Thankfully, with the light of today, came hope.
We still know nothing about his condition, except that we are able to rule out about 12 of the possible 20 syndromes. Matthew is no longer jaundiced so he’s no longer under the blue light. He’s off IVs and he took fluid from a bottle today instead of the NG tube. His daytime attending doctor thinks that he will start w/the occupational therapist tomorrow to better take a bottle and maybe even breastfeed in time (avoiding having to go home w/a NG tube is our biggest goal). Matthew moved from the incubator to a crib. The best part of today is I got to cuddle with him. All of this is wonderfully uplifting for us!
In addition to all of the medical reasons, today, we had many more reasons to be hopeful. First, we have the most amazing friends and family. We have felt loved, supported and the prayers of so many. Thank you! Both Darren and I were in a deep dark pit of despair this morning and we are no longer there in a large part to the words and prayers we received.
Additionally, the doctors began running every test in the book so that we can have a diagnosis and know what to do next. Matthew has had xrays, ultrasounds, an echo-cardiogram, been checked by the geneticists, etc. He’s been sleeping through the majority of this ordeal, only to wake when someone pokes on him too hard. That is a blessing.
The results have been mixed, which is actually a positive. We needed to hear some good news and we finally did. Matthew’s head ultrasound came back normal, and his abdominal ultrasound came back ‘not unusual’ meaning he’s got the parts he needs, they just haven’t made their way down yet. As we expected, he does have some issues that point to a genetic disorder. He does have an issue with his kidneys (one is fused to the other), he has a small hole in his heart in between his ventricles, and he does have radial anomalies (related to the missing thumbs). Tomorrow we’ll meet w/the kidney specialist and the cardiologist as well as get a full skeletal scan.
The doctor is doubtful we’ll be able to leave before Thursday, but we’ll know more tomorrow. We are both staying up here again tonight, but tomorrow Darren will head home to spend time w/Alyssa and Jackson.
As we have still really don’t know what is in store for us in the future, we are going to continue to focus our attention on the right now. We have a lot to be grateful for at this moment … 1. The results aren’t all bleak! 2. We are able to cuddle Matthew today. Darren and I need to love on him and it was hard to not hold him. 3. We have fantastic family and friends. We feel loved. Thank you again for your prayers, love and support!! 4. I’m thankful we didn’t find out about Matthew’s uniqueness at our 18 week ultrasound. My wonderful pregnancy would have been marred with worry, worry which would have changed absolutely nothing. 5. We have wonderful parents who live in town. Alyssa and Jackson have been wonderfully cared for by Grandma Denk while Granddad and Granny Kendall have been here at the hospital to sit w/Matthew while Darren and I take a little break. 6. The Ronald McDonald House at Children’s is God-sent. It’s nice to be away from the antiseptic atmosphere to take that break…and get a shower and a quick nap. It’s only a short walk down the hallway and they even had a room for us for tonight. Maybe we can get more than an hour sleep tonight. 7. We have each other.
I’m sure we’ll have many more ups and downs, but we are thankful today was an ‘up’ day. Thank you for your continued prayers. We will provide updates as we find out more.