Welcome Home, Clara!

 

The full story to come later.  But we are home and so deeply grateful for each of the steps that has brought us here.  Prayers for a good first night all together in our home.  And thanks be to God for the many abundant blessings in our lives and for the precious gift of Clara.

The Faces of Clara

 For those of you who have read patiently but been wondering where all the photos are, I am finally catching up.  A quick medical update and then on to the faces of Clara.  Our new plan (nurse during the day, feeding tube at night) seems to be working pretty well.  Weight is tricky because it'll be up one day and down the next, so it's important to look at 2, 3,4 days or more at a time instead of day to day.  But since our singular goal right now is feed and gain, it's hard to not feel disappointed when that morning phone call reveals a loss.  I'm especially taking it (probably too) personally because I feel like it's my job to make her eat and gain weight.  When she doesn't, I feel like I've somehow failed.  She gained 150 grams on Friday (probably rehydration from the 150 grams lost the day before), lost 30ish on Saturday, gained 67 on Sunday, lost 24 Monday.  So, we're overall in the black, but would love to see even more steady gain.  We've (re)-condensed her nighttime feeds so she receives 90cc (3 ounces) over 45 minutes every three hours.  IF she keeps gaining, the tentative plan right now is to discharge on Friday.  We'll be going home with that NG tube down her nose and we'll be giving her those 3 ounce bolus feeds through the tube during the night while she rests.  Hopefully we can replace those feeds gradually and slowly with breast and/or bottle feedings until we are done with the tube.  It was a really tough decision for Robert and me about the tube.  We had to decide between this NG tube that has some risks and the G-tube which meant surgery.  There are pros and cons to both and I think it was one of our first big lessons in parenthood - trying to make a decision in the best interest of your child when you're not really sure of the future or what the best thing is.  In my gut, I believe that she won't need the tube for very long; she's eating great during the day.  So, we're going with the less intrusive, but slightly riskier NG tube and praying that she won't have any complications like pulling the tube and aspirating.  Having the bolus feeds instead of continuous means that we'll wake up and watch the feed go in her to be sure that she doesn't have any problems.  We are so hopeful it just won't last long.  If it starts to look like it will be months instead of weeks, we'll probably come back and do the G-tube surgery. 

So, these photos have a few from last week when she was totally tube free and we can't wait for that day to return!  The rest are more recent since her tube has come back in this week.  Please continue to pray that Clara will gain weight.  We're going to give one more go at the bottle tomorrow and if by chance she guzzles it down, we could try bottle feeding at night and still potentially go home tube free.  It's a long shot, but we know Someone who is in the business of long shots. 

Okay, Clara's ready to eat!  Off I go.  Here are some photos.  Enjoy, and please keep praying.  Hopefully we'll have some in her "natural habitat" in the next few days. 

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!

Penelope

We've just found out that Penelope, the little girl that shares Clara's birth defect, was not able to make it off the ECMO pump. Samantha and D.J. are somewhere in the process of letting her go. Please join us in praying for them as they go through the hardest thing I can imagine.

There are so many questions I have about this, but they are questions that I doubt will ever be answered on this side of life. No one deserves this. Our hearts are breaking for them. And we try to keep counting our many, many blessings, even though we do so with mixed feelings in the face of such tragedy.

May God grant Samantha and D.J. peace.

Oh, Boobies

About 90% of my day now revolves around boobies.  My oh my.  Here's more than you probably want to know!

Clara has been nursing well for the past couple of weeks using a nipple shield.  It helps her latch on and she sucks great.  Yesterday, the lactation consultant came and watched her nurse again.  We discovered that while she appears to be nursing really well, she's not actually getting a lot of milk.  This is clearly not due to my supply which is out of control, so it has something to do with the way that she is sucking and swallowing.  She's a smart baby.  She's trying to protect her airway and not choke or aspirate.  She's had a lot of trauma to her neck and throat during her life and she's just being very careful and cautious.  That's probably why she likes the breast so much, but doesn't have any interest in the bottle.  She is able to control the breast better.  So even though she's been seeming to nurse well for the past couple of weeks, she's not getting as much as we thought.  She's careful how she sucks to not get too much milk.  Because I've got such a big supply, she's still getting a good bit - enough to stay hydrated and healthy and happy, but not enough to gain weight and thrive.  Today, we have made a few adjustments. We are trying to nurse for shorter periods of time (20 minutes or so), but more often (every two hours).  We've gotten a different size nipple shield to change the way that she latches on.  And we've added this bizarre contraption called a supplemental nursing feeder.  I put hindmilk that I've pumped into the feeder and we supplement it with milk fortifier and lipids (fats) to give it more calories.  Then, as she's nursing, she's also getting this extra milk.  Sounds like a lot of trouble, doesn't it?  It is.

Since Clara still lost weight last night  (down about 35 grams) they were going to put the NG tube back in today and resume her tube feedings.  I asked at rounds for one more 24 hour extension (I made it through college never once asking for an extension, but I've gotten three this week) to see how she will do with these adjustments.  Honestly, I think it's unlikely that she will gain the weight we need to see, but I want to be sure that we've done everything we can before putting a tube back in.  She is getting better and stronger every day, but may just need more time.  If we do have to put the NG tube back in over the weekend, it will still be just to supplement my breastfeeding.  She might get two ounces from me and then a third ounce through the tube at each feeding.  If we can establish a feeding plan that works, even one with a feeding tube, we'll be able to go home.  After much deliberation and many conversations, Robert and I have decided that if she does require a feeding tube to go home that we will have a G-tube surgically placed in her stomach (instead of the NG tube that goes in her nose).  This is more invasive, but also much safer and more stable.  She will be able to keep it as long as she needs it while she continues to build her energy and confidence with oral feeds.  An NG tube runs a risk of aspiration and is also an intrusion on her throat and airway which we want to keep open and clear. 

