Come on summer!!

This Girl is ready for Summer now!!  We got Brin some CUTE shades, hoping that maybe she will like going outside more if she can open her eyes. :)  She sure thought she was pretty stylish with these on, what do you think!?!  *Adorable if you were to ask me!! *Love the al-fal-fa too! ;)

Ok WARM WEATHER we are so ready! (never thought I would say that out loud).  Cold/Flu season PLEASE go away!

April Pediatrician visit...

We headed in to the pediatricians office again this month. Brinleigh got her synagis shot for April! :( I hate seeing her get those shots, and she doesn't like getting them, she always has a blue spell. She calms a bit quicker now though. ;) as sad as it is to see her get it, they are wonderful to help protect her lungs during the rsv season. It's been a later start this year, it's usually winding down at this time but they said it's not this year. It's lingering and could go into may and June. :( let's hope not!

Brinleigh is doing wonderful with her weight gain still! She weighed in at 13lbs 10oz. She's still not on the charts for her "age" but when you adjust her age she does hit the charts and is about the 25th percentile.

We talked about starting solids, but decided to hold off. We will have to talk with her kidney doctor as well when starting solids due to her stones, she may have to have a specific diet. Along with her Sensitive tummy and intestines and since she's gaining weight why rock the boat just yet! Maybe next month we will revisit this again.

But overall she moving in the correct direction! ;-)

Happy Easter!!

Brinleigh's first Easter!! Our day was wonderful!! The Easter bunny brought her a basket with a few goodies. She looked adorable in her little dress I couldn't stop taking pictures!! She is such a little diva, I love it! She cracked me up, I put her next to her basket for a few pics, And when she noticed she just kept kicking it. ;) I also a pic of her adorable pouty face, she has that face down!!

I Love this little girl!

Specialty Care Doctor/ Rehab & Pediatrican appt

Today we went to our first appointment with the specialty care doctor. We went over EVERY single thing with Brinleigh. I really like this Doctor!! I love it when the doctor knows what they are getting into. He knew the In's and Outs of Brinleigh's Nicu stay, the follow ups we have done and what we still need to follow up on. He was so thorough. He was very happy with where she was at! She must have known to impress him. Usually people have to try hard to get smiles out of her. Well he rolls up looks at her and she just starts grinning!! He loved it. He then took her and said wow, I think she's doing great, but she does need more tummy time, she needs to pull her head up. So once again, we need to push her with the tummy! She is so protective of her tummy, I don't know if it's because of the reflux, or if it takes away one of her main senses, cause she can't see anything but the ground! But we are determined to work on this more than what we are.. He said an hour a day minimum. Alright Brin let's do it. So we will go back to see him in a few months to make sure she hits her next developmental milestones, which are rolling over and sitting up. :) He then asked if I had any questions for him... and I said yes!

I then asked do you know much about CMV? He replies, yes, but I don't think it's relevent to you or will help you but, what's up? So I said well at a previous appointment I was told to be concerned about it. He said well to be honest she is not a CMV looking baby. Babies that are born with major CMV problems you see them right away! They usually don't just randomly pop up. So yes keep it in mind, but don't get consumed by it, and don't read online, it will just scare you.

I also asked him how he felt about her head shape, he said I think it looks great, you don't have anything to worry about right now. Most babies aren't on there head as long as Brinleigh but tummy time and just well plain old time will help that. The more she's up the less she's in her head.
It was really reassuring!! And this dr. Was a great resource and very open! This was a good appointment.

St. Patricks Day

Happy St. Patricks Day! 

Hope you all wore your green so that you weren't pinched... Brinleigh and I sure did!

Cardiology

Guess what.... Oh that's right, we are OFF to the DOCTORS again...

Today we went to see the Cardiologist, a follow up for her heart.  Brinleigh has a small whole between the top two chambers of her heart, it's called an ASD.  She also had a tiny amount of Hypertension when in the hospital.  With having an ASD, she may be just fine with it and it may never cause any significant problems, or it may need to be fixed in the future only time will tell.

At this appointment Brinleigh had an x-ray along with an EKG.  She did awesome!  She just laid there while they put wires and electrodes all over her body.  An electrocardiogram (EKG) is a test that checks for problems with the electrical activity of your heart.  Her EKG looked good, didn't show signs of hypertension or that the ASD was making her heart work harder.  But they will keep following her to watch it closely.  We will go back for another evalutation in a few months.  And if needed they will do an Echo, but they would prefer not to unless really necessary, since Brinleigh would have to be sedated and that comes with risks.  I'm glad at this point we didn't need to do one. It's really scary, all the unknowns, but we just have to rely on the professionals that they will watch her carefully and know what's best.  I hope that she will never be effected by it.

