April 20, 2011

Settling In

First of all, I want to thank the many of you who have expressed your love and support for my meltdown yesterday.  Although I know that it's normal, expected and healthy, that doesn't mean it's easy.  So I'm grateful for the many messages of love and caring concern you showered on me the past twenty-four hours.  You are such a blessing to me.

Today was much better.  Isn't the gift of a fresh new start each day one of the greatest things God does for us?  I love how sleep (and maybe the wine + advil + cake too) is like hitting a reset button and that with each new day we are given another opportunity to praise God for the things He's doing in our lives.  

Because of the Lord’s great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.
 I say to myself, “The Lord is my portion; therefore I will wait for him.”
Lamentations 2:22-24

I feel like I'm starting to settle in to the NICU already.  I got there just in time for rounds this morning and I cannot stress enough how confident I feel about the team of physicians who are caring for Clara.  They are really wanting to get her better and encourage her to continue making good progress.  Although there are several changes being made as a part of this transition and I'm having to stay on my toes to keep up with it all, I think that they are all really good things for Clara and that she is tolerating them very well.  She "self-extubated" last night, meaning she pushed out her tracheal tube and had to be re-intubated with a new one.  Thankfully, that went okay and she seems to be keeping this one in so far.  They've dropped another drug (bye, bye Digoxin) that was supposed to be treating her SVT (heart arrhythmia) that we suspect was caused by her ECMO cannula placement.  We've weaned her Nitric Oxide from 20ppm to 15ppm with plans to continue weaning it further.  She's still getting Lasix (now four times a day) and peeing like a champ and we've also added another diuretic (Diamox) that will help her diurese and specifically help lower her bi-carbs which have been a little high from coming off ECMO.  Her blood pressure continues to tolerate all the diuresis well and we could tell today that she looked smaller than yesterday.  She's down to 6.9kg (15lb, 3oz) so just another 6.5 pounds or so to go! We'll get that small baby back again soon!  She's feeding well (8 ml of breast milk per hour, into her stomach through an OG tube) and they plan to continue increasing that as long as she keeps tolerating it.  We were also able to reduce some vent settings today with plans to continue monitoring her blood gases and keep tweaking things there.  Her O2 is down to 60% and I think they're going to go down to 50% tonight on that.  The pressures on the ventilator are still fairly high, so that will be the next thing to continue lowering.  We've added Sildenafil to treat pulmonary hypertension too, in hopes that we will be able to wean the Milrinone and Flolan some and replace with this oral drug instead (Fun fact: Sildenafil is Viagra.  Yes, our baby is getting Viagra.)  She's still on Versed and Morphine for pain and sedation, although they would like to begin weaning those off too and two antibiotics and Hydrocortizone.  So, it's a long list of drugs and they will (almost) all need to be weaned off over the next few weeks.  However, the doctors all seem pleased with her progress today and with how well she's tolerated the reduced vent settings so far.  Diuresis is still a big goal, but she's working so hard on that - we can't ask much more of her kidneys.  Her chest x-ray seemed unchanged today.  She had an echocardiogram too, but I'm not sure exactly of its results.  It seems that perhaps her pulmonary pressures are about the same, or maybe slightly higher.  I'm hoping we'll consult with the cardiologist tomorrow and find out more about his recommendations for which of the PPHN medications to wean first.    

We remain so thankful for the protection that God has given Clara and us and for the miracle He is continuing as her little body heals.  We know that we still have a long journey ahead of us and many steps to take and obstacles to overcome before she can come home.  We thank you for your continued prayers for all of us as we are constantly trusting God with our lives.  We look around the rest of the NICU at the many other families who are facing similar crises in their own lives and know that we are beyond blessed to have such incredible support and love from so many people.  Most people don't have what we have.  I often think that Clara somehow senses how loved she is and that it is all that love that gives her the motivation to keep working so hard and defying all the odds.

Things to pray for:
- Continued diuresis (I never knew that pee would be at the top of my prayer list)
- Weaning of vent settings and weaning of drugs (appropriately - not too fast or too slow!)
- Her (new) doctors, nurses, respiratory therapists and others who are caring for her and us so well.
- That she will tolerate moving, repositioning, suctioning, diaper changes, weigh ins and other things that have been irritating her and causing her oxygen saturations to drop (and that as this improves we may be holding her in our arms soon...)
- Continued increases in feedings and prayers that it will prepare her well for the eventual transition to oral feeding.
- Protection from infections, complications or other setbacks.
- Strength, energy, and stamina for her family

It's been four weeks since Clara joined us on this earth and we have been so blessed by her time here already.  We're proud of all she's done and how far she has come in the past four weeks and know that there are good things in store for her ahead as well.  Thanks for all your prayers. 
Less swollen, no?

