In Gods Hands Part 4

In Gods Hands Part 4

Saturday morning we went down to spend as much time as possible with Aaliyah.  My parents arrived and since I was tired my mom stayed with her, so I could go rest in my room. A little while later my mom said the doctor wanted to see us, so we went down to the NICU and into a room they had, what came next was a life changing moment.

The doctors proceeded to tell us that Aaliyah had two conditions. Lissencephaly and Microcephaly. There was a chance she would not thrive on her own. She may need a permanent feeding tube and breathing tube. She might never see, never talk, never walk. I am sure you get the idea.  If you go to those links it may show you a bit more. It was something that truly knocked us for a loop. We had to take it one day at a time, we still are and will be for a long time. I honestly don't recall much till the next morning it was in Gods hands.

Aaliyah at 3 days old

I woke up that next morning (Sept9th) and up to that moment had decided to not breastfeed. My body had other ideas. The milk was STREAMING out of me. I was soaked! A nurse asked me if I was sure I didn't want to try and pump. See if it would interest me, I said why not. I was producing so much that Aaliyah needed no more formula. I called a friend who came in and calmed me, she works with special needs kids.

I can't recall the first time I went that day but between the pumping and seeing her face I knew we were not giving up without a fight. She made it this far and she wasn't ready to give up.

The NICU staff  at Hartford Hospital was so amazing, supportive of ALL our needs. I could gush all day long about them. They taught us to do everything she needed, temp, all the little cords, feeding tube. Literally everything, they have rooms available for parents to stay in. So we never had to spend a night to far away from her. She was off the oxygen within a day, feeding tube came out but went back in. We were waiting on just one thing for her to be able to handle her feeds all alone. After about two days of taking almost her entire feed they said let's try and take it out to see how she did. She did amazing started upping her feed all on her own. On Sunday the 16th we started watching videos, and preparing to take her home, that night we stayed in a special room in the middle NICU, that Aaliyah is able to stay in the room with us. She was still hooked up to monitors when asleep but it was our own special little world. The nurse helped Rob give her a bath for the first time. At the 6am feed they said they would take her and perform her car seat test. We woke up at 8:30am and freaked why had they not called for us. Out we pop and the news we had been waiting for she could go home she was eating on her own and was up to 4lbs 11oz after dropping down to 4lbs 5oz.  There would tons of follow up appts but after 11 long days she was coming HOME!

Swaddled Baby

Room In

Room In!

NICU Time Line

Day 1
There for monitoring and MRI
Day 2
Nasal cannula and feeding tube go in
Day 3
Nasal cannula out
Day 4
No changes
Day 5
Aaliyah took out the feeding tube and we decided to see how she did with out it. If she did well she would go home in a day or two.
Day 6
Started tiring during feeds.
Day 7
After a few feeds she was tiring out to much and the feeding tube was back in. She would take as much as possible from the bottle and finish the feed with the bottle.
Day 8
No changes
Day 9
She was taking almost the entire bottle every feed since the night before.
Day 10
Feeding tube is taken out to see how she does. That night we roomed in with her.
Day 11
She continued to take her entire feed and wanted more. Rob gave her, her first bath. We roomed in with her.
Day 12
At 6am she passed her car seat test and when we came out we were told she was coming home!

Car Ride Home

 In her bouncer                                                            First time in her bassinet

 

First day home!