25 Weeks... With Hope

Thank you so much for all of the prayers for yesterday's doctors appointment! We are so incredibly thankful and we know that the Lord heard each one as we were able to spend a great deal of time with Dr. Rowe and his staff as they assessed Maddox's condition.

Overall, the appointment went well... However, not all of the news we received was great. Maddox has fallen behind again since the last time we visited their office at 18 weeks when we initially received his diagnosis. At that point he was 8 days behind, now he is 17 to 18 days behind in growth. They also found many concerning abnormalities with his heart that they simply couldn't pinpoint at 18 weeks due to his size. I don't remember many of the issues they mentioned yesterday, but I know that most vessels and arteries were either smaller or larger than they should be... nothing seemed to be the correct size. His heart rate was 143, but I think that is a little misleading after they explained that his heart isn't beating regularly and that the pericardium (the outer sac around the heart) has excess fluid, essentially indicating that his heart is working overtime and is getting stressed. They also noted that there is probably a hole in his heart, but they couldn't be certain based on the images they were getting at the time. In addition, due mostly to the spina bifida, the fluid build-up in his head continues to get worse(hydrocephalus).

I will say that his heart condition has now become my biggest concern, which before was the spina bifida complication. Both of the genetic counselors we have spoken with have indicated that heart conditions, and ultimately heart failure, are the cause of most babies not making it to term. And although I can't say by any stretch of the imagination that we are happy with the news that we received, because Dr. Rowe spent so much time, energy and effort to explain Maddox's entire condition in detail, we both feel much more confident in the direction we are heading. He was a picture of straight forwardness, with compassion; concern, with gentleness; optimism, with reality. For many of the issues he mentioned that weren't promising, he mentioned something that was right and good and "normal". They noted that he doesn't have the "rocker bottom feet" that many T18 babies have, he is able to open his hands fairly well, and he has a "beautiful face"! (I know that every mother, regardless of her child's worldly appearance, believes that her baby has a beautiful face, and although many babies with T18 have cleft lips/palates, we are appreciative that that is one less issue we are facing.) Dr. Rowe was wonderful about giving us the good with the bad, the possibilities with the reality.

So where are we right now? We know that Maddox weighs 1lb 2oz, my amniotic fluid level is within normal ranges and he is still very active. We know that we have decisions to make in the next few weeks regarding the rest of our care and our medical team. We know that there is a strong possibility that we could still go to an appointment and not get a heartbeat... BUT we also know that the Lord has BIG plans for us and we want to put this situation entirely in His hands. Although the news was not good and Maddox's condition seems to be worsening, we are okay with where we are and the decisions we have made up to this point. We trust that the God of Creation, the Prince of Peace, the Giver of Life knows us intimately and that He will prepare us, sustain us, and fulfill His promises to us throughout the rest of this journey and beyond. "For I know the plans I have for you," declares the Lord, "plans to proper you and not to harm you, plans to give you a hope and a future." Jeremiah 29:11.

I must also mention, for the record, that although I don't know if He necessarily gave this to us, He did allow for it to happen, as he did for Job in the Old Testament... Whether this is to build up our character, to show Satan that we will not let him overtake us, to demonstrate to the Lord that we are true followers of Christ and we will be faithful, to strengthen our testimony, to work on my patience, to prove that He can perform miracles... whatever it might be, it's an all or nothing game and I am all in! I am all in to love my children. I am all in to love my family. And most importantly, I am all in to love my God that strengthens and sustains me each and every day.

The Patience of Job~ Women's Devotional Bible
"... Everyone suffers- the righteous and the unrighteous- including Job, who "was blameless and upright; he feared God and shunned evil" (Job 1:1). For some reason God chose to use Job as an example of patience in the midst of great suffering.
When something tragic happens, we often scramble to figure out why. Did I sin? Did they sin?... But not all suffering is the direct result of sin. Paul's thorn in the flesh was not given to him because he was such a sinner, but because God wanted him to understand something important about suffering. God said, "My grace is sufficient for you, for my power is make perfect in weakness" (2 Corinthians 12:9).
The simple truth is that God is not constrained to tell us why bad things happen to us. But he will let us know how to walk through them... with patience and hope. Yes, Job had some questions he wanted God to answer. But despite his questions, Job could still faithfully proclaim, "Though he slay me, yet will I hope in him" Job 13:15. ...Can the same be said of you?"

Comments

Jen in Al said…
Hey Kenzie! So thankful that your appointment was full of information given in such a kind way! Continuing to pray for you all! thank you for sharing your journey with us. you will probably never know fully the ways the Lord is using your family to minister to others!
At the foot of the cross...
Jen in Al
So Blessed said…
Your faithfulness to our loving, all-knowing God is a powerful testimony. His ways and thoughts are indeed higher than our own, and the best we can do in our trials is trust Him. I pray for your family...that He who is able, will continue to strengthen and sustain you.
concernedSBCer said…
Kenzie: I have come to feel that the "Trisomy 18 moms" are part of my family. God prompts me many times a day to pray for you all. I'm sorry Maddox's heart is such a huge concern, but what is important, his HEART, will be loved by a dear set of parents.

Take care.
Laurie said…
Hi Kenzie,

I am also thankful that your appointment was with such a kind and caring doctor, setting your minds and heart to rest as much as possible. I too find that I keep adopting your T-18 babies and you moms into my family and pray for you daily. You all have a place in my heart. And I am praying for Maddox's little heart as the Lord holds him in His heart. Your family is the exact place Maddox needs to be loved and nurtured and so wanted. My prayers continue daily for you as you walk this road with so many others right now. Be blessed this weekend with His peace and joy. You are a blessing to me.

Laurie in Ca.
Anonymous said…
Your FAITH and STRENGTH is amazing. Thank you for allowing us to share this journey with you and to pray for your precious family.
Emily said…
All I'm left here thinking is, "You go, girl." :)

Praying and praying and praying some more.
bambi said…
God bless you all!

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