It's a green hairbow, but a different green hairbow...

The tape is gone from her lips with this new fancy ET tube holder.  We love those little lips!

Daddy strokes her head

But I will sing of your strength,
   in the morning I will sing of your love;
for you are my fortress,
   my refuge in times of trouble.
You are my strength, I sing praise to you;
   you, God, are my fortress,
   my God on whom I can rely.
Psalm 59:16-17 


  1. Tee hee... Viagra. Love you guys. Praying continually.

  2. Praying for all of you daily. You're inspiring to me and my family, and I can't wait for you to be able to hold little Clara...there's nothing like it! Julie McAvoy Hover

  3. This morning, I woke up and wasn't feeling very well ~ sinus infection and being almost fifty years old ~ but then I thought about Clara...my heart got happy! I was happy all day. Continuing to pray ~ Love, Mary Ann

  4. Settle in there little one, but don't get too comfortable for soon you will be going HOME!!!!!! Each new day brings you closer to that reality. How happy we ALL will be when you decide that you are ready! Until then, heal and grow strong. You are so very loved!

  5. How wonderful to read about Clara's progress. Chrissy, glad you are feeling better. I think you and Robert have been amazing through all of this. I love seeing pictures of your sweet baby and knowing that she is getting stronger each day. One day I'll read that she is going home to her cute room. Prayers being said and answered night and day.
    We love you,
    Mary Nell and Ned

  6. Glad today was a better day for you Chrissy. I still say you would make a terrific nurse with that report, and it sounds and looks like Clara is getting better. Skin doesn't have that tight/shiny look, her face is looking better too. Look back to see where Clara was a week ago, she has made some great progress and I bet by next week, she will have made more great strides! We continue to pray for ALL of you and rejoice in Clara's progress!

  7. Tell Clara Mae this is our favorite bow yet and that we love her (and you too!)

  8. Nothing sweeter than your own child's face, yet another of God's blessings on a long list of many. So grateful you are rested and restored today. Thnak you, God!

  9. I agree with you and think Clara looks less puffy today. I am so happy that the tape is gone so we can see her little lips too. She's a cutie!

  10. Keep your heads up. I have a year old who was born with one kidney and he had to have surgery at 7 months to make sure it would function properly. It's been hard but you have had an experience that I don't know if I could make it through. You all are in my prayers.

  11. One of the hardest things in the NICU for me was watching other babies, and how much better off they were than mine. I was so jealous of the moms with the babies that looked like normal babies and they could breastfeed then and hold them. Mine was a micropreemie. I did pump bedside sometimes with a screen. I did learn to try to ignore the other people there. They would stare at her size, and that hurt badly, but I would ask for my screen and hide behind it with her and sometimes pump. I tried to be friendly with our neighbors. The worst was when the babies would come for just a few nights and leave. I was so jealous! But I made a few good friends there who I looked forward to seeing every day and that I still talk to. So...get those screens out! Even if you are not pumping at the time! I am praying for you and your strong girl.

  12. Dear Chrissy,
    We are so glad you were able to rest and feel better. So many emotions to go through that only someone who has been in your position understands. Clara is doing so great and we pray for continued forward motion. Can't wait to see pictures of her without any thing in her mouth. THAT will be a GREAT DAY!!!
    Annette and Randy

  13. Well there is nothing that a little wine and cake can't cure!!!! So glad to hear that you got some much needed rest and was able to hit the floor running. Hope today goes as well as yesterday and that your little sweet Clara continues to get further and further away from the cliff so that it becomes a very distant memory! God has been so faithful to all of you and reminds us daily through Clara how precious life is and how important it is to be thankful for all our blessings! My prayer for today is that Clara will continue to amaze all of us who are sharing in your journey! Give her a big kiss from everybody in Elberton and tell her that we can't wait to meet her!!!!!!!!!!

  14. Clara is so gorgeous! She does look less swollen. My family is praying with you for her continued improvement and that you get to hold her soon.

  15. Miss Clara, you pee-pee and we'll pray... What a beautiful baby girl!

  16. I just can't wait to see the pictures of you holding beautiful Clara!! So happy to hear continued good news. Pray on, everyone!

  17. I know Easter will be especially miraculous for you all this year. I am wishing a BIG birthday wish for you, Chrissy!


  18. Sounds like good progress! Way to go Clara!


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