May 8, 2011

Mother's Day Weekend

Thanks for your patience and understanding while I took a little time away from the blog.  I just needed a bit of a break – nothing personal, oh faithful readers. Let me catch you up on the last couple of days…

Friday was our first day with a new attending and we made a few little changes.  She increased one of the diuretics that Clara is on – Diomox – and also added some more caloric value to her breast milk as a supplement.  Since we had stopped feeds for awhile on Thursday to try to breast feed, they were concerned that she wasn’t getting enough calories/fluid, so we are not stopping her continuous feeds any more.  They also decided that Clara was not quite ready for oral feeds yet.  She will take and hold a nipple (either the bottle, a paci, or mine), but wasn’t really sucking and they think that she’s just not strong enough yet.  The combination of being very tired, sick and on a lot of sedatives may just be too much for her.  So oral feeds have been put on hold for a few more days while we continue weaning sedatives and give her some time to build her strength.  It is very encouraging that she doesn’t seem to have an oral aversion and we’ve been working on her OT mouth exercises and continuing to give her practice with the paci until it’s time to try feeding again.  Thanks to everyone who has offered encouragement and advice about feeding.  It’s been good to hear from so many people with your own stories of success.  We are determined to keep trying and would of course love for her to ultimately be able to breastfeed.  We recognize that we may have to start with the bottle with her and then try to transition back later.  I’m thankful that I’m producing lots of milk (apparently my body thinks I’ve got twins… I’m making twice what she is eating right now!) and that she is getting “the good stuff” one way or another.  Honestly, I was so frustrated and disappointed on Thursday that I think a few days’ break from trying is probably just as good for me as for Clara. 

Friday, Clara started spitting/throwing up with increasing frequency.  While it is normal for babies to spit up, we were especially concerned about this for her because the nine (count ‘em, NINE) medications that she’s on are all oral now, so when she throws up she’s often losing medication.  Robert and I eventually figured out that she was always throwing up after the Diamox, the diuretic that we had just increased to four times a day.  So on Saturday we cut the dose down to once a day and today we cut it out altogether.  We were pretty proud of ourselves for figuring out what was causing her spit up when none of the medical professionals had connected the dots.  These are the kinds of things that validate my being there for long days.  I know it’s important for me to be her advocate and there are some things that the nursing staff, as wonderful as they are, cannot notice when they’re trading off from one shift to the next every eight hours. 

Medically, the only other things we’ve really been doing are continuing to wean her oxygen, treating her incision and pressure wound which have both lost scabs and left yucky craters of goo beneath them, and continue weaning her sedative and painkiller (versed and morphine).   We had her oxygen as low as 35% at 1.5 liters at one point over the weekend, but as her breathing started to look a bit more labored and she required an increase of O2, we’ve increased the flow back to 2 liters.  It’s important that we try to keep the O2 levels as low as possible since oxygen at high levels can be damaging to the lungs.  Hopefully if we can get the O2 levels down we can stop the cycle of fluid build up in her lungs, decrease the diuretic and also be able to drop some of the supplements she’s getting (sodium and potassium) as a result of the diuretic.  At the same time, we want to reduce the flow as well.  In order to be moved to “Intermediate Care” we have to be at under one liter of flow and to go home we need much less than that.  One doctor this weekend suggested that he thought we would go home with some oxygen still, but Robert and I are prayerful that we can wean it all off so that we won’t need that support.   We should be consulting with some wound care/skin specialists sometime this week to look at her pressure sore on the back of her head and her incision from surgery too.  Both are healing well, but have left big craters and we want to be sure that they continue to heal as well as possible and that we avoid any infections at those sites.  Clara is tolerating her wean of morphine and versed very well.  Those drugs should both be off sometime this week as long as she continues to tolerate the pace that we are weaning now. 

Aside from those medical updates, we had a fantastic weekend with Clara.  Saturday was such a special, sacred day.  Sweet Mama and Big Daddy spent some time with Clara early in the morning before Robert and I got there.  The four of us all went to lunch together and then my mom and I got to spend all afternoon together at the hospital with Clara.  It was the perfect Mother’s Day weekend.  We both got lots of snuggles and enjoyed spending time with each other and soaking up this sweet baby girl.  Last night, Robert and I had a date night for the first time since Clara’s birth and it was nice for the two of us to get away and reconnect with each other outside of the hospital or our living room couch.  Today we all celebrated Mother’s Day lunch together and also enjoyed some time with all of us at the hospital this morning.  This afternoon, I got a little one-on-one Clara time to soak up that sweet smell, that perfect fanny, those tiny strong fingers, those big blue eyes, and that soft warm snuggly body.  I love that girl.

On this Mother’s Day, and every day, I am so thankful for my mama. She is a remarkable woman and the best mother than anyone could ever dream of.  She is daily an inspiration to me and I hope and pray that I’ll be able to be half of the mother to Clara that she has been to me.  She is selfless and generous beyond all expectations.  Over the past six weeks while everyone has been focused on Clara, my mom has been solely focused on me.  She has driven me around, taken me to lunch almost every day, cleaned my house, done my laundry, arranged for our meals, and insisted that I sleep.  She has listened to me when I’ve had breakdowns and helped me process both the grief and joy of this situation.  She is my best friend and I don’t know what I’d do without her.  I’m sure that my deep desire for a daughter is rooted in part in my appreciation of my relationship with her and the desire to share that with one of my own.  I am so excited that Clara is going to get to grow up with this amazing grandmother here in her life and look forward to what these three generations together will learn and experience.  Yesterday and today, we just sat there looking at each other and saying, “Can you believe this is real?  Can you believe that she’s ours?  What a beautiful gift this is!”  My maternal grandmother died before I was born, so I’m very thankful that the three of us will get to share some special memories together.  On this Mother’s Day, I’m thankful for Clara and the opportunity to be her mother, but I also understand and appreciate in a whole new way my mother’s love for me.  As much as I love Clara (which is a lot), my mom loves me that much times 30 years.  I come a little closer now to understanding the depth of that love and I am thankful for it.  One of God’s beautiful gifts to us. 

