Stellar Day for Clara Mae

Today was FANtastic.  Clara was sating high all day long.  Like hanging out at 100 for hours at a time high.  And even with repositioning, diaper changing  and a huge event where we totally changed out her mattress and all her bedding (goodbye puffy ECMO tempurpedic mattress) she stayed high and didn't even require as many PRNs of extra versed (that's the sedative).  I think the lowest I saw her sats go all day today was maybe 94 or 95.  AND, we got rid of the Nitric this evening while she was snoozing away and she didn't even notice this time.  Kept up sating high like she'd been all day and her blood gases two hours later were some of the best I've seen her have.  Can you hear the pride in my tone?  Because I'm pretty stinkin' proud of her.  She is really doing great.

With that said, we still have some things to overcome.  The chylothorax that we mentioned a couple of days ago is probably going to set us back a bit.  I think she'd be in good shape to be extubated in the next day or two if it weren't for that, but they don't want to extubate until we're sure that's totally resolved.  The treatment so far has been to stop feeds.  The plan for right now is to resume feeds on Wednesday, but instead of being on breast milk she will get a special formula called Enfaport.  It has high levels of protein and something called MCT that help babies absorb fat differently so it won't leak into her lymphic system.  Now, don't panic - it won't be forever.  Hopefully we'll gradually move to a half Enfaport/half breast milk blend and then back to all breast milk. My hope is that we can get through all those stages before we begin oral feeding so that I can still introduce the breast to Clara before a bottle.  But we'll see.

Rounds this morning went well.  The new attending neonatologist on rotation right now is Dr. Welch and she seems wonderful.  Thanks for your prayers about that transition.  We continue to be so grateful for the excellent medical team at Brenner's and the wonderful care that Clara is receiving.  We successfully got Clara off of Nitric Oxide today which was the main goal for today.  We also weaned her hydrocortizone down by another 10% and her blood pressure continues to tolerate that well.  She's still getting Lasix (now down to three times a day instead of four) and continues to diurese well.  Her new weight (which may not correlate exactly with her old weights since it was on a different scale) is 5.1kg or 11.2 pounds.  We're estimating her "dry weight" at 4kg now, so just 1 more kg to go!  Come on, Clara!   They still need to change her IV access.  The hope is that sometime tonight they will place a picc (peripherally inserted central catheter) line in her leg with a double lumin (in case you want to know the nitty gritty: we have to have two lines because they cannot run lipids with versed and that's two of her main drips).  If they cannot get the picc line in, they will do the broviac line that I mentioned yesterday.  A picc line is a little less intense (a nurse practitioner does it instead of a surgeon) and a safer option overall.  So, we hope that will work out.  We have also requested a Physical Therapy consult to come help her with her neck and head because after 22 days on ECMO and her head in the same position she's got a crick in her neck that I wouldn't wish on my enemy!  I let them all know at rounds that my thirtieth birthday is Saturday and the only thing I really want is to be able to hold my baby girl for the first time.  Nothing like imposing totally artificial and medically unrelated deadlines, right?  We'll see if it happens....

So, that's about all the medical updates.  In addition to being a total rock star with her saturations and not getting agitated at stimulation today, Clara was also very alert.  We had so much fun together today!  This afternoon she was wide awake from about 2:00PM-5:00PM.  We read stories, played with a lamb finger puppet she got for Easter, played with a rattle, watched her mobile, talked about life, and I sang every single camp song I could think of.  Then she was still awake and I was out of ideas.  But boy was it fun.  I just soak up every last minute with that little girl.  We know that she'll probably have some developmental delays from being in a bed and sedated for so long, but today she was acting more and more like a typical one-month old.  She could track with her eyes, was responding to the sound of my voice, and really loved looking towards the light out the window.  Quite frankly, I think she may end up being one smart cookie.

 Here are a few quick photos from today:

Watching her mobile

Wandering eyes

A rainbow bow, for a very bright day!

Looking out the window.  Planning her escape, I'm sure.

Kisses from Big Daddy

Flipped around in her new bed position!

Tiny hands next to Big Daddy's finger

Snuggling her lovey

Here's her Nitric Oxide machine.  IT'S TURNED OFF!!!!

And here is some video of Clara watching her mobile:

Please pray that Clara will continue to rest peacefully tonight, that her chylothorax will resolve quickly and we can resume feeds soon, that she will be able to be extubated soon and that the continuing weaning of her remaining medications and drips will go well so that we can be moved to Intermediate Care and begin the next stage of her recovery.  We are so thankful for a wonderful day.

