Home Sweet Home!!! ... Finally!!!

Gabi is finally home!!! She was released on the 26th of April and it wasn;t one day soon enough! It hasn't been as easy as I thought to update my blog since shes been home mostly because I want to spend every moment with her! She has filled our home with a spirit that I had felt was missing since the day she was born. The last few weeks at the hospital have been frustrating and long to say the least! Gabi went from being the sickest baby in the NICU to the healthiest! Which was a good thing other than they wanted to kick her out of the NICU and over the the Infant unit. There were many things that were good about the Infant unit, they had TV's, we could spend the night if we wanted and they were alot less strict about vistitors coming. They biggest downfall for me was all new Doctors and Nurses who knew nothing about Gabi and her situation. They hadn't seen her at her worse and seen how far she had progressed. It was like starting over again, explaining everything and hoping that we liked their care. We were so close to going home all she needed to do was eat already! At the beginning they said it was my decision if we moved... and a few days later they gave me no choice... they needed the bed space for other kids. I was a little sad but I understood. The doctors and nurses were very good to us and I knew that they had other sick kids to take care of.

The first day at the infant unit wasn't too bad, My mom and I were together and we had to go on a hunt throughout the hospital for gabi but we eventually found her. She had her own private room with tv, and a bathroom! haha! It was nice to have some privacy but it didnt last long cause Gabi was moved again to a shared room with one other baby.

The Infant Unit was alot different and we had more time to actually take care of Gabi ourselves which was nice. We bathed her when we wanted, which she loved cause they actually had a baby bath tub... the NICU used the throw up buckets and she was freezing the whole time. It just wasnt big enough for her.

SPA TREATMENT!!!

On Friday Gabi Ripped out her feeding tube again... Gio and I convinced the doctor to let us keep it out to see if She would eat better without it. We both knew that the tube in her throat was a big reason she gagged and threw up, The Doctors say its because she has Reflux... which she did test positive , but I know that the tube made it worse. Her first feeding without the tube she drank the ENTIRE bottle without gagging or puking!!! I knew it! so with the next feeding we tried again and guess what.. She ate it all again!!! Gio and I decided that we would spend the night with her to feed her for a few reason... one she eats better for us... and two we had a strong feeling that as soon as we left the nurse would shove that tube back down her throat!!! As the night went on Gabi ate about 2/3 of her feedings. She had an adverage of about 88% The nurse that night was annal... Gabi didnt eat 4cc's on one feeding and she had to add it to her next bottle... to give you an idea of what 4 cc's is its about half a nipple full. She wanted to put the tube back in after her not finishing 4 cc's! I thought that was crazy. as the night went on the nurse was bugging me more and more at 4:30 in the morning she came in and said the Doctor wanted us to put the tube in before her next feeding. My blood started to boil. She was eating 88% of her food in the middle of the night... she was tired.. she didnt want to wake up and we thought it was nonsense to force her to eat more than she wanted to anyway. We felt like they didnt give Gabi the chance to tell us what she needed, I was also pissed because the doctor who wanted the tube back in hadn't looked at her chart, knew nothing of her history, and never bothered looking. We called her in to talk to her because we felt that Gabi was progressing so much and by not giving her the opportunity to tell us what she needed wasnt fair. The doctor agreed to let us keep trying until the next morning.

The next day gabi slept nonstop until about 3:30. Bugging her all night long and keeping her up pretty much knocked her out. she doesnt like to eat when she is sleeping... niether do I! I felt like hope was running out. I was exhausted frustrated and I felt helpless. I felt like time was running out, she was scheduled for surgury on Tuesday to put in a G-Tube. I thought that was the best option until I saw her eat without that tube, I didnt want to put her through a surgery that was unnessacary. As the day went on she was eating less and less. I was at the end of my rope, I needed to go home and sleep but I was worried that they wouldn't respect my wishes. I started to feel frustration toward Gabi and I was angry that she wouldn't eat for me. I left the room for awhile and sobbed my eyes out. Mainly because I felt guilty for taking my frustration out on my daughter who I was force feeding all night long. I felt like she was made at me. I wanted what was best for her, and at that moment I realized I was being selfish. I wanted to be able to bring Gabi home as a normal baby with no tubes and no more surguries. I needed to put my faith in the God and relax. No one wanted Gabi to be stuck on the tube, The goal was to get her off of it.

