Home for Christmas

Sarah’s words are so beautiful that we’re going to let her share the good news…

As I sit here waiting to be discharged I can’t help but remember the fears we’ve had over the last few months… not knowing if I’d ever kiss my baby girls face, feed her, sing to her, or bring her home… “God is good all the time” is what I kept telling myself though when I imagined the worst possible scenario obviously that is a tough thing to believe! But Jeremy and I kept reminding each other of the fact that our girl kept defying the odds and God kept sustaining her each day. Now, with my baby down the hall waiting to go home with us, I am completely in awe of Gods goodness and mercy…this girl is such a gift- the best Christmas gift I could ever have imagined! Thank you all for your constant support and prayers! It’s amazing to see all the people coming around us – a lot of whom I don’t even know! You all are incredible and we can’t thank you enough. 

We hope you all have a Merry Christmas!

-The Denlinger’s (Jeremy, Sarah and Elia)

Reason for Joy

Joan had the great joy of spending a few hours getting to know her granddaughter this afternoon. Can you tell she had a good time?

Jeremy wrote in their caring bridge blog that there were some terrifying moments last night. He wasn’t overstating it. They’ve been told that the placenta was terrible, the umbilical cord very thin, the amniotic fluid low and the heart was decelerating. These are all things that can go with Turner’s that might cause the last few weeks of a pregnancy to be very high risk. And with all those things true for Elia Joy, the staff at CHOP are amazed at how well she is doing. We praise the Lord for CHOP in making the right call last night and also for Dr. Bayliss in Lancaster for his accurate diagnosis and level of concern.

In other words, there is a whole lot behind that smile of Joan’s.

We feel like we can’t say it enough: Thanks for all your prayers.

Name Drop!

Journal Entry by Jeremy Denlinger 

Author uploaded image

This has been a great day! 

1. We got the report just about an hour ago that her heart is looking great and the cardio team doesn’t believe surgery will be neccessary! She is being downgraded from the CICU to the CCU (not exactly sure what those acronyms mean,  but it’s good)

This very well may mean she is coming home with us when Sarah is ready (Christmas??)

2. Grandma D got to meet her and hold her for about 30 minutes. There were a lot of smiles!

3. We are ready to share her name with you all! Introducing: Elia Joy Denlinger!

Elia (Eh-lee-ah) is a derivative of Eliana which means God has answered. Sarah and I decided on this name before we even knew that this baby was going to require so many prayers. So having Elia’s name already etched in our minds and hearts was just an awesome reminder that God would answer us. That’s where her middle name comes in, God has answered, and his answer is Joy to the world!

We get a small taste of what that Joy can look like today as we look into our baby’s sweet eyes. But at this time of year we are also reminded that God has given the answer of Joy to the whole world in His Son Jesus Christ!

I confess I’m quick to jump to prayer when terrifying moments are happening like some things that happened last night, or throughout the past weeks. But I was not nearly as quick to jump to prayers of gratitude this morning as I was holding my baby. So join me now in praising God for this sweet gift to Sarah and I, and his answer to our Prayers, Elia Joy. 

– Jeremy and Sarah

Best Christmas Gift Ever

Baby girl Denlinger was born this morning (12-22-21) just after midnight. She weighed in at 5 lb 5 oz. Second prayer of strong lungs seems to be answered. There is one more specific prayer request – that she won’t need heart surgery. The nurse they spoke to about it last night said everything is looking great. There will be a cardiogram today.

Thank you for rejoicing with us,

Grandpa and Grandma Denlinger, Aunt Kari, and Uncle Matthew

PS If plans hold, grandma gets to see her this afternoon.

First Prayer Answered

There was room at the inn for the young couple with child (translated: Jeremy and Sarah are now in Philadelphia where they found an opening at the Ronald McDonald House).

And while we wait, hoping and praying that all will be well, here is something that Ron has been thinking about…

I, Ron, had to laugh when I read this headline the other day: “The universe is expanding faster than it should be.”

“How dare the universe disobey?” said a leading astronomer. “It is frustrating that the cosmos is out of line with how things should work.”

Lest I mislead you to believe that the scientists thought such things, the fact is that National Geographic simply wrote a poor headline – poor, in my opinion, because it can be easily misinterpreted. No one really thinks the universe is bad. Instead, the content of the article makes clear that the scientists are humbly realizing that their predictive models are flawed – there are factors that are missing.

