We continue to THANK everyone for all the prayers you are still lifting up for our child. The last 24 hrs have been very busy, but when checking in on social media it’s been overwhelming to realize just how many people are interceding on Zion’s behalf. There is no greater gift you can give us than prayer! We are still standing and persevering, and we also believe Zion is still alive, because of your prayers.
We trust in faith that the good Lord heard all of our prayers. But He certainly didn’t answer them in the way most of us were probably expecting. God always has the final say, and we give Him room to have His way with Zion. The outcome of the surgery was what I was hoping wouldn’t happen. It did not work as planned and almost cost Zion his life.
The surgery took a lot longer than expected (about 4 hrs) due to some complications. First, it took Dr. Hirsch a while to thread the catheter to the exact spot in Zion’s heart where he needed to place the device to close the VSD. This was due to Zion’s valves being “different”, and also because Zion’s heart isn’t positioned in the same way that normal hearts are. The NP Betsy was so kind to call me every hour with encouraging updates. But once we got to the 4th hour things took a precarious turn.
Once the doctor finally got to the “sweet spot” and placed the device, Zion’s heart very quickly went into what’s called a heart block, which is an abnormally slow rhythm that makes the pulse undetectable. In other words, his little heart went into cardiac arrest due to this device. He told me that they had to do chest compressions for just over five minutes in order to bring him back. Because of this, Dr. Hirsch obviously immediately chose to end the surgery and make no repairs. He went on to tell me how difficult it was to then take the device back out of his heart which took even more time. I feel I can read people pretty well, and Dr. Hirsch appeared to be a little shaken by the events. I don’t see how anyone can’t be when you are watching a life fade away in your hands. He also was not happy either that it didn’t go as planned.
I don’t think everything really was processing yet at that point. I was just so glad that my son was alive after such a scary close call. I went to the CICU waiting room and then had to… can you guess?… wait some more for them to get Zion into his room in the CICU and get him settled. I figured this would take maybe 30-45 minutes tops. But every time I asked the check in lady if they were ready to take me back, she kept saying, “No, not yet.” At the 2 hour mark the worries finally started bombarding me because I knew something was wrong. I asked again to go back, and this time one of the CICU nurses was standing there with the check in lady. When the receptionist asked her if I could go back, the look on her face said it all as she quickly shook her head and quietly said, “No”. My thoughts were:
Is Zion okay?
What’s taking him so long to stabilize?
Is he having another cardiac arrest?
He just needs to hear his mommy is with him.
As I was waiting, I got a call from Dr. Hirsch who wanted to speak with me again. He came out and quickly beckoned me aside to a corner of the waiting room over by the elevators (that concerned me). He then started asking me my wishes regarding various life saving measures we wanted to take for Zion if another cardiac event happened. He shared his opinions as well. I felt so caught off guard. George wasn’t there with me to answer these questions (he was home with our sick kiddos). And I felt I didn’t have enough time. I prayed quickly in my head that God would direct my answer and gave my decisions. It’s only by the grace of God that I kept it all together before the doctor.
But by that point the day had now gotten to me. As soon as Hirsch walked away the tears started rolling. I just wanted to lay my eyes on my son and touch him – I had no clue what was happening back there. I decided to go downstairs and eat something since I was sick and tired of sitting in that waiting room. As I was walking the concourse and crying to God, he put on my heart to call one of my friends. I’m SO grateful for the people God has placed in my life to help hold me up when I need it. My nurse/T-18 mama friend really comforted me when I needed it most. I then ran into another nurse in the cafeteria that helped Zion during his recent code blue and I broke down into a blubbering mess again thanking her for all she did. I felt so helpless and weak.
To give you an idea of how long the wait was, they took Zion away yesterday to surgery around 10:30am, and I finally got into his recovery room to see him around 7:45pm. That span of time felt like an eternity. My heart just broke seeing my little guy in the state he was in, with all the wires, but God was really giving me His strength to keep it together before Zion.
You could tell that what he had been through was rough. The patches all over his head are the EEG leads which were monitoring for brain and seizure activity. He was definitely swollen from the fluids. He had a gazillion medicine ports coming off of his IV lines for all the meds he was on to help his heart and body recover. But what I noticed most was how COLD his extremities were. I just wanted to pick him up and warm him in my bosom. But I learned that cooling patients after cardiac arrest is actually a treatment to help minimize brain damage and help the body heal. He was moving a little and opened his eyes when he heard our voices. Oh my sweet boy.
