Continued

(continued 7/1/11)

"BrynLee is doing great today! She's slept almost all night! I still don't know much more than I did last night.. She doesn't seem to be in pain, the only time she cries is when they wake her up for xrays, blood work, diaper change, etc! She's a sweet little angel, so content and just precious! Thanks again for the prayers, thoughts and concerns! I'll post pictures as soon as I can!"  ~  6:59AM

I didn't hardly sleep that night at all.. Every time I fell asleep I'd wake up an hour later in extreme pain. I think it was because I was laying on my side (Jocko and I had to share a hard couch!) and I couldn't roll over or change positions! I tried twice, woke up in pain both times and decided that was enough! We got up and headed down to the cafeteria for breakfast..
The day was slow and pretty much spent going back and forth from the family room we were in to the NICU to see BrynLee. We had several visitors and one of us had to be with them to see her, so we just spent the day escorting!
That afternoon one of the residents came in to talk to us about the surgery and what they had planned. She told us about BrynLee's condition and what they were going to do to fix it..

"We just got more information on BrynLee.. She has what is called Bladder Extrophy, her bladder basically didn't form correctly and is exposed.. They are doing surgery tomorrow afternoon between 2 and 3 PM.. Rather than being round, her bladder is flat on one side, which is the side that is exposed. Her pubic bone is also split so they have to pull it back together.. They are doing the surgery so soon because if they do it in the first 72 hours they can stitch the bones with sutures rather than needing screws or needing a cast! She'll be in a brace type thing that has 3 velcro straps, one that goes around her kneew, her thighs and her hips to keep her legs closed and let her pubic bone heal.. She'll also require a special carseat (which I haven't seen yet and don't know much about) that she can ride in with her brace on! I'm not sure how long she'll be in the brace, I didn't catch that part! They will also be repairing and placing stints in her ureters (SP?) and will most likely suffer from bladder reflux until they can do another surgery to fix that, and the soonest they can do that is at 12 months of age.. She'll be on antibiotics for an entire year to prevent any infections getting to her kidneys and with my family history, she'll need it!!  They will be repairing her genitalia, which are also (unfortunately) split down the middle.. They will pull her labia back together, as well as her clitoris.. We were told that for the most part she will "look" fairly normal.. As of right now they think her reproductive organs are going to be ok, but she'll probably have to have c-sections if she has any babies! They will also be reconstructing her navel because it is so low on her belly. There is only about an inch between her navel and her pubic bone, so they will be moving it up to a more normal location. They said it could be a funny looking belly button, but at this point I don't care what it looks like!
I THINK that's all they are doing tomorrow.. It was alot of information, and alot to take in! She will have to have several surgeries over the years.. They said abdominal surgeries are extremely painful, so she'll be on heavy pain meds for at least a few days after surgery. They expect us to be here for around 14 days! She has to recover, be eating, digesting and pooping before they'll let her go home!
She has been so good.. She's not on any pain meds, and is as comfortable as ever.. Like I said before, she never cries.. Only if you give her a reason! :) I got to hold her today, which was the most amazing feeling. It's so horrible when you can't hold your baby or comfort them when they are crying!
Jocko and I are doing ok.. He's sure taken it hard, but I think he's doing a little better today! I want to thank everyone again for their thoughts and prayers! Honestly, there are no words to express how much we appreciate each and every message, text, phone call, etc! We're tryin our best to keep everyone updated! As of right now it sounds like our kids, animals, house and all that are being taken care of..
If I remember anything that I didn't already post I will add in comments below, but as of right now, this is all I have! I'm exhausted, somehow managing to function on 2 hours of sleep after having the most difficult delivery, not to mention day, of my life!
Keep the prayers coming.. I know they are helping all of us and especially my sweet BrynLee.. She is so comfortable and peaceful! Thank you all sooo much!
With love and appreciation,
   Jocko and Chelsey"  ~  6/30 - 12:28PM

The doctor told us we could hold her so as soon as she left Jocko and I headed in to see our baby! We were upset.. it's alot to take in and hear all they had to do, but we were also happy and relieved.. we finally had a diagnosis and it was manageable! We sat with her for a long time, just the two of us and loved on our baby! I held her and kissed her and loved on her and felt so much peace. It's such a relief to know that you can hold your baby without hurting her!
 

"Just got back from holding my precious baby girl! Jocko & I sat there looking at EVERY picture in our phones! Some went back as old as Austyn being only 2! We talked about every picture while laughing & snuggling with our BrynLee! We miss the other kids so bad we have to look at pictures we've both seen a million times just to keep us sane! Sounds like we'll see our Aybri Jo tomorrow, so that made us both smile!"  ~  1:36PM (6/30)

BrynLee really is the most amazing baby! She's so peaceful, relaxed and content! She literally NEVER cries! The only time I've heard her cry is when they were drawing blood! She had her PICC line put in and didn't even fuss! Most babies have to be slightly sedated but BrynLee didn't even care. She's so tough! When Aybri was in the hospital for her jaundice she screamed the whole time! It was heartbreaking for me as a mother because I had to leave her in the bed to let the bili lights do their thing.. With BrynLee it is so much easier having her in her bed because she's ok with it! She loves her bed!!

That afternoon Jeff, JoDene, Jocko and I all headed to Olive Garden for lunch! It was great, as always, and I finally got my Olive Garden! LOL.. There is a Shopko right there in the same parking lot so we headed over there.. We found a new blanket and toy for BrynLee and I got some clothes for me! It's nice to have something that fits after you have a baby, especially when you're spending your time walking the halls of a hospital rather than sitting at home on the couch rocking your baby! It was nice to get away, but it sure didn't last long before I was ready to come back and be with my sweet girl!
We got a room at the Ronald McDonald house, so after spending more time with BrynLee we headed over there and got things situated.. Jocko's parents ended up getting a hotel so we took them there, went back to the RM house and ate dinner. After dinner I had to get back up to the hospital.. We sat with BrynLee again just the two of us and loved on her.. We did her cares (diaper change, temp, weight and changed sats), gave her more loves and headed to the room to try to get some sleep!

"Headed to bed! I'll never quit saying thank you for all the prayers! I know we are most definately feeling them! BrynLee is so peaceful and it's because of all of your prayers!! I do have to ask for you all to pray extra hard for her tomorrow! For an uncomplicated surgery, for strength for her and strength and maybe a little peace for her mommy and daddy! We love and appreciate each and every one of you!"  ~  11:26PM (6/30)