Jonah's Pictures

Thursday, March 12, 2009

Now We Wait

We had a couple of appointments today; one at Kelly's primary care clinic, and the other at the Perinatal Center at Meriter Hospital. Neither appointment revealed any new information, but we did make some slight changes to the birth plan and we got to meet the neonatologist that will be present when Jonah is born.

The first appointment was for the final ultrasound which was easily the shortest we have had and it did not reveal anything new. The purpose was to give us one more chance to look at him prior to the birth. Like the other ultrasounds, it was an emotional experience, but we are grateful to get whatever chance we have to get a look at him. The profile view of his head always gets me choked up because I see Evan's facial features when I look him...

The appointment was also a pre-op visit with a nurse and the doctor who will do the c-section. That was routine, going over procedures and signing a release form. Nothing of note came out of the visit, other than we picked up a grape sucker for Evan. At least someone got some enjoyment out of it!

The appointment at the hospital was more interesting because we got to meet again with a nurse that serves as one of the infant loss coordinators, and we got to meet with the neonatologist. She was quite a comforting presence to us, and she went over a variety of possible scenarios and what options we may have when he is born. We are both glad that she will be there for Jonah, and for us.

I have to start out with what we have known for some time -- Jonah will not be with us for very long. How long? It depends on his lungs and how much they expand after he is born, and their ability to release carbon dioxide. The last time we had his chest cavity examined on an ultrasound, the images showed a large heart in a small chest cavity. That means small lungs, which is not a good sign. As a result, they don't know how long his lungs can support him after he is born. It may be an hour, it may be longer. We won't know until he is here, but the unique circumstances of his development and pre-natal care may put him into a "gray area," as she put it, that would allow him to survive a little while longer.

The "gray area" was not new information, but it was re-enforced by the neonatologist today, which caused the slight change to the birth plan. Instead of just focusing on comfort care, we are going to let Jonah guide us down the best path. If he is struggling significantly at birth, he will be given enough breathing support so that we can spend some time with him as a family. If he is doing better and can get by on his own (or with just oxygen), we will go with it and be flexible with our care plan for him.

So now we wait. We are still on schedule for noon on March 20th if Kelly does not go into labor before then. Unfortunately, I can not make any promises about when I can update the blog after he is born. I know that this may be your only source of information and I will do my best to update it when I can. Jonah will decide that too.

John and Kelly

9 comments:

  1. Kelly and John: While I am unable to relate to your situation, please know that you are in our thoughts and our prayers on a daily basis. You both seem so strong and your support network sounds great, but if there is ANYTHING we can do for you, please don't hesitate to say so! My cell is 347-2936. Evan sounds like a treasure and little Jonah a precious gift who will always be in the hearts of many!
    ~Lydia

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  2. Thank you for the update. i've spoken to Kelly a few times as I'm in the same boat you two are. Carry a child to term suffering from LUTO or PUV beyond intervention. I'm due in June. You& Kelly along with Jenn have been great support for me as we all go through this horrible thing together. I'm so sorry you have to go through it, my prayers are with you and your family.

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  3. Hello. I just happened to come across your site and want you to know my thoughts and prayers are with you! I am 29 weeks pregnant with a little girl doctors believe has Autosomal Recessive Polycystic Kidney Disease. The diagnosis is a little different than your's, but my pregnancy problems are almost identical. I have almost no fluid, and doctors are unsure if my baby will have sufficient lung development to survive. I am due the end of May. I believe God has a plan for you and is going to use this difficult situation in a good way, regardless of the outcome. Take care!

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  4. Jonah, Evan, Kelly, John,

    Our prayers are with you as the date draws near.

    Dave & Dorothy

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  5. My prayers are with you as you go through this difficult time in life.

    Patti Wadzinski

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  6. Dear Kelly, John and Evan,
    You are all in my heart and thoughts each day as Jonah's birth date nears. Whatever time you share as a family will become priceless memories you will hold onto forever.
    Love, Lori

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  7. I've been thinking about you and your family all week. Everyday that gets closer to the 20th Kelly is always on my mind. I've said it before, yet i'll say it again. You, Kelly, Evan and Jonah are in my prayers.

    Stephanee

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  8. God has many ways of testing our strength and love for each other. Supposedly he only gives us what we can handle. I think this is as much as one person can handle in a life time. Jonah will always be with you, your special Guardian Angel watching over Daddy, Mommy and Big Brother. He is coming for a reason and leaving for a reason, we just may never know what that reason is.

    May God be with you and yours, you are in my thoughts and prayers!

    Sandi Jones

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  9. Words can not express how deeply sorry I am or how incredible I think the two of you are. The strength and courage you have shown thru all of this is amazing. I will think of you tomorrow, the first day of spring and Jonah's birthday and hope that whatever time you get to share is wonderful. You are in my thoughts.
    Dawn (Kennedy) Layne
    Renaissance Learning

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