Saturday, June 30, 2012

NICU and PICU Tour - Check

Hello All:

Can I just say you know you have a wonderful pediatric cardiology, when she finds out that you have been a little anxious and nervous that you could go into labor at any day because you are having preterm symptoms and she calls to ask if you want to move everything up closer so we can fit it all in before the baby comes? YES! Thank you Dr. Lacey for proving to people that doctors do care and they DO have your child’s best interest at heart!
We had the opportunity to learn a bit more about our process yesterday, as we were able to tour the NICU and PICU at Wolfson’s Children Hospital here in Jacksonville. What an amazing facility staffed with impressively skills, compassionate, and loving people. We were led around by our fabulous tour guide Chaplain Fred. We started with my last fetal echo before Ryleigh is born, then we were taken up to the PICU, now I tried to prepare myself as best I could having worked in PR for Shands and had given tours of their NICU there – I was sadly mistaken that all my mental preparedness was enough. It was overwhelming to say the least, wires, monitors, sounds, tubes, tiny, tiny babies. I am crying as I type this because all I can see is our little girl laying there hooked up, it was so overwhelming. The staff and Chaplain Fred allowed me to break down, I cried and had to take a moment (or a few) to soak it up. It was good to see this before she is born, I was fine until I saw a newborn’s room that was a heart baby who just had surgery. Even the parents had so much compassion as they watched me live a moment they too were all too familiar with. The PICU is where Ryleigh will go immediately after her surgery. We also learned the day we wheel her down the hall and give her a kiss before she goes into surgery, it will last about 7-8 hours.

The day she is born, we have been told as long as she comes out ok, we will have a few minutes with her to love her, kiss her, share in the joy of her joining our family, then they will take her straight to the NICU to be hooked up to begin her monitoring and testing needed to prepare for her big day. We can visit the NIUCU/PICU 24/7. We just can’t hold her necessarily until she is off the monitors and tubes, which should occur a couple / few weeks after surgery. While the site of the NICU started the flow of tears again for me, and for Craig as he saw another father next to the bedside of his little baby girl, we mustered our strength together and pushed forward. It is a great way to prepare yourself and I am sure when she is in there I will cry walking through the doors several times before I accept it as our new normal.
We also got to meet 2 of the Cardiothoracic surgeons (one planned, one not). We met Eric L. Ceithaml, M.D. (not planned), who introduced himself and gave us a little piece of mind that there will be 2 highly qualified and trained surgeons performing the surgery and she would be in great hands. Then the doctor that took the most time with us and gave us with some great art work of the heart – provided some more information, Michael Shillingford, M.D (planned). He is awesome, great bedside manner, calm, and speaks in a very “easy to understand” kind of way. It was a great opportunity to ask some questions that I had lingering. I did ask if her chest bones would be cut and he said yes and they would put them together with wire after the surgery.  We did ask about the parts going into Ryleigh and I guess I never thought of it before, but the conduit they will put into her heart is the conduit of a deceased baby that has been chemically treated, so it cannot be rejected by the body as it is non-living tissue. That hit me kinda hard because I never thought to ask that question! He informed us that the surgery would take 7-8 hours, it is very complex and that in a year to a year and half she will need to have another surgery to replace the conduit as she outgrows the initial one. He drew us some nice artwork, gave us his card and said he would be seeing us in a few weeks. He then pulled out his “list” and sure enough, we were on it. I shared some key dates with him and told him the day we planned to be induced and he made a note of that, but also shared she may decide to come early, either way he said he will be ready.

Needless to say it was an informative day, very LONG, and emotional, but I am glad we had the opportunity to see it all and hear it all first! I told Craig I will need to be briefed again as we get closer on the rules of each unit because I was so busy processing what my eyes were seeing.
Well I better sign off now. Next week we go see the OB specialist and my OB, making sure were are on track and Ryleigh is good too. I am hoping they tell us she is over 5 ½ lbs. J She is head down and dropping lower and we will see if I am dilated anymore. It would be great if Ryleigh came on her induction date as there is a plan in process here, but she is her own person and it was shared that while I am a planner this process will drive me nuts and it no longer can be controlled by me, it is her that is in the driver’s seat! I have always wanted someone else to take the wheel, just never thought it would be a newborn!

More to come next week.
Lee Ann and Craig

Monday, June 25, 2012

The Heart of a Fighter

The news comes with a blow of the worst kind,

Hitting your gut leaving you in a shocked state of mind,

Leaving you asking, why her and why me,
Wanting to believe it just can’t be,

A darkness so deep it drains your soul of hope,
A pain that is intoxicating feeding you like dope,

No one can explain the uncertainty that becomes,
Knowing that you and your child are the ones,

Chosen to endure a fight like no other,
Putting her life in the hands of another,

Keeping strength is an arduous task,
But knowing she will fight keeps you steadfast,

With each kick inside the womb,
It is certain her destiny is not on the path of gloom,

She will teach you all about courage and how to be strong,
Her determination to live will prove everyone wrong,

She is our heart baby that is for sure,
We know that your condition does not have a cure,

It does not change the love and pride we have for her,
We are so glad you chose us to stand beside you, that is for sure,

On the eve of your birth,
Know mommy, daddy, and brother already love you more than anything on this earth.

Dedicated to our sweet girl and heart baby, Ryleigh Ann Walker.

That plug is outta here.

Ryleigh is trying to find ways to get out, we are starting to dilate and I lost my mucus plug last week, she is very active and is head down. Contractions have begun and so far they have only lasted a few hours at 5 minutes apart – so we aren’t getting too ambitious to get to the hospital, lol. I was prescribed meds to slow contractions, but they put me to sleep for two days a pop, can’t have that, so I am not taking them! I am 35 weeks now and doctors say if I go into active labor, they won’t stop it, so either the contractions will start and not stop or my water will break – these will result in a baby being born. This will happen any day now!!!

We are excited and anxious and both agree we are not ready. We are ready to meet her though, but not ready for what will come just a few days after she is born. It has been a reoccurring nightmare for us reliving the surgery that is eminent, so in the long and short of it, I am ready to get her first open heart surgery done so we can bring her home and introduce her to "life" as we know it.
All in all she is doing great, we go next week July 5-6 for our next round of detailed exams with all of her doctors, we will meet with our OB specialist to get her anatomy scans to make sure she is growing and gaining weight on Thursday, and on Friday we have a 3 hour appointment at the Fetal Heart Clinic to scan her heart one last time before she is born, tour the NICU, PICU, and meet her surgeons, then we meet with my OB to get another exam to see how dilated we are! Of course this is all going on as planned if she stays put, which I hope she does, I want that moment to see where she will be and how it will all happen when she is born as opposed to seeing it all after the fact.

Soooooo, Ryleigh this is your mom, stay in their pretty girl!
All in all we are holding it together, still have our days, but together we have it all!

More to come next week.