There was a time when we thought it would be inevitable that Clara would go home on both oxygen and a feeding tube.  We were very encouraged by her feeding progress and obviously hopeful that we might not have to go home with any tubes at all.  But we are still so thankful that she's breathing well on room air and that she is learning to eat.  If the worst thing that happens is we have to have one more surgery for this G-tube and go home with it for a few weeks or months until she learns and gets stronger, that is not a bad problem to have.

I have some great photos of her smiling the past few days.  She's very happy to be tube-free, too.  But I'll have to upload them later.  I'm just squeezing in this update between feedings.  Nursing every two hours is nearly around the clock (nursing - 25 minutes, burping -10, pumping- 15, one hour off and do it again!).   I'm so thankful that Clara is such a sweet, happy, good natured baby and that she fusses very little.  We're both trying to rest some in that one hour off.

Thank you so much for your continued prayers.  I was so frustrated and disappointed yesterday morning, but feel a peace today about where we're going.  I'm still hopeful that maybe Clara will gain some weight today, but if she doesn't, I'm also okay with the alternative plan.  We just want what is best for her.  We appreciate you praying us through this last step towards home.  I think we'll be there in the next week or so, one way or another.

Prayers and Praise for Penelope

If you've been following the blog for the past few weeks, you are familiar with Clara's NICU neighbor, Penelope, who also suffers from CDH and has been having a very complicated ordeal on ECMO as well. Penelope's mom, Samantha, has been posting updates on her progress, and the next day or two are going to be very important in determining her outcome.

Just like Clara, Penelope's biggest barrier to getting off ECMO has been her fluid retention, but Samantha says that they have made some big strides with pulling off fluid in recent days and that her lungs are as dry and open as they have ever been, so they are going to be capping off her oxygen from the pump today to see how she can do without ECMO support.

Please pray for this to go well and for Penelope to succeed! As you all know from watching Clara, ECMO is certainly life-saving, but the longer a baby is on it, the scarier the complications become. Penelope has already been on ECMO for a week longer than Clara was, and she's had some severe circulatory problems and is at risk of losing several toes (pray for this issue too!). But our hope and prayer is that she's turning the corner now and can get off the pump and start the road to the same recovery that Clara is making now.

Pray also for Penelope's parents, Samantha and D.J. We know well enough how tough the road is that they are on, but we at least had the benefit of living locally and being able to sleep in our own beds every night and being surrounded by our support system of family, friends, church, etc. They live over an hour away, and I cannot imagine how much more complicated and stressful this has been for them.

So as you pray for Clara's final steps with her feeding and weight gain so that we can bring her home (we want this SOOO BADLY!), please pray even harder for Penelope, Samantha, and D.J. as they endure this "make or break" time. We serve a loving and powerful God, who has already shown us that he listens to our prayers and that he still performs miracles!

-robert

Gain, Baby, Gain

Well, unfortunately Clara did not gain the weight we had hoped last night.  She was down another 44 grams.  I must be honest; I'm disappointed and frustrated.  She's been eating really well.  She's resting well in between feeds.  She's spitting up much less.  She seems happier and peaceful and more alert than she ever has before.  She looks great. I really thought she was going to have the weight gain we needed to see.  But she didn't.  And so of course the doctors were not happy.  I understand completely their need to see steady weight gain before discharge, but I also feel confident that if we were just at home, in our own environment (and with time) that she is going to gain weight and be okay.  Alas, we are not at home, so we must deal with what we've got here.

The good news is that we have (perhaps temporarily) removed her NG tube.  It's a huge battle to force Sedanafil (her pulmonary hypertension drug) down her throat four times a day.  But for the first time, Clara is completely free of all tubes.    She had another echo yesterday.  As has been the case the past several echoes, they were unable to measure pulmonary pressures.  However, everything else about the heart looked good.  We're waiting to hear from cardiology about whether the Sedenafil can be adjusted (hopefully reduced!).  We're finished with the morphine as of today as well!  So all that's left is for Clara to eat eat eat and gain gain gain. 

Dr. Yang was not on today, but the attending who is on said she was willing to give her one more day.  She's got another 24 hours to gain weight and prove that she's doing okay.  I feel responsible for this issue.  I know that it's not my fault, but feeding her is my job and it's hard to not take it personally and feel like a failure when she's not gaining.  Dr. Petty (the surgeon) came by this morning and his daily analogy was: "This is problem Z.  You've gotten through problems A-Y.  This is the very last one."  Maybe that's what makes it the hardest.  Yesterday they were talking about a possible discharge at the end of the week.  Today they were talking about putting tubes back in and going back to square one with feeds.  I hope and pray that will not happen.  I don't want to go back to Y or V or U....

Your prayers, and the grace of God, have solved problems A through Y for us.  I'm asking now, selfishly and desperately, for big prayers again.  If you have prayed for Clara through any part of this journey, or you know someone who has, please be on your knees for us this next 24 hours.  Those of you who have emailed this blog to friends or posted it on your Facebook or Twitter, please do so one more time.  Ask that everyone pray that Clara eats heartily and that she will demonstrate her growth objectively with the numbers on the scale that the doctors need to see.  Please pray that Clara will gain weight.  Gain, baby, gain. 

Here is some inspiration.  A face totally free of tubes that we want to stay that way.



And here are a few more shots of her in our new home while we "room in" together. 

Milk coma

Milk coma closeup, complete with milk mouth

bed snuggles

Bed snuggles

 Thank you for your prayers.  We have experienced so many miracles.  We hand this over to God and ask for, wait for and expect another miracle tonight.  May God be glorified.