May 14, 2011

Readjusting (Again)

I have written several times on this blog about how we have had to readjust expectations throughout this process.  Realized or not, we carry expectations about becoming parents and what we think our children will be like.  Even when we knew that Clara would be sick and face some difficult times, we still didn't really expect to be on ECMO, didn't expect to have doctors tell us she would die, didn't expect to be in the hospital quite as long as we have been.  We continue to remain so very very grateful that we are where we are now and not where we were five or six weeks ago.  But I'm still having to adjust my expectations - of myself, of Clara, of the doctors, of timing in general.  As you've no doubt read by now, we had a little reality check this week about Clara's homecoming.  Tuesday's morphine withdrawal was more significant to the doctors I think than I even realized at the time.  We have to be very very slow with this weaning process because a bad withdrawal fit could trigger a pulmonary hypertension episode which would cause a big backslide and well, we don't want that.  So we've slowed the sedative/painkiller wean pretty significantly and are in general taking things very slowly.   I recognize that this is good for Clara and we want what is best for her, but the slower pace has been a challenge for this very driven mama.  Dr. Yang is very intentional about not doing too many things on any given day so that if there is a problem we can hopefully identify the cause of it.  This makes sense and is good, but day to day I sometimes struggle with feeling like we're not making much progress.  I know it's not true.  We are making progress.  It's just a lot slower.

I feel such a strong urge to bring her home now.  I think in part because she looks so good and seems so healthy and stable in a lot of ways, I just feel like I could walk out of the hospital with her in my arms on any given day.  I remember a few short weeks ago when I wanted so desperately to hold her and now I feel that same strong desire to have her in our home with us.  I am also struggling with feeling a little guilty/greedy about wanting her home.  I remember clearly saying six weeks ago that if we just knew that she would live I could face anything.  We know now that she'll live and so I get frustrated with my own impatience about having her at home.

But I'm less anxious and sad and disappointed today than I was even on Wednesday.  It's just taken me a couple of days to let go of the totally random and arbitrary "June 1" deadline I had created in my head and to try to readjust my expectations once again that we'll probably be in the hospital for at least another month.  I'm tired of being there.  I'm tired of spending all day in a dark beeping room.  I'm tired of not having privacy.  I'm tired of going to a separate room to pump every three hours.  I'm tired of eating out and eating in the hospital.  I'm tired of it all.  But I'm also still so so thankful that we're in this wonderful place with this incredible staff and wise physicians and patient and loving people.  I'm thankful that we're not as critical and that we really only have three issues left to resolve (oxygen, sedative wean, feeding).  I'm thankful that I have the support of a wonderful family and a generous community of friends and strangers who are surprising us and sustaining us through every minute of this.  I'm thankful that I get to spend hours with Clara in my arms and that she loves it there.  I'm thankful for so much and am trying to constantly remind myself of all of that in the midst of feeling eager and impatient about the next step. 

Today we further condensed Clara's feeds.  Now, instead of getting a continuous 25ml/hour she gets 75ml over two hours and then has one hour off before we resume feeds again.  This is a slow process too, but a very important step towards being on "bolus feeds" and eating all at once like a typical baby.  She hasn't spit up as much recently, so we're thankful for that and hoping that she will continue to tolerate the condensing.  We also stopped her sodium, with hopes that her levels will be better on her next labs (the sodium is likely a contributor to spit up/vomiting).  Her flow is now down to 1.25 liters and she's still on around 30% oxygen.  We weaned her morphine today and will continue weaning it every other day, as tolerated.  We also switched her versed to ativan earlier this week.  Those drugs are in the same family, but ativan is slower acting so she only gets it three times a day, as compared to the six times a day she was getting versed.  We continue to work on her OT and PT and also got a Speech Therapy consult this week (We're teaching Clara to talk!  Not really.  Speech in infants is more mouth/eating stuff).  Her incision site and pressure sore continue to heal well.  So, see?  When I write it all out it does seem like we're making progress!

Here are some photos from today.  Winston-Salem just got a brand new Carters store.  So, so dangerous.  Be on the lookout for some super cute outfits coming up...

Daddy Snuggles:

 Mommy Snuggles:

And just so you know, as cute as this thing is, she can still cry and be fussy:

But Sweet Mama makes it better:

Thank you for your faithful prayers as we continue on this journey.  Whatever the pace, we'll get there eventually.  And we're learning a lot along the way...


  1. it's a wonderful thing to have dreams and goals... and while i cannot even fathom your eagerness, i think part of your goals and hopes for sweet Clara make the achievement all the more sweet...
    holding her for the first time...beyond amazing... and just think how surreal and wonderful it will be for her to make her first trip smell the love of her house...and to sleep in her crib without beeps and hospital-ness... :) it will be incredibly sweet and wonderful... but without the yearning, it wouldn't be as beautiful or special or incredible... keep up the faith... :)

  2. Proverbs 16:9 "In his heart a man plans his course, but the Lord determines his steps."

    There is absolutely nothing impatient about wanting your precious baby home. The progress she has made gives you this beautiful impatience. After all, you are human, you do desire to walk her through those doors for the first time, hear her cries in the stillness of her loving home, take pictures of her in her own room, crib, living room. Whatever your desires and frustrations are, they are symbolic of the wonderful parents you are. You want your baby home, your family intact. What a beautiful thing to desire. What a normal thing, so attainable at this point. You WILL bring her home. She will live. Her beauty, smiles, dirty diapers and hissy fits will be the most precious things to you all. To eat dinner at home or to sleep and have it interrupted by a crying baby~~such a sweet, normal thing and it is slowly approaching. So, it is this frustrating waiting, weaning that must continue. You have high expectations? Awesome! This is a fabulous trait in any Mommy. She will know this someday Chrissy and Robert, and she will make you proud. Look how far she has come, the fight she has made, and she doesn't even realize it. This beautiful battle for life you have seen her through is a true ststement about who your daughter will be. About who you are as parents; driven, patient and loving.

