A Miracle in the Flesh

A NICU mom from one of the Facebook groups I'm a member of posted a wonderful story recently. Her mother went to church to pray for their new preemie addition. She began to cry and a nun approached her to inquire why. She shared the news of the preemie's birth and how scared she was. The nun replied with a big congratulations, exclaiming how excited she was for the family. The grandmother was taken aback. The nun said, "Your family is blessed to experience a miracle in the flesh." 

I love when people ask how Alexander is doing. It's not an easy question to ask on their part, but I appreciate it. It's not always an easy question to answer either. I've been overcome with worry about Alexander's future, what struggles and obstacles he will face due to his prematurity, how we are going to handle his feeding struggles and how we are going to resume a somewhat normal family existence. 

Today I was reminded there is an easy answer - "he's amazing, he's our miracle in the flesh."

We had our first follow up with the University of Iowa and our favorite physician, Dr. Klein. Our team couldn't have been happier with Alexander's progress since coming home. "He's just a normal baby," exclaimed Dr. Klein. I think I was literally floating on air. After weeks of stress about feedings and weight gain, we were told to take it easy a bit. They did increase the calories of his recipe (we mix breast milk with formula and protein powder to make it higher calories), and that should help him decide how much he wants to eat and still get the calories he needs to gain appropriate weight. 

They told us to just enjoy having him home and reminded us to not treat our home like the NICU. Basically quit stressing so much. They even said that it was okay to leave the house - as long as we didn't go to places that were crowded or where people would touch him. They recommend getting netting to place over his car seat so that people don't reach in and spread germs. Him getting sick would be a HUGE set back and could place him back into the hospital. 

He seems to be moving along just fine with this development, but we are still in the early phases.

He was also able to be weaned on his oxygen, so now he's down to 3/4 of a liter of oxygen. We will see how he's able to handle this moving forward. Dr. Klein reminded us that he's the boss and will move at his own pace. We go back in July for our next appointment.

After our appointment, we went up to the NICU to say hi to our favorite nurses and staff. Many were there working today, including our favorite, Mary. It was great to see everyone and fun to show off our fat, little guy. We also stopped into parent group and were able to talk to a bunch of parents who had that same scared, hopeless look I had 6 months ago. I like to believe that showing off our little miracle gave them hope that they too would be going home at some point. 

I know it's not the homecoming we all planned or dreamed about, but a miracle rarely is. 

Happy

Just after I had Alexander and was home one afternoon during my recovery, I happened to be watching Ellen (probably when I was supposed to be sleeping). Pharrell performed his new song "Happy". It went like this:

It might seem crazy what I’m about to say

Sunshine she’s here, you can take a break

I’m a hot air balloon that could go to space

With the air, like I don’t care baby by the way

[Chorus:]

Because I’m happy

Clap along if you feel like a room without a roof

Because I’m happy

Clap along if you feel like happiness is the truth

Because I’m happy

Clap along if you know what happiness is to you

Because I’m happy

Clap along if you feel like that’s what you wanna do

It was the perfect time for me to hear a song like that and it became my theme song in my own head for the months to come. 

I can finally say that happiness is here at 1940 Cromwell and it's here to stay. We couldn't be happier to have sleepless nights, hear baby cries or have a winey 2-year old. 

We've survived our first 11 days at home. The breathing treatments, monitors, oxygen, feet of tubing strung throughout our home and our new schedule is all becoming quite normal. Even Andrew told his daycare, "My brother has cords," which we have repeatedly warned him not to pull on or touch. 

His monitor alarms have gone off several times - and no matter what it's like a heart attack, but thankfully they have been minor and he has self corrected. 

Our biggest challenge is trying to get Alexander to eat enough to continue to gain weight and to give Andrew enough attention that he quits morphing into a 14 year old girl (ie crying fits for no apparent reason). Alex is weighing in at 11 lbs 11 oz as of Monday. 

We have a nurse that comes twice a week for an assessment and weight check. She's helping us with his feedings too. We are working on trying to get into more of a routine but it's slow. I'm sure we will get there - one day at a time. 

One hard part is being confined to the house and not being able to have visitors - this is to avoid germs. Alexander is very susceptible to colds and infections so we want to avoid illness at all costs. But it's hard to not be as social as we are used to. Andrew has become OCD about washing his hands and loves using the "special sauce" - otherwise known as sanitizer. 

Alexander is a great baby - smiling and cooing at us. He sleeps and eats and poops and is just a joy to be around. He likes being held and enjoys watching Andew run around like a crazy man. 

Everything we have gone through in the past 6 months helps keep us grounded and reminds us to focus on the small, funny, happy smiles throughout the day. Happy - it really is that simple sometimes.

Most favorite sleeping position in the same cradle his mommy had. 

Brotherly love. 

First walk outside - yes it's still May and still cold!

Passed out on the floor of his room - where I've spent several nights. 

Meeting Nana for the first time. 

 

These two are going to be trouble!!

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!!

Feeding Frenzy

Today was a special day. Today, four months of pumping was completely worth it. Today, I was able to bond with my son as I've wanted to since he was born. Today, Alexander nursed for 10 minutes. He then had the rest of his food through his feeding tube and fell soundly asleep on my chest. 

We got the word Thursday that we would be able to start nursing on Friday. His ventilator pressure was reduced to 6 so the amount of pressure is conducive to allow baby to suck and swallow. He latched right away and the nurses and oral therapists were thrilled. He only would suck for a few minutes on Friday and Saturday, but Sunday he acted as if he always ate through his mouth. It's exhausting for him and he will pull away to rest and breath but it will get easier with practice of the suck, swallow, breath pattern. We will continue practicing with nursing and then introduce a bottle after a week. Bottles are easier because they are less work and he will need to take them to have his supplements of protein and higher calories. 

This is a big step - there was cheers from the hallway when our nurse let everyone know how well he did. So this is where we stand on things Alexander has to achieve before being released:

1) Control his body temperature - CHECK

2) Get off the ventilator and only be on oxygen - we are at 6 so 5 more to go! We have been doing 2 settings a week so if he keeps up this pace he could be done in 3 weeks. He will come home on oxygen. 

3) Eat all meals orally and ditch the feeding tube. We are only in Phase 1 so it's up to him how fast we can go. 

4) Surgery - Alexander has a hernia that needs to be fixed (pretty common in micro premies because of all the air pushed into their bodies) and still needs to be circumcised. This will happen right before he's ready to go home. 

Our doctor said this weekend 4-6 weeks, so we could have our baby home between Easter and Mothers Day! And we will have a home ready for Alex - another 12 days of construction and we move April 4! So excited to be in our new space!

So happy and thankful for today! Live in the moment for it's all you have!

9 lbs 10 oz as of 3-20-14. And we can see that beautiful mouth now that the feeding tube goes in his nose!