Hi, everyone! Glad to be back! Alaina has hit a very big milestone and has finally turned ONE! Its so bittersweet seeing her grow up, but I couldn't be any happier with the progress she has been making. This past year was hectic, but full of happiness, joys and tears... and a lot of work at that, but it has all been worth it! It sure has been one heck of a journey, but this kid has changed my life. We have learned so much from each other, and I wouldn't change a thing. Here's a little recap of Alaina's big milestone and party 💕 It feels like just yesterday she was born, like if just yesterday she was in the NICU. I still remember each day spent there. Every time we go back to the hospital for doctor visits it brings back so many memories. The NICU was the main place I gained knowledge on how to take care of a baby. Things I thought I would have trouble learning, were easier in the NICU with the help of experienced nurses. (Its crazy because before Alaina was born, that was a big fear I had, not being able to take care of her, but EVERYTHING happens for a reason) I also left a stronger person. A different and changed person.. Its not easy being a teen mom with a child that has a deficiency. Its not easy but its not impossible. As a parent to a challenged child there is more than just changing diapers and making bottles. I have to keep up with so many doctor appointments, specialist, medications, making sure I'm giving it to her at the appropriate times. Applying a lot more stimulation, a lot of one on one time. It's so much to do, so I applaud those parents going through the same thing. We don't always get recognition, but you parents are appreciated and our babies will appreciate all that we have done for them in the long run. As a mom now with Alaina's condition, or any child with a deficiency or developmental delay, if their isn't one thing I haven't learned is to do things now that they are young. Parents make sure to speak with your child's pediatrician or specialist if you have concerns with your child's development or if you feel they will be or are behind. Get a referral to the ECI (Early Childhood Intervention) or any developmental program. The sooner the better for them. Alaina has been seen by a occupational therapist since she was about 6 months old. They come out to to your home a couple times a month depending on your child's delays. They have therapist for everything. Alaina is now being seen by 2 vision teachers who comes out once a week, also including her occupational therapist who comes out twice a month. When she begins to speak they will have a speech therapist to come out and help out as well. They help with things your child is delaying in and also give lots of tips and tricks! All her therapist are extremely impressed with her and her development. She is doing great and even better than other kids her age. As of now Alaina is on whole milk, no more formula. We're transitioning to solid foods, mashed potatoes and fries are still her favorite, but she eats soup, eggs beans and other things as well. She crawls a little bit now because she is beginning to walk. She literally walks falls down gets back up and walks. So shes in between but she sure tries! She claps, she makes a silly face when I tell her to say cheese. She holds her own bottle, Travels objects from one hand to the other Grabs things and sometimes tries to put them back where they were Holds her hands out when she wants to be carried Her vision has improved as well She mimics a lot of things that I do She has 5 little teeth, She loves to play, be independent and is very fearless She still fake coughs and sometimes she does it for attention haha and she has a personality of her own already She is currently weighing 17 lbs & about 2 oz. Still small for her age but she's balancing it out with her height at 28 inches :) Thank you everyone for staying updated with Alaina!
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As of now Alaina is crawling She leans up against things and picks herself up. She stands up on her own She travels alongside furniture and in her crib (She'll be walking pretty soon) She claps, and claps when I say "Yay." She sticks her hands out when she wants to be carried (sometimes) Shes a very good listener and understands certain things when I speak to her. Her eye sight has improved tremendously. (Her eyes shake less, although she does tilt her head sometimes still) She plays with her toys although she prefers my lipsticks She is super active! She fake coughs when she wants attention (haha) She loves doing spit bubble wars with me She loves mashed potatoes/fries & She finally has a tooth growing! She is still on the same medications,
taking hydrocortisone every 8 hours, 3 times a day. Still taking her growth hormone injection once a day, every night. She might be taking another medication as of right now because her thyroid level lab results came back lower than normal. (She had her thyroid checked before she was discharged in the NICU, and it was okay then, but as of now since she is growing, it not keeping up with her, as the doctors explained) She is being seen by the Early Childhood Intervention program, where a therapist comes out 2 times a month to work on her development & things she's behind on. Currently working on getting a vision teacher and speech therapist to come out as well! When Alaina was in the NICU I was there every single day. I became familiar with the parents and the babies around Alaina's bedside. When Alaina was transferred from NICU level 4 to NICU level 2 (less intense) I met a mother across Alaina's bedside whose baby had the same diagnosis as Alaina. He was a baby boy, a month or so older than Alaina. Hypopitutarism, Adrenal Insufficiency, same things as Alaina but the baby had the thyroid deficieny but didn't have the nystagmus or Optic Nerve Hypoplasia (with the eyes) that Alaina has. When I was getting to know the baby and the mother I asked her how she found out about her baby's deficiency. She explained to be that her OBGYN had told her while she was pregnant. (Here's the story with me, My OBGYN told me Alaina was completely healthy, he never mentioned the Hypopituitarism to me) So just imagine how I felt when I came to find out about her diagnosis. It was crazy to know that there was another child with the same diagnosis, lying across my daughter. The day her baby was discharged I quickly asked her for a number so we could stay in touch and see how our babies are developing. I have her on social media, so I see pics of her baby almost all the time. We keep in touch, we're always checking on eachothers babies. Checking on all the appointments and how they are going, especially with there specialist, the endocrinologist and other specialist as well. Its always great to get a different perspective from someone else experiencing and going through a similar situation. Its great for comparing there development and also seeing what similiaries they have in common. Hello everyone! Sorry I haven't posted in a while! I have been busy with college as the end of the semester has been approaching and of course being a mommy to Alaina! Alaina is now 8 months old! Yes, I am still in shock and can't completely believe how fast time has gone! As of now she is sitting up on her own, she craws sometimes, she is already trying to stand, she leans up against things and tries to hold herself up, shes already eating baby foods although she does prefer her bottle, She is super active! I can't keep my eyes off of her for a second Shes teething now She understands a lot more when I talk to her Her vision is getting a lot better (She sees a lot more) -Thank God As of now Alaina is enrolled in the ECI (Early Childhood Intervention) program She is being seen 2-3 times a month at home by a specialist to work on her development as she is growing. As of right now we are working on holding her own bottle, saying mama & dada & crawling :) If anyone has certain things they would like to know or for me to cover about Alainas development, feel free to leave suggestions or comments!
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! |
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. |