Nephrology & Optomology

Today we had two appointments, Nephrology & Optomology.

First up was the Nephrologist (Kidney Doctor) first off they weighed cute little BrinBoo she was now 12 lbs 6oz. Then then put a urine bag on her so they could test her calcium levels again.. they then examined her and tried getting her blood pressure, it never works out. She was really well behaved and extremely happy. She was jabbering it up. When the doctor was looking her over, she says, she is hard of hearing, is that right? I responded yes, she is. the Dr then said wow, I'm surprised at how vocial she is then, most the time they are really quiet. I really hope that Brin never stops her jabbering! I love her being so vocal, it makes me so happy! So, her urine came back looking so much better than the last time, she still did have some calcium crystals in her urine, but not as much as the previous time. She said that if Brin does start crying out and acting in pain that she could be passing stones. :( but to call. But as of now they weren't going to do a ultrasound or any bloodwork since she has been happy and her urine was better than before. So hopefully that means things are looking up in this area! Let's keep improving girl!

Next up the Eye Doctor...Off we rushed from one appt to the next. First off they see if she will follow these black and white pictures around. Well at this point Brinleigh is hungry and tired, and didn't want to be cooperate. I know that she will follow things but she wasn't doing it for them. So next they decide they will dialate her eyes (hate this) So they put the drops in her eyes and off we went to wait. So I was able to sneak in a feeding and she zonked right out!! Which actually made the rest of the appointment a sinch. The doctor comes in and says that one of the things they have to watch for with babies that have ROP and laser surgery is that they can't see things close up, so that's one of the things they will be looking for. Along with other things of course.

So he pry's open her little eyes and takes a looky... YAY - No need for glasses at this point! He said that everything looks good! She's not far/near sided, her retina is attached and all posterior pole structures are perfectly normal! The size of her optic nerves are perfectly normal in appearance. And she fixes on things and follows them, and her eyes are in good alignment. Oh yay, what a relief! We will again have a follow up appointment to make sure they keep developing in the right direction and nothing changes.

So overall these appointments were a success and had good news!!

Urine showing some improvement!

Eyes lookin' good!

Brinleigh did soo good, with having a morning filled with appointments! We got home and had a little photoshoot, her faces cracked me up!!! She's full of it! :)

HAHA, these make me laugh!!

Brin's jabbering....

Here's a little video of Brinleigh after her appointments jabbering... I love it!!

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.

Bath time!

Brinleigh loves her bath time... Well at least until she has to get out and gets cold then she gets ticked!! We had fun splashing and lounging in the warm tub this morning! She got an extra morning bath cause she puked all over herself, and ya that's a stinky girl ;) lol Thought i'd share a few pics.

Professional hats off...

Today I had the orientation team back over, and today they told me there personal stories growing up deaf. It's really interesting to hear. And they are both happy with where they are in life and the type of communication they have. It was good to hear. I would tell about there stories, but I don't know its my place to share. But they both didn't let being deaf hold them back in anyway. Now it's time for us to make our decision. I think I know what I want, it's just a matter of what's best for Brinleigh. I think it will come to us. I just have to believe that she can reach ALL goals that we set for her. I know we will be there to help her and push her to accomplish everything. I spoke with a gal today, that has gone through the cochlear process for her little girl as well. She said that it's one of the hardest things they have done, and it takes a ton of work to have them learn and work they way they should. But it's been the biggest blessing for her little girl. She was a few years behind in her speech development, and within 1 year of having her cochlears she has improved 2 full years! That's amazing! So uplifting to hear such wonderful stories about others that have had success.

Smiles & Jibberish

Brinleigh is changing so much all the time! She is really starting to smile and jabber. She has found her voice lately, and we think it's so adorable! We can't get enough of it! It just melts my heart to hear, it really is music to my ears!! During the day when Brinleigh is awake she has to be entertained, she wants your FULL attention! And she will demand it, Are we in for it or what?? :) Another thing she has been sleeping really well, she has been sleeping anywhere from 6-10 hrs a night this past week, it's been amazing, I don't want to jinx it! I hope it stays that way, cause I have to admit, that I need my sleep too. She hasn't been waking up screaming her head off either, I find her just talking to herself staring at the ceiling fan. That's the best feeling having her wake up calm and happy to see me! Brinleigh was taking Melatonin in order to sleep at night, and we haven't had to use this week. She was falling asleep before we were giving it to her, so I wasn't waking her to do so. :) We are moving in the right direction, I just love her daily improvements and seeing her learn new things!

