May 5, 2011

Patience

I think that God is trying to teach me patience.  It's not that fun a lesson.  I'm really, really, really not patient.  Motivated? Yes. Driven? Yes.  Hard-working? Yes.  Not patient.  But I'm going to have to find some patience while Clara learns to eat, because this part of the journey is not going to be fast or easy.  I know that we've only been trying for a few days (three, to be exact) and that it may take many, many days or weeks before she figures it out, but it is enormously frustrating.  My whole life I've thought if I just worked hard at something and really gave it a good effort and planned enough and was motivated enough, I could achieve anything.  Guess what doesn't work that way?  Trying to teach a six week old how to eat for the first time.  There's nothing I can do to make her re-learn that sucking reflex that she hasn't needed for the past six weeks and doesn't really have any more.  Thank goodness Martha (the lactation consultant) is patient enough for both of us because we spent a lot of time today trying to convince Clara that my milk would be yummy.  Without going into more details about my boobies than you really want to hear I'll say that she's not rejecting the breast, she's just not really latching on and sucking either.  We stopped her continuous feeds for three hours this afternoon in hopes that she'd be hungry enough to want to eat, but apparently she's not as motivated as I am.  Three failed attempts today have me a little frustrated, disappointed and discouraged.  But I will not give up!  Enter: patience.  Here we go.

That was the bulk of our day today.  Aside from trying to eat, Clara got to enjoy a long snuggle time with her Big Daddy this morning and her Daddy this evening (and Mommy in between, of course).  We're still weaning the sedatives (today it was the Versed) and we're starting to see some of the signs of narcotic withdrawal: yawning, sneezing, and vomiting (twice yesterday and twice today).  She was also a little fussier this afternoon than she has been, but I'm not sure how much of it was just six-week babies are fussy and how much of it was withdrawal.  Since we're not completely sure if the spit up/vomit is withdrawal or acid reflux we have added Prevacid to her list of drugs and acid reflux to her list of diagnoses (we resolved chylothorax and pleural effusion today, so it was a two for one trade off at least!).  Her chest x-ray looked better today than it has in several days, so hopefully some of the fluid is leaving her lungs.  We're going to work on weaning the flow of her oxygen.  She was at 3 liters, and we turned it down to 2 liters today and she has tolerated that wean just fine.  Hopefully we can continue to wean that flow over the next several days; she can go home on oxygen if need be, but not at these flow levels (and we're prayerful that she won't need to go home on it at all!)  Tomorrow is another change in attending physicians, we'll be back to Dr. Yang for the next two weeks. 

The things we need to pray for are:
- FEEDINGS (both for Clara's health and for Mama's sanity.  Please pray that she'll figure out this whole eating thing.  Preferably sooner rather than later.)
- Tolerating the wean of flow on her oxygen cannulas and that she will be able to be all the way off in time for her to come home without that support. 
- A successful transition off of her narcotic drugs without the difficulty of painful or uncomfortable side effects.
- Acid reflux (If the spit up/vomit is acid reflux, we are prayerful that the prevacid will treat it.  Most CDH babies do have acid reflux, but since she's now receiving all her medications in oral form, spitting up and vomiting means we're losing some meds and it's hard to determine exactly what or how much.  Please pray that we won't have any more episodes of that...)
- Protection from other illness, complications and setbacks.  Our momentum may have slowed a little, but let's pray that it keeps going in the right direction!  
- Another smooth transition in change of care

My camera battery died today.  Apparently you have to charge it after 43 days.  But here are a few shots I got before it puttered out on me:












But hope that is seen is no hope at all. Who hopes for what they already have?  But if we hope for what we do not yet have, we wait for it patiently.  Romans 8:24-25

22 comments:

  1. Sure looks like Clara loves her Big Daddy. The last picture is soooo sweet.

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  2. oops. That's Daddy, not Big Daddy, right?. Still a sweet picture.

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  3. Mary Ann MartinMay 5, 2011 at 9:52 PM

    Glad to hear the x-ray looked better...have been praying off and on all day for Clara's wet lungs...my youngest son was born with reflux (he had outpatient surgery to fix it)...I will pray specifically about the eating and reflux ~ I am familiar with that prayer...Give Clara a kiss from Elberton ~ Love, Mary Ann

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  4. hey you have prob already done this, but they have these clear floppy nipple shields with little holes in the tip that you hold on the breast that were very helpful to me the first few days of feeding. Hudson wasn't interested either, and they threatened to not release us until he ate so after 45 min of trying and failing that 3rd day we broke out the shield and he finally figured it out! Since she has taken the passi, maybe something a bit more familiar would ease the transition! Good luck! i have faith that that bright young lady will figure it out and that your persistence will lead to triumph! I've already seen that from you two!

