HOPE abounds

GOD IS GOOD.

I’m 33 1/2 weeks pregnant as I write this. I’ve been feeling okay overall. This belly definitely feels big and heavy and has slowed me down dramatically. My biggest issue the past few days was a nagging little headache that wouldn’t seem to go away, but that has since resolved. I had another ultrasound yesterday at my OB’s office. I had asked many to pray beforehand so that this time around I would be given the information I asked for and that nothing would be withheld. My little Zion was certainly a “wiggle worm” on camera that day, but thankfully the sonographer was able to get the measurements that we needed today. And it is always a blessing to get a view of that beautiful little face…

Zion John – my dad and I have affectionately nicknamed him “Z.J.”
– 33 weeks (right arm blocking his face)

As usual, the sonographer started by looking at Zion’s head. I mentioned to her how my last ultrasound 3 weeks ago showed defects at the back of his brain. After looking at the area, she confirmed with me that she did see the defects. His cerebellum was sort of pinched off in a couple areas (possibly due to a fluid pocket in that area that shouldn’t be there). So since that morning I have been asking for focused prayer specifically for healing of Zion’s brain. The rest of the findings though were definitely praise reports.

My amniotic fluid index (AFI) has decreased since my last ultrasound. The fluid was now measuring at 23, when before it was 32. I have certainly felt less belly pressure and less breathlessness more recently and could tell that my prayers were being answered – so now I knew for sure! This fluid decrease has certainly helped me to feel Zion more clearly, moving around in my belly. Those strong kicks/punches and rolling movements of possibly an elbow or a knee are now becoming more consistent. They definitely cause me to stop what I’m doing and just be present with them. So, it’s my prayer that the fluid will continue to decrease to a normal level. I also hope that the decrease is because my son is swallowing fluid like a normal baby does. It would be a dream come true to see my son be able to swallow milk like a normal baby and not have to have a “g tube” inserted in order to feed him (which is what happens it seems with most of these babies).

Next the measurements began – the skull circumference, belly circumference, femur. These measurements are averaged together in order to get the most accurate gestational size. While Zion’s belly measurement was a bit behind, his head measurement was normal. I was so delighted when she informed me that the averaged value was 32 weeks. So now Zion was measuring only 1 week behind, when 3 weeks ago at the 4D ultrasound he was measuring 4 weeks behind! Hallelujah! This was such great news to confirm that his growth was starting to catch up. I am so humbled by this because so many of these babies never seem to recover once they get behind in growth. God is definitely answering our prayers.

Keeping in mind that at the ultrasound 3 weeks ago, Zion was about 2 lbs, 2oz, I asked the sonographer next what his weight was. She gave me even more good news. His weight was estimated at 3 lbs, 9 oz! A normal baby at 33 weeks gestation is around 4 lbs, so Zion is only a few ounces behind in weight. I felt a huge relief in getting these measurement and weight updates. As the weeks tick away, I am starting to feel even more confident that my boy has a fighting chance at life.

So the moral of this story is PRAY, PRAY, and keep PRAYING. And ask everyone faithful to PRAY with you. I can’t express enough how grateful we are for the support we have been given by the body of Christ (those in our church, and other believers praying for us around the world). It’s now become a regular thing for me to break down crying… at some point before, during or after Sunday church service, as someone comes up to speak a word of encouragement, or to ask to pray for us on the spot. I truly feel so loved. I can’t imagine going through this journey without a support system like we have.

