Our bible verse today is a simple one but has such major implications on how we view what God is capable of. So let’s set the stage a little. We’re in Matthew, chapter 19 in the Bible. Jesus is in Judea. And a wealthy young man is asking him all these questions: “What must I do to get eternal life?” (Keep the commandments). “Which commandments must I keep?” (All of them). Then the young man says, “I’ve done all of that. What do I lack?” And Jesus told him to sell all his possessions, give to those less fortunate and come! Follow Jesus! The man was dismayed because he was really wealthy, so he left, hanging his head.
Jesus turned to his disciples and said “Truly I tell you, it is hard for someone who is rich to enter the kingdom of heaven. Again I tell you, it is easier for a camel to go through the eye of a needle than for someone who is rich to enter the kingdom of God.” The disciples were stumped! Quizzically, they look to Jesus for clarification. “Well, then, who can be saved?”
Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” (Matthew 19:16-26).
Think about this. ALL things are possible. Not some things. ALL things. This has never been more evident to me and to Paul than it has been this week.
Let’s talk about the mountains our little nearly 7 lb bundle of joy climbed yesterday:
- His EEG came back completely normal!
- His bilirubin was down to 8.2 from a high of almost 13 just days before, which means is jaundice is going away!
- He took 72 ML in his first feeding yesterday!
- He passed the car seat test, which means he sat still in our car seat for 90 minutes with no breathing interruptions or abnormalities!
When we got to the hospital, we just loved on our little guy. Daddy did a little rap for him as we warmed up his little muscles:
Dr. Driscoll came in yesterday and walked us through a few things. Several days ago, he had started to walk us through what it would look like once Isaiah had truly turned the corner. There will be more tests, he told us. The road could be long, he said. We’ll await those, but I promise, he encouraged us, you’ll have 24-48 hours notice when we believe this baby miracle might be ready to go home.
Well, turns out yesterday was that day. Dr. D quietly smiled as he said to my husband, “Paul, here’s your 24 hour notice“. I have goosebumps just typing it!!!! Now, let’s be clear. Isaiah has to have eaten last night (I’ve somehow managed not to harass his nurse yet this morning!) and he has to have no changes to his condition. This is the “perfect case” scenario, and we are cautiously optimistic we may have our son home with us this weekend.
For those of you who know my husband, you know his obsession with 11’s. Any multiple appearances of 1’s. Many years ago, he and his friend Chris Couch followed a movement called “1 movement for 1 God.” 1’s have always been something Paul has looked for around him. You wouldn’t believe where they are this week (Dr D’s golf handicap? 11. “Aunt” Wanda, who was in the delivery room with us, has a daughter born on the 11th. “Aunt” Cheetah Bonnie? Born on the 11th. The inspector number for the breast pump the hospital provided to us? 111. The inspector number on the Lanisoh products I have for breastfeeding? 111. And it goes on…
So when we got the “here’s your 24 hour notice”, I knew what day it was. I knew today was the 11th. While we don’t expect that we’ll walk in there today and walk out with our little boy, with God ALL things are possible. Paul and I will be ever-aware moving forward that putting God in a box only limits we can do, because you can’t put limits on what God can do.
Lastly, just before we were leaving for the day, the NICU primary nurse (1 of 2) who CHOSE to be assigned to Isaiah this week got a phone call regarding our little man (nurses can request to be the primary nurse for a baby, and he’s so darn spectacular, both day nurses who had him for one day requested they be his primary nurse on the days they work, and miraculously but not surprisingly, they work exact opposite days). It was the preliminary results for the Down Syndrome test. Isaiah is, indeed, rocking an extra chromosome, notably, number 21. He has Trisomy 21: Down Syndrome. Now, to be clear, these are preliminary results that just tell us whether ANY of his cells have the extra chromosome. As I mentioned earlier in the week I think, their suspicion is that our perfect little boy has something called Mosaic Down Syndrome, which ultimately means that instead of him having “standard Down Syndrome” where every cell in the body has that extra #21 chromosome, only SOME of Isaiah’s cells would have the extra one. Two distinct groups of cells. Some of his cells would have the standard 46 chromosomes (23 from Mom, 23 from Dad) and some of his cells would have that extra 21st chromosome, meaning those cells would have 47 chromosomes.
To be clear, this is just the suspicion of our medical staff and has been their suspicion since he arrived at Wolfson’s. How do they know? What made them think this was the likely situation with Isaiah? Babies/children with Down Syndrome have what they call “markers”. Characteristics. Something indicative of that fabulous little extra chromosome. Most Downs babies have most of these symptoms. Also, most tests done while Isaiah is a fetus indicate if you have an elevated risk of having a baby with Downs. We did every non-invasive test, and did NOT have any elevated risk in any of the results. There was no indication in the womb even with ALL the medical resources we have access to that Isaiah was even at risk for having that extra cool little #21.
Ok, so back to the question. What made them think that? Well, Isaiah very FEW of the visual markers for Downs. He does not have EIF, a bright spot on his heart that most Downs babies have. He does not have cardiac abnormalities, all of those follow up tests came back normal. He does not have enlarged kidneys, low set ears, shorter than normal thigh bones, fluid in his chest cavity, problems with his stomach/small intestine or Choroid plexus cysts (CPC) — a fluid-filled space in the brain. These are all markers for Downs. He DOES have the crease in his hand called the Simian Line which is a line that runs basically from the place where the thumb meets the hand straight across the palm of the hand. See photo below:
So… we should get these results in another 3-5 business days, so hopefully by next Friday, and no matter what they are, we’ll embrace them and work through them, finding the resources God has provided for these awesome kids and do what’s best for our sweet son.
So, here’s how you can pray for us today!
- Pray that he had an uneventful evening, that he took his bottles last night and blew those minimum requirements out of the water, and that nothing will stall his ability to be released in the coming days.
- Pray that God will give us the lowest possible percentage of cells that have that really awesome extra chromosome. Whatever the number God chooses will be perfect, we know, but we’re called to tell God what we want, since He already knows what’s in our heart, so we pray for the lowest percentage possible. 11 perhaps? 🙂
- Pray the people who have used this situation to chastise or challenge our faith and/or our character. We know we are YOUR children and we pray for those who don’t have you in their heart for they know not what they do or say. Jesus, we LOVE YOU! We know that through you, ALL things are possible. We are so incredibly thankful for all the miracles you’ve performed already with our little Isaiah. We cannot comprehend the depth of your love for him given that we love him so much and we know you love him infinitely more, but we KNOW you have him in your hands. Please guide us as parents to be the best example we can be to the world about how to live your Word and follow your commandments, lovingly and with enthusiasm let us run down the path you have set before us. Amen. THANK YOU FOR ALL YOUR PRAYERS!!! GOD WILLING, OUR BABY BOY IS COMING HOME SOON!!!