Closing a chapter

I wanted to thank everyone who has been following this blog, praying for us and reaching out to support us during this time. As I’ve said before, we truly feel overwhelmed with LOVE! This will be my final blog post before we enter the next new chapter of our lives – the chapter that is all about Zion and his life OUTSIDE of mommy’s womb!

I’m 38 weeks pregnant now – HALLELUJAH! I had one final ultrasound performed at my weekly OB visit the day before yesterday. Over the past week or so, I have been intentionally praying that Zion would be at least five pounds by this ultrasound. I know that the T-18 babies who weigh more at birth tend to do better than the ones who are very small. And as mentioned before, for whatever reason, boys with T-18 tend to have poorer prognoses. Naturally, I want my son to have the best chances at life, so we have prayed for God to put more weight on him. I was eager to see what Zion’s estimated weight was on ultrasound.

So, a couple days ago at the doctor’s office, I was very intentional about asking the sonographer to give me her impressions about specific areas of Zion’s body. The first thing to flash on the screen was his face and my, oh my, all I saw were chubby cheeks!!! And some full lips! He was peacefully sleeping with his eyes closed. I saw his face so clearly. My heart was so overwhelmed with how adorable he was. He gave me just enough time to admire him before waking up and wiggling around.

A sleeping Zion John @ 38 weeks

I asked her if she saw rocker bottom feet (since the 4D sonographer mentioned seeing them). She said she didn’t really see that in Zion’s feet, but possibly did see some clubbing. And that his feet might be somewhat larger. I asked if any of the choroid plexus cysts in Zion’s brain were still present, and she said they were completely gone (*answered prayer*). I asked about the fluid pocket found in the back of his brain, by the cerebellum. It was still present. She measured the level of amniotic fluid and said it was “generous” – the value was 25. At it’s highest it was about 31, so I saw that as good news that it was at least lower than before. I asked how my placenta and cord flow looked – both looked great and normal. Next she zeroed in on my son’s heart. I wanted to know if his VSD was still “large”. She showed me how it was indeed still large… so large, in fact, that he virtually has a single ventricle. I wondered to myself how many problems this might cause my baby boy once he was out and the cord was cut? Finally, she started taking the three measurements to get his overall growth/size. His head circumference and femur size were both just about on track for his gestational age. His belly circumference however was throwing this sizing number off, because it was now VERY small for gestational age (measuring about the size of a 30 week old baby).

I had her look further into that finding; I was curious if there was any fluid in his stomach… which would be a good sign that he was swallowing amniotic fluid like normal babies do. She then admitted to me that the last few ultrasounds they have had trouble even finding his stomach (which was the first time I had been told this). After a few seconds of searching, she found this little black circle on the screen and told me that was his stomach. And there really didn’t appear to be fluid in it. I was a little disheartened since this was new info that I wasn’t aware of. But I also was grateful to know this so that I could be more prepared that my son likely will need to be fed through a tube of sorts. I later came to find out from one of my T-18 mom friends (who also is a NICU nurse) that this also could mean that Zion’s esophagus might not be connected properly on one or both ends (which is common in T-18 babies). This was also something I hadn’t been prepared for, but was grateful for my friend giving me this heads up. I don’t like surprises, (unless it’s answered prayers of course)! So I have another thing to be praying about for Zion.

On to some good news. The 3 measurements that were taken show that Zion is about 2 weeks behind in overall growth – not bad! I asked her what his weight was estimated to be and she informed me he was about 5 lbs, 4 oz. Thank You LORD!!! My prayer for Zion to be at least 5 lbs at birth was answered! The other neat thing about him being 5/4 is that that happens to be my exact birth weight. 🙂 So, even though he’s got a small belly, I was comforted that at least Zion’s weight was increasing.

After the doctor finally came in to chat with me, he rather quickly got straight to telling me (calmly) how Zion was now in breech position (which means butt down, as opposed to head down – where babies should be for a vaginal birth). I was honestly shocked. Zion has been head down for so long, I guess I started to take that for granted. The thought of him flipping never even crossed my mind! Yet here I was, now listening to my OB talking to me about the need for a c-section. One of the reasons I love my OB is that, unlike many doctors, he is actually very comfortable delivering babies vaginally who are in the breech position. So this normally wouldn’t have been an issue. But now that my husband and I are desiring full interventions to be done for our son, it makes sense to me why my OB would want to limit any sort of stress or potential risk to Zion. A breech vaginal delivery can certainly do that to a baby. God is so good. He gave me total peace as my doctor broke this news to me. Prior to Zion, I would have been VERY upset about this. But God has really softened me through this pregnancy with Zion. He is teaching me that so much is out of my control and that I simply need to trust Him. Even my doctor admitted he was surprised at my calm reaction and acceptance of the news – he said he was expecting some push back from me. I’m glad he’s also seeing some growth in me through this experience.

