NFP - Neonatal Follow UP

The state does a Neonatal Follow up program for infants that spend an extended period of time in the NICU and have special needs and attention. This Thursday it was Brinleigh's 3 month follow up. You go and meet with the different specialists to make sure all her needs are being met.

Her appointment was at 8:30 am.... Off we go.

First off we met with the RN: The basics - Get her down to a dry diaper....

Weight - 11 lbs 14 oz. (wahoo)

Height - 21.5 inches (yay)

I was dying laughing cause she totally peed all over when she was on the scale! She was swimming in it! Clean up in room 1. haha.... first station we were happy, she had gained 14 oz since her last appointment and grown! We will take it!

-Dietician

So from the time of leaving the nicu they would have liked to haved seen her gain at least 20, she was a little under she was at 19.5. Dang girl pretty good if you were to ask me! We went over her eating, or should I say drinking, haha, and she was happy with her progress! We had the little plateau about a month in a half back when taking out all her fortification, but since has picked back up and gaining really well! She is on a upward climb and nothing needed to be changed! Yay (cause you would be fighting me to change anything there)

-Audiologist

This one was pretty funny to me...

We met with the Audiologist next and she asks me, so do you have any concerns, my response was No, I think we are ok (while thinking Yes but we are working on it now... so no). She then proceeds to ask me the following questions.

1) "Does she react to your voice?" - Well, No

2) "Does she turn and look if she hears loud noises?" - No

3) "Did she have Menigitis?" No

4) "Did she have anything else like CMV?" Yes, she has CMV

5) "Why did they test for that?" -Cause her hearing loss.... "Wait WHAT?"

The lady had no clue Brinleigh was deaf! I then proceed to tell her that she has had two ABR's done and didn't pass either, and that's why they then tested her for CMV. She sees an audiologist, she has hearing aides. She then says well sounds like there isn't anything I can do. She just laughed and said I wondered how you weren't concered if you answered no to those questions. I said because I already know why. It was funny! :)

- Pediatrican

Next up the Pediatrican... at this point we had waited in between specialists for awhile, and Brinleigh had fallen asleep. The Dr says well I will let her sleep cause her next appointment she will have to perform... She then asks me to lay her down, I do, she then pulls out the (name ?) thing they test there reflexes with on her knee and knocks on her Brinleigh's knee, and BOOM the devil was awaken. Brinleigh screams, and she does so much that she has a lovely blue spell. The doctor then asks if this is normal... Well it was when she was in the hospital, but they have totally mellowed out. She only has them when she's extremely upset! Which you just took her by surprise and pissed her off! She then proceeded to say that sometimes heart problems can cause that, so we should follow up on that. Other than that things were good on that end.

-OT/PT

Next up the therapist! Brinleigh had fallen back to sleep after her "moment" and we waited a WHILE for this one, but it ended up being ok, cause she got a good nap in.

We enter and time to wake her up, I tell him I hope she does ok, she can be difficult when we wake her. Well she woke up happy as could be. He says you know I have 3 boys and kids are great at making us parents look like liars, I just laughed, it's so true. We then proceeded with her evaluation, he laid her on the floor and she did GREAT. She followed all the toys from side to side, she got excited when a new one was in her line of sight, she used both legs & arms. She brought her hands midline and to her mouth! She was right at the 3-4 month level! He did suggest more tummy time, to get her moving along in the right direction, and showed us a few other ways to do tummy time, that's one we will need to work on. He was really happy with her and what he saw! He also voted her the most adorable and Best dressed baby of the day!! ;-)

So overall, it seems like we are heading in the upward right direction!! Wahoo!

Be Mine!

Happy Valentines Day!!!

Speech Therapist meeting...

Today we met with a speech therapist, another person that we will need to work with for Brinleigh. The appointment was a consultation whether she will be accepted for therapy and the therapist is another person that has to give approval for Brinleigh to be eligible for Cochlear implants. We had three pamphlets of questions to go through to see where Brinleigh falls developmentally. For a 7 month old she is behind, but when you correct her age to 3 months (which she should be) she is still a tad behind on somethings, right on with others, and maybe even ahead on a few things as well (such a mix). We will get the exact results when we goes through and "grades" them. But according to what we went through she did qualify for both, therapy & in her opinion Cochlear's, so she will send her referral in to the Cochlear team.

