Omahappiness :-)

I coined this term today, because it is a real thing.

Omahappiness | oma’hapēnes | (noun) – the joy that one experiences when they arrive at Omaha Children’s and realize how much more wonderful this place is than any other hospital: I have been full of Omahappiness since arriving here.

It’s been quite a trying week for us, but it ended on the best note. Zion and I flew to Omaha yesterday!!! But it took a lot of work and advocating to get him there. We felt Zion should have been put on a plane immediately once he healed from his staph infection one week ago. The team in Cincinnati however had other plans, and decided they wanted to completely wean Zion off of nitric oxide first. We disagreed with this plan, not only because Zion was showing he wasn’t tolerating it, but also because we felt this was an unnecessary delay in light of the reality that his “window” was closing for heart surgery. Dr. Hammel has learned that the earlier Trisomy hearts are repaired, the better the outcomes. So the past week has been a literal tug of war between us and the hospital.

That waiting period was very hard for me emotionally – there were lots of tears shed, and some anger to pray about. It’s hard to feel like you have no say or control in a plan that involves your child – especially when you disagree with it. God was definitely stretching my faith in allowing this delay to transpire though. It revealed a weak area in my faith that needed girding up.

This situation with the hospital seemed to be, to my husband and I, like a modern day version of something that happened in the days of Moses. There’s a story in the Bible that documents one of the most unbelievable miracles that God actually did on the face of the earth. The book of Exodus records how Moses was in Egypt pleading with Pharaoh, on multiple occasions, to release the Israelites. He says to Pharaoh, “Let my people go!” We felt like we were in a similar battle with the hospital. It took God’s strength to not scream at the top of my lungs “Let our Zion GO!” Pharaoh finally relented and let the Israelites go… but not for long. Likewise, the hospital finally agreed to allow Zion to fly out on a Tuesday, but then all of a sudden the plan changed again. He wasn’t going anywhere anymore.

In Exodus 14, the story goes on to later describe Moses leading the Israelites out of Egypt and to the edge of the Red Sea. As they got to the Red Sea, they looked back, and were terrified to realize that Pharoah and all his army were pursuing them! Pharoah had changed his mind and didn’t want to release the Israelites anymore. He was coming for them from behind, and the wide open sea was before them – God’s people had no where to go! In similar fashion, when the hospital changed their plan to release our precious Zion last Tuesday and decided to hold him longer despite our wishes, I felt like the Israelites, trapped with no where to go! The similarities are uncanny.

BUT GOD, in His awesome and mighty power, parted that Red Sea just in time and the Israelites walked across the sea on dry ground. The Bible recorded this amazing moment in history because God actually did this! When my husband reminded me of this story on a very tearful and frustrating day, it instantly shifted my perspective back to the unseen realm. I knew in that moment that God was going to part the sea for Zion. And HE DID. Thanks be to God, He prevailed, orchestrated my steps, and the hospital finally released Zion to go to Omaha! And I’m believing in faith that they released our son just in time.

Shout with me… HALLELUJAH!!!!!!!!!!!!!!!!

Leaving Cincinnati Children’s was most definitely bittersweet. Bitter because this has been his home the past 3 1/2 months and we have grown close with many amazing staff members. And we are so grateful to this hospital for keeping our son alive throughout many bumps in the road. But sweet because our precious son was finally on his way to pursue a much needed heart repair that could give him more life.

As I was watching the team pack up Zion for transport, I spoke with one of the nurse practitioners. She said more than once how eager she was to see how Zion does after surgery. She seemed humbled by watching Zion about to leave her establishment because she told me how she’s used to babies being transported TO them from around the country, not being transported out. I was amazed when she then told me that babies being transported out of Cincinnati Children’s to another hospital has only happened rarely. I was emboldened in that moment because I knew that God was breaking up fallow ground in Cincinnati, ground that needed to be broken.