Zion’s eyes were sort of dancing around a lot. It was hard to tell if he was truly looking at us. But he certainly did respond when he heard our voices. I was hoping that he didn’t suffer brain damage during the cardiac event he had. It’s still too early to know for sure.
George arrived a little bit later, as he had to pack an overnight bag for me (which I forgot to do) and wait for our friend Kim to arrive to stay in the house while our children were fast asleep. THANK YOU Kim for always being eager to help at the drop of a hat!
The doctors and nurses came by to do the night rounds. The attending (head) cardiologist was on duty at that time. They went over how Zion was doing and we asked some questions. But I was a little put off during the portion of the conversation when the attending started sharing his perceptions of the quality of life of babies with T-18 and babies that are ventilator-dependent. I was looking him in the eye, but definitely mentally checked out when he started speaking in that way. I wasn’t choosing to receive anything he was saying as truth, because I know that with God all things are possible. And I already knew that many babies with T-18 who are ventilator-dependent can indeed have a good quality of life! I’ve seen the smiling photos, and they are worthy!
After that conversation I was definitely ready to call it a night. I’m grateful for the sleep rooms at Children’s. It’s such a blessing to accommodate parents in that way when parents need to stay close to their child. George stayed with me until the early morning. The Lord deeply comforted me through the arms of my husband simply holding me in the stillness after that long day. I never could have imagined that our first night away together from our kids ever would be on a twin-sized cot in a tiny hospital sleep room. I can’t not chuckle to think about that!
Fast forward to this morning. In hard times I’m always drawn to pray the Psalms, so that’s what I did as part of my morning devotions. It was really nice being in the peace and quiet of the sleep room. No noise from children. It was just me and God. I felt lead to read and pray Psalm 23 because it was so fitting for what we just went through with Zion:
The Lord is my shepherd;
I shall not want.
2 He makes me to lie down in green pastures;
He leads me beside the still waters.
3 He restores my soul;
He leads me in the paths of righteousness
For His name’s sake.
4 Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.
5 You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
6 Surely goodness and mercy shall follow me
All the days of my life;
And I will dwell in the house of the Lord
PRAISE THE LORD Zion is doing better today! His vitals have all improved compared to yesterday and he’s very close to being back to his “baselines”. He was still pretty sedated this morning in the CICU due to medications, so I didn’t get to really interact with him. But I did read some scripture (Psalm 91) to him and prayed with him. He even did a few of his characteristic eyebrow lifts and flashed some of his winning smiles in his sleep.
Another sign of progress is that Zion has been moved back to the NICU this evening. Please pray for his healing. He has some bleeding from a urinary catheter so pray that is quickly healed. We will make another post down the road as we learn more about the next big step for Zion in his journey, but know that we’re in a good place today and are hopeful in God’s plan for Zion. The Lord is also doing so many new things in us. He is humbling us, softening us and drawing us even closer to Him through this trial.
We know with 100% certainty that the Lord is good and merciful and does all things for our good. So even though the surgery didn’t turn out how we prayed, we know the result was God’s answer, and that He was glorified in it by the fact that Zion is still alive. We just need to wait on Him now to watch His plan unfold. Jesus Christ our Savior defeated death when he died on the cross for our sins, and rose again from the dead three days later. Acts 2:24 says that “… it was impossible for death to keep its hold on him.” We believe the same power that rose Jesus from the dead also brought our son back to life yesterday. Maybe God allowed all that to happen just to display His power and glory in Zion? We THANK the Lord for sustaining our son’s life so he can see another day.
As I’m finishing typing this blog this evening, I got a call from Dr. Hirsch. He told me that the echo that was done today on Zion’s heart looked good and that all of his valves were working properly and not leaking. Hallelujah! I was grateful to have a chance to thank Dr. Hirsch again for giving Zion a chance, because so many hospitals refuse to operate on babies like Zion. He also told me that now that they need to come up with a Plan B for Zion, he wants to present him again at the upcoming cardiology conference at the hospital to get input from all of his peers, which will be in about 7-10 days. And he also is willing to consult with Dr. Hammel in Omaha to get his input as well as far as the best course of action for Zion’s Plan B. God is showing me that He is with us and He is not done yet! Below is a photo of Zion resting comfortably in the NICU tonight. I often put his hands up onto his face because it’s very comforting for babies when they’re sleeping. I love how he’s doing it all by himself here – it so blesses my heart to see this!
In closing, yesterday someone sent us in our prayer requests the following excerpt from an old hymn. This truly says IT ALL.
“Oh Zion, haste, thy mission high fulfilling, to tell to all the world that God is light.”