    So it makes me smile from the outside looking in that you are here, wanting such normal things. Not waiting for surgery, weaning of ECMO flow, extubation. You want your baby home. And so it shall be.

    I often told parents when I worked in the PICU that they were learning patience earlier than some parents and that the baby steps were just that~BABY steps.

    Just imagine it, and I know you have. Before long you will have her all to yourselves. In your beautiful, loving home. Her home. Keep those high expectations and internal deadlines. They keep pushing and driving you as a woman and mother. I am sure your own parents have memories of that same quality evolving very early in you. And sweet Clara has clearly not fallen far from that tree.

    We love you, praise with you and pray for you daily, sometimes hourly. Love, love the pictures. Presley is in love with her. We are proud of you all.

    Divine Intervention is a beautiful thing!
    Love to you all,
    Nicole Jones

  3. You have all come on such a journey of epic proportion, you have learned so much, you have struggled so much, and sometimes the "slower" part can be the hardest part! Clara has a beautiful life ahead with you and Robert, and all the family. This part of the journey is different, so the same survivor skills are different. Maybe like it isn't straight up hill, anymore, the journey/road is flatter, but you still can't quite see the destination. I continue to pray for you all!!

  4. Progress is progress, even if it seems slow. Hang in there. Becky Pratt Ball

  5. You are in our prayers and thoughts daily. She will get there!
    Katie Davis

  6. Oh, and Owen digs the "albert looking" yellow duck lovey. Good choice, Clara!
    katie Davis

  7. Just wanted to let you know that we continue to hold each of you in our thoughts and prayers. My girls have figured out where your site is on my "favorites" and are enjoying checking on Clara's progress all by themselves. I am so amazed by how much she has grown and how very wonderful she looks. I can certainly see how it would feel like you could just scoop her up and walk right out the door. As you know, Grace spent about 10 weeks in ICU during her transplant. Every Sunday, an announcment would be made, over loudspeaker, that if anyone wanted to buy a local Sunday paper, they were available at the nurse's station. Every week, we would think, "I sure hope that I won't hear that announcment next week. Surely we will be gone by then." It was quite discouraging to be sitting in that same room the next week. The day of discharge is going to be such a happy day! On the transplant unit, they appropriately have the staff line the halls and throw confetti, while the child passes down the hall, much like a parade. When we got home, I remember thinking, "Now what do we do?" The first night, we put the kids to bed and watched Law and Order. It was so wonderful to have everyone under the same roof. When that sweet girl gets home, it will be like Christmas everyday to go see her safe and sound in her little crib. Hang in there and, as fortunate as we are to have such a great hospital near by, just keep thinking about how great it is going to look in your rear view mirror when you drive away with Miss Clara!
    We love you!
    The Cains

  8. Such a cutie patootie!!! Love the outfits and socks!!!! Chrissy, from one mom to another, you need to take a break, get out one morning and do something just for you! Mani/Pedi, shopping, reading a book, lunch with a good friend......take your pick. And don't say, "oh no I couldn't leave Clara" because Clara will be just fine, and you mom, will feel a little less pressure once you've gotten away from the "hospital thing" and rested your brain. Just take a couple of hours for yourself and Clara will appreciate the new and energized mommy that walks back in her room and reigns kisses on her sweet little head and snuggles up so close. Continuing to pray for Clara.

  9. Ditto to the above message. Take some time just for YOU, and some date nights, too! You and Robert deserve some hospital escapes. GOD and the super hospital staff will look after Clara Mae. You will have her home before too much longer .... rest assured of this and just deep breathe! Your prayer warriors will make sure you continue to be supplied with great strength.

  10. Crissy, not only are you learning so much, but you are teaching us all more than you could ever know. God has given us all the wonderful gift of Clara and you are sharing her with all of us. Thank you for the daily reminders of God's many blessings. May he continue to uphold you all.

  11. I have to agree with a morning out or a date night, you need a break, we all do, at times. It gives you a new outlook. Things will fall into place when they're suppose to. Take a deep breath and take care of yourselves too.

  12. Chrissy you are a trooper and so are Robert and Clara! Good Luck in the days to come and many blessings and prayers from the welsh fam!

  13. Hi! I have been reading your blog since March and I must say Clara's progress has been a true miracle. I am continually amazed at the work God has begun in your sweet daughter and the work He will continue to do with her life. Wow. I can't imagine how frustrating and trying these times must be for your family but you are truly an inspiration for parents and a obviously a pillar of strength for your family. I pray daily for you and your husband and of course for precious Clara Mae. You are in a fabulous hospital with Doctors and nurses who want to see her go home and have a wonderful life. Trust in God's perfect timing. "The Lord your God is in your midst, He is a mighty one who will save; He will rejoice over you with gladness and will quiet you by his love. He will rejoice over you with singing". -Zephaniah 3:17

  14. I can only imagine how much you want her to go home with you and I would too. You just want to get back to a normal way of living. Waiting is never easy. We are still praying for you all.
    Randy and Annette

  15. Gosh she's so cute! Love you guys.

  16. Our sweet Clara has the most perfect lips and long fingers and is sooo beautiful. I love seeing all her cute outfits and those sock/shoes are just the cutest!! I can't wait to take her shopping for real ones (to continue Mary Frances's tradition!!) I look forward to getting to see her in person SOON!! We continue to pray for you all and hope you are taking care of yourselves! Love to all!


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