Life

Today I've just been thinking about life.  How grateful I am for our lives, for Clara's life, for Jesus' life.  I guess that's what Easter is all about.  I'm very thankful to have celebrated this Easter with Clara and to be in a place where we feel certain now that she will have more life ahead of her.  Robert wrote yesterday about what a wild month it's been and he's right - it's hard to believe how far we've come and how much we've been through this past month.  And yet, it doesn't compare to the life, betrayal, death and resurrection of our Savior.  Suffice it to say, Easter was extra special this year.  We are so deeply thankful for Jesus' life and the example He was for us during His time on this earth.  And we are thankful for God's willingness to sacrifice His life on our behalf and then for the incredible miracle of His resurrection.  We are experiencing our own Easter miracle and it's just making the reality of salvation even more powerful and meaningful for us.

Medically speaking, Clara had a pretty good day.  By this morning they had weaned her Nitric Oxide down to 2 (we started at 20, so that was a pretty quick wean).  They planned to take her Nitric all the way off at about 12:00, but when we did it, Clara let us know that she did not approve.  She very rapidly desated and turned gray and wasn't breathing.  It was a little scary.  Fortunately, all the doctors were standing around and they bagged her (manual ventilation), ended up turning the Nitric Oxide back on again and she did recover.  Other than that little incident, her sats have stayed pretty high today and she's been good.  We have been able to wean some other vent settings and have continued to wean hydrocortizone, too.  We went back up to 4 on the Nitric after her little hissy fit and up on her oxygen too, but we are going to keep trying to wean both back down.  The goal is to have the oxygen down to 60% (last I talked to the nurse we were at 72%) and will wean the Nitric by 1 every six hours beginning at midnight (12:00am- we go to 3, 6:00am go to 2, 12:00pm go to 1, and 6:00PM tomorrow, try turning it off again...)  We're hopeful that she will tolerate this slower wean and we'll be able to have the Nitric turned off by tomorrow evening.  Other than that, we just continue to check blood gases and wean vent settings with hopes that we'll be able to extubate sometime this week, whenever she shows us she is ready.  She is still not consistently tolerating moving and messing with her.  Her sats dropped some today during a diaper change/repositioning and sometimes when she needs to be suctioned she gets a little finicky. She has been desating (usually not too serious and with relatively quick recovery) 2-3 times a day.  So we also just need for her to show us that she can keep her oxygen saturations consistently higher before we extubate because saying goodbye to the ventilator is another safety net removed.  She continues to diurese well.  Today she was down to 5.3kg (11.6 lbs) from 5.6kg yesterday. Her birth weight was 3.7kg, so we're aiming for somewhere between that and 4kg.  Tomorrow she will have that triple lumin central line in her neck removed and a new line put in her chest called a broviac line.  This procedure is fairly routine, but we did have to give consent for it and hear the list of potential complications, so please pray that goes smoothly.  It is a surgical procedure.  The neonatalogist who has been caring for her since we arrived in the NICU on Tuesday is Dr. Yang.  She has been wonderful and really given Clara excellent care while helping her make great progress.  Tomorrow, a new attending will take over service so we'll have to learn the style/philosophies of a new doctor and see if that will change any of our strategies.  Please be in prayer about that transition, too. 

She had some more alert and awake time today - a little bit this morning and again this afternoon.  It's great to see her be awake and look around and interacting some with the world around her.  This afternoon, we left the hospital a little earlier than usual and left Big Daddy and Sweet Mama in charge of watching Clara.  It felt like leaving her with a babysitter for the first time.  I had a big list of things for them to watch and keep an eye on and make sure the nurse did and numbers I wanted reported back to me.  Don't worry, they did a great job.  It was nice to come home and get a little nap in.   For those concerned about my mastitis, I'm much better today.  I started an antibiotic last night and the fever is gone.  I've just been pumping a lot more frequently, am doing the whole warm compress thing, and am riding it out.  As I told my mom last night, "Don't worry about me.  Clara is a whole lot sicker than I am!"

Now, what you've really been waiting for.  Easter photos of Clara!

Her Mama K gave her this precious pearl bracelet for Easter.  That charm is boxing gloves - for our  little fighter!

Sleeping peacefully

 Happy Easter Hairbow!

Clara in her first Easter dress

She may end up with a dent in her head for all the kisses her daddy gives her there....

A father's love, on Easter

Easter family shot

Our hearts are so full.

Detail of the smocking on her Easter dress

Those big blue eyes say, "Happy Easter to you!"