That night I prayed and prayed to know what to do. I didnt know how much more I could take. I was physically and emotionally exhausted. I knew Gabi could eat fine, she had proved it. I was frustrated that everything at the hospital was based more on science and not on the actual needs of Gabi. She was to eat every three hours 66 cc's, whether she was hungry or not. I knew that if we would let Gabi make her schedule and tell us when she was hungry, she would eat. If I were breast feeding her there is no way of knowing how much a baby is actually eating... they eat until they are full, and you feed them when they are hungry. I just wished that they would let her at least try that. They worried about dehydration, and her loosing weight, a legitament concern but one that could be monitored closely. Sunday Morning we woke up early to be with Gabi and we wanted to talk to the doctor. We felt worse and worse about the g-tube but we also felt that was the only option they were giving us. when the doctor came in to talk to us she was very understanding. We discussed our concerns and why we were frustrated. We ask her what our options were and if we could cancel the surgery. I didn't want to put that feeding tube in her nose but at least I could take it out myself! We also asked what the timeline of taking her home would be, we still had no answers up to that point everyone just kept saying its up to gabi.The doctor to our surprise said that if we took her home with the nasel feeding tube it could be as soon as that afternoon!!! We were totally shocked! I wasnt expecting it at all and it was finally happening... We would finally be able to take Gabi home!!!!

Gio and I decided to wait to take her home the next morning to make sure we had everything ready. It had been 6 weeks and our house was not baby ready! That night we scrubbed the house and prepared for our little girls arrival. We didn't sleep much, it was worse than the exitement you feel on christmas eve as a kid. I was excited, but also very nervous. I was nervous that we would get to the hospital and they would change their minds, i was nervous that I was becoming her full time parent, I would be the one calling the shots. But I was so excited to have her fill our home!

We arrived at the hospital around 10am.Before she could be discharged the doctor had to come by and take to us, she had to have a hearing test, and we also had to be sure that we were taught everything about putting in the feeding tube. We each had to practive it. It wasnt so bad, the worst part was holding her down and watching her scream, other than that it was easier than I expected. The whole discharge thing took forever!!! It was past 4pm by the time we actually got to leave and we couldnt get out of there fast enough!

My Mom and Sister Brittany were waiting at my house and decorated it for us! It was a great welcome home surprise!!

It wasnt't long after we got home that Gabi wanted to eat. She gagged on her tube and puked a little so we made the descision to pull out that dang tube! And she ATE JUST FINE!!! no puking or gagging! We had supplies in case she really didnt want to eat but we wanted to give her time and let her make her eating schedule.


So far her eating has been going great! We took her into the Doctor one week after she came home and she had gained 1 oz! its not much but she didnt loose any and that means she is eating enough to not have to use the tube! We have watched her eating carefully and measured out her food daily so we can track it and make sure she is getting what she needs. She is now 8 weeks and only 8 lbs 9 oz and 20 1/2 inched long, she is still a little bug! ( I know she look much bigger in pictures!) In some ways I'm really glad she is still so small because it helps me not feel like I missed out on her first 6 weeks as much.


Gabi is an awesome sleeper! She sleeps at least 6 hours straight every night! I usually feed her around 11 or 12 and she wakes up to eat at 5 or 6! She goes right back to sleep and sleeps till about 10! She has my kind of sleeping habits! its been great cuddling every morning and being lazy together! I wish it could last forever!



Being home is everything I thought it would be and more! Gio and I often just watch Gabi and can't help but feel grateful for her! We sometimes forget that she has Down Syndrome because she is such a normal baby. She has a very distinct personality and she already knows how to get whatever she wants! She likes to have attention but at other times wants nothing more than to lay on the floor and kick! She has good balance for the most part! Our schedule is starting to work better and better each day, but i still dont seem to have enough time in the day to accomplish what I plan! (this post has taken me two weeks to write!) I can't complain though I wouldnt change her being home for anything, afterall we have only been full time parents for 2 weeks! We are getting the hang of things and we love Gabi more than ever!