Twists and turns

It’s Sunday in Omaha. George and the kids arrived Thursday, and we checked out a local church today. After the trying few days that Zion has had, I definitely needed to be refreshed in the Word and surrounded by the body of Christ. Ever since my Omahappiness post, Zion took a turn for the worst. I’ve been silent on social media because it’s been a busy time for me between that and my family recently arriving. But God has made His presence known and has been faithful throughout this time.

I’m learning so many things about caring for a Trisomy baby through this journey God wrote into my life story. One of them being that every hospital NICU has a different “demeanor” in regards to treating babies. Cincinnati was certainly more aggressive in their treatments for Zion and in making changes. Omaha is on the more conservative side and doesn’t like to make changes quickly. This has been hard for my decisive personality that likes to see progress made.

Zion, like many babies with Trisomy 18, has frequent episodes where he will “desat” (meaning his oxygen saturation will drop a bit). This has been increasing as his heart and lung disease progresses. One thing I noticed right off the bat when arriving in Omaha was that these desats seemed to scare the nursing team in Omaha much more than they scared the Cincinnati team. I didn’t expect that at all. Part of this might be that they are still getting to know and understand Zion. But I do believe part of it is just simply how they do things.

Because Zion’s vitals fluctuate, and this makes them so uneasy, they have kept Zion’s oxygen on his vent very high, and they have also used sedation medications exponentially more than Cincinnati did. This also has been hard to watch. I’ve been somewhat aggressively trying to help them understand Zion’s baselines (what is normal for his vitals), but this takes time as they get to know him and trust in him develops. So for right now, he seems to be scaring everyone in the NICU, and the team seems to feel the safest bet is to keep him “comfortable” (aka – asleep).

Since my last post after the failed trach change attempt, Zion was started on a cocktail of medications to keep him still and calm. These ranged from a paralytic to keep him motionless, anxiety medications to keep him calm and pain medications to ease any pain he might be having while paralyzed, just to name a few. He actually had 12 different IV pumps going at the same time a couple days ago – I believe that’s a new record for him.

Zion’s 12 IV line pumps

The initiation of the paralytic, and ensuing lack of movement, slowly caused Zion to develop a massive amount of swelling. In one day alone my poor baby gained 2 pounds of weight due to excess fluid in his tissues. That combined with the fact that he was paralyzed and unable to respond in any way was SO hard for me. Much harder than I expected. My baby looked so different. I hadn’t seen his eyes, his facial expressions, and his personality for days. I missed his soft little kisses on my hand. He couldn’t grab my fingers. And with him lying there motionless, he appeared to be dead, if it weren’t for the vent breaths he was being given causing his chest to rise. It was definitely messing with my head. So I broke down crying at his bedside more than once.

A very swollen Zion while on the paralytic
IV lines EVERYWHERE!!!

I couldn’t wait for this paralytic to be removed because I felt like the paralysis was causing him other problems. His right lung (which was already compromised) ended up collapsing multiple times. I personally believe this was because he was paralyzed and couldn’t work up and cough out his secretions. Secretions left in a lung will cause it to collapse. And the massive amount of fluid he was carrying was really difficult to see for so many days in a row. In Cincinnati Zion was kept on a diuretic daily to shed excess fluid. But in Omaha they are much slower to use Lasix. And with Zion’s vitals scaring the team and not being stable enough, it seemed that Zion getting his heart cath in order to determine eligibility for heart surgery was being delayed. God is most definitely working on my patience out here.

Early Thursday morning, I got my first scary “come to the bedside now” call since being in Omaha. Zion’s oxygen saturation had fallen down to the teens, at some points being zero, and the team was very concerned because they were unsure what was going on. I immediately called George to pray and then prayed as well while running to the hospital from the Rainbow House since the shuttle wasn’t available that early.

By the time I arrived, Zion’s vitals had stabilized. You could see the team was perplexed because he literally turned a corner and things finally began improving after they called me. I attribute this change to nothing other than answered prayer. God had heard, and God was helping Zion. During this time I also got to meet Dr. Hammel again briefly as he was leaning on the bed trying to put an arterial line in Zion. They were attributing this episode to worsening pulmonary hypertension (a PH crisis). Oh how I wished Dr. Hammel could take Zion right then and there and just repair his heart, but Zion would have to remain stable and come off of some of these medications first.

