I will try to update more frequently, no promises though :)

We are officially out of the NICU! We have been home with Parker since yesterday. It has definitely been a change of pace in this house, but so worth it! He has been good about staying on his feeding schedule every 3 hours. I haven't gotten nearly as much sleep as Parker has. Go figure. We went to the dr today and he did gain weight again. 9lbs 1oz. I may not post on the blog as much as I did before, but we for sure will update milestones. Thank you all our followers for the love, support and prayers for our family

Day 118

What a long day!! So we weighted him this morning and he was less then he was last night. We weighed him again tonight and he was more then he was this morning, but less then he was last night. So I really don't know if he'll go home tomorrow or not. We will wait and see what his doctor says in the morning. We are staying the night tonight so that he will remain calm and conserve his energy. Gain weight son!

Day 117

He gained 70 grams! The house has been cleaned, the crib is ready, outfit for home is set, diapers out, diaper genie put together, freezer full of food. We are ready for this boy to come home. Unfortunately I was just notified that Parker did not gain weight tonight, he actually lost 30grams :(. So we will see what tomorrow brings. We pray that the doctors will see his trends in gaining weight and that they will let us go home.

Day 116

Parker had a cranky day off and on today, I think he was gassy. He had an MRI of his brain today. He needs that before he goes home to follow up on his bleeds. He lost some weight last night. Probably because he pooped so much now that he's off all that rice cereal and back on breast milk. As long as he gains weight tonight and tomorrow night we can be home on Wednesday. His nurse said we should put some rocks in his diapers ;) I'm sure he'll gain weight. He's been gaining every day except for today. We're so ready to have him home.

Day 115

Day 115

Parker is doing well with his feedings. He has been taking the bottle first, and whatever he can't finish goes in the tube. Thankfully he's been doing really well with his bottles. He is up to 80cc every 3 hrs. We still don't have an official date for home yet, but I'm thinking Wednesday, Thursday at the latest. Just talking about home seems so surreal. I still have a few things to get together before he comes home. I don't want to be running around like crazy when he gets to come home. Although I'm sure I will be a little crazy.

Day 114

Another father/son day. It's so hard being away from Parker during the day. Thankfully I got out of work on time and got to snuggle with him for a while. We even started him on bottle feedings today. He gets 40cc every 3 hours. He chugged his 40cc like a champ. We didn't thicken it nearly as much as we did before, and he got it down with no problem. They'll continue to gradually increase his feeds until he gets to his full amount. He's still off the oxygen and doing well. Although they did give him Ativan to help him relax and that didn't work, so they gave him morphine right after it and he was out. I think he forgot he still had to breathe. I told John he doesn't need drugs, he just needs his mommy! I can't wait to spend the next few days with him again!

Day 113

Today was a father and son day while mama worked. I was sad I didn't get to spend the day with my son, but at least I got to visit for a while after work. John said Parker did well. He was taken off his oxygen completely. He had some morphine throughout the day, so he was nice and chill. Of course when I got there he was wide awake! They started him on some feeds through the G tube today. We got the ball rolling with home health and supplies. So hopefully as long as things keep going the way they are Parker will be home sometime next week. We are so excited to have out little man with us at home. No more driving back and forth. It'll be nice to be at home as a family.

Day 112

Parker pulled through his 3rd surgery with flying colors. He came up intubated, and he was fighting it. He was gagging and fussing. So they decided to extubate him and put him on high flow nasal cannula. He's been doing great on that. So much more chill without that tube in his throat. His incisions look great and his G tube is being vented so that his belly doesn't fill up with air. They will most likely start him on his feedings nice and slow tomorrow. Hopefully we can start getting stuff set up for home so that we can be home by the end of next week.

Day 111

Day 111

Parker had a really good day. We tried the bottle a few times with little success, so we gave him a break and gavaged. Tonight I have him a good bath settled him in his blankets and he took his full bottle. What a good boy. He does it when he wants to, and we can work with him at home on that. He is all set and ready for surgery tomorrow. His surgery is scheduled around 11am. We know he will do great! He is one tough kiddo. Surgery #3 here we come.

Day 110

Parker had a night of fighting his feeds and another day of fighting too. His reflux was so bad today that at one point that his heart rate and o2 sats dropped pretty low. So after much discussion John and I have decided to do surgery. They will do a fundo which will help his reflux and a G tube so that we can feed him when he doesn't drink all that he's supposed to. And the G tube will be a temporary thing. Once he is stable after surgery we can take him home and continue to work with him on his feeding skills. We feel this is the best move for Parker. We know he'll do so much better at home.

