Had to take some final pre-op photos of baby Joey and his beautiful white skin and chest. He had a great night Tuesday night-- he slept well. We fed him at 4:15 am and again at 5:15 am before his cutoff of 5:30 am.
I enjoyed this 5:30 am feeding more than I have every enjoyed any other feeding. I held him and talked to him and told that I was going to be here with him every single step of the way. I told him that I loved him more than I ever thought would be possible and that I would never, ever change a single thing about him. At 5:15 am on Wednesday, all I could think to myself was, "Baby boy, I hope I have held you and loved you as much as a mom possibly could up to this point."
|We decided to head into surgery Superman style.|
|Are we ready for this Grandma?|
|Uh-oh-- starting to get grouchy around 10:30 am while we wait for anesthesia.|
Hard to describe those hours you wait. The case before Joey's was incredibly complex-- an eight-day-old girl who had a Norwood procedure being done. We were supposed to be at anesthesia at 10:30 and back to surgery around 11:00. They didn't end up taking Joey until about 1:10pm. And then we waited. And waited. And waited. You know the old Tom Petty song..."The waiting is the hardest part." My brother's girlfriend, Emily, a recent nursing graduate of U of M kept telling us that no news is good news.
|The waiting game.|
Post-Op-- warning--surgical photos
At about 5:00pm we got the call that the surgeon would be out to talk to us. As soon as we saw his smile our hearts warmed. He said the ASD hole was quite large, but that the repair had gone very smoothly and they used the pericardium around Joey's heart to patch it. He said the mitral valve was much smaller than expected given the size of Joey's heart, but he did stitch it. The mitral valve will continue to need to be followed throughout Joey's life. Most importantly-- Joey had successfully made it through the surgery.
It took about another hour and a half before we were allowed to go and actually see him. We jumped up when the nurse came out. I was so nervous, but as soon as we turned to the corner of Pod A and saw him, I felt literally like a million bucks. He looked so pink! So beautiful. His beautiful blonde hair shining like a halo-- he truly looked like an angel. He was resting so peacefully that the "zipper" in his chest, the bloody chest drainage tube and all the other wires and tubes made no difference at all. Our precious baby boy had survived! VICTORY!!!!
His first night he was for the most part, very stable. He had to have some meds to help bring his blood pressure down, but overall, he looked fantastic. Late in the night we met a social worker who has an older brother who is 45-years old and who happens to have Down syndrome. It was so fun to talk to her and to get a sibling's perspective. I so often wonder what it will be like for Tommy to have Joey as a brother and hearing her family stories was so touching and just reinforced that Joey has been sent to our family for so many amazing reasons and lessons that we will learn from every day. It was a wonderful way to end such a roller coaster day of emotions.
Thursday at 6:00am, Joey was extubated. YES!!!! Another victory! We did not stay in the room for this procedure as we had been warned by both doctors and nurses that it would not be pleasant to witness.
Thursday was full of milestones and the gradual removal of wires, tubes and meds. We were able to finally hold him. We were able to feed him a bottle. He got his catheter removed.
It was an incredible day and near the end of it, we found out that he had hit his 24 hours post-surgery and would be moving out to the general floor.
|Getting to hold him for the first time.|
|Nurse Ericka--she was incredible.|
|His photo collage from home.|
It was so hard to leave the Cardiac ICU, but there were new babies coming in who needed the one on one care that helped Joey get through his first post-surgical 24 hours. By moving to our new room we also gained a roommate--a beautiful little pixie of a girl who turned 2 in April. Miss J just had her fourth surgery. Yes-- her fourth surgery. She has been in the hospital since May 23rd-- 17 days.
That's the thing with children's hospitals. There are so many children and every one of them has a battle story-- many have battle scars. It makes me so appreciative of all of the doctors, nurses, social workers, lab techs, surgeons-- all the people who take care of these miracle babies and help make their lives better.
|Moving out to the general floor. Bye bye ICU!|
|Getting settled in for night two.|
The next few days will be long and tough, but I can't explain how full my heart fills. How grateful I am to see and hold and feed this precious miracle boy. How much I appreciate the incredible prayers, prayer lists--- the incredible outpouring of love for this one little boy.
There are times I feel so guilty and so mad at myself for ever being angry and upset that Joey has Down syndrome. There are times when I whisper my silent apologies to him in the middle of the night. We have come so far from the fear and ignorance of a year ago when we knew nothing about having a baby who has some "special" needs. What this little boy has taught us in the short nine months of his life is that...
There are no guarantees in life.
Doctors are incredible, but they aren't always right (and we are sometimes glad for that!).
An extra chromosome is not the worst thing to happen to a baby or a family.
Prayers can support miracles.
There are angels walking next to us every day.
Children are a gift and are to be loved, cherished and celebrated.
Everyone has a story.
God is good.
Tomorrow's goal is to get Joey to smile. Until then, we thank you for your powerful prayers, your belief, your hope and your love of a little boy who has brought nothing but incredible joy, appreciation and meaning to life.