This is the story of our precious baby boy, who was diagnosed prenatally at
17 weeks with a fatal chromosome disorder called Trisomy 13. Although
Jonathan's condition is considered "not compatible with life", we desired to give
him every chance at life. Our prayer is that those who are touched by our story
are drawn to God, who is Life Himself. John 14:6

To start at the beginning of our story, click here.

10.07.2009

waiting...

have you ever had a moment where you just wish God would write the answer to your question in the sky? or at least just come out and tell you? after today's specialist appointment, we really need prayer about making the right choice.

we learned today that jonathan's condition is worsening. now there is fluid in his lungs, among all the other conditions (fluid in his brain, fluid around his heart, not to mention the same complex heart and kidney issues we are already aware of.) in the hour we were getting the ultrasound, his heart rate ranged from 97 BPM all the way to holding steady at 214 BPM, which is extraordinarily high. the placenta is also twice as large as it should be, which can cause problems as well. my amniotic fluid levels are still low at 4.6 where ideal is 10+. (this is actually up from last month, when they were at a 3.)

it seems our options are: 1. to deliver him now, while he's still alive and can possibly be born alive, or 2. take a wait and see approach. if he was born now, his lungs would not be able to function and it would surely mean death shortly after birth. however, his condition isn't going to get any better from here on out. waiting to deliver him means that he may not be alive by the induction date.

can we get a third option, please?

thankfully, we have another appointment with my OB tomorrow. we have a lot to discuss.

so after the ultrasound, i was waiting to get my vitals checked and i thought about the previous blog i posted. at first i thought, "guess i should have waited to post that one!" since i talk about how i felt God was preparing me to carry jonathan to full term. but then i decided that maybe he was just preparing me to, and not going to require it of me. now i'm just confused.

on the way back from the hospital, greg and i talked the entire time about this new choice we were facing. two very interesting things came up. first, i told him about this verse that has been on my mind for about a week now: "Wait for the Lord; be strong and take heart and wait for the Lord." ~Psalm 27:14 i had no idea why this verse kept coming to my mind...until today. the second thing was that i told him basically what i posted in my previous blog, about feeling that jonathan would make it to 37 weeks. i didn't know why i felt that way, but i just did. greg said, "hmm, that's interesting..." and proceeded to tell me about a conversation he had a week ago with someone about how he just really felt that jonathan would make it "37 weeks." he didn't know why he felt that way either, he just did.

either way, we do not feel at peace inducing jonathan anytime soon. God may not speak audibly for us to hear His answer on this, but i do believe He will give us peace for one decision over the other.

we are asking for your prayers concerning these things:
~ that jonathan would make it to the original induction date of november 7. he would be 37 weeks.
~ we would like it to be very obvious that the time has come for jonathan to be born. there are things that can happen to make this obvious, such as my water breaking, or going into labor, etc. all while jonathan still lives.
~ that our doctor would be given divine wisdom on how to proceed, considering jonathan's worsening condition
~ that jonathan would be born alive and we would get the chance to hold him during that time
~ that a breech delivery would not take any toll on jonathan' health during labor and delivery
~ that if an earlier induction date is suggested to us, that the Lord would grant us much peace about it if the date is part of God's will.

thank you so much for praying!!

i found the following on the internet, regarding "waiting for the Lord":

"As we go through life, we come to understand more, when we grow closer to Him and become more focused on Him, that there are some things in life that we need to wait for. Why? Because God's timing is so different from ours. This doesn't mean that if we ask for something or are planning for something to happen in our lives and it doesn't come quickly or the way we thought it would, that God will never give it to us or bring it our way. God's ways and timing are always different from ours. He knows our wants and desires, but He also knows when it's best to give to us.We must mature in believing that God will give us what we need and bring answers to prayer at the perfect time. He will always work in perfect timing. We cannot understand that at all! That's because we are humans and we aren't perfect. God works in ways we cannot see. He's working right now, at this very moment, in your life and around you. You'll be so amazed at how He works through you and gives to you when you least expect it.If we wait on the Lord and be strong and take heart that He knows what He's doing, He will really surprise you and amaze you with His perfect timing and wonderful plans! Trust in God and wait on Him!" ~Zach Wood


in other jonathan news, he now weighs a whopping 3 pounds, 12 ounces, up almost 2 pounds from last month! this is the 30th percentile. his body and head measurements are about where they are supposed to be for his age. he is still breech, of course, sitting indian-style and with one hand across his forehead and the other in front of his mouth. i don't think we've ever seen him without his hands over his mouth. we were also able to get some pictures and short video clips.

this video clip is of his face. it looks like a pretty clear shot, but because both hands are up over his face, they had to try to "go behind" them to get the shot. so it's not incredibly clear or anything. but good enough for us!

