Happy Homecoming

It's finally here - the homecoming we have been waiting 158 days for. That's right, after 158 days we brought Alexander home. After driving a total of 10,125 miles to visit our son, we drove the final 62.5 miles home on April 24. 

The feelings were indescribable. Excitement, fear, nervousness and sheer joy. We spent the night with him on April 23 for our "apartment experience" - when they put him on his home monitors and we are responsible for all of his cares. A test run, if you will. We passed with flying colors. We had a final weigh in and were nervous as he had lost weight. Finally, we were told that he would definitely be released and started the process for discharge. 

Final night in the NICU.

In my going home outfit - ready to go!!

Nurse practioners, his music therapist, child life therapist and many other nurses prepared a song for him, complete with guitars and sound shakers, "Alex is Leaving the NICU Today," sung to the same tune as Raffi's "Going to the Zoo". I shed several tears and tried to hold it together. All the paperwork and prescriptions were filled like a well-oiled machine. All of our training on his oxygen and home monitors was completed. And then it was time.

Leaving Bay 5. 

We arrived home around 1:30 in the afternoon. It was quite the evening. We had the rest of Alexander's oxygen tanks delivered and learned how to use them. Andrew welcomed his brother home, which was completely heart warming. He was so excited to have him home!

 

Then we tuckered the little guy out. He woudn't wake up for a feeding - which for us, is a signal that something is off. His temp was a little low and his alarms started going off signaling a low heart rate. This alarm is one of the loudest, scariest things you have ever heard. I have to admit I spent the night on the floor next to his bed, afraid to really go to sleep. We called the University twice to touch base on his feeding and temp. We were able to finally wake him at midnight and he took 2/3 of a feeding. The nurses at the U thought he may have just been worn out from all the activity of coming home. 

Fortunately, he ended up completely fine today - eating every 3-4 hours and doing much better on the bottle. It's going to be a work in progress to get our little man to eat with consistency - he is VERY slow and VERY particular about eating. 

Nana arrived with expert Grandma help and it was perfect to have her and Pete's parents around. It really does take a village - especially with a 2 year old! Andrew decided he was finally ready to hold Alex - we have been asking him each time he's been around him the last few months. 

Overall we are just thankful for our little miracle and are truly enjoying being home under one roof. We are settling into our "new normal," with oxygen tubes strung throughout the house, visiting nurses coming a couple times a week, administering breathing treatments twice a day and giving several medications. We can not thank all of you enough for following Alexander's journey home and being there for us along the way. The calls, texts, cards, gifts, dinners, thoughts and, most of all, the prayers have been incredible. We hope that you continue to think of Alexander and see him as an example of how great God is and how miracles happen each and every day. 

Our journey is far from over. We have follow up appointments locally and with the University. We are watching reflux into his kidneys and hope we can avoid surgery in the future. We will closely monitor his growth and development and will get him any help he needs to thrive but we know our love will take him far. 

Much love and peace to you and yours always and forever.

Prayers

It is our bedtime routine each night to put pajamas on, get a glass of milk, brush our teeth, read a book (most nights Go Dog Go) and then have prayers. Last night, during the holiest weeks of the year, we accidentally skipped right to bed. Andrew quickly reminded us, "Prayers Daddy, Prayers Mommy!"

We say a standard prayer - the same one that's on a prayer card attached to Alexander's hospital bed. Then at the end we say, "Pray for Alex. Alex come home." Those six words are even sweeter coming from our two-year-old's mouth. 

We have much to be thankful for this year and especially this week. Praying is one way that we can give thanks and reflect. Alexander had surgery on Monday and came through just fine. I was probably more scared and broken up about it than he was. He came back with a crowd of doctors, nurses and respiratory therapists. They had to put him completely under for the surgery, which meant he needed to be intubated again on a ventilator. The fear was not knowing how he would respond and if he would revert backwards. Fortunately, once back in his room they extubated him right away because they thought he would pull the tubes out himself. He's becoming quite feisty!

He slept most of the rest of the day and into Tuesday. By today he was eating normally from a bottle again and had resumed his normal schedule. No word on the next step but we need to continue to work on eating as that's the last thing on our list to go home!

Tomorrow, Alexander is 5 months old. We were reflecting on how the hospital walls have started to feel like home and my daily trips to Iowa City like normal. We are thankful for everything this place has given us and are looking forward to the day when 'normal' will instead be at our new home. 

This week we focus on being thankful for all the prayers as they have helped Alexander with his recovery and making further steps on his way home!

Before surgery. 

Coming into recovery. 

Out tribute to Jesus and the Iowa Hawkeyes. 

Hurdles

I was never a runner. But if I was, I think the hurdles would have been the most difficult - especially with my height. The hurdles are the steady challenges in a long race. Alexander is training for his race home - a marathon - with steady hurdles. 

We have been working on eating for 3 weeks now. It started quickly but we had another hurdle sneak up on us and last weekend Alexander just refused to eat orally anymore. We changed a few things - started feeding him every 4 hours instead of every 3, quit mixing in liquid protein so it would not impact the taste, and pushed him back to phase 2 (eating orally twice in a 12 hour period). It has helped but he's moving slow. 

Tomorrow is another big hurdle - surgery. How he responds and recovers will completely impact how far he has in his race home. He is having his hernia repaired, being circumcised, and helping descend a testicle. A lot for one little man to handle. We are hoping he bounces back right away so he can continue his steady progress and get home. Time will only tell. 

This surgery will be one more thing to check off the list to go home. The last thing will be to finish learning to eat!

The race continues...

Meme got to hold Alexander for the first time after returning home from the Canadian Tim Stop tour. 

 

Got to go home for a quick trip. 

Two

Two! First, two came together. Then, we got two pets. Then, we had two kids. And now we have a two year old. Two tends to be a milestone and one that we will cherish. 

People complain about the terrible twos - but I have found joy in every corner. They way that Andrew has to work to bend his fat fingers to show that he's now two. The way he will hold his chubby hands together while we pray at dinner and before bed each night. They way he says "Pray for Alex. Alex come home." - as only a two year old can say his brother's name. The way he will sit and do puzzle after puzzle with such contentment. We feel so blessed with our clever, calm, silly and fun two year old boy.

We had several celebrations this past week - many for our new two year old and many for our number two son. Andrew spent the week with Nana and Papa G and I think they were actually sad to see him come home. Papa G said Andrew was just a joy to have around. They golfed, shot hoops, did puzzles and played with the cousins. 

First time Papa G holding Alex.

Birthday present from Papa G and Nana.

Then we had three birthday celebrations in a row - each with different people as they were in town. Andrew is obsessed with the birthday song and gets a big goofy grin when we sing. 

Alexander is making huge strides. On Saturday, he was moved to Bay 4 - a less critical bay for the NICU. This is a more private room with a couch for guests or sleepovers and a full bathroom with shower. I will be able to stay with him this week. On Monday, he came off his ventilator!!! A huge celebration!! He is now on 1 liter of oxygen. This is something he will come home on but it just depends on how much. 

 

He's also nursing well and has been having one bottle each evening. This has moved him to Phase 2 of eating - two nursing sessions or bottles every 12 hours. We hope he can continue down this path as this is the big thing on his checklist to do before coming home. We are getting so close!!