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
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