June 3, 2011

Rewind, Re-boot

Well, we pushed Miss Clara as hard as we could for her to catch on to eating orally all by herself and she gave it a valiant effort.  But after four days of working so hard to learn how to take meds orally, practice nursing, work on bottlefeeding with several different bottles, use the supplemental nursing feeder, try different caloric supplements to my milk, and adjust to her new life without morphine, poor little Clara was just pooped.  The feeding every two hours schedule yesterday really wore her out and she started to get a little lethargic.  I could tell last night before we "went to bed" (which I use loosely, of course) that she just wasn't quite ready yet.

She had a bit of a rough night.  Her 2AM feeding we tried to use a bottle and gave her some breast milk with extra calories and as I've stated before, she is truly a purist.  She wants mama's milk only and she wants it direct from the source.  She threw up that whole feeding.  By her 5AM feeding she was so hungry that she latched on (with this new size nipple shield she has really improved and changed her latch to be so much more effective) like she never has before and sucked, swallowed and coordinated beautifully.  It took four days, but at 5AM today, she finally really figured out how to nurse correctly.  She took about 80cc from me in about 20 minutes and despite our great efforts to encourage burps and prevent spit up, I think it was just too much too fast and she promptly threw it all up too.  Plus, she was down about 150 grams for the past 24 hours.  The weight loss was too much and some early signs of dehydration were starting to creep up.  It was time for Plan B.

Fortunately for us, one of our very most favorite attendings ever took over service today.  Dr. Block came in and talked with us and helped develop a new plan for Clara.  The NG tube is back in for now.  She's been getting continuous feeds all day today which we have slowly increased to 25cc/hr.  She had several pretty big vomits this morning, but that seems to be under control for now.  She will continue to get these continuous feeds overnight and we'll stop them at 7AM tomorrow.  Then, I will nurse her at 9AM, 12PM, 3PM and 6PM.  At 7PM we will start the continuous feeds again at 30cc/hr for 12 hours.  At 7AM those will stop and we'll repeat the cycle.  We're trying this over the weekend, hoping that she will rehydrate, gain weight, and most of all tolerate the increased volume. The vomits have us concerned that reflux is rearing its ugly head, so we are very prayerful that we will be able to keep this quantity in her so that she will have the calories and nutrition that she needs to grow.  On Monday, we'll re-evaluate how things have gone over the weekend and see where we should go from here.

I mentioned yesterday that we would consider a G-Tube if this didn't work.  We're still open to the possibility of this, if it becomes necessary, but are very hopeful that we can avoid it.  Clara has made great progress and continues to show promise.  We've been encouraged and affirmed by many people that they still think that she can do this.  It may take a little longer than we thought and we may have to move a bit more slowly.  But our goal is still to go home without any tubes, even if that means a little longer stay in the hospital.  Because of her history, she's at a higher risk for this surgery and we do not want to put her through it (reintubation, anesthesia, etc.) unless it is absolutely necessary.  If the weekend goes well, we'll stick with this plan for a few more days and then slowly begin condensing those nighttime feeds and then replacing them with breastfeeding until she's off the NG tube.

This is a little bit of a setback, for sure, but we've learned some important things during the past week. Clara does not like any supplements or formula additives.  She nurses best when she's hungry and rested (duh).  She has improved her latch and is getting more milk than she was a couple of days ago.  She can take her meds orally!  She tires out if we nurse longer than about 20-30 minutes.  She prefers life without a tube in her nose.  Most of all, she likes breastfeeding and is getting better at it every day.  We are not giving up hope.  I am still (reluctantly) learning patience. 

We were so excited a few days ago when we thought we might get discharged today.  Clara wasn't ready though.  As much as we want her at home, we want for her to be healthy and strong and ready to be there herself.  Today was spent kind of rewinding, rebooting, and getting ready to continue jogging through, not sprinting, this last leg of the marathon.  We could easily be here another month, either mastering these eating skills or if it does not go well and we still have to go the G-tube route it will take several weeks to recover from that surgery and be ready to go home using that system for feeding.  Again, I remain hopeful and optimistic for the former.  Clara has surprised us all over and over again with how smart she is, how strong she is and how resilient she is.  Let's pray that she'll do it again.  We are ready and willing to wait for her timing and most importantly, God's timing.