Another thing I have noticed in this NICU journey is how the attending neonatologist really sets the pace of treatment in a major way. So the rate at which change can happen depends largely on who is on service at that time. I believe this is largely why progress came to a standstill for so many days when we first arrived in Omaha. The neonatologist on duty I later came to find out has very conflicted views about treating Trisomy babies. He seemed to have a “doom and gloom” perspective about the Trisomy diagnosis – not at all what I expected in Omaha. But later that week when a different neonatologist came on board, one who was more proactive and also was open to hearing my concerns and desires, we finally began making progress! The order was finally put in to begin weaning Zion down on oxygen and off of the paralytic. Moral of the story – make as much progress as you can when the proactive neonatologists are on duty.

But God has been so faithful during this time and has been at work behind the scenes. The other day, just after all of us Trisomy moms were texting about him, God orchestrated me having a very candid 30 minute conversation with the “Trisomy unfriendly” neonatologist. He was unusually open with me and I was able to learn more about why he has the views that he does. He shared that he is a Catholic and I also shared my beliefs with him. And then at the end of our discussion, with him on one side of Zion’s bed, and me on the other, I shared the gospel with him. He appeared as though he was holding back laughter when I shared it, but I shared it nonetheless. I believe he needed to hear why we have hope for Zion, despite how things appear. And the reason for our hope is in a Person – Jesus Christ.

This has been a trying week with setbacks among most of our babies. Some were recovering from major surgeries. Others appeared to be getting sick. Another family got difficult news that their newborn baby’s heart was so complex that doctors didn’t know how she was even alive, and they predicted she would never leave the NICU. And then my little Zion had his episodes. Yes, we needed encouragement, because with everything happening at once, it felt like we all were under a spiritual attack. This comes as no surprise really. All of us mothers have great plans and desires for increasing awareness and improving care for Trisomy babies. So of course the enemy wants to destroy that hope and motivation.

But God, in His kindness, sent us Trisomy moms a perfect stranger to be our encourager. Her name is Sonia. She’s from Africa and has the most infectiously exuberant personality. And I now refer to her as our “Barnabas”. She’s one of those people who are so full of the Spirit, that you bubble over with joy just being in her presence. She walks around the hospital hallways saying, “Jesus, Jesus, Jesus” and singing praise songs loudly. Her mind is on Jesus all day, and it shows. On a particularly hard day for many of us moms, one of the mothers, Melissa, had scheduled a Bible study and prayer meeting for whoever wanted to attend. Initially I was certain I would attend. But as the morning progressed into a tearful day for me, I really just wanted to be alone and by myself … BUT GOD.

It is not good that man should be alone.

Genesis 2:18

I ran into Sonia as I was getting out of the elevator to go grab lunch, and she asked me if I was coming to the prayer meeting. I told her I would try but might just spend time by my son’s bedside. But by the time I reached the cafeteria, the Holy Spirit was convicting my soul that attending that meeting was exactly what I needed and that I must go. So I obeyed. And boy am I glad I did!!

The meeting was filled with such goodness. Such laughter. Such blessing. And many tears of joy. We all edified and encouraged each other with the Word – Sonia in particular had much to share. I felt God impress upon me that I was there just to listen and soak it all in. Sonia brought us communion that we could all take together, as well as some amazing home-cooked food for lunch…meatballs in tomato sauce and the most melt-in-your-mouth plantains I’ve ever had! She joked that she was feeding us “manna from Heaven”. Immediately when she said that I also thought about how God fed Elijah by ravens to sustain him (1 Kings 17). That’s what God did in this meeting. He fed my parched Spirit through this perfect stranger.

Sonia handing out communion during the Bible study
Our “Barnabas” πŸ™‚
Getting into the Word

We had the most amazing realization as well during this meeting. Sonia is very gifted in sharing testimonies. She remembers every little detail about how God shows up in her life, as well as the enemy. I can hear her now saying, “The devil is a LIAR!!!” During her sharing, her and I made the realization that we had actually already met briefly a few days before. She had approached me in the NICU lounge asking to borrow my phone because hers wasn’t working and she had to make a call. I didn’t have my phone on me, but encouraged her to restart her phone since that usually works for me. Sure enough, it worked and she thanked me and I went on my way.