I also asked her what types of conditions babies have that get sent to them. A couple conditions she mentioned were babies born without kidneys, and babies with congenital diaphragmatic hernias. She said how their NICU has a waiting list of babies from around the country because they will treat such challenging cases as the ones mentioned above, when most hospitals won’t. It’s my hope and prayer that Cincinnati Children’s and other hospitals will choose to fully treat Trisomy babies in the same way one day. So that parents like us don’t have to fly across the country to pursue a heart repair that could have been done at a local hospital, if only the cardiology teams had the expertise and willingness to try.

We don’t leave Cincinnati with bitterness or anger toward their decision not to operate on Zion. We appreciate the fact that they were willing to attempt a less invasive heart repair in the cath lab, when many hospitals wouldn’t even consider that for a Trisomy baby. And we also fully respect their decision not to do an open heart surgery based on the current status of Zion’s heart, and how he responded in the cath lab. If a surgeon isn’t comfortable with a procedure, then of course we wouldn’t want that surgeon to operate on our child. But what Trisomy babies really need are heart surgeons with COURAGE. I truly hope that what Dr. Hammel is doing will cause a paradigm shift in the treatment of Trisomy babies. He asserts that early intervention and heart repair has better outcomes for Trisomy babies. And the photos of the Trisomy babies thriving post heart repair in the RT Facebook group are all the confirmation I need.

Here are some photos from our departure and some of our favorite recent memories from Cincinnati Children’s:

Zion’s adorably bubbly and very loving primary NICU nurse (Abby). We can’t thank her enough for the wonderful care she gave him and for advocating for his life. Abby we will miss you so much!!!
Zion’s first time sitting up in a chair. I think he liked it!
How much does bubba weigh today?
Zion’s first photo shoot! THANK YOU Alicia and Jody! (stay tuned for photos)
Zion’s first time wearing a full outfit. Isn’t he adorable?!!!!
Daddy saying goodbye to Zion before his flight to Omaha
What takes Zion to his happy place? This right here. As I hold his hand and press the backs of my fingers against his mouth, he gives me sweet little “kisses” as he falls asleep. That is THE BEST FEELING IN THE WORLD.

Zion tolerated the change to the travel ventilator with flying colors since he was in mommy’s arms for that portion. However he did not care for the next step though – being strapped into the TINY travel isolette. It also happened to be blowing warm air – our boy hates being hot! His vitals quickly dropped because he was so angry while trying to free himself from the straps. But thankfully God was covering Zion, and the team was able to get him stabilized with the help of a dose of anxiety medication.

Do you see the blonde on the right? That is one of Zion’s favorite Respiratory Therapists (Jen). She was truly one of our son’s guardian angels – always fighting for what was in his best interest. She cared for him as if he were her own child up to the very last minute, and I could sense she was deeply saddened to see him go. We will miss you Jen!
Zion gave up the fight after a dose of Versed.
This is the tiny little commuter airport in Cincinnati that we flew out of yesterday. I didn’t even know it existed until yesterday!
The LORD God Himself made THIS happen!

Zion didn’t care for the bumpy ambulance ride either, so that required yet another dose of medication. Thankfully that dose kept him asleep for the transfer from the ambulance to the plane. I was SO thankful he continued snoozing despite 80 degree weather outside, not much cooler of a plane inside, bright sun beating down on his face and some very, very hard bumps getting secured into the plane.

“Out of Zion, the perfection of beauty,
God will shine forth.
Our God shall come, and shall not keep silent;”

– Psalm 50:2,3

During the flight he woke up at a couple points and seemed agitated, so the flight nurses gave a couple more doses of medication. And then they gave one more final dose before landing to help with the ambulance transport to Omaha Children’s. I normally have an aversion to overmedicating my child, but in a situation like this, I was SO incredibly grateful for it being available and effective at getting my son to Omaha safe and alive!

The flight nurse did a great job keeping me updated as she comforted Zion by telling him stories 🙂
Somewhere over Idaho
We made it to Omaha – thanks be to God alone!
The flight nurse bringing precious cargo onto the Children’s transport truck – mama’s frozen breast milk!