ASL or LSL!?!

Today I left Brinleigh for the first time with My Mom (Brinleigh's Grandma), she came and spent a few hours with her so that I could go visit the preschools of ASL & LSL. It's the next step of our orientation and picking which route we would like to go for Brinleigh's language. First off I went to JMS, which is the school they teach ASL at and they focus on sign language. The other school, was Milcreek which they teach LSL, and focus on Listening spoken language, all kids there have amplification to help them be able to hear. It was amazing! I was really good to see the two different schools and the kids in them. We haven't fully made a decision yet, but after seeing the LSL school, it makes me really happy and excited to see these little kids that have profound hearing loss that are talking just like you and me. I have never actually seen a person with Cochlear implants. It was a good thing for me to experience and see. As I left I felt lots of different emotions. I felt really hopeful!

It's so really touch for me to know which direction to go. I really hope that Brinleigh will be able to pick up talking. But I don't want to limit her by not giving her all the options out there. Is so hard making life changing decisions.... How do you do it?

Immunizations YUCKY!

Brinleigh's immunizations made for not the greatest weekend. Brinleigh went from sleeping really well to not sleeping at all. Which then in turn meant no sleep for mommy! We had a few bad nights, friday I think we slept two hours. Our poor girl had a fever and just didn't feel good. I hate those dang shots. Saturday night she slept a bit longer, but last night we were up from 3 am on... UGH.

OT/PT came to visit this morning. Brinleigh was up and not as happy with this visit. They worked with her shoulders and putting her in different positions for her hips. She tolerated it ok, for the first 15 mins and then she was done. So it was a shorter session. She just wanted to eat, and then was out for a bit (guess she realized she needed some sleep).

The rest of the day was much better than the weekend, I think she was feeling better!! I hope that we can both get some sleep tonight!! And get back on a better nightly sleep schedule.

Stick that tongue out....

Another clip of our Brinleigh, She is really funny with her tongue. She will watch us stick our tongue out......and she does it too! CUTE CUTE CUTE!!!

Wiggles

Brinleigh is starting to really love her projector, she lays there and just kicks her legs and flings her arms around like crazy! It is so fun to watch her! It Puts BIG grins on our faces!! Daddy and Mommy are thrilled with her, this video is a little dark and long. But hope you enjoy it as much as we do!! I can watch her for hours! :)

Pediatrician Visit....

Friday January 20th we had our next visit to the Pediatrician, this was her 6 month check up.

Brinleigh's stats:
Weight 10lb 7oz
Height 20.1 inches
Head 14.5 inches

So when she is compared to other 6 month old babies, she is around the 1% percentile for all catergories... Discouraging a tad. But the Dr. reassured me that I shouldn't be watching the curve of other babies her age, cause really she should only be 2.5 months old. So we just have to watch Brinleigh's curve and make sure that she's on the upward climb for her.

Prior to this appointment she was on an upward climb with her weight, but she has plateaued a bit. She only had gained an ounce in two weeks. The Dr. wasn't to concered at right this moment, considering that she was on 90 Calories a bottle with the rice cereal, and now she is just on breastmilk that they consider being only 20 calories. So he just encouraged us to make sure that we are offering her more and as much as she wants. Just to make sure that she is getting enough and is content. And we will go back in two weeks and see how she's doing. They really don't want to fortify her cause of her Kidney stones, makes it a bit tricky. So I hope that she is just adjusting to the change of no rice cereal, and will start gaining on breastmilk.

Since leaving the hospital she has grown in length about 1 inch....so we hope she starts getting a bit longer too. She is working on it. :)

Also, since at this appointment she is 6 months it was time for her next set of immunizations. Oh the POOR GIRl! Its so sad to see your baby poked, I have seen it may times but it never gets easier. Now, that she is 6 months old she was able to get a flu shot as well. When the nurses came in to give her shots, the nurse comments and says "oh I remember her, she stops breathing!" I said yep that's HER. So they gave her the shots, and the she was screaming, the nurse says, oh at least she isn't holding her breath, right at that moment, Brinleigh started turning Blue and not breathing. Way to freak us all out Brin ~ So not cool! She definately lets you know if she likes something or not. Our little spitfire! I hope she does ok the next few days. Last time she has a fever for a few days andwas so grumpy... a long weekend we may have up ahead.