Today, my husband and I met with 2 of the neonatologists at Good Sam (one being the medical director). They spent a lot of time with us explaining how things might go with Zion and also answering all of our questions. We talked about everything from genetic testing, to the various NICU interventions to potential transfers to Children’s Hospital down the road. I did get the sense that these two physicians were somewhat pessimistic about T-18 babies, in particular those who have central apnea. This is where the brain doesn’t properly tell the body to take breaths (which is common in T-18 babies). Babies with central apnea typically need to be fully intubated after birth, and oftentimes will eventually get tracheostomies put into their necks – often needing breathing support by machines in order to survive. I can’t say for sure because I’m not in their minds, but it seemed to me, based on their comments and demeanor at this point in the discussion, that they felt that a baby who needed this level of intervention should be given comfort care and allowed to pass away, due to the “lower” quality of life and also due to the strain and burden that care for a baby like that can put on a family. I smiled and was gracious as they shared their thoughts. I won’t say they were trisomy-UNfriendly, but those comments definitely showed me that they weren’t as trisomy-friendly as other hospital teams in the country. This is yet another reason I am grateful to be a part of the Rare Trisomy Facebook group, because these families truly show the other side of the coin, since many of the babies in this group have trachs and are surviving and living pretty good lives. I am grateful that I have those perspectives shared by all of the moms in the group, because if I was just getting all of my information from the doctors, I see how it can definitely color a person’s outlook, hopes and desires for their baby. Who you have around you is so very important!

We also got a chance to tour the NICU at Good Sam. When the care coordinator brought us into the room and I saw all the tiny babies in those incubators, I couldn’t control myself and just broke down crying. Not because of sadness or fear, but because of how precious those little beings were. I wanted to hug and kiss them all! It was so touching just seeing them and imagining my little Zion there. It was very helpful to get a feel for the place where our son might be spending some time. The care coordinator was very sweet and supportive of the desires that I shared with her – primarily me wanting to spend as much time as possible with my son after my procedure (if Zion does eventually need to be in the NICU). I feel this visit was also very helpful in preparing my husband (who tends to be a “deer in headlights” when in hospital settings).

So here we are today. It’s Friday. Three days until we meet our son. To say I’ve been overwhelmed with things to do is a huge understatement. I have been swamped with preparing for family to be in town, responding to messages, setting up meetings, contacting our insurance, getting forms filled out with my husband’s employer, stocking up the house with groceries, running errands that I don’t want to have to worry about after Zion’s birth, preparing our tax documents, organizing around the house… the list goes on. So to my family and friends who have been reaching out to me, please forgive me for any delays in responding – I know you all understand! I guess you can say I have been battling a case of “Martha-ism”. (If you don’t get that, please read Luke 10:38-42). 😉

We have been supported and loved on by so many. Our church small group is currently poised and ready to help us in any way they can… from providing meals, to child care, to grocery pick up, to house cleaning! We received a random generous financial gift today from friends of my family. God truly is providing for us in so many ways through our loved ones. We even recently received some precious gifts for Zion, including some adorable outfits, teddy bears and even his very own Bible – with his name on it! These friends covered all the bases because they even kindly blessed our other two children with unexpected presents for their brother’s upcoming birthday. We are so blessed to have the friends and family that we have been given who are hoping and believing that Zion will have life!

In closing, I have updated our “Prayer Requests” page with updated prayers that we would ask you to lift up for us. George and I want you to know that we are feeling peace with our plans and have unity. We will continue to pray for God to miraculously heal our son. At the same time, we are also prepared to let the Lord have His way and will accept whatever outcome God chooses for Zion in His sovereignty – even if that means bringing Zion home to Heaven. We are grateful that He has given us this comfort. In closing, I want to end with the following Psalm. We are trusting that the Lord will be with us this entire way, guiding us, comforting us, and showing us His glory and majesty. Not our will, but Your will be done, Oh Lord.

The Lord is my shepherd;
I shall not want.
He makes me to lie down in green pastures;
He leads me beside the still waters.
He restores my soul;
He leads me in the paths of righteousness
For His name’s sake.
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.
You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.

Surely goodness and mercy shall follow me
All the days of my life;
And I will dwell in the house of the Lord
Forever.

Psalm 23

3 thoughts on “Closing a chapter

  1. Devon I’m Deb Carter(a friend of George) I work at the Ark Admissions. I have a home church in Butler,Ky. We are not a large congregation but we have been praying for Baby Zion for several weeks now. May the Lord bless you with continued courage,strength and by Gods grace you will be ok and soon you will be able to hold your son Zion John🙏🏻❤️

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    1. Hi Deb! Forgive me for my delay in responding. We thank you so much for your prayers and for recruiting other prayer warriors to intercede for our son. Zion’s life IS the fruit of your prayers! He has answered so many of of them. God bless you and keep you all!

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