May 31, 2011

Eat, Sleep and Grow

Our night with Clara went great.  She ate well every three hours and slept hard in between those feedings (I actually had to wake her up most of the time to eat).  Her daily weight check at about 1:00AM did show a loss of about 60 grams.  Since that was only about 12 hours after starting the exclusive breast feeding the doctors weren't super upset this morning, but we definitely need to see a gain tonight.  Since she's having to work for all of her food now, she's burning more calories than she was with it coming in the feeding tube.  The plan for today is to try to get Clara to eat a lot, sleep when she's not eating and grow, grow, grow.  If she can gain some weight then I think we'll be saying goodbye to that feeding tube for good.  During rounds this morning there were rumblings and speculations of a potential discharge on Friday.  Not too far off from my June 1 goal, huh? 

We weaned  her morphine again today; it is now down to 0.1mg and just one more wean away from being gone for good.  The surgeons looked at her pressure sore wound and her incision today and said they both looked great and we could stop dressing them.  We've moved her echocardiogram, originally scheduled for Thursday, to today so we can get a check on the pulmonary hypertension and check with the cardiologists about whether we can adjust her sedenafil dosing to a more home-friendly schedule.  These are truly the final baby steps to get us out the door.  It doesn't seem that long ago that we were asking you to pray for rapid weight loss.  While on ECMO, Clara had doubled in size and we wanted that fluid gone so desperately.  The nurses told us then that there would come a day when we wanted so badly to see the numbers on the scale go in the opposite direction.  That day is here.  Please pray for weight gain! We'll keep you posted...

May 30, 2011

Slumber Party

Well, Clara has made it clear to all of us that she is a boob girl.  We've tried lots of different bottles and lots of different nurses, but this girl really just wants to breastfeed.  I have been breastfeeding her during the day while I'm at the hospital before each of her tube feedings (11:00, 2:00, 5:00).  Since they can't be sure exactly how much she's getting from me, we were still giving her the full 82ccs through her feeding tube afterwards.  The past couple days she's been spitting up/throwing up quite a lot and the nurses and I really thought it was just because she was getting too much food.  When we asked Dr. Yang today if we could just skip the tube feedings during the day while I'm at the hospital, she surprised us by saying, "Why don't you just "room in" for the next two nights, breastfeed exclusively and see how she does?"

So, that's exactly what we're doing.  Clara got her last tube feeding at 11:00 this morning and since then we've been just breastfeeding every two to three hours.  There are these great family rooms at the hospital that are typically used for parents to stay with their baby in the room the last night or two before discharge just as a trial run.  We're not that close to discharge yet, but we're using the room to give breastfeeding a shot.  Clara hasn't thrown up since that 11:00 tube feeding and I think is taking around two ounces for each feeding.  Robert and I are delighted to be joining her for a slumber party tonight!  It's the first time all three of us have spent the night together and we're pretty excited.  I'm also a little anxious.  This is a big test to see whether they'll let us go home without mastering bottle feeding yet.  We covet your prayers tonight.   Please pray especially that Clara will eat heartily and gain weight over the next couple of days to prove that this is sustainable.  Pray that she will have plenty of wet and poopy diapers to demonstrate that she's hydrated and getting nutrition.  Pray that Robert and I are able to catch a few winks between feedings ourselves and that our first night together as a family of three, although away from home, will be a success!  This is truly our last hurdle on this journey.  You have faithfully prayed us through each and every step, so we ask now for your fervent prayers one more time.  Eat, Clara, eat!

I'll post some pictures of our newest home tomorrow, but it's dark and quiet in here now and since there's a sweet sleeping baby that I don't want to disturb, I'm going to leave it that way.

Join us in handing over this final step to God.  He has cared for us so well and provided for us so thoroughly throughout this journey.  We are trusting that He will again.  Part of the Lord's prayer is "Give us this day our daily bread."  We're asking now that God provide enough nourishment to Clara to sustain her and allow her to grow!  I don't think He'll mind if I change the words of the Lord's Prayer tonight to say, "Give us this night our nightly breastmilk."

Matthew 4:4 - Jesus answered, “It is written: ‘Man shall not live on bread alone, but on every word that comes from the mouth of God.’  Nor shall we live on breastmilk alone, but on the grace and hope of our Lord and Savior.  Amen.

May 28, 2011

Breaking Free

We had hoped to say goodbye to her nasal cannulas and the little bit of flow she was getting from them yesterday, but a desating "incident" Thursday night meant we had to wait one more day.  

