March 27, 2011

Day Five

We had another rest-filled day for Clara and are praising God for these hours and days of stability.  We thank you all for your prayers and ask that you please continue praying that she will stay stable and continue to make progress towards being ready for surgery.  We’re taking small steps, but celebrating each little victory along the way.  In addition to getting off of the dopamine yesterday (which was apparently a bigger deal than I even realized), today she also began to reduce her sedation.  Obviously, we will leave her sedated some so that she is still and comfortable, but reducing her versed is another goal because it also helps her systemic blood pressure.  She was definitely a little more alert today, kicking her legs and responding more to touch and even light.  The nurse said she even had her eyes open some this morning, although we did not get to see that while we were with her.  Tomorrow, she will begin some Lasix which is a diuretic.  This will hopefully help get some more of that fluid off.  She will also have another echocardiogram tomorrow to determine how her pulmonary hypertension is doing.  This is the biggest factor to determine her surgery and one of the main things that we ask for you to continue praying for.  Go away pulmonary hypertension!!

Yesterday we mentioned that Clara might get some of my breast milk today.  They did place the NG tube (in her nose) and begin giving her a trickle of milk.  Then, a couple hours later the attending surgeon (Dr. Turner) had a chance to consult with her primary surgeon (Dr. Petty) and they decided to stop the milk for now.  Although the nutrition would be great for her, we cannot tell right now if she has a bowel obstruction or not since all her guts are smooshed and in the wrong places.  Dr. Turner said he thought that it was unlikely, but just to be safe we don’t want to create a bigger problem there.  So breast milk is on hold until after surgery for now.  She will  continue to get full nutrition through an IV (called TPN) and they are looking to gradually increase her dextrose in that dose.  It started at 10 and is expected to be at 17 by tonight.  Those extra calories will give her more strength as well. 

Her respiratory tidal volumes (how much air she’s breathing in) were better today as well and the chest x-rays look like the pneumothorax that she has a drain for is starting to resolve. 

Robert and I got to rub some lotion on her today and it was great to hold her little arms and legs and be able to care for her as parents by meeting one small need.  I continue to pump milk and freeze it for her – I’m pumping about every 2 hours to keep the supply up and make sure my body doesn’t figure out there’s not a baby there right now.  That means that a huge portion of my day is spent pumping and washing pump pieces.  For instance: I pump at 6:00 for 20 minutes.  Store the milk and wash the pieces and it’s about 6:40.  Then, I pump again at 8:00.  That’s a lot of the day (and night!)  Waking up during the night to continue pumping means that a nap in the afternoon is imperative.  I’m starting to figure out what a routine and schedule will look like for the next few weeks.    Since being discharged from the hospital yesterday, I’ve been staying at my parents’ house to have my mom help with things.  But tomorrow, we plan to move back home and begin to settle in there.  Fortunately, Robert’s mom is here all week (thank goodness it was her spring break!), so she’ll be helping to take care of me, cook for us and drive me back and forth to the hospital next week.  Thanks to the many of you who have asked how I’m doing.  I’m recovering very well from the C-section and am feeling good as long as I stay ahead of the curve with pain meds.  I’m glad I’m feeling good because it means I can focus on Clara. 

Robert returns to work tomorrow.  It will be very difficult for him to be away from Clara, but we know that the distraction is probably helpful in some ways.  Plus, he’s in sales so his salary is 100% commission.  We need him working to be able to pay the medical bills that will be coming.   Remember him as he tries to re-enter reality some tomorrow. 

That’s about it for today.  Things to pray for: reduced pulmonary hypertension, continued stability, wisdom for doctors who are making decisions about her care and specifically about when surgery will occur, continued protection from the many potential ECMO complications, Robert’s return to work, strength and rest for all of us.  


Clara's hand holding on to her "Irish Bunny"

Mommy and Daddy loving this precious girl so much

Mommy loving Daddy; Daddy loving baby
Aunt Stacy meets Clara!

Daddy can't stop kissing that sweet little head

18 comments:

  1. Continuing to pray for all of you. Especially for rest, energy and endurance for the days ahead. Also praying specifically for the doctors ministering to Clara. May God guide their thoughts, their decisions and hold their hands steady when the time comes. Rest as much as you can momma because you will need everything you got in the days ahead!!! Let Karen take care of your every need.

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  2. What precious pictures!!! Thank you for sharing them and all the updates! We continue to pray for you all and appreciate your giving us specific ways to pray. We love you!

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  3. Love the updates and glad things are going so well! As someone who exclusively pumped for a year (breastfeeding didn't work out, but I still thought breastmilk was very important) I wanted to send some pumping tips that will hopefully make your life easier. I got these tips from a lactation consultant. You don't need to wash your pieces every time, given that breastmilk is good outside the fridge for 5-6 hours and that's what is in the pump pieces, you don't have to wash them each time. Additionally, since breastmilk is okay in the fridge for several days you can put your pieces in a bag in the fridge in between pumps as well to extend them more without having to wash them. I also highly recommend getting the Medela wipes and steam bags, it makes things easier to clean. As someone who also felt like they were losing precious time washing everything, these tips really helped me get back precious time. Also, as long as you pump atleast 8 times a day (you could probably go every 3 hours or do every 2 and go a longer stretch at night) your supply should be fine. Good luck with it all, you are doing a great thing pumping for Clara. She is so lucky to have you as a mommy!

