Friday, August 15, 2014

Summer fun!

This summer has been busy busy. Who knew having a newborn and a two year old would be so busy...ha.

I tried having a "theme" every day and that seemed to help.

Most Mondays, Jack and I had "Make it Mondays" where we made something fun (cookies, Popsicle etc).

I then discovered a local Music class at the Wilderness Station, so the past two Mondays have been "Music Mondays"!

Tuesdays are "Story Time Tuesdays". The local Library has a great story time but only had it once this summer (or apparently I kept missing it). We would still go to the Library and read our own stories.

Wednesdays are Wet! We usually just hang out and use his new water table. We did go swimming once, which was fun.

Thursdays are "thinking Thursday" and we do some kind of educational type activity!

Fridays are Free days! We just have fun.

We went to a small amusement park/water park one Friday and had a blast. (I'll do a separate post) We've also found an "art class" that meets in the park, so we went to that too! Fun!

All in all, it's been a wonderful Summer. Busy, stressful and at times crazy but fun!

Tuesday, August 5, 2014

One day at a time: Hank's NICU pt 3

I titled it "one day at a time", b/c it was literally one second/hour/day, at time in the NICU. We could not get excited for "tomorrow" b/c we never knew what the next day would bring. Plus....our days started running together, so it felt like one looooong day!

The Doctor's slowly increased Hank's feeds by 3-5 ML's per feed. They constantly drew blood gas levels, ammonia levels etc. Thankfully, he had a UAC, so they didn't constantly have to poke. They did have to prick his heel for every glucose test, which he hated. His poor heel took 2 weeks to heal from all the sticks.
Dada's turn to feed!

His ammonia levels increased slightly, but the other numbers improved....we were beyond thankful. At some point, the Dr agreed that he could nurse once per day! I was so thrilled. It was rough getting him to latch, but we at least tried once a day til he went home.

His billi levels continued to rise. Usually it spikes and then goes down but he doesn't like to be "usual". His spiked at 13 and then continued to rise....ugh. Under the therapy light...again. He was not a fan of keeping his shades on either.
Pulled his glasses off...silly boy!

It was literally more of the same....wait and see... Thankfully, he was making such good progress, that he was able to get moved to the "Pond" (their "step down" NICU wing), about a week and half into his stay. The nurse told me that this usually means they're about to go home! Woohoo!
off the warming bed and in real clothes!!!

Wednesday, his nurse informed me that if all goes well he should be able to get discharged the next day. What??? We had to "room in" for the night (stay in the hospital room, with him and practically no medical help...just like at home). We were not prepared for this, so we had to quickly make arrangements for Jack and get our bags etc ready.  I also had to do lots of homework (watch videos of how to take care of your baby etc), and sign a lot of forms.
Discharge videos!!!

Wednesday night, we arrived for our rooming in adventure. He, bless his heart, got circumcised that afternoon and was all out of sorts from the anesthesia. He also had his first shot. Needless to say, it was a rough day for him. Since he was on oxygen, he had to do a "car seat test", which means he had to sit in his seat (with the base!) for the length of our car trip home. This makes sure that his o2 levels stay normal, so hopefully there's no surprises on the way home. He passed! Yay!

Around 11 PM, he woke up to feed. The nurse let me feed him in the NICU before we headed back to the room. That's when he decided to give us another scare. He started making gagging/choking noises and wouldn't nurse or eat his bottle. It was so bad that the nurse was quite concerned and called in the NNP. She examined him and was concerned but since his O2 numbers weren't crashing, she was confident it was due to both the medicine he was on earlier and that his tongue was interfering with his suck (resulting in the gagging). Whew....

rooming in room
We slept pretty well, all things considering. The next morning (Thursday), we had the lactation nurse stop in to help us out. Thankfully Hank is not tongue tied like Jack was (that was awful), but since he was either IV or bottle fed practically from the beginning of his life, it was hard for him to relearn latching. The lactation nurse was patient and very helpful. She said it was most likely a texture thing and that he doesn't want to work that hard...bum! She gave me a "haberman" nipple (I think it's called that?) that mimics the suck/pull of a natural breast and also a shield. She also let me know I could come back any time to her office. That was reassuring.

Dr. Valero stopped by to examine him one more time before he was discharged. After this exam, we had to take Hank back to the NICU to be examined by everyone else. The Doctor heard him gag/gasp while eating (AGAIN...ugh!) and immediately got the Speech/Feeding therapist to evaluate. She advised against the haberman bottle and they all concluded it was his tongue falling back into his throat and that it should correct itself.

A few hours, a ton of paper work, follow up Dr appointments (with neuro and genetics) and maybe a few tears shed later....we were finally free to GO HOME!!!

Goodbye NICU!

It was such a roller coaster of emotions over those two weeks and I was so thankful that I was bringing my baby home. There were moments when we weren't sure if we would be. Thanks be to God.