Time just seems to be flying by! So much has happened in the past month & its hard to believe that in just 12ish weeks, our little boy will be here! He's grown quite a bit over the past four weeks & the baby bump is large & in charge now! As of December 1st, he's grown to 2 lbs 2 oz, putting him in the 44th percentile at this point in the pregnancy. Babies with HLHS usually are on the small end of the growth scale, so he's doing great!
Jordan & I have been busy getting things ready for his arrival. We've cleaned & organized every room in our house & are ready to begin transitioning the office into his nursery. While we were in Tampa over Thanksgiving, some friends Jordan had grown up with threw us a delightful baby shower, so we now have some baby clothes hanging in his closet. So precious! Currently, we're finalizing our registries at Target & Babies-R-Us. Who knew babies needed so much stuff! We're hoping to nail down a room design theme & bedroom set today, while we've knocked out most of the other big items, such as a stroller, car seat, etc. ConsumerReports.org has been tremendously helpful to us new parents in knowing what's tried & true.
More excitingly, we've narrowed the baby names list quite a bit & are beginning to really feel some direction for what his name will be. Growing up with an unusual name that tells part of my story, I would love to pass that on to our son. So that whenever someone asks him, "hey, why did your parents name you __________?", he can share the testimony of the great things God has done in his life, carrying him through the HLHS to victory! So something meaning "overcomer, warrior, God is my strength"...along those lines. We'll keep you posted on our progress with the name :)
On December 1st, we had a sonogram at UNC to give them their own view & records of our growing boy. Boy, was he feisty & proud that day! Shortly after getting him on screen, he did "The Worm" move for a while...he's got rhythm already! :) It had been about a month since the last sonogram & Jordan & I were amazed with how much he has grown! You can clearly see where the cartiledge is becoming bone & muscles are strengthening around his long legs. That day, he had decided it would be fun to see how far down in mommy's hip he could bury his little head. No wonder my leg had been cramping all morning! We weren't able to see his little face well w/the position he was quite content in, but the back of his head was looking just fine. With his growth, we were able to have a better view of his heart. Nothing has changed in that arena. The HLHS is still very present, w/the missing mitral valve & fibroelastosis surrounding the left ventricle far more visible now. The good news is that no additional problems have presented themselves. So other than his heart, he's growing perfectly! His kicks get stronger every day. What a blessing to feel his life moving about within throughout the day. There are many nights that Jordan & I just watch my belly move about as he plays inside. We can't wait to meet our little boy & kiss his precious face!!
As many of you know, we've been in the process of determining whether to have the Norwood Procedure done at UNC of Children's Hospital of Philadelphia (CHOP), where the procedure was developed & HLHS babies are operated on every week. Our care coordinator at UNC was kind enough to set up a meeting w/Dr. Michael Mills, Chief of Cardiothorasic Surgery at UNC. We spent an hour & a half with him, asking questions about his background & experience w/HLHS & Norwood Procedures, to determine our comfort level w/having our boy operated on at UNC. Dr. Mills was simply delightful! Brought to UNC in '88 to develop the heart & lung transplant program, he has been performing the Norwood on infants since '91. His success rates are equivalent to the national standards put out by Children's in Boston, Philly, & Ann Arbor, which is 70-75%...awesome! Granted, with the mitral arteriosis & fibroelastosis of the left ventricle, our boy is towards the 70% range of that rate, but luckily Dr. Mills is familiar w/this form of complication & had much success before. He works with a very close-knit team in the O.R. & while UNC is a teaching hospital, Mills will be the principle surgeon on our son. No one's learning on our little boy...we're only having experienced hands in his chest.
The meeting was truly such a blessing to us both! We left feeling tremendously encouraged & more hopefully in the face of these surgeries. He explained why they wait 3-7 days to do the first operation: this allows the infant time to adapt to living outside of the womb, strengthening the lungs & digestive system, & ensuring that he does not go into surgery with any illness. Babies who undergo the Norwood Procedure between 3-7 days after delivery do much better than those that go under the knife just hours after birth, both in surgery & in recovery. The entire procedure will take only 3.5 -4 hours. Most of the babies Mills has operated on w/o complications have been able to go home around 2 weeks after surgery, which is shorter than we expected. We will be able to hold our son from delivery till surgery. After about 2 days post-op, we'll be able to hold him again. The greatest determinant to the amount of contact we can have with him is his need for a ventilator, as that would only allow us contact through touch rather than holding his whole body. On any given day, 30%-40% of the infants in the PICU are those Mills has operated on, so they are very familiar with infants who have undergone open-heart. God has put our worries to rest once again by bringing us to the perfect people to help our son. What a loving God He is! He has everything under control!
So that's all for now. Updates will come more frequently now as the doctors visits increase in regularity & the countdown to his arrival comes to a close. This has certainly been a time of testing & faith, but praise be to our awesome God who carries us through every fire & flood. As our friend Tami Poland stated so eloquently last weekend in service: no matter how grey the sky appears, nor how loud & long the thunder rolls, behind those clouds God is ever-shining. Even when we can't see its light nor feel its warmth, we can have hope & joy knowing He is there in complete control & shining His love & light over the whole earth even still.
While we don't know the outcome of this situation yet, we have confidence in our God & that He is in complete control. When fears, doubts, impending medical bills, & dire diagnoses try to cloud our minds & hearts, His rays of light & truth prevail. For He is the First, the Last, the Great Physician, the Everlasting One. From Him & through Him & to Him are all things! To Him be the glory, now & forever more. Amen!