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  4. I'm so happy to hear you are allowed to touch Clara. Many times, we weren't allowed to even talk in Ramsey's room, let alone touch him. I think a parent's love makes all the difference and that was proven to us the few times we were allowed to sneak in a kiss or touch in those first few days.

    Lisa Razza
    Mom to Ramsey, born 1-12-11
    LCDH survivor
    rootingforramsey.blogspot.com

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  5. I'm a friend of Trey/Jennifer's from FBC Raleigh. Just wanted to jump on the prayer train for you! My son Jay was on ECMO after open heart surgery this summer. Jennifer got to see his rockstar neck scar today. :-)

    If you're interested in seeing another family's ECMO journey, feel free to visit our blog:
    http://torquilandcheezedoodle.blogspot.com/

    I'm also a former exclusive pumper and thought you might benefit from the expertise on the following message board:
    http://forums.ivillage.com/t5/Exclusively-Pumping/ct-p/iv-ppexcluspump

    I was mostly a lurker there, but they had some great tips (much like Regan's above!). I also suggest you get someone to go to Babies R Us and get you a couple of spare pumping parts. It's a HUGE help to wash just once or twice a day, assembly line fashion.

    Praying for little Miss Clara!

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  6. Love, love, love the pictures of you three.

    Chrissy, your reflection on rest preaches, my sister. It reminded me of a favorite poem which I can find only in part right now. It is by Mark Nepo who struggled with a serious illness.

    What Ties Me to the Earth is Unseen
    My heart was beating like a heron
    awakened in the weeds,
    no room to move.
    Tangled and surprised by the noise of my mind,
    I fluttered without grace
    to the center of the lake
    which humans call silence.
    I guess, if you should ask,
    peace is no more
    than the underside of tired wings
    resting on the lake,
    while the heart in its feathers
    pounds softer and softer.
    -- Mark Nepo

    Besides constant prayers for Clara, praying especially for Robert and you as he goes back to work. Praying for deep peace, for healing, for rest. Love and bear hugs to you all.

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  7. P.S. Chrissy, I need to find a way to get some steam bags and Medela bags to you. I have some left over. Could I bring them to your mom at church? Just let me know...

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  8. Oh the breast pump!! I still remember the swoosh swoosh of that machine when the boys were in the NICU. Almost hypnotic after a bit. What a marvelous machine:) Love the new pictures and the specific prayer list that you posted. It helps to be able to focus those prayers:) I know that tomorrow will be a difficult one for Robert and for you to not having him with you. What a blessing that his mom will be there to help out. Continued prayers coming your way:) Tory

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  9. The Yorks are praying for Clara and all of her family. God Bless each and every one of you. God please give them the strength to be right by Clara's side. Our love to all of you!!!

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  10. St. Gerard, who, like the Savior, loved children so tenderly and by your prayers freed many from disease and even death, listen to us who are pleading for our sick child. We thank God for the great gift of our daughter and ask him to restore our child to health if such be his holy will. This favor, we beg of you through your love for all children and mothers. Amen.

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  11. The prayer I just posted was one we had received for Emery - just to clarify - I posted it for Clara. "...our sick child... our daughter" is solely for her.

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  12. Thanks be to God, as I enter "normal" tomorrow morning, I will keep Robert in my thoughts and prayers that he will find purpose, while you and Clara rest and heal.

    Tammy Van Duyn

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  13. Many prayers for continued stabile days, and days of rest for your beautiful baby. Many prayers for forward steps!
    Hugs,
    Jennifer
    Mom to Dakota 12-25-2008
    CDH/ECMO survivor

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  14. I was going to post what Regan said about putting the pump pieces in the fridge between pumps, too! I totally understand how time consuming pumping is, and I only did it every 3 hours at my peak. It will definitely be worth it in the long run for Clara though, even though it seems so time consuming and repetitive at times. :)

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  15. Jennifer Holmes/ Warrior Charlie's momMarch 28, 2011 at 12:02 PM

    Chrissy,

    I wanted to make a suggestion about the milk. I have not read through all the comments, so you may have already done this. Get a deep freezer! I also pumped every 3 hours round the clock and Charlie did not come off the TPN until 28 days. Then the quanity of milk was sooooo small and progressed so slowly I ran out of room for storage (by then your milk will have built up to a large quanity). I actually had 2 deep freezers filled. Now Charlie is 13 months and I am trying to donate all the old frozen milk. We used the colostrum as soom as he started feeds and most of the early milk but still had a ton left over. I was slowly able to switch (after a lot of hard work) to just nursing once we got home. I was so tired of washing all the pieces, pumping and nursing with every feed.

    Continually praying for you guys. I don't have a blog but but you can find me on facebook (Jennifer Harlach Holmes)if you need ANYTHING!!!!! Please don't hesitate to ask....there a tons of people here for you guys with whatever you need.

    Jennifer Holmes

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  16. Thank you God for each little blessing that is leading her to surgery! Happy to hear you are resting some.

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  17. Sweet Clara has been in my thoughts and prayers off and on all day...praying for no pulmonary hypertension:)

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  18. So glad to hear that Baby Clara is somewhat stable. Y'all have been on my mind and in my prayers continually since I heard about your situation!

    PS--I love your first family photo! It's beautiful!

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