I sure hope that she starts putting some weight on again.... Come on grow baby grow!!!

Search for a Reason?

So Tuesday January 17th we started the day again with our visit from OT/PT. They are really happy still with Brinleigh's progress. It was a quick visit this week so we didn't do much. They came late and we needed to be to PCMC for her next appointment. So maybe next week we will get more out of there visit.

We then went to PCMC to see ENT/ Genetics for Brinleigh's hearing loss. We met with the first doctor that was really interested in finding out why she lost her hearing. CMV is a virus that we discovered Brinleigh has, they tested her for it after discovering her loss. The doctor seems to think that may be the leading cause. :( So he is sending for her newborn blood screen that they store, so they can see if she had it at birth or if it's something she contracted. We may then be able to get some more answers. He did state that it may answer some questions or it may not. So Another waiting game to see what comes from this.... There isn't anything that can be done about it now, the damage is done. But it's really heart wrenching knowing that if they caught the virus sooner, we could have helped her. Let's just hope that there isn't anything else that it has or will affect. A bit scary! Ok, REALLY SCARY!
The second doctor we saw was for Genetics, to look into her hearing that way. We went through our family tree's a little bit. He didn't seem to think her being deaf has to do with genetics at this point. There isn't anyone deaf or with bilateral hearing loss in our families.

She has a few factors that were against her:
Extreme Prematurity
Being on a Ventilator
Medications
CMV Virus
8% of babies that spend time in the NICU end up with hearing loss, for unknown reasons (according to the genetics doc.)

But we are to start with the Newborn blood and see where it leads us... it's hard, I want to know but I also feel a little frustrated that maybe something could have been done to change her outcome, and I hate that feeling. It makes me angry & sad, but now we are faced with this challenge and are doing our best to help her and be supportive.

Busy Day....lots of firsts

Wednesday January 11th was a jam packed day of appointments and firsts.
It started off with our weekly OT/PT therapy session. Cari one of her therapists which hadn't come the last two times because of the holidays, she said she noticed a huge difference in Brinleigh. It good to hear other people notice a differenc in her :). Today Brinleigh kept turning her head to find me and then she would smile! It was adorable. She also followed Cari and cuddled with her without losing it. She said her shoulder muscles are more relaxed from before as well. She was so excited with the bond she felt this time. Pat the other therapist, gave Brinleigh her weekly massage. Lucky girl right! Brinleigh is getting more ok with it as the weeks go on. Overall they said she has made huge strides. Yay :)

Then on to her next appointment. We packed up and headed to the audiologist. Brinleigh is currently Deaf, she has profound bilaterial hearing loss. So today Brinleigh got her first set of hearing aides! Brinleigh is to wear her hearing aides as much as possible when she is awake. They are the tiniest little ear molds! We are just to watch her and see if we notice any changes and if she reacts to any sounds. We will be going back in two weeks for some booth testing. But they have to give her time to learn to process the sounds that she may be hearing if any. With the type of hearing loss that Brinleigh has she may be eligible for Cochlear Implats if we decide to go that route if hearing aides aren't sufficiant. We are hoping the very best for our Brinleigh. This has been really hard to take in. It's so difficult knowing how much she is missing. We are taking this in strides and learning as we go. It's a new world we are entering, and jumping in with both feet!

Then on the agenda we had Orientation with the USDB. There were 3 gals that came to our home. Two were deaf, One communicates purely with ASL with an interper, the other had cochlear implants and used LSL to communicate. So they came an gave us a presentation about the two different options and types of communication that they offer. One is the ASL (American Sign Language) so we can choose to teach her sign language or we can choose LSL (Listening Spoken Language) and she can learn to listen to what she can (if any with amplification), read lips, & speak. I guess with the program you are to pick one option or the other! Which I find to be a odd, I think they should offer everything and see what they child can do! Why on earth wouldn't I want to pick the LSL (have my child speak, if she can) but I also don't want to only push that option if she can't pick it up. So why not offer her ASL as well. It's going to be a hard decision and have NO IDEA which way to go... I think they said with the ASL they do a little more of everything, but w/ LSL that's it. Next I will be going to preschools to see kids that do both the languages to see how they interact, there are also parent groups that I can visit. Let's hope they can help us to make the right decisions. Well lots of decisions and things to learn, here we go! Wish us LUCK!
Here's Brinleigh with her hearing aides!

