- Birth – 3035 grams | 6 lbs 11 oz
- 1 Month – 3950 grams | 8 lbs 11 oz
- 2 Months – 4420 grams | 9 lbs 11 oz
- 3 Months – 5620 grams | 12 lbs 6 oz
- 4 Months – 5889 grams | 12 lbs 15 oz
He is wearing size 2 diapers and currently not wearing clothes since he just had his Glenn surgery. Was wearing 3-6 months right before though! He has almost completely outgrown 3 month onesies.
Eating: Huck was eating anywhere from 120-150 mls per bottle, every 3-4 hours up until the point he went for pre Glenn cath lab at around 3 1/2 months. After that, he developed necrotizing entercolitis (NEC) and was put on bowel rest and antibiotics for 14 days. They ran IV nutrition during that time. He was released to restart feeds the Sunday after his Glenn and we started with 15 mls and are up to 30, but so far he is not tolerating his feeds very well. He has taken 7 bottles in the last 24 hours and puked up the entire volume of 3 of them. Eating is the main thing he has to figure out again post op in order to be able to go home.
Sleep: Again, pre Glenn, he had a pretty decent routine, but it kind of all went out the window post op. He is starting to sleep more at night and nap less during the day, though. He still sleeps a lot in the mamaroo which helps his reflux, but will also sleep pretty decent in his bed at a pretty steep incline. I’m still brainstorming ideas for sleep when we go home.. pretty sure we will be getting a mamaroo, but trying to think of other options too. We had an arms reach co sleeper that I’m trying to figure out if there’s a safe way to elevate the head of it. If you have any ideas, let me know! He will be sleeping in our room for quite a while because I’ll be a nervous wreck for … oh, the next 18 years.
Milestones: He rolled belly to back a few more times before he went back on chest precautions post op, and when he’s on his back, he rocks really hard to one side. Wants so badly to flip to his tummy! Has really great head control and can sit unassisted for up to 20-30 seconds!
He also went through his first hurricane. We are still in Houston, so we were here throughout Hurricane Harvey and it was pretty intense here for a little bit.
Medical Milestones: He had his Glenn on September 7! This was his second open heart surgery. Post op recovery is going well! He was extubated the day after surgery and has been on room air since then. We have been working on getting back up to full feeds so that he can get off tpn and lipids and hopefully go home! His reflux is back with a vengeance so we’re trying to work around that. He is still on lovenox shots, clonidine, a diuretic, reflux meds, diazepam, and methadone for opiod withdrawals, but we are actively weaning methadone. They turned milrinone off a few days post op. So far, labs look good and indicate a successful Glenn!
Currently satting in the high 70’s to mid 80’s, heartrate is 120-150, blood pressure is usually 90s/40s.
- Being held / rocked / snuggled
- Watching videos of sister
- Watching movies, really likes Sing
- Being tickled
- Listening to Elvis
- When you blow kisses at him
- The lights that reflect off his monitors
- Warm bottles
- Chewing on toys
- Field trips out of the hospital room
- Diaper changes
- Picc line dressing changes
- Lovenox shots
- Getting his blood pressure taken
- Getting his temperature taken
- Being listened to with the stethoscope
- Pretty much anything hospital related anymore, haha
- Being restrained in any way
Whew, another month down. 123 days in the hospital and 128 days in Houston.. we are so ready to go home. We basically missed the whole summer being down here with Huck and we’re ready to get out of here, get back to the country, and enjoy the fall. Even though our stay has been long, I couldn’t imagine how things would be if we were anywhere else but TCH. We’ve now seen what happens with babies that start out where we were supposed to start out (that’s a story for another day), so that alone makes us thankful to be here, but we are also so thankful for how so many people have taken what seems to be a special interest in our boy and our whole family. I’ll actually miss a LOT of people when we finally go home!
Huck Inlow, you are so loved! I hope one day I can explain to you how much not only your daddy, sister, and I love you, but how much our entire community and family and friends and nurses and doctors and PCA’s and therapists and complete strangers love you. You have so many people supporting you and we have been shown so much kindness from all of those people. I hope you always know that kindness. And I hope you know how many people have rooted for you, prayed for you, and fought for you. You have love from and support from all over!