This morning, we finally took them out.  Here's our sweet girl, breathing completely totally and all the way on her own, with no support whatsoever.  How we have prayed for this day!

We are slowly breaking free from the wires, tubes, and cords that are attached to her.  All that is left now is her NG feeding tube and we'll be able to go home...

Isn't it great to see these sweet cheeks with a little less tape?

We took many more photos today, but I'm tired, and so is Clara.  Here's a yawn to prove it.  More to come tomorrow...

May 26, 2011

A special prayer request for Penelope

Penelope's mother just posted an update a little bit ago:

"finally got the hemofilter started ... praying to God that this is the thing that finally helps our baby girl get better. If not, I don't know much else that they can do"

That last sentiment is all too familiar to us. Please pray for Penelope to be another miraculous example of God's goodness and grace. That she too would step back from the cliff and show everyone watching what a wonderful and loving God we serve.

Thank you all for your prayers for this sweet, beautiful little girl!

Cheese is Yummy.

Just a quick update tonight; I failed to take any photos today.  Oops!  Clara is doing well.  Her nurse this morning got her to take about 20ml from the bottle and then she nursed like a champ for me at 11:00 and 2:00, taking 40-50cc each time.  She's getting better and stronger every day.  Tomorrow we expect her nasal cannulas to come off (HOORAH!) and for her to finally be breathing completely on her own.  Incredible.  One of her attendings came by today and said that Clara was doing better than any diaphragmatic hernia baby she had ever seen.  Wow.  That's just remarkable, especially given how very sick she was two months ago.  We're so proud her her and thankful to our God. 

If all my calculations are correct and Clara is able to keep maintaining what we've got going right now, her morphine will be off next Wednesday.  Then the only drug she will be on is sedenafil for her pulmonary hypertension, which she'll go home on.  The only thing left at that point is increasing her oral feeds until they're sustainable and we'll be marching out the doors of Brenner's.  Thank you for continuing to faithfully pray us through these final steps. 

So, why is this post called "Cheese is Yummy," you may ask.  Because cheese is very very yummy.  I've been dairy free for one week now.  Holy cow, I love dairy (pun intended).  Robert and I typically go through a gallon of milk in our house in about four days.  When I look at a menu and pick the five things that sound the most delicious to me, they inevitably all have cheese and/or milk/cream/dairy something.  I really really love my dairy.  And I've never been convinced that the blood in Clara's stool last week was truly from a milk protein allergy.  It was a diagnosis of exclusion (meaning, we don't think it was X, Y, Z, so that  must leave a dairy allergy).  And I'm just not sure.  So, I'm starting dairy again.  Slowly.  The doctor said I could not drink a gallon of milk in three days (but, oh that would be delicious).  We'll see if the blood returns and if not, we'll assume that there was some kind of tear or fissure that we could not see and that Clara loves cheese as much as her mama.  It's totally selfish, but I'd appreciate your prayers with this little trial too.  If Clara is a real Hardy, she'll show us she can handle her milk! (And I will celebrate with a big bowl of ice cream!)

On a much more serious and critical note, Penelope is not doing well.  She is still battling infection and today they have added a hemofilter to her ECMO circuit to try to pull of some of her fluid.  Please continue praying for her and her family.  Our hearts ache for them. 

We can see the light at the end of the tunnel.  Just hanging on a few more weeks.  We're gonna get our girl home soon. 

May 25, 2011

Wordless Wednesday

We changed/retaped her nasal cannulas.  Here's a sneak peak at what we hope to see permanently come Friday.  A cannula free face!

Sweet Mama's shoulder is a good place to fall asleep

And sleep hard...

Nighty, night sweet baby.

All tucked in.

May 24, 2011

Splish, Splash!

Clara had her first real bath today! Here are some pretty stinkin' cute pictures to prove it.

Unsure about what's going on:
She didn't like all of it...

But she came around:
Getting dried off:
Add caption
Sweet, clean-smelling snugglin'.One last bottle attempt for the day. (She didn't love it...)
Not much of a medical update today. We weaned down to 300mL flow on her O2, and we expect to be nasal cannula-free by Friday. Clara tolerated further weaning of her morphine just fine today as well. She's still improving on breastfeeding, but has a long way to go until she's able to support herself without the NG tube. She also needs to figure out the bottle; so far, she's not so into it.

Please continue to pray for her morphine wean and feeding; they are the two things still standing between us and home.

