Monday afternoon I got on the phone and got a bunch of stuff checked off the to do list. I called the medivac people to give them our insurance info, the Pediatrician to schedule Mason's first appointment, my work's HR office to make sure I had all the info for insurance purposes, and my ob/gyn to reschedule my appointment tomorrow (needed it earlier in the morning so we could go get Mason and take him home). We were going to have a busy few days ahead of us so we were getting in prep mode. We had a few things to do around the house but we were pretty much set.
Mason passed his hearing test so the only thing left was the MRI and car seat test. I got the wonderful privilege of watching the required videos the NICU makes parents watch before being discharged. I stayed awake but it wasn't easy. Especially with Mason passed out in my arms. The main medivac doctor came by to see us and check in on Mason. She was super nice and really helped put me at ease the day he was flown to DC. I was pleasantly surprised when she popped her head in. Its always great seeing familiar faces. Especially ones that helped Mason get better. She was thrilled to see how well he was doing so quickly. So far, everyone that said they would come by or call and check in on Mason had. Even the NICU in Annapolis called. We have had some pretty amazing people helping little Mason get better. We have been very fortunate.
Tuesday morning we had to get up early for my check up in Annapolis. It had been awhile since this old body had seen 6 am. I got up and going pretty good but by 9 I started fading. I called the NICU and confirmed we were still a go for discharge that afternoon. My doctor said I was healing nicely (on a degree scale of 1 to 3 I had a 3rd degree... Ouch! :( ). After the appointment we made a quick trip to Target because we love to spend gobs of money there. Especially when I get in the baby clothes section. :) There is always something we need from Target. It's dangerous!
The last time we left Annapolis and headed to DC was when Mason was medivaced there. Now, here we were, almost two weeks later making the same trip. But this time we are taking him home instead of dropping him off. It was a surreal feeling. Still very hard to believe we had went through what we did. For the past few days the doctors kept saying how sick he was when he came in. Maybe they didn't want to worry me but it wasn't until now that it clicked. He was really sick and they were really worried about him. The discharge doctor even said he was very close to needing the invasive ECMO treatment. It is a miracle that we are getting to take him home so quickly. We do have to do developmental check ups at Children's starting at 4 months but to walk out of there within two weeks was just amazing. The required to be discharged MRI looked pretty good but they said there was a very small sign that oxygen was not delivered appropriately to his brain for a very small timeframe. Unfortunately there is no way of knowing if any damage was caused until he gets older, hence why we have to do the developmental check ups. Also, since the nitric oxide treatment has only been used for 10 years they are still studying the effects it has on children long term. So most of the check ups will be research based.
The wait to be discharged felt longer than what it actually was. The doctor had to type everything up and do a final evaluation. Once that was done we were out the door. I was kinda surprised how easy and uneventful it was. He did good in the car seat and slept almost the entire way home. We were about 10 minutes from the house when he realized it was 3:30 which was half an hour past when he was suppose to be fed. So he screamed at us the rest of the way home. Ha! My first feeding outside the hospital happened in the car in front of the house. As soon as Doug put the car in park I grabbed him up and stuck the bottle in his mouth. We felt horrible for making him wait but there was no way I was taking him out of that car seat before we got home. For payback he decided to not nap between his 3 and 6 o'clock feeding so he wanted to sleep during his 6 o'clock feeding. Oh the personality already! Luckily, he was exhausted after that and passed out so we could eat some dinner.
Auburn did really good meeting Mason. She sniffed him... a lot! She even gave him a few kisses on his legs. I think she is very confused at the moment but she doesn't seem jealous or hateful towards him. It didn't help we brought him in and 20 minutes later the BG&E guy came by to install our smart meter. She was really thrown for a loop with Mason and some random man in the house. Poor thing.
So the first night was mostly uneventful for me. Doug did the midnight feeding and I got 3 am one. I got about 5 hours of sleep thanks to that. Since we had been up and moving since 5 am, it was much appreciated and needed. Mason paid me back though. He peed on me twice in one diaper change at 3 am! I took the first diaper off and was in process of securing the second when the first shot was made. He got my pants, new diaper, couch, and blankets. Then when I was taking the second, now wet diaper off he fired off the second shot. I used the second diaper to shield myself so I had to put on a third diaper. Doug thought it was hilarious. I can't wait for Mason to soak him one day.