Another facet of my support system has been an AMAZING Facebook group that I was introduced to by a dear mother who lost a Trisomy 18 baby. The group is called Rare Trisomy Parents. It’s a private group, and you need to answer some questions in order to join, but I wanted to mention that here on my blog since there are Trisomy babies all over the world, and this blog has been viewed already by many countries throughout the globe. If you are a parent expecting a baby with a rare trisomy, this online group will be an incredible blessing and encouragement to you! The mothers on here are so incredibly knowledgeable, willing to share information, answer questions, and give much needed moral support and comfort. This is a group of people who understand exactly what you’re going through. And it helps you to see that you aren’t alone at all in this journey. I was telling someone the other day, that if you simply read the online statistics about Trisomy 18, you start to feel like this is such a rare condition. However, as you view this group page daily, you find new moms with a Trisomy 18 baby being added to the group just about every day! And the information that is shared on this page about outcomes, procedures, interventions, etc. is priceless. This is real life, clinical data that you can’t get from most doctors or from informational websites read online. The stories shared in this group truly can improve or even save a life.

The information I’m learning from these women has actually given me a change of heart in one area and helped me fine tune my birth plan. Up until recently, I felt like the best course of action for Zion was to let him get as close to full term as possible (God willing of course), and then set an induction date. Inducing Trisomy babies (or setting c sections) seems like status quo based on all the mother’s stories I’ve been reading. Setting an official date would allow our families to plan better in order to be here when he arrives, and not after the fact. This is important if you have a high chance of having a baby that might not survive birth… or very long post birth. It also would enable me to have things like a photographer set up.

BUT, after learning from the moms who have shared with me in this Rare Trisomy Facebook group, I’m seeing a trend. It’s a small trend, but noteworthy in my opinion. I notice that the babies that are left in the womb as long as possible, past their due dates (ex: 41-42 wks or even longer) seemed to have better outcomes. Meaning, they could breathe on their own! They went home from the hospital sooner! And most importantly, many of them had relatively long lives OR are still alive!  These results actually make sense when you think about it. Trisomy babies are often underweight and underdeveloped in many ways. So if you leave them in longer, it might just give them a better chance to let their bodies mature and their lungs more fully develop. And they certainly will be afforded the much needed time to put on more weight (there’s a strong correlation between higher birth weights and better outcomes).

As I mentioned above, the vast majority of these babies though are indeed induced to come sooner (often by c section). In some of the cases it was very necessary according to the mothers, but in other cases it might not have been. It’s as if I could feel the slight regret some of the moms had for potentially forcing their little one to come out before it was their time (or a better way to say it is possibly allowing themselves to be coerced to induce early). One thing I know for sure, a mother has to be her own advocate in hospitals today. Mothers need to realize they have a say in their care and need to speak up and speak boldly about their wishes before doctors and medical teams. Thankfully, I don’t have a difficult time with that. 🙂

My heart goes out to the women who look back and wish they would have done things differently.  All these moms I’m “meeting” are truly doing what they feel is best for their babies.  These are hard and difficult decisions that are having to be made and they are very personal as well.  But what they have learned and are now sharing online has been pivotal in helping others to make the best decisions for their own babies.  So my NEW plan is to leave Zion in my belly until he comes spontaneously (aka in God’s perfect timing). This could mean he might not arrive until April now, as opposed to late March. I mentioned my new plan to the midwife I met with yesterday and she said she would share it with the doctor. I’m hoping he will be on board with this, because this is the plan I’ve decided. And I certainly will not allow anyone to force me to induce if I don’t feel it’s necessary. We will just have to wait and see, but I feel even more peace now as this plan of mine evolves over time.

I recently created a poll in this Facebook group to ask a question about outcomes, in particular with the boys with T-18 (since there are fewer boys with this condition, and boys typically have lower survival rates). Within a matter of hours I had such incredibly helpful data on survival rates of the boys with this condition. And I was now instantly linked to over a hundred moms who had boys with Trisomy 18 who I could then ask further specific questions of. There are many things I don’t like about Facebook, but features like these make this all worth it. Check out my poll below:

My Facebook poll to the Rare Trisomy Parents group

Look in the middle there how many babies lived more than a year and/or are STILL LIVING! That number is not too far off from surpassing the “stillborn” category. This is why I’m so grateful I joined this group to talk to real life people about real life outcomes. If you simply read the statistics, or take a genetic test result and/or a physician’s hypothesis (an educated guess) as a guarantee, it’s no wonder so many of these babies are aborted and not given a chance. Fear takes over. That’s only natural. We need to give room for the glory of God and trust in Him.

