Here it is, the eve of Jolene's first birthday. And my, what a difference a year makes. Last year at this time we were anxiously awaiting the c-section that would bring us our brand new baby. We were excited, scared, curious. We didn't know what would happen after our Jellybean was born...so many, many questions that wouldn't be answered until the moment our baby was brought into the world.
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| After being put on ECMO |
CDH. Congenital Diaphragmatic Hernia. It's as common as Spina Bifida and Cystic Fibrosis, yet I had never even heard of it. Over 1,600 babies are born with CDH every year in the United States alone. And of those 1,600, approximately half of those babies die. Fifty percent!!! That statistic is so scary when you are doing research after having your unborn baby diagnosed with a condition that you have never heard of. And of those fifty percent, many are faced with medical issues for the rest of their lives. But we live in Houston, where there is a phenomenal medical community. We were sent to some of the best doctors in the world, who gave us the facts and took care of us as best they could.
When Jolene was born, the doctors yelled "It's a Girl!" (because we didn't know what we were having!). Jason and I were both kind of surprised, actually, as we had a feeling it was a boy. We heard a faint cry, and then just lots of voices. I couldn't see anything, and they asked Jason just to sit with me, while they worked on our baby. So scary. The team got her intubated and stabilized and then let Jason over for a minute. Then on their way out the door Jolene's transport team stopped and showed her to me. My beautiful, beautiful baby. Those moments will forever be ingrained in my memory...
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| The machinery...so much machinery. |
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| These eyes say it all... |
Fast forward through all of the NICU days - the ventilators, the ECMO (yikes!), the tubes, the meds, the stats, the feeds, etc. etc. etc. We brought our little girl home on June 1, at exactly two months old. She was exhausted those first couple of weeks. (In fact, she slept better then than she does now!). Eating was so hard for her - lots of gagging, spitting up, struggling to get through a full feed without falling asleep from working so darn hard. But we did it. It took lots of work from everybody, but we did it. Jolene came home from the hospital in the 5th percentile for her weight and 12th for her height...today she is in almost the 60th percentile for her weight and the 90th for her height. And you should see this girl eat! She is starving all the time, and eats whatever it is we are eating. She's completely normal you guys. Completely normal!!!!!! I just want to shout it from the rooftops it makes me so happy. There were a couple of colds early on that were a bit rough - some chest x-rays and nebulizer treatments, but really nothing too bad. No hospital admissions, no really, really bad illnesses. No setbacks. In fact, when we went to see Jolene's surgeons in December for her check-up we heard the same response from both the Fellow and the Surgeon when they came in the room - "This is the ECMO baby??" They couldn't believe how big and healthy she was. They took an x-ray of her lungs to check the progress and they were so very, very pleased. Full lungs. Both sides. Clear, healthy, taking up the whole chest cavity. Dr. Tsao told us that Jolene really beat the odds. We knew our girl had it in her! (We of course always have to be on the lookout for certain things you wouldn't have to be in other kids - risks of re-herniation and bowel obstructions are always looming, but for the most part, things are normal!)
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| Full, healthy lungs. We don't have any way of knowing to what capacity they work/will work in the future due to the diaphragm muscle (or lack thereof). But they grew and expanded, and they're healthy! |
Today Jolene is on the verge of walking, loves to dance, play peekaboo, and help everybody out with everything. She follows big sister Emery around (particularly to her room, where she wreaks havoc) and loves to wrestle with big brother Samuel (and also to slobber him with kisses). Our girl loves to be outside, loves kids and animals, and is just a pretty happy baby. She does have a temper though, and makes her opinions known quite loudly. This feisty attitude is what helped get her this far though, I know. And it will take her on to do great things in her life. Y'all (yes, I said y'all), this girl is THRIVING! Looking back at my old posts, I prayed for this to be true. I cannot tell you how much GRACE God has shown our little family with this miracle baby. So many, many people were praying for our Jellybean, and just look at her now!
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| 4th of July |
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| Christmas Eve |
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| Valentine's Day |
As we get ready to celebrate life this weekend, I want to thank all of you who have been on this journey with us. It's been wild and crazy, but humbling and awe-inspiring. There are so many pieces that came together just right, and I know that God put them there just for that reason...Happy Birthday Jolene Grace. Happy Birthday!!!!
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| Thank you Sara Spada for the awesome birthday pictures! |