More pressingly: PLEASE continue to pray for little Penelope, the other CDH baby at Brenner who is on ECMO currently. She needs to make some good forward strides towards getting off of ECMO soon. Many of you remember this delicate dance of fluid and lung volume that Clara went through; pray now that Penelope's dance will lead her to where Clara is now!

Thank you all for your continuing prayers and support. We love you all!


May 23, 2011

Over the Hump (this one, at least...)

Thank you, thank you, thank you all for your prayers - specifically for praying that Clara would experience some relief from her morphine withdrawal.  Once again, they have been answered.  She had a much better day today and was back to her happy, calm, easy-going self.  This morning when the nurses reported that she had been very agitated over the weekend, the doctors were immediately concerned about her withdrawal and wanted to give her more ativan (she hadn't had a single dose of Ativan since Thursday morning).  The nurse didn't really seem to think that ativan was the issue or that it would solve anything, but assured the doctors that if Clara woke up and was fussy or seemed at all uncomfortable we would give it to her.  Clara must have heard that conversation in her sleep, and we know how she likes to defy doctors and their expectations, because when she did wake up she was as happy as a clam.  Fortunately, she stayed in a great mood all day long and we didn't have to give her that ativan.  I'm so thankful to have not taken a step backwards again with that.  It was a tough 48 hours of morphine withdrawal, for sure, but we knew that this detox would be difficult and that there might be some hard days.  As long as it doesn't seem to be causing her to have an episode of pulmonary hypertension flare up, we'd just as soon try to push through and get her weaned.  Today, she showed us that she could do that!  Hopefully we're over this big hump of switching her dose from every four hours to every six hours and we can begin weaning it again some more tomorrow.  We did wean her oxygen flow again today, so we're now down to 400cc on it, still at 21%.  She's doing great and I really don't think she needs the oxygen at all any more, but we're taking that slowly just to be sure.  It should be all the way off by the end of the week and I know she'll be glad to have the nasal cannulas out of her nose.  She's been pulling on them, as if to say, "I've had quite enough of these, thank you very much!"

I have to say, this whole experience has certainly taught me a lot about faith and God and certainly about prayer, but it's also kind of leaving me shaking my head a bit.  I'm not sure I ever really had a very good understanding of intercessory prayer and while this whole experience has certainly convinced me of the power of it, it's also turned my personal theology upside down.  I've always taken issue with the idea of prayer being like a magic genie.   I've never really thought that it was as simple as "We ask, God gives."  I mean, sure -that might happen sometimes - but a lot of time we ask and we don't get.  There are plenty of people out there praying for healing right now that may not receive it.  There are lots of people praying for a lot of things and not hearing the answers that they desire, hope, expect, or even deserve.  I've never doubted that God was capable of performing this miracle and I am continually giving him the credit, glory and praise for doing so.  I just wish I understood better "why us?"  Why have we been so fortunate to have our prayers answered time after time after time?  It seems like every time I write on this blog that we are standing in need of prayer with a specific issue, there are thousands of you out there who begin to pray fervently on Clara's behalf.  And without fail, your prayers have been answered.  God continues to shower us with His mercy and grace and is fulfilling all these requests.  It's an incredible thing to be in the middle of and it has really changed the way I understand intercessory prayer.  That is to say - I think I probably understand it even less than I thought I did, but I am sure grateful for the power of group of people diligently asking God and expecting His blessings.  I know it's a miracle to watch Clara getting better and stronger and more alert and healthy each day.  But I'm also just amazed at the miracle of prayer.  I've never experienced anything like this before and it's changing my heart to see how God has heard your cries and pleas and is responding to them time after time.  It is so cliche to say, but I just can't think of any other words and it's ringing truer for me now than I have ever known before: Prayer is powerful.  So so powerful. 

Aside from the relief from morphine withdrawal and the return of our sweet happy baby, today was fairly uneventful.  She's continuing to breastfeed well, but is not getting anywhere near the full amount of her feeds that way, so we're still having to give her tube feedings, too.  She got her first bottle today since we will probably have to have her eating from the bottle before we can go home.  I'll continue working on breastfeeding while we introduce the bottle and after we get home too, but since we can't know for sure how much she's getting from the breast and we can from a bottle, we will need for her to learn how to bottle feed.  (Also, it would be nearly impossible for me to be at the hospital for every feeding, every three hours, around the clock).  She didn't quite seem to know what to think of the bottle today.  It's a little unusual that she's breastfeeding so well, but couldn't take a bottle today; that's backwards from most babies.  But the speech, OT and PT folks didn't seem surprised by it, saying that it's just a totally different feel and experience.  We know that she can latch on, suck and swallow, so hopefully we'll get those skills transferred to the bottle with a little practice.  She's getting 80ml every three hours in her tube right now, so we'll need for her to be able to drink that much orally before we can go home.  We've got a long way to go....

