Heads up that this is a long post. I made notes daily and have included it in one big update on his second week of life!
10/10-Today was a great day! Joe and I spent the day up at the hospital all day together. We got a great report from the doctor and he got off oxygen this morning!! Woo hoo! He also got to move to an open cot this afternoon, and he is doing so good maintaining his body temperature. He does have a onesie on, then a footie on top, a hat, is swaddled, then has 2 blankets on top of that, so they will have to wean down his warmth layers eventually too, but he’s doing so well. He also was interested in breastfeeding one of the feedings and did great (and by great I mean he tried for a few seconds).
10/11-Another successful day! He is still off oxygen and doing well, and the only thing he is still on is caffeine and they are weaning him off of that as well! Today was a bit frustrating as a mom because he sleeps all day and has very little interest in feeding. That is the one critical step he has left before he can come home, and he sleeps 23 hours 59 minutes a day, and has zero interest in feeding. We had the lactation consultant come in today, but he slept through the whole session. I tried to give him some mom-son pep talks about how all he has to do is eat and we can break free, but he would rather sleep instead! Everyone keeps saying we just have to be patient because it will take some time and he will get it eventually, but knowing that is literally the only thing he needs to do to break free, I’m anxious to get him eating!
10/12-Wonderful day today! They upped his feeds to every 3 hours instead of 2, and he was so much more interested in feeding today and was also more alert. I hung out at the hospital all day and Joe came up at lunch for the rest of the day! We met Eli and my mom for a great dinner near the hospital, then Joe and I headed back to the NICU for the night feed. Rex definitely feeds best at the 3:00 pm feeds and the rest of them he just wants to curl up close to mommy and sleep!
10/13-He smells like a baby today. I picked him up this morning for his feed and he smells like a baby for the first time. This morning during his feeding they unhooked all of his monitors and just let me feed and cuddle with him, and it was amazing. It gave me a small glimpse into our new normal. He didn’t feel like a patient for the first time this morning and just felt like my sweet cuddly son. I caught myself daydreaming of life after the NICU. Rex also got his first bath today, and we had a great dinner out to eat pizza with my mom and Eli tonight! Joe and I also got a room at the hospital right down the hall from Rex, so we plan on staying here until he comes home. This way I am close by and can bring him milk and do feedings in the middle of the night and first thing in the morning. It also gives us flexibility during the day to take a nap, etc in our private room.
10/14-Today was another good day, but a little more difficult with a different doctor coming on board during the weekend and changing things up again. We tried to push Rex to 4 hour feeds instead of 3 hour, and he did not do very well. He ended up getting a lot more tube feeds today and he was doing well trying the bottle before today. In good news-my milk supply is going up, and I am now getting more milk then he needs! Yay!!!
10/15-Today was emotionally rough. Rex was doing well and no setbacks, but today I felt like we would never leave the NICU. The reality that my son lays here and is only needing feeding support is difficult. Although I am so very grateful that he is not on oxygen or on IV’s anymore, it’s difficult knowing that the only thing keeping us here is feeding. And not only is it keeping us here, but I feel like we are making zero progress in the feeding deportment. The Lactation consultant has came in and said I am doing everything right and I know I have plenty of milk, but yet he has zero interest and just falls asleep while eating. If I pump and bottle feed he stays awake more, but then I’m not breastfeeding. If I just breastfeed, he’s too tired to take the bottle after and ends up needing to be 100% tube fed. It’s just a viscous cycle that I am unsure how it will ever end. I cried with the doctors this morning… cried with every nurse…. cried with complete strangers, and I’m sure they think I’m a crazy pushy mom, but I’m ready to get home. Im ready to be home with Eli and Rex and not be split between my two kids. I long for the day we are all under one roof and the day does not seem to be coming soon unfortunately.
In good news today, my mom came to the hospital with me for the day and Joe took Eli to one of his friends birthday parties and he had a blast!
10/16-Rex is TWO WEEKS OLD! Not sure how time has flown by so quickly, but he is two weeks now! He is getting stronger and stronger every day, but we are still just working on feedings to try to get us home. The nurses and doctors communicate too well at this hospital because everyone has heard about my emotional breakdown yesterday. They have all asked if I would like to see the counselor and they have all talked to me about how Rex will get stronger and get out of here. (Yesterday I might have made some irrational comments about how he would graduate college still in the NICU). I ensured everyone that today I am feeling better, and I am much more optimistic today! Instead of focusing on the timeline of getting out of here, I’m just going to enjoy cuddling with Rex, working on feeding when we can, and spending time with Eli every evening when my mom brings him nearby for dinner. I know our NICU days will come to an end eventually in God’s perfect timing and until then, I will trust His plan instead of trying to make my own.