FACT: Doctors are often wrong. It’s not their fault. They are doing the best they can with the information they have been given. But doctors are not God. And it grieves me to think how many women take their opinions as facts. And make decisions based on those opinions that can never be revoked (like ending their baby’s life). In addition, many of these genetic tests are actually wrong, based on countless women who have stated that in this group. I’ve heard from moms who had genetic tests stating their baby had Trisomy 18, but after the baby was born, it was confirmed the baby did not have that at all! And I’ve also read vice versa – where genetic tests gave a false negative. There are also HEALINGS! Real healings that happen in these babies both in the womb and after birth! Moms have shared how their babies have had brain defects that have miraculously healed in the womb after some time. Or heart defects that later healed after birth and didn’t require heart surgeries! This is the sort of stuff that online statistic websites or doctors won’t typically share with you.

In reality, many babies with scary diagnoses DO beat the odds. Why? Because God is ultimately who is in control of these babies. And that’s why I exhort you to call upon the One who created your child. Within the comments section of my poll, I was greeted by photos of smiling boys with Trisomy 18 of all ages, including a couple 10 year olds, a 17 year old, an 18 year old and even a 21 year old! Information like this brings real hope. 🙂

“Jesus said to her, “Did I not say to you that if you believe, you will see the glory of God?” – John 11:40

GOD STILL HEALS AND PERFORMS MIRACLES TODAY.  As mentioned in my previous blog update, Zion’s choroid plexus cysts in his brain have almost disappeared! His growth is improving over time.  God is at work today and hears our prayers. 🙂

 

In closing, I wanted to encourage all the mamas out there facing something scary in their pregnancy. I want you to know some truths. The God who is currently kitting your little one together in your womb says, “Behold, children are a gift of the Lord. The fruit of the womb is His reward.” (Psalm 127:3). Belief in that truth about your child is what brings hope and keeps you going every day. This truth is for EVERY baby in the womb. The one that’s perfectly flawless and healthy in every way. As well as the one that’s riddled with “defects” and problems. The Lord God makes them all. They are His. And He has given one as a gift to YOU! You can see for yourself what a blessing these Trisomy babies are by simply reading through the testimonies of the moms whose lives have been touched and transformed by these children. These women LOVE these babies/children. They say they can’t imagine life without them. Even the moms who lose their babies early say through the pain how they are grateful for having the time that they did have with their special baby. These children bring great joy to the lives they enter… although many doctors and those in the world may try to convince you otherwise. You have to decide who you will believe.

God?

Or those who have no faith in God?

So it my sincere hope that if you’re reading this and you have a baby with a Trisomy 18 (or other) diagnosis, that you will treat this pregnancy like any other. Cherish every kick and movement. Sing to your baby. Name your baby. Tell your other children about the baby. Plan and prepare for life for your baby. PRAY for your baby. Get maternity photos of your glorious belly holding this special gift from God. Even before your baby is born, you can begin to celebrate the unique life within you that is worthy to be treasured now, in this very moment.

I praise my Lord and Savior Jesus Christ, who gives me the grace, faith and strength I need for every day. Because of Him, my HOPE ABOUNDS.

4 thoughts on “HOPE abounds

  1. George Devon and children
    Your article is sooo uplifting. God’s has miracles for baby Zion. A few weeks ago our priest said a prayer for Zion.
    Please keep in touch. Our prayers are with your family everyday. Please give all our love ❤️ to you and your family. We love you guys. Love cousin Marianne Rick

    Like

  2. George and Devon,
    You, Zion and your whole family are in our daily prayers. Prayers are being answered. Doctors can tell you what they know but the Lord is the Great Physician! Blessings to you all.

    Like

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