We, by contrast, do indeed act as though the universe (or at least the world) is misbehaving because things don’t go the way we think they should. How many times people say, “this isn’t the way it should be.” It isn’t normal for a child to precede his parents in death – that isn’t the way it is supposed to be. Retirement should be a time to be able to travel, not for a man or woman to be tied down caring for a spouse who has had a stroke or who is experiencing Alzheimer’s. (And that is just my beginning for what could be a long list of things that don’t unfold the way they “should.”)

If we lived in a perfect world, we would be right. Those who expect the world to “behave” are missing a huge factor that make things the way they are – sin. This is a broken, fallen world. But it is also a world in which God uses even broken things for our good – the good of making us more like his son. And in that there is hope. And there is joy that comes when we accept those things that God won’t change (at least, won’t change now). And there is great joy in knowing that God more than countered when he added another factor – sending his son as a human baby, who would offer his life, leading to the eventual creation of a new world where all is well and as it should be.

One more thought: Despite how broken this world is. It is amazing how often things go well. Which leads us back to thanking you for praying with us that our other requests will also be answered in the affirmative.

Roller Coaster

Baby girl loves to sit on that edge. After lots of testing, doctor debating, pros and cons, ups and downs, the decision was made, and Jeremy and Sarah are heading home from CHOP. Cardiologists are saying heart seems stable and they would like to give a little more time for her lungs to develop.

The plan: Headed back to CHOP on Monday to stay. Baby will be monitored every day and projected to be born on or before Christmas.

Pray that a room opens for them at the Ronald McDonald House, lungs will develop and that (miraculously) she won’t need open heart surgery.

A Baby Before Christmas

Sarah’s doctor says that our granddaughter is small but stable. Sarah and Jeremy are headed to the Children’s Hospital of Philadelphia (CHOP) for more tests this Thursday. Their doctor here says they should be prepared to stay, and in either case they will have a baby before Christmas – born at CHOP, with the possibility of needing heart surgery.

It is a little difficult to know exactly what Christmas will look like this year. That’s okay. What matters is that the baby remains number one priority. I suppose that isn’t a bad mantra for any Christmas – the baby is number one!

In other news, Matthew did a great job in his part of Christmas celebration – he was in the kid’s choir at Calvary yesterday morning (green shirt, far left). He continues to make progress in just about every area. CHOP did a great job of sharing the story of Matthew’s neurosurgery and the outcome. It is posted on their neurology website.

Finally, Joan and I celebrate that it was 40 years ago today that we went on our first date. It was a Sunday afternoon performance of Handel’s Messiah at the Academy of Music in Philadelphia. (And have you noticed that Philadelphia seems to be a big part of our lives?)

Redirection

Today I had the difficult conversation with my son as to why it may not be a good idea to put on his Christmas wish list things that may be too difficult for him to use. He sees commercials with kids flying over half pipes on skateboards and battery-operated motor bikes that can go up to 30 mph. Many toys that Matthew sees are not conducive to his right-sided weakness and right field of vision loss. As parents, we are wise enough to know that those gifts would only lead to great frustration and little fun. So, I have learned the great art of redirection, helping him put his hope in gifts that will bring him great delight and that are safe for him. But all the same, it brings sadness to my heart to know that although some gifts are great for others, they are not good for him.

At my kitchen sink hangs a sign that reminds me daily, “To hope in God is to not feel consumed by difficult life challenges. Never forget that one day God will close the curtain on sin, Satan, and suffering!”

HOPE. We all need it, otherwise we spiral into despair. So many sad stories in our families, neighborhoods, and world. Always important to remember that believers in Christ have hope. Many weeks ago, when I first learned of the syndrome my granddaughter is battling in the womb, I prayed for her by the name that her parents told me. Not knowing her middle name, I started speaking aloud her middle name as Hope. It is not that, but for the time being that is what I call her. And speaking of the little pumpkin, she may make an appearance before Christmas. If so, perhaps this a “redirection” from a loving God. Jeremy and Sarah are gearing up for this possibility. Not exactly what we are wanting, but doctors are seeing signs pointing to an earlier delivery. So, we hope and pray that whatever is best for the little one (despite our desires) will come to pass.

 This verse from Psalm 71 could be her prayer now if not years from now once she can read it.:-) “For you, Lord, are my hope, my trust from my youth. On you I have leaned from before my birth, You are He who took me from my mother’s womb. You are my strong refuge!”

She is a beautiful gift from God. This is not necessarily the birth journey her parents were dreaming of, but just the same the miracle of life is a gift that will bring great delight and be perfect for them.

Keep praying for my children and grandchild. Thank you!