We had to report to pre-op at 6:30 a.m. It's no exaggeration when I say Annie has gotten up in the middle of the night maybe 6 times in her 4 months of life. (And before you fellow mamas of newborns start lynching me, remember that I do have five other children. I'm no stranger to agonizing nights and wishing coffee could be administered rather than poured. I AM STILL ONE OF YOU!!!)
Anyway, I digress......So the night before surgery she was not able to have formula after 4 a.m. Matt and I debated whether or not to wake her, since we couldn't feed her once she woke up in the morning. We ultimately decided against it since she never gets up to eat. Ugh, call it her 6th sense (she has an extra chromosome, so why not an extra sense too, right??) but wouldn't you know, this child woke up ravenous at 5 a.m. Inconsolable! As a result of her fasting (or maybe because they put her in a blue hospital gown when the girl would much rather have pink!), this was her demeanor during her pre-op exam:
We signed the official consent to surgery (gasp!), were introduced to some of the anesthesia team, and met Annie's surgeon, Dr. Richard Ohye (Oh-Yay!), for the first time. Let me tell you, as a person who in her youth used to be "star-struck" by celebrities, meeting this man left me "awe-struck" in a whole new way. Shaking the hand of the man who is going to be holding and repairing your daughter's heart? Pretty powerful stuff. Suddenly meeting Regis Philbin (yep, I sure did! Don't be jealous!) and years of perusing through People Magazine seemed sooooo unimpressive! This man's gift? Now that is impressive!
At 7:30 the anesthesia nurses came to get Annie. As they walked away with her, Matt cried and I went numb. She was out of our hands now, and in the hands of trusted doctors and nurses. But I felt a certain peace too, because I knew we were all in God's hands. And I could feel the spirit of my own mom, who was no stranger to heart surgery, assuring me she would be ok.
And so we went to wait for Annie......
About 2 hours later, a nurse came to give us the first report. Annie was doing great! She was now on the heart-bypass machine and Dr. Ohye had started the repairs at about 9:00. At 11:30 she came back to report that he was finishing the repairs, and by 12:30 Annie was off the bypass- machine and they were closing her chest. Dr. Ohye came in afterward to tell us the surgery was a success, the holes were patched, her valves were functioning great with minimal leakage, and we would be able to see our little victor around 2:00.
In a matter of 5 hours our daughter's heart had been stopped, repaired and restarted. And in some ways, so had ours.
Here was our first look at Annie, a moment more precious to me than the day she was born:
Matt's parents, my sister and brother-in-law, our parish priests, and a good friend were there with us in those early moments after surgery. It also happened to be Ash Wednesday, so Father administered ashes to Matt and I, and anointed sweet Annie.
The Holy Spirit was alive in that ICU!
Our pastor, Father Keith, has seen our family through some difficult times lately, and we are grateful for his friendship. Our entire parish community has been a tremendous beacon of love, support and prayer. It is truly one of our life's greatest blessings.
Later that night, Annie Face-Timed with her brothers and sister:
and finally had her first bottle since the night before:
Thursday, March 6, Day 3: Good News! Annie had a great night and was able to move out of ICU (already!) and into her own room!
Bad news? She was having a reaction to the morphine and was horribly itchy, puffy and blotchy. She was miserable! Poor baby.
Matt's Aunt and Uncle visited with us for the afternoon, which was a welcome distraction. Annie was still pretty out of it, but you could sense she recognized our voices and touch.
Later in the day she was beginning to be more alert and I finally held her! Boy did that feel good.
Friday, March 7-Day 4 She had another good night, and by mid-afternoon, our sweet Annie was back! Her eyes were no longer glazed over, and she was "talking" up a storm! Her nurses got the biggest kick out of her! The fluid output from her chest tube was really decreasing, so they were hopeful that it could be removed on Saturday. Once the tube was out for 24 hours, barring any other issues, Annie could potentially go home on Sunday! This was all going so smoothly....and so fast....almost too good to be true!?
Having a great "talk" with Daddy....."What's all the fuss?"
Saturday, March 8- Day 5. Annie ended up having more fluid output through the night, which meant her chest tube would stay in at least one more day. (We were actually ok with this. As much as we wanted to get home, the thought of leaving too soon also made us a little nervous!)
This day was filled with some more wonderful visitors, including Annie's brothers and sister! Mott Children's Hospital is a fantastic place for siblings! It was like a mini-vacation for the kids!
Admiring Uncle Tim's tan!
Happy to be in Grandma's arms
Some lovin' from my Dad (and no doubt my Mom too!)
There is a big family center/play room for siblings with daily organized activities. A Child-Life employee helped the kids build their own "hospital bear." They talked about Annie's surgery and some of the things they saw on her or in her room, and got to put replicas on their bears (nasal cannula's, scar dressing, chest tube, IV ports, blood pressure cuffs...) So cute!
Doctors Charlie, Jack, Emma and Max with their patients.
(Mason preferred to play with the abundance of toys!)
There was also a big indoor playground!
It was nice to have all of us together again!
Later that evening some good friends from home visited. They had some Annie-time, and then we went out for a nice, kid-free dinner (they have 4 of their own!) in downtown Ann Arbor. Matt and I definitely got a good taste (literally!) of Ann Arbor restaurants by the end of our stay.
At about 10:00 that night, we noticed Annie's heart rate starting to soar. She typically hovers in the lower 120s, and it was steadily climbing in the 150s, 60s....we even saw it get into the 190s! She was also running a fever, and with fever comes the fear of infection. New antibiotics were administered (she was already on some from the surgery), blood cultures were ordered and x- rays were taken. It was discovered that she had a very small pneumothorax in her right lung (a pocket of air around the lung, causing part of the lung to "collapse") They put her back on oxygen in the hopes of helping relieve the pressure in the lungs, and said they would do another x-ray in the morning. Tylenol helped to bring the fever down, and by the time we left her for the night, her heart rate had also stabilized. She was sleeping and comfortable.