Wednesday we had the first pediatrician appointment. The NICU required us to have one within two days of being discharged. We were able to see our preferred pediatrician that had already seen him when he was in Annapolis's NICU. Since he was familiar with Mason and his condition it made the appointment go quicker. He said Mason looked good for how sick he was just a couple of weeks ago. Mason had gained weight which is what we need to hear every time we have a check up. He was not happy about being back in a doctors office and the heal prick thing they did really pissed him off. But since he is do cute the nurses didn't mind him screaming at the top of his lungs. (Or maybe they are just use to it but I am going with cuteness.)
I cooked dinner that evening. Made a big casserole so we would have leftovers. I chose one of Doug's favorites, hamburger and zucchini casserole. He hasn't had it in 9 months since the thought of ground beef made me gag. Ryan came by to bring Mason a welcome home present and us some food.
For Mason's 9 pm feeding, i took him upstairs to the master bedroom. I figured i would put him in the bassinet and go to bed after we were done. When i changed his diaper, he peed all over the comforter... Thankfully we have a thick comforter so nothing soaked through and we have an extra blanket we can use on the bed until we get it dry cleaned.
By Thursday Mason was eating very well for me. Getting about 80 cc's each time. Best part, he goes right to sleep after each feed and we have to wake him up for the next feed. I can't wait until we don't have to feed him every 3 hours so he/we can sleep more. We did his first at home bath that evening. He got sponge baths in the hospital but since his belly button scab was long gone thanks to the iv they had in his belly button we did a "tub" bath. The tub we got has a sling for newborns to sit in. That way they are only partially submerged in the water and we don't have to hold him up the entire time while trying to bathe him and not drown him. That's way too much stress! The sling made things a lot simpler. He did better with the tub than he did with the sponge bath. He still cried but it never turned into that scream cry babies do when you really piss them off. I hope we did everything correctly. Trying to keep him warm while drying him off and putting his diaper, lotion, and clothes on was a fiasco. That's going to take a lot of practice. I can say we managed to not get water all over the kitchen. I figured I would be mopping up the entire first floor but we barely got any out of the tub/sink. I think my favorite part was putting on his outfit. I had bought quite a few onesies with long sleeves, legs, and feet (it probably has a name but I have no idea what it is called ). Since he had the pick line, iv's, and blood oxygen monitors in/on his feet we couldn't put them on him while he was in the hospital. With all that being off, we could finally put him in them.
Thursday night going into Friday things took a turn. Mason began to get very fussy in between feeds. He wasn't eating a consistent amount, sleeping a lot less, and sounding very gurgly/congested. We were up all day and night trying to get him to stop crying. He slept some but not even a clean diaper, food, or snuggles made things better. We walked, rocked, swung, bounced, vibrated, and glided. Nothing was soothing him. All these things were so not Mason. He was a very happy baby. He ate, slept, and dirtied diapers. The only time he cried was when you changed his diaper or was hungry. His new demeanor really worried me. So Saturday morning we called the pediatrician. Since he has a "history" they saw him right away. I guess his PPHN is a blessing and a curse. We get high priority at the pediatrician but we had to go through 2 weeks of hell. Unfortunately and fortunately, we didn't find anything wrong with him. I was really scared they were going to tell us to go to the ER or something bad. But all we got was a few "try this and call in the morning". We are lowering how much we feed him and getting rid of the 12, 3, 6, & 9 feeding schedule opting for a more "whenever he gets hungry" schedule. I think the NICU nurses would fall over dead if they knew. We are crossing our fingers that it works. If not, we will be going back to the pediatrician next week to figure out if he has a food sensitivity or acid reflux. Either one would not be surprising considering his "history". That poor belly went from tiny amounts to nothing to 70 cc's in two weeks. That is a lot for an itty bitty tummy.
No comments:
Post a Comment