From the second I arrived in Omaha, I have been Omahappy for sure. *Funny story: As we pulled up to Omaha Children’s in the ambulance, the Emergency parking lot was full. The driver wittingly said, “Oh no! There is no room at the inn for the baby.” I simply smiled and replied, “That’s okay. We’re perfectly content in the stable.” I knew right then and there that this was going to be an amazing, God-blessed experience. (And if I lost you at that part, pick up a Bible and read Luke chapter 2)

The differences between this hospital and the last are astounding, in a good way. But even more I feel so blessed that God made this happen for Zion. Tomorrow is Monday, and Monday is when everyone will be back into the hospital. I expect to meet many new doctors at the beginning of the week. And I look forward especially to meeting Dr. Hammel. Zion’s case will be presented tomorrow morning at the weekly cardiology conference. That is when the team will decide if they feel Zion is a surgical candidate and will put a plan in place for him. We are aware that based on Zion’s current heart status, there’s a small chance that surgery might not be offered here at Omaha either. We are hoping that doesn’t happen though, and that God will open a door here for surgery in order to glorify His name.

We will keep everyone updated with the Omaha team’s plans for Zion. In the meantime, Zion is doing great! Please enjoy some more photos and a video from our adventure to Omaha. 😁

The Omaha NICU team getting acquainted with Mr. Zion
Sleeping soundly his first night in Omaha, until he realized he was swaddled!
My sweet friend Lyrra made this beautiful macrame rainbow to grace Zion’s bedside
A dear Trisomy mama here in the NICU a few rooms down made these adorable letters to decorate Zion’s room. THANK YOU Jeanette for your heart to serve the Lord during your own trial.
King of his castle 🙂

PRAISES:

We thank the Lord for…

  • Zion and I making it to Omaha safely and him getting settled quickly into his new home away from home.
  • Rocking chairs in the patient rooms! God knows how much I love rocking chairs. I finally rocked Zion for the first time today! It’s the little things… 🙂
  • God also knows how much I love the sound of water. It is incredibly relaxing to me. When I learned of the beautiful babbling brook inside the Omaha Children’s lobby, I knew immediately it was a sign of God’s love for me. And of course I went to go experience it at my first opportunity.
  • How kind and welcome the Omaha staff have been. And how eager they are to learn about Zion.
  • The positive treatment changes that were quickly implemented to better optimize Zion’s care.
  • The incredible care for the needs of parents! Omaha does daily private rounding conferences for parents in the NICU where all of the doctors, nurses and practitioners who are involved in the care of your child sit with you in a conference room to review your child’s plan for the day. They also give families an electronic tablet during their stay that has their child’s chart, care plan, lab results, etc. all on the device. This is so neat! Both of these keep parents very well informed every step of the way.
  • Omaha allowing parents to suction their child’s trach! I can’t express how painful it is to watch your child drowning in their secretions while waiting on a nurse, yet being told you are not allowed to suction your child. I’m SO grateful this hospital doesn’t have that rule. I feel so much more empowered to help my child.
  • Finally, I have to share one of the most amazing works that God is doing right now. Currently at Omaha Children’s, there are TWELVE other Trisomy families who have babies here that are either awaiting, or have already had surgery by Dr. Hammel. I believe this might be the most number of Trisomy families that have convened on Omaha Children’s at one time. If you believe in a sovereign God who orchestrates all things according to the pleasure of his good will, then you can only come to one conclusion. This group of people who are here right now are not here by mere coincidence. They have been placed here by the Lord on purpose. It’s been an amazing day running into multiple mothers that I’ve become acquainted with through the Rare Trisomy Facebook group. But tonight it became perfectly clear as I ran into two of the mamas at the Rainbow House – Farrah (and her godly mother) and Melissa. We bounced all of these ideas off of each other in order to increase Trisomy awareness and support, and we also shed tears as we praised God in realized that we all have been called by God to be here together for a time such as this. I admired what strong and faithful women I was speaking with, and it hit me. God gave US these babies on purpose. And He has a great plan in store for our little Trisomy warriors. It’s a plan of redemption… and the plan is just beginning to unfold. Stay tuned. History is in the making. I believe the standard of care for babies born with Trisomy is about to be elevated.