I was actually a little worked up after this appointment that I had to wait to make a post or anything about it, cause originally it would have all been negative, angry & emotional. Now that I have soaked it all in, I just have to remember to take things in and not let them get us down. It's just hard when all the time you are told that your child is behind. It wears on you, but I just have to take a step back and realized we are working on it all the time!! Her other therapists have always said that she is improving, yes behind but that's why we work with her all the time!! We are doing everything that we can to help her. She did spend 5 long months fighting to just be here, and I have to remember just how far she has come! Yes we still have a long road ahead of us and there is work to be done!

We will continue to fight with Brinleigh each and every day to encourage her, push her, and help her in any way we can! She is the most important part of our family! And are so blessed to have her! Love you Brinleigh Boo!

Happy Birthday to DADDY...

Happy birthday daddy!! So another year older for the old man. We feel like lucky girls in our house to have him in our lives!! We love you DUST!!

We were able to spend the entire day together! Daddy took off work so that he could go to my next audiology appointment. This time at the audiologist Daddy and I got to go into the booth for the first time. So in the booth there are speakers on each side, with a tv screen above them. The audiologist would say my name on one side to see if I would react to it. Then daddy would turn me towards the side it was coming from and then it would be re-enforced with a cartoon on the tv. I was really happy today and did cooperate with it. I was thrilled with the tv screens and was really alert. This was a big training time for me, cause if I can hear these amplified noises they are teaching me how to react to them. It's a process we all have to learn ;) I also got my new right ear mold and it fits much better, actually stays in. So this time we did the left ear. It was a successful appointment. We have to keep the hearing aides in as much as possible!!
After the appointment we all headed home and enjoyed having daddy home to cuddle with!

Once again Happy Birthday to Dustin, the first birthday as a daddy!!

Superbowl!!

Ok, we all know the outcome of the superbowl but we here in the Jenkins house were cheering for the Patriots! I told Dustin to dress our Brinleigh, this is what she came out in... he said her outfit was picked to be patriots colors! ;-) haha... Dust always said he couldn't wait to watch a game with her.. Well the wish came true! Daddy daughter snuggle time!

Brinleigh's First visit to Maeleigh...

We took Brinleigh to Maeleigh's grave this past weekend for the first time. I have wanted to take her so many times but didn't know if I could handle it to be honest. I always breakdown when I am there.
And it was emotional just like I knew it would be. It's so hard to have one of my precious baby girls in my arms snuggling her so tighly and the other I could only imagine how that would feel to be doing at that exact moment. I miss her so much every single day, and still don't understand why she had to go. But I know that she is in a beautiful place, looking down on us and helping us to be strong and push through the hard times. I really feel so lucky and blessed to have had the moments I did with her, from carrying her in my tummy to the heart breaking moments of holding her tiny fragile body as she passed. She really was our ANGEL from the beginning.

I love you little miss Maeleigh, I dream of you often and miss you every second of every day!

Did she gain!?!

Today we went to the pediatrician...

The big question was is she gaining weight?

Well the verdict is in... She did gain some.

She is now exactly 11 Pounds!

She gained 9 ounces since her last appointment about 2 weeks ago. The Dr. was ok with it! So that's good. She is now eating 4 ounces each feeding and eating every 3 hrs during the day. We are all just happy she's back on the upward climb without having to add any extras. She also got her next months Synagis shot! Oh the poor girl!

She was really good at the doctors today. She didn't cry when weighed, she didn't cry when he was examining her... BUT BOY did she freak when she got that dang shot!! She turned blue, and I think passed out, she was just exhausted afterwards and had a little glaze in her eyes. It takes her sometime to regain her oxygen levels after that! :( The Dr. always asks how her spells are... and I always say stick around for these shots and you can experience them! But really those are the main times she has her major spells now! We hope that can improve.... They are freaky!

Overall it was a positive visit. Weight gain check, lungs sounded clear check, ears good check, another protective synagis shot check!

Learning the little things...

Today we have our weekly visit from OT/PT Early Intervention. We worked with Brinleigh on the floor FLAT on her back and on her sides. She tolerated it really well, and was happy for us! We are to try laying on her sides and stretching her hips and legs while we play. Brinleigh is always starting to show interest in a few toys! The gal today states "I'm just loving this right now, She's such a different baby!"

It's true! :) She has come such a long way, and improving all the time!

I had to put these cute pictures up, I just can't get enough of her smile! Her jammies say it all "best gift EVER"

Here's an interesting detail we learned today:

At birth, the human brain contains about 100 billion cells not yet connected into functioning networks.

By age Three, the childs brain has formed 1,000 billion connections!!! (WOW)

Brain connections formed during the early years of life become the foundation for the childs thinking and learning. The development of these connections is shaped by the childs early experiences.