Parker had a pretty good day otherwise. we gave him some breaks from feeding and gavaged it. He was really happy this afternoon. He was cooing and making sweet happy noises. We did some tummy time so he could work on his head control. He does really well with that. Gets those legs kicking too. We love play time. But mama love snuggle time even more. We get a lot of that!!

Day 109

Had a good sleep over with Parker. He did really well waking up on his own and taking most of his bottles. Then the morning came and it was a fight to feed him. All day long he wouldn't take his full feed. Very frustrating. I don't know if it's because of the thickness of the formula makes it harder for him to suck, or if it's the rice that makes him fuller. So he had his NG tube placed back and we gavaged whatever he couldn't eat. I feel like we're running out of ideas for this kid. We had a pow wow with his doctor. We talked about the possibility of a G tube for his feedings if he continues to not drink all his milk. John and I already have discussed the possibility of a G tube, and we're fine with it. After discussing our feelings and thoughts with Parker's doctor we decided to set a deadline. We have given him a week. If he does not show progression then we will plan for a G tube. Mr Parker better show us what he's made of. Whatever happens we ate still proud of how well he has done and how much he has overcome!

Day 108

Big step today. We discontinued Parker's NG tube today. He gets to eat ad lib now which means he eats what he can when he wakes up, so he really does run the show now. This will give us an idea of how well he will do at home. So with that being said, we're having a sleep over tonight! I'm staying all night to see how well he does. I figure I better get used to feeding him all night. Wish us luck!

Day 107

Parker continues to show everyone that he wants to go home. He took mostly all of his bottles today. Only short on 2 feeds that we needed to gavage 18cc and 10cc. That's still a huge improvement from where we were at the beginning of the week. Hopefully he will continue to do well with his feedings and then we can pull his NG tube. He has been off his oxygen for 6 days now without any issues. We're so proud of our son. He has been doing an awesome job!

Day 106

Day 106

Another great day with bottle feeding! We now get to bottle feed him with very feeding!! So exciting. That means we're just that much closer to home. Hopefully he will continue to show everyone what he can do. It's like a light bulb went off in his head. I'm glad he gets it! I can't wait to get him home soon.

Day 105

Day 105

Parker was a rock star today!! He took his full bottle at 0300, 0900, 1500 and 1800!! I think we have found the secret recipe with the formula and cereal. And as long as he is awake and not grumpy or sleepy, he'll eat. So happy for my little man! He did throw up twice today, which was weird because he usually doesn't do that. Hopefully that was just a fluke. he is still off the oxygen and holding his own. It was a great day! Let's keep 'em coming!

Day 104

Still working on getting Parker's feeding thickness just right. Tried different consistencies and different nipples. Thankfully he got 2 full feeds in a row. Then I tried to feed him tonight and he was so frustrated and spitting it out. I wish he would just eat. We will see what tomorrow brings.

Day 103

We're still working in figuring out what to do with Parker's feedings. He had another swallow eval today. This time he was to the point of aspiration. So they recommended thickened feeds. I found out today that if you thicken breast milk with rice cereal it breaks down the rice cereal and basically does not keep it thick. So he is now on formula with thickened feeds. It's like a milk shake! Only it does not taste as good. He did ok this afternoon and a bit of a fight to get half of it down tonight. It may take him some time to get used to the formula and the thickness. Praying that this will be the final fix. They have decreased him to 22 cal and increased his feeds to 68cc/3hrs. He has been doing great gaining weight. You wouldn't even know he was a preemie. Greatest news, he's off his oxygen! He's been off all day and is doing well. Hopefully this time we can keep him off.

Day 102

Well I came in this morning with discouraging news. Parker didn't do as well with his feeds last night. He was fighting it. I think he's having a hard time with his reflux cuz he was cranky all night! Parker also needed a blood transfusion today. So with a blood transfusion there is no milk 2 hours before, during the transfusion, and 2 hours after. He was so hungry all day. Fussy little boy. I felt bad for the poor little man. Then tonight I gave him his bottle and he chugged it! No problem at all. I just don't get this kid sometimes! He does what he wants to do. You would think I would have learned this by now.

Day 101

Parker had a pretty good day today. Got lots of rest, which Is always good. He did fairly well on his bottles today. Didn't finish them, but close. And considering we gave him a bottle 2 feedings in a row, he did well. They've also increased his feeds to 64cc/3hrs. Gotta keep up with this growing boy. I thought I could squeeze him into one of his preemie tops and I could barely button it and it was riding high. Guess I need to bring more clothes to the hospital. He's getting so big!!