So today we got her FIRST pair of hearing aides & meet our FIRST group of Deaf people!

Happy 1/2 Birthday!!!

My Brinleigh is 6 month old today!!! I can't believe just how far we have come! Brinleigh is now giving smiles. She has the greatest and funniest facial expressions. She sticks her tongue out, always does a "o" with her lips, and raises her eyebrows often! Her arms and legs go wild when she's excited, she moves them so fast!! I think her vision is improving every single day too, she now follows people. When she's awake, if I am in sight she's usually ok.. but when I walk out of sight, she will fuss. Also, when our visitor came from PIP, Brinleigh just stared at her and gave a few crusty's. Mindy laughed and said wow, I'm surprised she notices strangers already.

She really has come so far!

We are so proud of the progress that Brinleigh has made and that she will continue to make!!

We love our BABY GIRL!! :-)

First visit from PIP

Tuesday we had our first visit from PIP (Parent Infant Program). This is for the USDB (Utah Schools for the Deaf & Blind). Mindy will most likely be the one that works with us on teaching Brinleigh & Us how to communicate. Depending on the option we choose there are two different methods. ASL & LSL. This meeting was just to meet Mindy, we have an orientation on Weds to learn about the two different types and what they entail. It's a different world we are entering into.

Nefrologist Appt.

We went to go and see a kidney specialists, Nefrologist. Since her kidney stones were getting worse on her last ultrasound in Dec. we were referred to Dr. Mauch. She collected some urine from Brinleigh and immediately they were able to see that she had calcium crystals in it. Which she said may or may not hurt her when she pees, she can't really tell us. :( So besides telling me to make sure she is getting enough liquids, there is nothing else that we can change at this exact moment. Other than she did want to have some blood work done to check all her calcium, vitamin D, protein, etc. levels. Then when we know what that shows there may be some medications that could help. Brinleigh is not to have any extra fortifier in her diet, other than breastmilk & rice cereal. They will keep close tabs on her and see her regularly to make sure they don't start blocking her uriters (sp?) This is not a common thing in babies, but she said, it has to do with her being so young and immature when they started giving her WAY to much calicum and protein that her body couldn't process it correctly, which is why we are in this situation. There is such a fine line with these little ones, cause she needed the extras to help her bones, but she just couldn't handle it. Poor girl!! The Nefrologist was just in AWE with Brinleigh though... She saw her at PCMC in the NICU and was amazed at how far she has come! She just kept repeating what a miracle baby she is!!! And I would have to agree!

So after leaving the Nefrologish, we stopped at the NICU to visit, & JaeLynne which was one of her primary care nurses that we just love was working that day!! She couldn't scoop Brinleigh up fast enough! We had a quick lunch and visit with her, and it was great!!

Then off to the CRAPPY second part to the appointment.. She had to have her blood drawn! Brinleigh did NOT like that what so ever! She has always been good at holding her breath when upset, let's just say I haven't seen her that upset since well, leaving the NICU. They had to poke her 3 times! Cause they tried in her left arm, but it had to much scar tissue, they couldn't get it. Note to self, no left arm draws in the future. So they moved on to the right. Now it's a waiting game to see what her results are........ dun dun dun.... to be continued.

Poor girl.... see her bandaids :(

1st Pediatrican visit in 2012

Today Brinleigh went to the Pediatrician to get her next Synagis shot and have her follow up appointment to make sure she's still on the right track! Today she weighed in at 10 pounds 6 ounces!! Wahooo, she is still on the upward climb of gaining weight!! I'm so glad that she is such a great little eater. The Doctor is happy with her weight gain, and will allow us to go two weeks between her visits! So, like I said she also got her 2nd Synagis shot that she will be getting monthly through the RSV season. The Synagis shot does not prevent her from getting RSV, it just helps that IF she does happen to get it, it will help her to fight it and hopefully it won't be as extreme. Because of her Chronic Lung Disease, she is extremely high risk with the RSV virus. Most premature babies that get it end up back in the hospital, and WE DON'T WANT that! Her airways are much much smaller than a regular babies, so when she gets a respiratory infection they close off, where ours just get a tad smaller. So that's why we have to be EXTREMELY careful with who she is exposed to. And SICK people just MUST stay away. Yes I am paranoid, but I think I have every right to be! A new germ-a-phobe has been created, that's ME!

