We haven't written an update in a week, as there were so many ups and downs and the game plan seemed to be changing minute by minute. The original plan was that we were supposed to leave the hospital on Monday afternoon as a family, however when daddy was feeding Mary Cate Monday morning, she decided to put on a little show (literally as 10 doctors were rounding on her). Chris noticed she was very fussy and not eating (which had not been the case over the previous days). Out of nowhere the monitors started alarming and her heartbeat jumped to about 250 beats per minute, and stayed that way for about 1.5 minutes until one of the fellows ran over and pressed firmly on MC's liver to enact the vagal response and lower the heart rate. Thankfully this worked quickly, but also gave concern to us and the doctors and we knew right away this would delay her discharge from the NICU. Within the hour she had more tests on her heart done and they attached a Holter monitor to measure all heart activity for the next 24 hours. All of this also delayed her field trip to Children's Memorial for the Upper GI test that she had to pass before discharge.
We were devastated to have to leave the hospital (I was officially discharged) on Monday night and have to go home without Mary Cate. The only saving grace for us at that point was that we had grown to love every nurse that took care of MC in the NICU and we knew that she was in the most loving, caring and gentle hands. We went home that first night alone, shed a lot of tears, tried to sleep and then were up and back at Northwestern first thing Tuesday morning.
Tuesday she was doing well, but the docs said she was tuckering out on her eating, and needed to still keep her longer to watch all of the intake she was getting (breast milk and formula), at one point that day they told us she may need to go home with an NG (nasogastric) tube to be feed that way every night for the next 6 weeks! We worked on the feedings with her all day, and by the time we left on Tuesday night she was finally up the minimum requirement that the doctors wanted. Our wonderful Friend Fr. Tom Hurley came to give MC a special blessing, and we were very grateful for that.
On Wednesday we received the great news that the Holter monitor test results were clear. Although, this made us a little suspicious that the tachycardia episode was just an excuse to get out of a trip to Lincoln Park. After all, she is a south sider by birth! In the late morning, they packed her up in this fancy schmancy bed and she and Chris took their first ambulance ride up to Children's.
We were THRILLED to get the good results right away that her intestines look great (another issue sometimes seen in Aperts is a malrotated intestinal tract). Back at NMH the neonatologists recommended that she still stay inpatient for another 48 hours to continue to monitor her feedings and her heart. Though we were more than bummed to not have her home, we knew it was in her best interest and knew she was in the best of hands.
Thursday was quite uneventful, and finally FRIDAY was here...we went over a lot of discharge paperwork, all of our 15+ (or what seems like 150) appointments with all of the specialists we need to see at Children's over the coming months, and finally they took off all of her leads, and we could finally enjoy a "wireless" baby.
We have spent the weekend at home with Mary Cate snuggling by the Christmas tree, we cannot put into words how amazing the last few days have been! We look forward to a couple of weeks off of doctors appointments and to just enjoy the holidays as a family.
Thanks again to all of YOU for the thoughts, prayers, gifts, meals, flowers, offers of help, and the many, many doctor recommendations, and reaches out to families with a child with Aperts or a similar syndrome. We have a lot of emails to sift through and look forward to touch base with all of these docs and families soon. We have a long road ahead of us, but we know with all of you behind us we will make it through.
We are blessed beyond words and we look forward to everyone getting the chance to meet our beautiful angel!
They Lynch Family wish all of you a happy and healthy holiday season!
xoxo
Kerry, Chris & Mary Cate
MC's NICU room for the first 8 days of her life...we cannot emphasize enough how fabulous every Nurse and doctor was that cared for her...
A last snuggle with mom in the NICU
Finally wireless and in clothes!!!
Family picture before we left NMH
First family pic on Leavitt
MC's own beautifully decorated pink Christmas Tree (thanks so much Nancy Fitzgibbons)
Our sweet little candy cane :)
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