I know I say this every night, but thank you for your prayers.  I hope you know how much they mean to us.  Please continue to pray for successful morphine weaning, shelter from the side effects of withdrawal, and growing success with oral feeds, both bottle and breast.  Of course, as always, pray that she will be protected from infections or other secondary issues that would cause a setback and pray for the physicians and staff who are caring for her.  Day by day, we continue to experience miracles and are thankful tonight especially for the miracle of answered prayers.
Clara's first bottle

"Hmmm.... what do I do with this?"

Eyes of confusion!

P.S.  Happy two month birthday, Clara!  WOW!!

P.P.S. Thank you for the many of you who have asked about Penelope and are continuing to pray for her as well.  She's having a tough time.  She is still on ECMO and is having several complications that Clara did not face such as infection and bleeding.  She had her second circuit change today and we are hoping and praying that will give her the boost she needs to come off the machine and begin her recovery.  Thank you for continuing to pray for her and her family as they are in the thick of this difficult time.

May 22, 2011

Snuggles from Georgia

It’s been a busy weekend in our new home in Intermediate.  Clara seems to have adjusted well to her new home and we’re certainly enjoying a bit more privacy, space and quiet.  On Friday we weaned her morphine dose from every four hours to every six hours.  This was a pretty significant wean for her, but it has worked out well because she now gets morphine with every other feed (since she eats every three hours) which means that I have more opportunities to breastfeed when she is both awake/alert and hungry.  It’s hit or miss with that – sometimes she seems totally uninterested (or too hot, too hungry, too fussy to have the energy and motivation to do it), but sometimes she latches on and nurses really well.  Yesterday she ate for nearly thirty minutes and got between an ounce and half and two ounces.  She promptly threw a good bit of that up – perhaps just too much too fast.  But she is doing well and we’re continuing to practice and hope she keeps getting better and getting the hang of it.   She’s doing fantastic with her oxygen wean.  She’s been at 21% (room air!) for the last few days now and her oxygen saturations have stayed super high at all times, even when she’s irritated or fussy.  She was down to 0.5 liters of flow today with plans to continue weaning by 0.1 liter a day… or possibly even a little faster.  I really don’t think she needs the oxygen or nasal cannulas any more, but we will see what the doctors say tomorrow.   Today she was pulling them out of her nose all day long.  I think she’s telling us she’s had enough.  I’m very encouraged and hopeful that it looks like we may not have to go home on any oxygen.  The biggest concerns for her right now are the morphine wean and her eating.  She has had some fairly significant withdrawal symptoms the past two days from her big wean on Friday, so we didn’t wean her any further today.  Hopefully we can continue weaning tomorrow and she will push through this difficult detoxing process.  She seems to be doing well with eating too and I think we’ll begin to introduce the bottle some this week so that we can really see how much she is eating by mouth.  Please be in prayer for these two specific issues.  They’re all that’s left between us and home at this point! 

The highlight of the weekend was a visit from her Georgia Hardy family.  Mama K, Daddy Bob, Aunt Liz and Uncle Hugh all got to come see her and have their first chances at holding her this weekend.  We are so extremely thankful for such a supportive and loving family.  Clara is so blessed by these wonderful people and we were grateful for their willingness to drive so far to spend some precious moments with her.  Enjoy these photos from the last few days. 
Friday with Sweet Mama

Checking out her Mama K and Daddy Bob

Such love

Please pray for rest for Clara, as the morphine withdrawal has made her quite fussy.  Pray that she will be able to continue weaning this narcotic with fewer side effects.  Pray that she will continue to feed, transition to oral feeds, and reduce her spit up, whether it is from acid reflux or withdrawal.   Pray that she will take the steps she needs to get well so that we can bring her home soon!

We are grateful for your continued prayers.