These pictures were of Brinleigh's reaction to knowing she was going to the doctors and going to have a shot done! (ok, ok you got me, she didn't know at the time) but boy do her facial expressions crack me up had to share!!!

So happy that she is gaining weight if you haven't notice those cheeks of hers that she's worked so hard to get :)

Happy NEW year!

Needless to say this has been a very difficult life altering year... We had some really high points, and some really low points. From the excitement we had of finally getting pregnant and finding out we were having twins. To their early arrival and the tornado that caused... The sad sad loss of our precious baby girl Maeleigh. That I miss everyday, I always imagine and dream of her being here with us. The holidays she has been on my mind so much. We were so excited to be having them just before all the holidays and the joy it was supposed to bring. Instead we have been left with a whole in our hearts missing her every single day! I am grateful that I did have those 5 days with her, and was able to hold her in my arms, for those few moments. Now she is just our precious angel baby that watches over us and I know helps me to be strong. I am just overly grateful for our miracle baby Brinleigh. She has overcome so many obsticales! She truly is one strong baby, she had the fight in her from the beginning. Sitting by her bedside every single day watching her push and fight was such a humbling experience, one that I never could have imagined. This has been an experience that has for ever changed our lives, we have seen things that most never do. It's been a strengthening one, an eye opener. We do have our Brinleigh that comes with her difficulties, we will be working on all the time. But I couldn't be more proud to have her in my life, and be her mommy! So to say the least, I am glad that 2011 has come to and end, and we are looking forward to 2012. I hope that there are some really GREAT things in store for us!

Our New years eve consisted of Me, Dust, & Brin hangin' watchin the Rockin' New Years Eve. Brinleigh managed to fall asleep before midnight, party pooper :). But we insisted on staying up... which we shortly regreted when we finally crawled into bed at 12:45 and Brinleigh woke up at 1:30am. But I can't imagine a better end to this year then with the 3 of us home & together!! Ok, I can't forget to mention our hairy family members too, Bro & Cam that spent the time with us also... Those rascals have been a big part of our lives too, and I think they knew that Brinleigh was coming, cause they have been really good with her, better than I imagined!

Well Cheers to 2011 being OVER - and 2012 STARTING!!

Our 1st Christmas....

Our First Christmas 2011. We recieved the BEST gift ever!! We were able to have Brinleigh HOME just in time! We loved having her with us, and us three enjoyed waking up Christmas morning! She was in such a good mood, I think she knew it was a special day! She was full of smiles, which she had just started doing, but we have to work really really hard to get them, lots of really silly facial expressions! We are pretty much on lock down here at home trying to protect her as much as possible, which does make it a tad bit difficult for the holidays. We wanted to be able to go spend it with all the family and friends, and show off our newest edition our pride & joy, but Brinleigh's health was most important so staying home was in the cards for us this year! Which It was best. We did see our families for quick visits they stopped by to exchange gifts. It was a great first Christmas and I can't wait to have many many more!!!

HOPE everyone had a MERRY CHRISTMAS!! We Love you!!

Summed up Appts Update...

Update: So Since leaving the hospital we have had appointments like crazy with all the different Doctors and specialists.... So I will Sum it up to date: (then keep up on it)

Therapy:
We have two Occupational & Physical Therapists (OT/PT) come to our house every Weds. to work with Brinleigh. They will help us make sure she meets her development milestones.

Hearing/Deafness:
We have been to the ENT (Ear, Nose, Throat) & Audiologist. The first week home she was fitted for hearing aides. She will be getting a trial pair on Jan. 11th, we will see if they make any sort of a difference, they say it could take some time, cause of her age it may be hard to tell what she can and can't hear with them, if anything. We will learn a whole lot more about the process and what steps we will be taking this coming wed. We then see an otolaryngologist Jan 17th.

Eyes:
We saw the optamologist also, and he said that her eyes are looking good, they have regressed from the surgery. So she has a great response! We just have to hope that the connect to her brain is strong and formed correctly for her vision to be the best it can. We don't have to been seen every 2 weeks anymore! We don't have to go back for 3 months now! So I take that as a positive!! YAY!

Barium Swallow:
Dec. 27th Brinleigh had another swallow study done and She passed!! YAY!!! She did great eating with Thick & Thin Liquids!! One item checked off the list, NO MORE ASPIRATING! Phew, what a relief.