PRAYER REQUESTS:

We are so grateful to know how many people are interceding in prayer on our behalf. There are a myriad of ways that you all can be praying for us!

  • Pray that God would give the Omaha team wisdom and discernment with the head-to-toe assessment they plan to do for our son.
  • Tomorrow (Monday) is a BIG day! This is when Zion’s case will be discussed in the cardiology conference to be considered for surgery. Please pray with me that God will open an effective door for Zion. My vision is that that the team will be courageous enough to perform surgery on Zion, despite his older age and progressed heart disease. And in doing so, that Zion will survive and thrive and embolden other parents with “older” Trisomy babies to do the same.
  • So many at Cincinnati Children’s will be watching and following Zion’s story! I do feel that hospital is somewhat “Trisomy friendly”; however, there still are some big gaps in treatment protocols for babies like Zion. I believe the institution might just need an infusion of HOPE. Pray that Zion will thrive post surgery and will ignite hope in the hearts of the cardiology team at Cincinnati, emboldening them to both speed up and further their surgical interventions for babies with Trisomy.
  • Pray that God would move in the hearts of big decision makers at hospitals around the world to change their treatment protocols for babies with conditions like Zion’s.
  • Pray for God to be with George as he will be staying home with kids until a surgery date is set. Pray that God would grant him abundant grace, wisdom, discernment, perseverance and patience in handling the roles of both mommy and daddy on the home front while mommy is away.
  • Pray for God to give our children grace during this time that I will be away from them. And that they would be easy for their dad with minimal meltdowns.
  • Lastly, prayer for me. I am entering an intentional (and much needed) time of drawing closer to the Lord through prayer and fasting during my stay in Omaha. As a mom, I have very little time alone, so I know that this opportunity to be alone for so long is the perfect time to draw near to God. There are so many areas that God has shown me that I still need growth in and sins that still need to be rooted out of my heart. Please be praying that this time away will be transformative in my heart and character. I am still a wretch in so many ways. And pray that God’s purposes for me while in Omaha will come to pass. Pray that I will be used as a light in the darkness and an encouragement to those in need.

7 thoughts on “Omahappiness :-)

  1. HALLELUJAH HALLELUJAH. I love Omahappiness. Thank you for bearing your heart to us. Some who you don’t even know. Thank you for reminding us that without God we can do nothing. I love your reference to the 12 families and I immediately said out loud “the 12 apostles.” Zion is where he needs to be and I will continue to pray for you and your family and also that a “surgery date” will be set soon. Peace to you mama and never stop fighting for your son. #ZIONSTRONG.

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    1. Thank you Tracy! And I love that revelation you had about the 12 apostles – I didn’t even think of that! However when I realized we had twelve, I thought morning about the 12 tribes of Israel. We are the twelve tribes of Omaha. 🙂

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  2. This is such good news and so many answers to prayer! I am continue to pray for Zoom and the cardiology team at Omaha this morning, as well as you and George and all your children. May God be glorified in little Zion’s body!

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  3. Thank you so much for the update! I have been praying for you, Zion, your family, and Zion’s careteam every time I pray. My ladies prayer group and my Torah study group and my Bible study class are praying as well. We will continue to pray, and now, we can add 11 more babies and families, and care teams to our prayers!!!
    Twelve means governance to me along with the 12 tribes, the twelve apostles because 12 is the number for government in the gemantria of Torah. I hope Zion has a surgery date by the time I write this. I can just see Father’s hand in all of this🙌🙌🙌 Love and shalom to you all. ❤🙏🙏🙏☝️

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    1. Thank you for the little Torah lesson. That is so amazing to learn about the government connection to 12. That gives me a lot of spiritual ideas of what God could do out here through us mamas. And we thank you so much for your prayers!

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