Sunday, March 9-Day 6 The hotel Matt and I stayed in was attached to the hospital. It worked out great not having to leave the hospital and worry about parking every day. We would stay in Annie's room until midnight (shift change), then head down to our room to try and get some decent rest. The "bed" available for us in her room was more like a plastic love seat, likely made from the same gor-tex material they use to mend hearts! Lol! (sort of) We would come back in the mornings around 8:00 (which was also shift change) so we could be updated when they did morning rounds with a nurse practitioner, dietitian, cardiologist, pharmacist, respiratory therapist, and case worker.
When we got back for rounds Sunday morning, they said her fluid output overnight had been minimal and that her chest tube was able to come out today (Hooray! She would be so much easier to hold!) Then they took her down for another x-ray (Boo! Enough with the chest x-rays already!) to check the pneumothorax.
Can you understand now why I hate watching these??
They discovered that the pneumothorax had actually gotten much bigger, and she was going to need a mediastinal tube (all of these "big" terms we were learning!!) to release the air from around the lung. Turned out we were trading one tube for another. Annie was taken down to ICU for the procedures, and we were sent back to the waiting room.
For some reason, I began feeling more anxiety at this point than I had during her surgery! This was a rather simple procedure in the scheme of things, but I had such pit in my stomach. Maybe it was because we were expecting and prepared for the surgery, whereas this was a surprise; our smooth sail had suddenly gone off course! Or maybe I was just getting tired. Whatever it was, I sure was happy to see her when it was over!
Another tube in her little body. Ugh..... But at least the big chest tube was now out!!
My sweet, brave girl....
Later that evening we went to Mass at the beautiful St Thomas the Apostle Church. During Communion they sang one of my favorite Matt Maher songs, "Lord I Need You;" a song that I had played over and over at home as I prepared for this week. Once again I felt enveloped in God's grace and peace (not that it had ever left me, but so many times I forget to draw upon it!) God is so good to us. And boy do I need Him. All. the. time.
Monday, March 10 - Day 7 Other than another chest x-ray in the morning (seriously, make it stop!!!), this was a good and uneventful day. Annie actually loved the walks to and from the x-ray department. We could take her in a stroller now that she was unplugged from everything except the tube in her lung! Her lungs looked nice and inflated so they anticipated removing the tube on Tuesday. This meant we could likely go home on Wednesday! We were ready!!
My sister brought the kids up to visit again after school. I can't begin to convey the love and gratitude we have for her. She managed our whole crew, and their (mountains of) laundry, and (constant) meals, and (dreaded) homework, and (hectic) schedules....while we were up at the hospital for these 2 weeks. Not an easy task, even for those of us in the trenches every day! It took such a load off knowing our kids were being loved and cared for when we couldn't be there, not to mention she has been one of Annie's fiercest prayer warriors. Our Mom would be is proud.
Sibling love.....
We got away from the hospital for a bit and went to The Pizza House with Vincent's family....(another great restaurant to add to our list, and waistline!)
And we enjoyed walking the halls with both Annie and Vincent later that evening! It felt soooo good to get them out of their rooms!!
Annie and Daddy coming up with an exit-strategy....
Tuesday, March 11-Day 8 After her morning x-ray, they determined that Annie's tube could come out (Hooray!) She was now 100% unplugged (and could wear her own, pink, clothes!!) And if she was still clear tomorrow, maybe HOME??
Wednesday, March 12-Day 9 Guess what we woke up to??? More snow! And another snow day (#14!) for the kids back home. Poor Mary. Did I mention how much I appreciate her?? It did make being stuck in the hospital a little more bearable though. Who wanted to go out in this??
And yes, I said stuck. Although Annie's (final!) x-ray showed clear lungs, she wasn't going home as we hoped........ Overnight, her foot had become a deep purple in color and her nurse had difficulty finding a pulse. They ran a Doppler over it and determined she had blood clots in her left leg and foot. Ugh. They started her on shots of Lovenox (a drug similar to Heparin, a blood thinner) twice a day for 6 weeks. We had to wait until Thursday to check her blood levels from the Lovenox before she could be released. Too high of a level meant a risk for bleeding, too low meant it was virtually doing nothing.
And guess who had to learn to give these shots for the next 6 weeks? You got it. Moi.
Whaaaaaaaaaaaaaaaaa! I had been trying to decide what to do for my Lenten penance. I think I just found my answer.
Thursday, March 12-Day 10 So, were we going home???? They did her blood work at 1:00 a.m.and the answer was....."NO!" (insert wailing and gnashing of teeth!) Her levels were too low so her dosage had to be adjusted and tested again the next day. Oh, and our kids had another snow day! Ugh.
We decided to check out of the hotel, and in the hopes of salvaging my sister's sanity, sent Matt home to reclaim our children. We decided I would just stay in Annie's room and he would sleep at home. He picked up the kids and brought them back up to the hospital for the day. They had more time with Annie......
.....and swimming at the hotel pool (where Vincent's family was staying), and a pizza party on the top floor of the hospital, and a visit from some U of M athletes. I'm telling you, they do all they can to make the stay as enjoyable as possible for the families.
Friday, March 14-Day 11. We waited all day to hear what was music to this Mama's ears.....
"YOU CAN GO HOME!!"
The only hard part was having to leave behind Vincent and his family. The good news is, though, he was home a couple of days later and both kids are doing great!
We arrived to a barrage of "Welcome Home!" signs made by some very happy brothers and sister!
Oh how I love you, my little victor!
Bless your now-perfect heart!
And thank you for transforming mine!
