Alaina had an ophthalmology appointment back in late February. Her ophthalmologist was very impressed with her vision. She was 5 months when she had her 1st eye check up, she was not making any sort of acknowledgement, she could barely make eye contact. Last month she was 11 months when she had her 2nd eye check up and she has improved tremendously. So parents don't lose hope! A lot of stimulation and hard work helps as well, just don't lose faith so quickly.
Her ophthalmologist recommended for me to put a patch on her stronger eye (left) and work on improving or making her weaker eye (right/since she can hardly see out of it) and making it stronger!
: For about 2 hours a day.
I honestly never knew how bad her right eye was til we tried the eye patch.
It really made me sad seeing her this way because she kept running into things, she didn't want to move, she just wanted to stay in one place, she always wanted me next to her or holding her hand.
She was afraid, but we kept trying at it, she kept trying to take it off but we kept working on it. The first day we did 45 minutes because she kept getting frusterated. Which is okay for the first time, just got to boost it up to another hour atleast or try again later to get those 2 hours in.
Another cool trick if any parent is interested in trying the eye patch is putting it on while they nap. I tried this with Alaina and she did great. Putting the eye patch while she was awake made it easier for her to know it was on and easier for her to try to take it off.
So when I tried this on Alaina, when she woke up she had no clue it was on. She went about crawling, playing with just a little caution but she did even better, and she had it on for the whole 2 hours when we did it this way.
I would advise those parents to ask your child's opthomologist if it's a good idea to try this out! Good luck everyone! :)
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!
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!
As our kids get older, they become wiser.
What scares me about the future is thinking of all the kinds of situations Alaina is going to encounter.
Right now she is still too young to understand the reason for things, so when I give her, her medications she never throws a fit, she doesn't cry, but because she's not aware of what exactly is going on.
The future is right around the corner, so why not start taking the future into consideration?
As far as when she begins going to school.
Is she going to be alright, taking her meds?
Is she going to be in the same classes as everyone else?
Is she going to learn at the same pace as the other kids?
Is it going to get harder to give her, her medications?
Will she panic, throw fits when I give her her injections?..
Is she going to compare herself to other kids when she realizes she's a little different?..
Is she going to become used to it?
Every child is different, so only time will tell.
But if their are any parents out there experiencing the same kind of situation with their child or experienced it within themselves, it would be beneficial to leave some knowledge or advice for other parents and I to know what to expect in the upcoming future.
Alaina is now 6 months, and as of now she is developing as any other kid would. She has been completing the necessary milestones.
She rolls over ( back & forth )
She touches her toes
She sticks her fingers in her mouth
She grabs any object near her
She grabs & shakes her toys around
She laughs, she smiles
She kicks her legs a lot
She talks a lot : babytalk (I speak to her all the time)
When she eats baby food, she does chew (even though she doesn't have teeth)
She cries when she's hungry (sometimes)
She hears very attentively
She sees, but very limited due to nystagmus (her eyes shake unvoluntarily, can't focus on an object) & ONH (Optic Nerve Hypoplasia ;underdevelopment of the optic nerves)
She is starting to sit up on her own (sometimes she sits up straight, sometimes she holds her head in unusual positions/facing down)
Every child is different and and they are going to grow and complete milestones at their own pace.
When it comes to weight, Alaina is underweight.
When she was a newborn to 2-3 months she always had feeding problems. She was on similac advance since birth, but over time she grew a tendency in spitting up her milk (throwing it up) & also diarrhea.
We found the solution to that issue, her pediatrician changed her formula, to similac for spit up (it's a thicker formula) & has been great ever since!
Ever since we changed her formula, she eats a lot more, but she hasn't really gained weight..
Today Alaina received her 6 month shots & of course they checked her vitals.
For a 6 month old she weighs 12 lbs 11 oz.
The normal weight for a 6 month old is a about 16 lbs.
With that being said Alaina still fits into 0-3 months clothing, but is currently wearing 3-6.
Alaina being older, you can still see the difference between the two.
Height wise, she is 25.2" long.
Normal height for her age is between 25"-26" long.
So she's growing just fine!
Due to the underdevelopment of the pituitary gland, Alaina's eyes have been affected. Her eyes shake uncontrollably, (not a lot but sometimes). They wander a lot, and she can't really focus on certain objects for a long time.
You can't really notice until you pay close attention.
She does have Optic Nerve Hypoplasia (ONH) in both eyes, but it's more severe in the right.
Her opthomologist, has been checking on her since she was in the NICU. So they always noticed her left eye reacted more than the right.
As of now she is too small to tell how much vision she has, but we do know she has little.
It gets sad over time, because I wish she would look directly at me. Although in the picture her left eye seems to be looking right at me, her right eye is hard to tell.
She does hear great, so it helps balance the situation out.
She does follow my voice, so she usually turns her head into the direction in which she hears me.
But over all, she's developing well. Thanks to God!
Aslong as she never forgets to give me a smile! :)
5-6 am: (depending on last feed), I wake up my daughter (Alaina) for her first feeding / Change her diaper.
She feeds every 3-4 hours : 6-8 oz
8am: She takes her first dose of hydrocortisone (1/4 of a tablet) / Change her diaper
She takes hydrocortisone every 8 hrs, 3x a day.
9am: Feeds again, goes back to sleep.
11am: Officially wakes up / Change diaper.
Eat. Play. Sleep. Repeat
4pm: 2nd dose of hydrocortisone (1/4 tablet)
Eat. Play. Sleep. Repeat
9pm: Growth Hormone Injection : (Everynight)
I always sanitize/ wash hands before
12am: 3rd dose of hydrocortisone (1/2 tablet)
Since my daughter is also hypoglycemic (low blood sugar). I often times do check her blood sugar/glucose. I used to check it every 12 hours : 6am & 6pm. Since it has been stable, endocrine suggested I check it every couple days or when I feel the need to check it.
everyone, for those who are coming across my blog for the first time, I'd like to introduce myself. I'm an 18 year old young mom from Houston TX, living with a 5 month old baby with a rare condition. My daughter is diagnosed with hypopituitarism ; adrenal insufficiency. As well as other things that come along side with this diagnosis. I made this blog to write about what I'm going through, how I'm handling my situation, as well as to be able to relate with other parents who are experiencing the same thing with their child or within themselves. You are NOT alone. WE are not alone.