Here are some photos of our precious bundle from the last couple of days.  She just keeps getting cuter and cuter. 








Giving her bouncy seat a test drive



So thankful for a three generation photo!









Today, Clara slept for a long time with one eye open.  I don't know why.  I told her it was creepy and tried to close it, but she kept opening it back again....


Some blond fuzz is starting to grow back where all that hair had fallen out....






Prayers:

-          Continued weaning of O2 and flow.
-          Successful weaning of sedatives and painkillers without the wicked side effects of withdrawal.
-          Transition to oral feedings
-          Management of spitting/throwing up
-          Healing of her wounds
-          Protection from secondary infections
-          The physicians and staff caring for her and making decisions about her care. 
-          Penelope and her family – they face surgery for the repair of her diaphragmatic hernia sometime early next week.  Please continue to remember this family when you pray for Clara.

Tonight I am thanking God for mothers and for the love that they have for their children.  It is so deep, so pure, so true.  And as wonderful as that love is, it pales in comparison to how much God loves us.  That’s a pretty powerful reminder this Mother’s Day weekend.  Thanks be to God.

13 comments:

  1. Chrissy, Happy Mother's Day to you.

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  2. Dana QuesinberryMay 8, 2011 at 10:51 PM

    What a wonderful first Mother's Day! I'm so happy for you, and Clara is lucky she has such a great mom! Continuing to pray for you all!

    (If it makes you feel any better, Kord occasionally sleeps with one eye open, or sometimes even both eyes slit open. I also think it's creepy. I don't, however, think I've ever thought to try to close it! LOL)

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  3. Happy 1st Mother's Day to you, Chrissy. I know it was extra special for you! Continuing to pray for Miss Clara.
    Connie

    P.S. Please tell Penelope's family we are praying for her too.

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  4. Brian says Clara is keeping one eye open to make sure no nurse sneaks up on her while she's sleeping and tries to start another IV! ;-)

    You are a wonderful advocate for your daughter. And you are absolutely right -- you know that girl in a way nobody else does -- so it is good to trust yourself on your intuitions and observations.

    Happy Mother's Day from us both.

    Melissa & Brian

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  5. So glad to see and hear that baby Clara is doing so much better. I have been following her for a while but, this is my first posting. She is beautiful and seeing pictures of her, make it so easy to pray for her. She is one tough cookie. Ya'll are going to be wonderful parents, and keep trusting your instincts, they are given to you by GOD when you become a parent !!

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  6. What a beautiful gift for Mother's Day! Prayers and Praise continue for you all. She is amazing. Such an inspiration to all those touched by your story!

    Much Love,
    Nicole Jones

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  7. I am so happy to see you had a wonderful Mothers Day. Those happy pictures warm my heart. Clara is soooo cute and I love the sign over her bed that spells out her name. We will continue to pay that Clara will go home soon.
    Love,
    Annette and Randy

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  8. What a happy Mother's Day for you all! Take as much time away as you need away from blogging! You have so much to do with Clara now that you can be her caregiver! I agree you have a wonderful mom. So sweet of you to say all those nice things about her. She was my friend at Salem, and I've kept up with you all throughout the years. I suggested your blog to my daughter who is a PT, and she finally connected that you are Chrissy from the Christmas cards! She is a fan of Clara now, too.

    Take care!
    Beth

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  9. Happy Mother's Day! I've been following Clara's blog for quite a while and am thrilled that she is doing so great!

    My CDH baby was not on ECMO and was only in the hospital for 3 weeks, not nearly the journey that Clara has had!). But we did have breastfeeding issues in the beginning. She was very tiny and weak and just not able to nurse effectively -- it wore her out and she burned too many calories trying. Plus the nurses would rather her drink from a bottle so that they could measure how much she was drinking.

    So she came home from the hospital at 3 weeks on oxygen and drinking from a bottle. Finally at 8 weeks old she was strong enough to be able to breastfeed, and we were able to ditch the pump/bottles.

    I relaxed a lot about her feedings after that and just nursed her on demand and didn't worry about measuring/timing how much she was taking in. She gained weight pretty well and breastfed for a year. She really enjoyed nursing once she got the hang of it, and I think it helped her reflux because she didn't swallow as much air as she did from the bottle.

    I bet in time Clara will be able to breastfeed too. And things will be so much easier once you get home -- you can relax and have privacy and you and her can practice a lot and figure it out together.

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  10. No wonder she is sleeping with one eye open ... she does not want to miss any part of her wonderful family visits. Please enjoy them, too, and don't worry about daily blogs. We will NOT stop praying and will look forward to check-in times every now and then. You are all loved and wished so much happiness .... wow, what a family!!!!

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  11. Happy Mothers day!!

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  12. Happy 1st mother's Day! So glad to see you had a smooth day and Clara did too! God is Faithful. Prayerfully yours, Jenny H

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  13. Happy mothers day!!! so glad you had a great one! Clara is so beautiful and she just gets prettier. we continue to keep you in our prayers! love always, xoxoxoxo the welsh family

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