As you continue praying for us and this issue, please pray that Clara can tolerate these feeds at this rate/volume.  Pray that she will rehydrate tonight and that we'll see the return of some good wet and poopy diapers that have been absent today (once again, praying for pee!).  Pray that she will nurse well during the daytime 12 hours and get enough milk from me to sustain her and help her grow.  Pray that she will rest well at night while she receives continuous feeds so she is ready to work hard the next day.  Pray especially that she will overcome reflux and that she will not vomit her milk she needs to grow.  We really really do not want to face reflux surgery.  Pray for our stamina and endurance as we wait patiently for Clara to show us when she is ready to come home and that we will not push her too hard to get there too fast. 

We thank you all for the way that you have been moved and touched by Penelope's life and that you have prayed as faithfully for the Spencers as you have for us.  Continue to remember them as they walk the difficult path of grieving.  We cannot know the pain that they are feeling, but our hearts do ache for them.  In the midst of small hurdles for Clara, we are constantly reminded of how grateful we are to have her in our lives and to know that we will someday bring her home.  We are constantly grateful for that blessing.  We hurt so much for Samantha and DJ.  I am not comfortable sharing her email address on the blog, but if you email one of us we will pass it along to you.  She also sends this message:

"In lieu of flowers, please make a donation to: CHERUBS, 3650 Rogers Rd. #290, Wake Forest NC 27587. Seriously. The cats will just eat the flowers anyway." 

Much love to all of you.  Thanks for fighting this fight alongside us.  Ready, set, rewind, reboot, here we go again.  Come on, Clara!  Show us what you've got, girl!


  1. Alright Clara Mae Hardy...listen up! Put on your boxing gloves and fight like a girl!!!!! You have shown us over and over that you are one heck of a fighter and have pushed through every obstacle that has been in your way! We are all rooting for you to break through this last hurdle and GET YOURSELF HOME!!!!!!! We love you and are praying hard.

  2. Many prayers -- prayers for eating, peeing, and pooping!!! And, prayers for grieving parents who will hopefully find comfort knowing that prayers of comfort and love are being offered up for them.

  3. Please do what you need to do to help her gain weight (feeding tubes, etc.), but don't give up hope on breastfeeding eventually. She is getting stronger every day and in another month or two I bet she'll be nursing like a champ. You are a very good mama and seem to be very in tune with what she needs and what works best for her. Go Clara!

  4. You two are WONDERFUL parents! Clara is such a fighter, and she will fight through this last battle! and WIN! Praying for you all!
    Mary Catharine

  5. You are doing awesome Chrissy! I'm praying for peace, patience, strength for you and Robert and for Clara's body to continue to grow and heal and develop what she needs to go home very very soon! We love you guys.

  6. Breastfeeding remains one of the hardest things I've ever done. It's "supposed" to be such a natural thing, but it can be incredibly difficult and frustrating for mom and baby alike. Hang in there! The lactation nurses are wonderful (you know this already) and can be such good advisors. You all and Clara have conquered so much already, and you will figure this out as well. Rest . . . eat . . .love on one another . . . claim joy . . . and know that your cheering section is hard at work. Peace to you all.

  7. You are doing such a good job, and you are so in tune with your daughter. Experimenting to find the right solution is not easy and there are no magic answers. Just like the time you were in PICU seems farther away these days, you will be able to look back on this some day too. In the meantime, may peace hold you. Love and prayers, Melissa

  8. God's timing...your post echos my prayer...healthy ~ get home and stay home...Clara WILL do this! She has the WILL...God's hand is upon her! We WILL continue praying for her, her doctors/nurses, and you!! Love,

  9. Singing an old beach song this morning for Clara .."Give Me Just A Little More Time"! Think that is what she is singing, too :-). Time, patience and lots of love. Hold tight, everything is going to be just right!

  10. We are praying everyday for Clara. You are truly being used by the Lord... even in every trial!
    Also, I would encourage you to revisit the milk allergy! My oldest threw up everything until we realized he was and is allergic to milk! At 21 he still gets very sick from milk even the smallest amount!!! Praying for you

  11. Though your family is having to rethink and reboot remember God is all in this as He has been the whole way through. We continue to be in prayer for your rest, peace, and health.

  12. We praying for Penelope and her parents and family and know that there are so words that will comfort them at this time.
    We pray for Clara's strength to eat well and not throw it up. She is such a strong little girl. We pray for rest for Robert and you because I can not imagine how tired you must be at times.
    Annette and Randy

  13. I am so saddened by the passing of little Penelope, it just breaks my heart. Continuing to pray for Miss Clara. Everything is in GODS hands. She needs to build her strength back up and then watch her go. Stay strong!

  14. Go Clara.....I saw your post about her weight today....I just knew that plan would work yesterday.....


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