Little did I know at the time, but the person Sonia was trying to call was Melissa, the mom who had organized the Bible study! Her and Sonia had also become friends and Melissa invited her to the Bible study. But Sonia was becoming discouraged to attend since she was unable to reach Melissa because her phone wasn’t working…. until I helped her fix her phone. And later when I ran into her again I called her “Barnabas” because she was such an encouraging person. She told me how that was exactly what she needed to hear since the enemy was lying to her by giving her thoughts that she shouldn’t come to our prayer meeting.

“The devil is a LIAR!!!”

These are the moments I now live for – seeing God work in my life and the lives of others. We all marveled at how God orchestrated behind the scenes what transpired between the three of us in order to bring Sonia and myself to that meeting (since we both might not have made it otherwise). We cried tears of joy in disbelief. The scriptures that were shared in that meeting were exactly what I needed to hear to be encouraged to face the day and speak life-giving words over Zion. And I left that room literally bubbling over with joy and smiles…. when hours earlier I hadn’t wanted to attend. These weren’t just lucky circumstances or chance coincidences. THIS WAS THE LOVE OF GOD. ❀️ Thank You Jesus. Below was the scripture that Sonia shared with us in closing which I am believing in faith for Zion:

A Joyful Return to Zion

A Song of Ascents

When the Lord brought back the captivity of Zion, we were like those who dream. Then our mouth was filled with laughter, and our tongue with singing.

Then they said among the nations, β€œThe Lord has done great things for them.”

The Lord has done great things for us, and we are glad. Bring back our captivity, O Lord, as the streams in the South.

Those who sow in tears shall reap in joy. He who continually goes forth weeping, bearing seed for sowing, shall doubtless come again with rejoicing, bringing his sheaves with him

Psalm 126

PRAISES:

– Praising God for continuing to sustain Zion when the shadow of death is hovering. Zion has lived 139 days!

– Thankful for the Trisomy moms whom God planned in advance to be here at the exact same time. Being surrounded by so many women who understand perfectly what you’re going through is one of the most loving things God could do for all of us. Their encouragement and advice is priceless.

– Grateful that George and the kids arrived safely and that daddy got much needed snuggle time holding Zion.

– Despite not always agreeing, I’m still eternally grateful to the care teams that God has used at Good Samaritan, Cincinnati Children’s and Omaha Children’s Hospitals to care for and sustain my son.

– We continue to be thankful for the prayers and encouragement of others!

– Overwhelmed by the kind hospitality of perfect strangers. Whether it’s taking my family in to spend the night during their long drive to Nebraska. Or the generosity another family who drove an hour to meet us and bring gift cards, cash and backpacks full of toys for our children. God’s love and faithfulness continues, as He promises.

PRAYERS:

– Pray that God would lead Zion beside the “still waters and green pastures” so that he would not have anymore dangerous episodes that will prevent him from going to the cath lab. We pray for Zion to remain stable and content. We also pray that Zion can continue to be weaned off of the cocktail of drugs that he has been on. We know that God can be his peace without the need for any drugs. We ask God to perform a miracle by halting Zion’s pulmonary hypertension from progressing further and also ask Him to lower the pressures in his pulmonary artery.

– Pray that God would prevent any roadblocks to progress for Zion. We cast the mountains into the sea in Jesus name! Zion had made a lot of progress in being weaned down on his oxygen the past 36 hours. His nurse had gotten him down into the 50% range, which was the lowest he’s been since arriving in Omaha. However a little desat episode this afternoon scared the team again and caused them to turn his oxygen back up to 100% while also increasing his sedation. This has been quite discouraging for me since it’s happened so frequently. Pray that I would stay focused on the unseen and not the circumstances in front of me. Pray for God to give me endurance to run this race. And also that God would give me abundant grace and patience when this happens.

– I could use prayer for balancing time with Zion in the hospital and time with my family while they are here visiting. Pray that I will redeem the time with my children since I will be away from them for a while when they leave. Pray that we can also get into new routines in our new temporary home away from home.