May 19, 2011

Graduation Day

As many parents have been celebrating or are preparing to celebrate graduations from preschool through college, we celebrated our own graduation of sorts today.  Clara was moved from the Neonatal Intensive Care Unit (NICU) to the Intermediate Nursery.  This is a big promotion and (hopefully) our last stop before home.  Twenty-four hours ago, I was writing about unknown sicknesses, new IVs, stopped feeds and potential scary unknowns ahead.  What can I say?  Clara has an amazing team of prayer warriors and we serve an amazing, gracious and loving God.  We’ve said it before on this journey and we are saying it again tonight: What a difference a day makes.

This morning my dad was getting in his usual early morning visit when my cell phone rang and he was asking if I was on my way yet – Dr. Yang wanted me to breastfeed.  I was shocked since we’d stopped her feeds last night and still didn’t know the source of her bleeding, but of course I quickly gathered my things and headed straight to the hospital.  Clara didn’t nurse great this morning (we are still working on staggering her feeding schedule with her morphine schedule so she’s not too sleepy when it’s time to try to practice eating), but she did better during our other attempts today.  During rounds they made several progressive decisions that I was hopeful for, but honestly not expecting.  Since her labs from yesterday came back negative for infection and her x-ray looked clear, they are assuming that the bleeding is from a milk protein allergy.  It’s a diagnosis of exclusion, so we can’t really be sure, but that’s what we’re going with.  She only had one poopy diaper today, but it was blood-free, so hopefully that issue has been resolved!  They resumed her feeding tube feeds right where we left off yesterday (76ml of my breastmilk - now dairy free - over an hour every three hours) and said that I could try breastfeeding three to four times a day to supplement that.  We reduced her ativan dose from 1.3mg to 1.0mg although it is still “PRN” or just “as needed” and she hasn’t had a dose in over 24 hours which is great.  She may be telling us she’s done with that drug altogether.  We also turned her flow down to 800cc and she’s been at 21% oxygen and maintaining O2 sats of 100% or close to it this afternoon and evening.  They stopped those IV fluids and hep-locked her peripheral IV in her hand.  So they said she could be “intermediate green” and since there was a discharge today and a room was available, we moved.  We just wheeled her little crib down the hall while my mom sang Pomp and Circumstance and we celebrated with Clara this next big milestone. 

Her new room is semi-private.  She shares it with two other babies, but it’s a smaller, quieter and calmer space.  There’s one nurse to those three babies and I can tell already that we’re going to be very happy here.  They’ve encouraged us to take over as much of her care as possible and prepare for her coming home – that’s what this intermediate stage is all about.  We were already changing her diapers and taking her temperature and helping with many things at her bedside, but now we’ll be able to do even more.  We will just focus on the last few things that have to happen for her to get home – weaning of her morphine and her oxygen as well as sustainable feeding.  Such good progress has been made with all of those goals.  I really believe we’re on the fast track home. 

I know you’ve missed out on Clara photos this week, so I’ll catch you up on several days’ worth. 

Beautiful wide, alert and open eyes

So cute in her fishies

Watching her mobile, no doubt

Clara smile!  Common, but difficult to capture on camera

Such focus in her eyes

I really love baby feet

And I love patting ruffle butts

Ready for the beach in August with my crab outfit

Sleeping soundly, snuggled up with blankets, lovies and my paci.  Life is good.

A little "tete-a-tete" with Bigdaddy

Say, "Cheese!"

This big man loves this little baby so much

Clara and me with Martha, the lactation consultant, who has worked so patiently, lovingly and passionately with us.

Dr. Yang!  The attending who has worked so hard and brought us so far.  She has been Clara's doctor for most of her five weeks in the NICU and is to be thanked for her diligence, her commitment to excellent care, her critical thinking and problem solving and her dedication and drive.  We wouldn't be where we are today without her and we will miss her very very much.  Today was her last day of service.

I should also mention that Dr. Yang really loves Clara.  See it in her eyes?

Goodbye, NICU Pod A!
Hello, Intermediate Nursery Pod F!
Clara is hot-natured like her daddy.  Sometimes a girl's just gotta strip down.
 A friend who has a five year old CDH survivor sent me this message from her child today:
“WHEN are we gonna get this baby home to her regular bed??!! Do we stop praying for Clara after she gets home all better? I'm not. I might pray that her Mommy even buys her candy. No, Clara is too tiny to eat candy."   

It may be a few years before Clara can eat candy, but we appreciate your continued prayers for her full recovery so she can get home soon to her “regular bed.”  God is faithful.

Your love, Lord, reaches to the heavens, your faithfulness to the skies. Psalm 36:5

Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done wonderful things, things planned long ago. Isaiah 25:1
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