7 comments:

  1. Lauen and Greg,
    These appointments never seem to bring good news, do they? However, God was not surprised at the findings. He already knew, and He's been speaking to you well in advance of today's news. Continue to look to Him and He will direct your path and the choices the two of you make. I'm praying for you. I know how what you are feeling, all too well.
    Linda Robinson

    ReplyDelete
  2. Lauren,

    I will be praying that God will make His will regarding Jonathan's arrival crystal clear for you, Greg and your doctor and that He would grant your request to hold your baby boy- alive. I am living this with you as we wait on the Lord in our own situation with our little Henry, full T13, due Jan 28. I continue to read your blog with baited breath...daily. You are such a testimony!!! Our love and prayers are with you.

    Julie Wilcox
    Suwanee, GA
    Henry's grandmother
    Katie (Wilcox) White's mother

    ReplyDelete
  3. Lauren and Greg and family,

    I will pray specifically for God's will to be clear for you and the doctors. I know that God's timing is ever so perfect. Hold on to His promises of Jeremiah 29:11.

    Not too long ago my husband and I prayed for a situation that He was growing us in and I said, "Lord, the only way that I'm going to know this is Your will is if you work out all the details." He did! The most unbelievable details were orchestrated by His Almighty and ever present hands.

    You are in my prayers. I will pray for you, your family and that sweet 3 pound 12 ounce precious child. God has brought you and him this far and He's not going to stop carrying you all anytime soon.

    Love and prayers,
    Stacy Kuhl

    ReplyDelete
  4. Lauren,
    Praying you are amazed, and the doctors are surprised, with Jonathan's health at his delivery (whenever God decides it is the right time).

    I have followed the Caring Bridge site of a boy that wasn't supposed to survive delivery, because of a very small brain. I believe he's passed his 1st birthday already. They found out that he is blind, but he LIVES, and the doctors said he would die right away.

    Only GOD KNOWS the plans for Jonathan, and how the witness of you and Greg will touch the world. Many blessings. Praying for the peace of God to surround you both.

    Love, in Christ,

    Nurse Barb

    ReplyDelete
  5. Lauren - I don't know you but my heart is so in tuned with you this morning. I am just a tad bit behind in reading the News Bulletin and as I ushered my children out the door for the bus this morning - I sat down to do a little catch up. Nineteen years ago I was blessed to carry my "Sam". Samuel Joel was born on September 5th, 1990 with Trisomy 13. I was unware that my precious first born would only survive a short period of time - but I was so blessed with the time that I had with him. Please know that I will be praying for you constantly in the weeks to come. You and Jonathan are in the palm of our Lord.

    In Him, Karen Edgington-Philpott
    (850)902-2030
    email ksue0602@hotmail.com

    ReplyDelete
  6. Lauren, I am sorry to hear about the news at your Doctor appt. yesterday, that is part of the emotions of each ultrasound, right? Excited to see your baby moving again but scared about the news the Doctor is going to give you. My husband Bobby and I are Grace's parents (from the Trisomy website). Grace is due 11/20 and the first induce date was 10/26 but are now pushed back to 11/2. That would be the same week you guys are scheduled! It is quite an experience to go from the emotion of learning you are pregnant and daydreaming of your baby growing up to hearing your baby's condition and hanging on to your hope meeting your baby alive - if not for a day, than at least an hour. Pleading with God for ONE HOUR with your baby. I can't say what I know what you are going through or what you are feeling (many days I don't know what I am feeling!) but if you want to talk, I am here. I don't use the email connected to this blog really, best one is, krobinsd@yahoo.com or you can facebook me (Kimberly Shedd). Several people have reached out to me and though I don't really look forward to talking to a stranger about this very personal thing, I have always felt better after doing so. You guys will make it through, you have no other choice. God will carry you, just like he is carrying Jonathan. God already knows what will happen and that you and Greg are the perfect parents for Jonathan, that's why he chose you. One of my fav. verses - Exodus 14:14 "The Lord will fight your battles for you, you need only be still". Bobby and I will pray for you, Greg, your daughter and your little guy today.

    ReplyDelete
  7. Lauren-
    As I read your previous blog about Abraham and Isaac...and then read in this blog where you stated "and i thought about the previous blog i posted. at first i thought, "guess i should have waited to post that one!" since i talk about how i felt God was preparing me to carry jonathan to full term. BUT THEN I DECIDED THAT MAYBE HE WAS JUST PREPARING ME TO, AND NOT GOING TO REQUIRE IT OF ME." Sounds to me like your post about Abraham and Isaac was very appropriate considering the circumstances. Just as you know God prepared Abraham to sacrifice his son, but in the end did not require it of him. He too has prepared you to see your unfailing obedience even though in the end, He would not require it of you. Jonathan is a very blessed child to have you and Greg as his parents...

    May God Bless You and Your Family Always-
    Shannon Garcia

    ReplyDelete