– Please say a prayer for our daughter Eden’s eye. She has had strabismus (her right eye wanders) since 9 months of age. She underwent double eye surgery to repair it, but it was unsuccessful. In just my 5 days of being away from them, I notice her eye is much worse. She’s having a lot of trouble focusing and is squinting it a lot more. This breaks my heart for her and has had me somewhat distraught. I don’t want her to lose vision in this eye. All of her eye follow up appointments are going to have to be on hold while I’m gone. Pray that God would shower His mercy on her and heal her eye.

Zion’s adorable red mullet (above) / Zion getting CPT which helps bring up his mucus and open up his lung (below)

2 thoughts on “Twists and turns

  1. So good to get an update! I know it has to be frustrating for you to have to wait on the care team in Omaha to learn Zion. I will pray that one of the team is able to become close enough to you to trust your judgement. You have been with Zion through all of the ups and downs, and you know what he can tolerate and swim through. This reminds me of a little boy that I cared for while working in the emergency department. He and his family were on a train, going to visit family for the first time in a long time. I don’t remember his age, but I think that he was about 9. He had numerous congenital defects and was unable to communicate verbally. His body was distorted and contracted, but you could tell that he knew, trusted, and felt comfortable with his family. His father was an RN and cared for him at home. I worked at the small hospital here, and of course we had never had a child like this little boy. He had taken a bad spell, while on the train trip, and the Amtrak personnel must have just wanted him off before, in their mind, something bad happened that would lead to his death. Otherwise, nobody in their right mind would have stopped the train in Malvern, AR. But Aaron’s father was so very knowledgeable about treating his son. We called AR Children’s Hospital to have him transferred to a higher level of care. When Angel One arrived, the team got right to work and asked me to move the family to the waiting area. Aaron’s mother and two younger siblings heard and were exiting the room, but his father stayed. The medflight RN was taking report from me and I asked the father to join me. This seemed to irritate her, as she asked if I was the attending RN. I explained to her that I was, but I had only cared for Aaron for about an hour and his father was a much better historian concerning Aaron’s disease, past illnesses, and recent illness. She listened a little, but seemed just ready to get Aaron on the chopper and off to Little Rock. I asked if his father could fly with them even though I knew that this would be nearly impossible under normal circumstances. Of course they refused at first, but I ask his father to watch Aaron as I waded in on them, explaining that his Father was the best resource that they would have both kn flight and later kn determining Aaron’s care. They agreed, and before they left, that RN came over and hugged me and thanked me for being an advocate that made them listen. I called my husband Doug, and he was able to come and take Aaron’s mother and siblings up to ACH. His mother called me later to thank me and called again a couple of days later to tell me they had been discharged and were continuing on their trip to Texas. She wrote a wonderful note to my administrator and sent me a beautiful ornamental jar later as well. I still don’t know what caused me to step out of my comfort zone, except that it had to be the Holy Spirit. When Aaron had arrived, I started praying for GOD to give me knowledge and discernment through this situation. It wasn’t even hard. It was like I had this kind of thing every day. Even my emergency room physician was awed. Lol.
    I just wanted to share my story with you to let you see that Father is there to provide each and every one of us exactly what we need at just the time we need it. He covered me, Aaron, Aaron’s dad, the care team at Malvern, the medflight care team, the care team at ACH, Aaron’s family, and my husband Doug. Never missed a beat!!! So be strong and of good courage. It sounds as if you mothers are a team for each other. I am so happy that you do have each other and Father to lift you up while you are away from your families. I am continuing to pray for you all as we pray for each other. I am believing Father’s promises of faithfulness, as we remain faithful. May He bless and keep you, Zion, your family, and your extended family in Omaha. May He shine His face upon you all and give you peace/shalom πŸ™ŒπŸ™ŒπŸ™Œβ€πŸ™πŸ™πŸ™β˜οΈ

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    1. What an amazing story. I’m praising God for the understanding that He gives his children. It is so hard when institutions won’t listen or try. Thank you for empathizing and understanding. Your emails have been so encouraging. God bless you!

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