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  5. She looks so well! I'm still praying everyday!!! Love from PA : )

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  6. We are praying every day and sending you love. All will be well.we love you. My three year old saw the blog this morning and said "baby Clara!!!"
    The Van Duyn family

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  7. Clara, really looks bright and reactive to her family in her photos today. Hoping for her to latch on and feed tomorrow.
    Sandra

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  8. Patience is a virtue I've never had either. But God will deliver things to teach it to you - and nothing better than a child! I'm sure it's just one of many many things Clara will teach you. But just think of all the things you have to teach her, and all the years you have to do it....and be patient :o)
    Clara looks GREAT today! Sending love and prayers as always.
    -Cambra

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  9. Clara is looking great and so bright eyed. Will pray for patience, feeding and weaning.
    =Marietta

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  10. I am not good a waiting myself so I know what you mean. It is hard. I will pray for that for you.
    Love,
    Annette and Randy

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  11. I know that this part can seem the most frustrating! I too lack patience, but was forced into seeing that things were not on my timeline. Katie repeatedly refused the breast and didn't do much better with the bottle. I was adamantly opposed to another surgery for g-tube placement, so we continued to work on her for 3 full weeks until she could take the minimum amount (45ml) per feed. It is so frustrating because you have seen how far they have come, and now you feel so close to getting home!! Good luck, and we will continue to pray that she makes steady progress!!!
    ~Beth Cole

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  12. Chrissy,
    Clara is doing beautifully. She will figure out the sucking thing!! I wanted to thank you for sharing this verse - I am certain I have read it repeatedly through the years, but today it really blessed my heart in a profound way.

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  13. Beautiful pictures of all of you! Your comments about "doing things" with enough drive, or hard work were familiar to me. When we had our third child, Drew, who of course you know!,and already had a 4 and 2 year old, Drew had colic 24 hours a day. I totally lost patience, because no matter what I did, he cried most of the time until he was 6 months old. Finally I accepted grace, which is so much better. And eventually (at 6 months), the crying went away. I think you already have grace, and Clara Mae will figure the feeding issue out as well. She has figured out everything else!!

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  14. Happy Nurses Day to all Clara's nurses. Speaking of nursing..come on, Clara, you can do it.

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  15. Don't give up...breastfeeding is hard at first but don't give up! No one can really prepare you for how hard it can be...I thought it would be so natural and I got very frustrated at first. After 3 long weeks, a case of mastitis, and bleeding nipples, we finally figured it out! Then, it was so much fun and easy. You're such a trooper for pumping all these weeks and I know Clara will get the hang of it soon!
    Love from SC,
    Kristin

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  16. Hang in there with the nursing. Nursing a healthy baby can be very frusturating at first but nursing a CDH baby can seem impossible!! It wasn't until we got home that our son really started nursing well - nursing at the hospital didn't work for us at all. After about a month at home, he finally caught on (at almost 3 months old) and nursed 100% from then on. As you know, CDH is a HUGE test of patience! I have been following your blog since Clara was born and she is an amazing CDH fighter! Congratulations on all of the progress she has made so far!

    Michele
    Mom to Andrew
    CDH/ECMO Survivor

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  17. Sarah and I have a friend who just had a baby girl. Her baby's name is Addison Mae and she has a picture on facebook with the same yellow duck sleeper that Clara Mae had on Tuesday.

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  18. Love TWINKLE TOES .... that little light shining through her rompers is delightful. SHINE ON, sweet Clara .... you do LIGHT UP my life!

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  19. I've been following for a while... heard about you from Nan Teasley who I teach with. I pray for you every night and I'm so glad to see all your baby steps! As far as breastfeeding goes, know that it is the HARDEST thing I have ever done, and my baby had no major complications. One of the most frustrating things was not understanding how hard it is... it looks easy right? KEEP AT IT, YOU AND CLARA CAN DO IT!

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  20. Chrissy, hang in there with Clara learning to eat. Slow and steady wins the race! When I worked NICU, every ECMO baby I cared for was slow in the eating department. We used to sit around and try to figure out why - ? neck muscles, etc, but in the end, they ALL learn how to eat. It just doesn't come as quickly as you would think. You are very right, patience, patience and more patience. Welcome to motherhood! Clara looks great and her grandpa looks very, very happy!

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  21. What beautiful, sweet kissable lips she has!!!! Chrissy, you are no different from any other new mom, we all wanted to make things work like clockwork because that was what we were used to........before kids........and after kids.......well it is a whole different ballgame and you have to make the adjustment or you WILL go crazy!!!!! Relax, she isn't going to go hungry, she will eventually get it and this will all seem like a distant memory!! It is kind of like the potty training event....they don't go to kindergarten with diapers....they get it when they are ready and on their own terms. I think Clara Mae's determined and fighting spirit will continue to kick in and she is going to "get it".....Hang in there! You are a great mom and you are getting ready to celebrate your first Mother's Day.....it will be a special day for you and Clara. Will keep praying God's work to continue on in Clara!

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  22. Clara is so, so beautiful! I love those wide, watching eyes. And I can't wait to see how her hair grows back. :)
    As others have said, nursing a healthy baby who gets to start learning day one is hard!- I'm sure it's that much trickier for Clara to figure out, but she'll get it.
    My little guys weren't good nursers at first, so I just started pumping full-time, until one day I was out, without my pump, and needed to pump. I started to freak out when I realized I had 2 human pumps. They hadn't nursed in 4 weeks but did great! They just needed to get stronger.
    It sounds like you have a great lactation consultant. I know the patience is tough. Just remember that her getting nutrition in the most important thing, and if you can give her breastmilk, whether through bottle, feeding tube, or your breast, it'll be just as good for her. And she's certainly a good snuggler so won't miss out on any of that special time. :)

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