Kidney Stones:
Dec. 27th Brinleigh also had an ultrasound on her kidneys to just follow up on her stones... and sadly they have gotten worse! :( So her pediatrician reviewed the final report, and stated that this is really uncommon (which we already knew) and he didn't have much knowledge on where to go from here. So he is sending us to a Nephrologist (sp?). Our poor girl, there are many mixed opinions out there weither the stones would be causing her any pain or not... I sure hope not, we also hope that they will start improving SOON!

Reflux:
Ugh, this is nasty! But I think there has been a huge improvement. They have maximized her medications. She is on Prevacid & Zantac 3 times a day. I also think that having her on the rice cereal has helped to not be acidic, and she doesn't take as much in cause she gets fuller on smaller amounts which also helps. She still does cough and have some discomfort. We just hope that more that she grows her sphinkter muscle will get stronger and be able to close off.

She is still doing GREAT with NO OXYGEN! Wahoo!!

A HUGE THANK YOU!!!!

First off I have to say A BIG HUGE Special THANK YOU to my Dad!! My Dad was amazing, and created this blog for us when our world was flipped upside down! This has been such a great resource to help keep everyone up on our whirlwind of a life. I know it wasn't easy, and some of the posts he didn't ever want to have to do. But I appreciate the burden that was lifted from us at the time. My parents are wonderful, and have been there for us this entire journey! They have been overly supportive!!!!! They have helped to give me the strength to keep strong, and hopeful at times when I felt completely hopeless. I can't even describe how much they mean to me, I just start bawling (haha, me?, never) Thank you again Dad & Mom, I LOVE YOU both so very much!!!

Next off I need to Thank all of YOU (Family, Friends, Co-workers, Employers!!) Thank you all for the love and support that you have all given to our family!! So many people have reached out to us in so many different ways! We truly appreciate the love, support, & prayers that were & are being sent our direction. Our family and friends mean so much to us, and we wouldn't have been as strong with out all of you rallying behind us!! We feel extremely blessed, Thank you all!

We also need to thank the incredible nurses that cared for both Maeleigh and Brinleigh! We met some really special primary care nurses through this process. It made it so much easier knowing that we had great people caring for them. They are a huge part of our lives, and will be dear to us forever!! Dustin kept telling me that I will miss them when we go home, and he was right, but because of the friendships that we formed (not being there). Thank you ladies!! I have lots of love in my heart for you all taking care of my precious gifts!!

I need to thank Dustin! He has been my backbone throughout this! He is one amazing man. A great husband and even better DADDY! He has loved his baby girls from the moment he saw them, he just melted. He was the strength that kept me going, I think I would have crumbled if it wasn't for him holding me up at times. This experience has been one of many emotions. Excitement, Tragedy, Heartache, Sadness, Worry, Stress, LOVE, & Triumph! We had to pull together and dig deep for our strength, but together we have pushed through. I feel closer than ever with Dustin now. Thank you Dust for being... well A"mae"zing for all 3 of us girls! We are lucky! I love you sweetheart!!

This Journey has been LIFE CHANGING in more ways than ONE, but in the END we have one PRECIOUS ANGEL Maeleigh in heaven looking over our family, and our FIERY SWEET Brinleigh home with us now, and we couldn't be more thankful for that! We are proud PARENTS of TWINS! We love you girls!!

THANK YOU ALL!!
XOXO

Carrie & Dustin

Please follow for more to come on the steps going forward....Still lots to come. :)

The time has come...

The time has come for us to turn the majority of the work of this blog over to Brinleigh's Mom.  She knows so much more than we do about her.  We have enjoyed very much writing about the Jenkins family and their ups and downs.  We can  honestly say we have had more life experiences over the past 5 months that has made us stronger and it has run the full spectrum of emotions.  Never has life been so difficult for us as Parents and Grandparents.  Many of the happenings I do not wish any of you to have to experience.  All these experiences have made us stronger and more compassionate.  From the time we received an early morning call when we were vacationing in Las Vegas and drove home without any sleep but having a prayer in our heart to today when we always have a prayer in our heart for Dustin, Carrie, Brinleigh and Maeleigh.  It goes without saying we wish things were much different.  However we are up to any and all challenges that the loss or Maeleigh and the raising of Brinleigh will bring into our lives.

We so love you all

Grandma and Grandpa Roberts

PS.  This blog has had over 13,000 views.  That is allot of love and caring.