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.