I have a lot of stories to tell from the NICU, that I would love to share with everyone ! Every now and then I will share a few! When Alaina had graduated from NICU level 4, she was then sent to level 2, which was less intense. She was on the path to come home, she just required more feeding on her own without the NG (Nasogastric) tube through the nose. After a couple weeks in level 2, the doctors suggested I look into getting a G tube for Alaina, since the NG tube was temporary and Alaina seemed uninterested to eat. A G tube is a tube that can be surgically done in the stomach, where you can attach a tube to it to feed children with feeding difficulties. I remember looking at this picture and thinking of all the things Alaina wouldn't be able to do.
I just ran a list of things I could imagine struggling to take care of her with the G tube. After days of thinking and talking with my family over the whole situation, everyone was starting to lean more into saying yes. Therefore, I was starting to feel as I should lead Alaina into this procedure. "Its just temporary," they said. "You can remove it when she can eat enough." "She can come home sooner" I thought, without thinking of the time it would take for her to recover from this surgery. When I was starting to second guess myself, the doctors asked if I wanted to meet a mother whose child had a G tube. Therefore, I met with the mother. I met the baby with the G Tube. The baby was almost done recovering, and was going to go home the following thursday. We had chatted for half an hour, she was telling me how the G tube works, how to clean it, how to take care of it and that it was very discrete so I wouldn't have to worry about what people would think. She made it seem as if it was pretty easy. At this point I couldn't decide what to do. I went home that day, spoke to my boyfriend about it. The nurses had even printed out some G tube papers for me to look over and study. The next couple days, the doctors would ask me what I was thinking of doing. if I wanted to follow through with the procedure, or what were my thoughts as if this point. All I could say was "I just want to give her more time." I know they were getting frustrated but I didn't want to lose faith so quickly. After days sacrificing, struggling and being their at her every feed to feed her, Alaina was starting to collaborate. At the time Alaina was required to eat 3 ounces (90ml) every 3 hours, and Alaina was finally catching up. After only taking in 20ml or even 40ml the most, Alaina was finally starting to take 70, even 80ml. She was starting to finish her whole feed, sometimes even more than she needed to take in. It was a miracle, I was so thankful. I was just in disbelief, I never thought she was going to turn the situation around. All I could think was GOD. I asked him and prayed to him to send me a sign.. He sent me a miracle. I will never forget this experience. Now because of God, Alaina doesn't have a G tube. Because of God, Alaina was sent home 2 and half weeks later. NEVER LOSE FAITH!
HOPE IS AROUND THE CORNER!
2 Comments
Michele
12/19/2016 17:54:40
Hi, my name is Michele and I just want to say your daughter is soo beautiful!! Soo adorbale!! I am so thankful to of found your blog. It has given me so much support and awareness. I have a one month old baby girl named Alysson and just found out she has Hypopituitarism and optic nerve dysphasia. I am taking it really hard and I am so upset but your blog has made me feel at ease and gave me an understanding of babies with this condition. I just want to say thank you. Your blog is so informative and detailed. It's so pretty too love her pictures.
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Melissa
12/19/2016 18:06:47
Aww thank you so much Michele! I'm so glad I'm helping someone out! I been there & I know exactly how you're feeling if you need any advice or have questions feel free to email me [email protected] :)
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Hello, everyone, for those who are coming across my blog for the first time. I am from Houston Tx. My daughter was diagnosed with hypopituitarism, adrenal insufficiency as well as other deficiencies. There are so many things that result from these diagnosis. I made this blog to share my experience. After the years I have learned that these conditions are more common than I thought. You are NOT alone. WE are not alone. |