Prayer Requests for Clara:
- Continued diuresis, and especially that the fluid will leave her lungs, then her tissues, then her body.  Her chest x-ray the last few days has looked very wet and showed some partial lung collapse from all the fluid.  We need the fluid gone!  For good!
- Transitions ahead: line change, physician change, weaning of nitric oxide
- Continued weaning of vent settings that will lead to extubation
- Better toleration of movement, positioning and other stimulation

This Easter, we are so glad to say that God conquers death!  Praise be to Him!  Life is sweet.

One Wild Month

Clara is one month old today! She's continuing to improve daily, even if it's only small steps. But that's OK, because small steps are going to be the game plan from here on out (if all goes well!). I was telling Chrissy yesterday that I almost don't know how to feel now that we aren't necessarily focusing on short-term, life and death goals. The upside is that our "roller coaster" is now filled with much milder ups and downs and everything is much more stable. The downside is that, from here on out, everything is going to happen much more gradually and require much more patience on our part. But we are SO HAPPY to be where we are right now, wondering when instead of if we'll be able to take Clara home.

Clara is, of course, still doing the dance of CDH, taking steps both forward and back, but they're mostly smaller steps at this point, and most of the steps she's taking have been in the right direction. Here's some of the recent successes and setbacks:

-She's been doing a pretty decent job with weaning off of some of her support. She has been completely weaned off of her Flolan (a drug for her PPHN) and her heart ultrasound today showed no change. This means that she is tolerating being off of the drug just fine. She's also been tolerating the weaning down of some of her ventilator settings and her inhaled nitric oxide. The nitric has gone down to 10 ppm (and will likely go down to 5 later this morning), and her percentage of oxygen has gone down some, as well as the vent's pressures.
-She is still considered a minimal stimulation baby, meaning that we have to significantly limit how much we touch and move her, as well as how much we expose her to light and sound. And of course this means that we still haven't been able to hold her. However, she is getting better about being stimulated. Each turn, weighing, diaper change, and suctioning is getting less scary.
-She's still getting lots and lots of fluid off! She weighed in today at about 12.3 lbs, which is a full pound less than yesterday. She's still got 3.5 lbs of fluid (about a liter and a half) that she needs to get off, but she's peeing as hard as she can and we're very proud of her!
-Her chest tube began draining some milky white fluid today, and we were told that she is experiencing a condition called chylothorax, in which the lymphatic system is "leaking" a fatty fluid into her chest cavity. They told us this has likely been going on for a while now, but we're just now seeing the fatty fluid in her chest tube because they have increased her feeds so much in the last couple of days, so she's had more fats in her stomach to leak out. We're still very unclear on what exactly may have caused this, but the important thing is that it is manageable, and, while we've had to stop feeds again while we wait for this to get resolved, she is getting everything she needs through her IV nutrition.
-Chrissy's not feeling great tonight. She spiked a fever of 102+ and has been in a lot of pain from what we suspect is mastitis. She is on an antibiotic, so we hope and pray for that to get better soon and for her to get back to 100%. Any dudes out there reading this: be thankful for all of the things that we undeservedly don't have to worry about. That goes for all of pregnancy and, I would suspect, much of life in general.

OK, here's the good stuff:

Clara, awake and alert in her new headband/hairbow.

Clara holding Daddy's finger.

Daddy changes Clara's diaper for the first time. (Nailed it!) (Twice in one day!)

So beautiful, especially now that her swelling has gone down.

And here's some really good stuff:

Prayer requests:
-Successful weaning of medications and vent support!
-Continued improvement of pulmonary hypertension.
-Continued success with getting the rest of her excess fluid off.
-Quick healing of her pressure sore on the back of her neck/head.
-Protection from infection.
-Clara's tolerance with being stimulated (touch, sight, sound) so that Chrissy and I can HOLD HER!!!
-Chylothorax (fatty fluid leaking into the chest) to be resolved quickly and without complication.
-Feeding once off the vent (this one's at least several days away, but it's going to be a doozie when we get there).
-Continued praise and glory to Clara's heavenly father for the miracles that he is performing in and through Clara's life. It has been so powerful for Chrissy and me to be experiencing this crisis during Easter time. We have been to the brink of losing our only child, and the meaning of Easter has hit us in a new and more powerful way than it ever has before. Praise God, from whom all blessings [and salvation, and mercy, and miracles] flow.

Thanks to each and every one of you who are following Clara's story and who are praying, hurting, and rejoicing on our behalf. We've done nothing to deserve it, and so we know that each of you is counted among the blessings shown to us by the God of Grace.

With love and gratitude,

-Robert

Slow and Steady Wins the Race

I apologize to all of you who have been awaiting today's promised update. I did bring my computer to the hospital this morning, but am just now having a chance to sit down and write.  It's amazing how quickly the day passes here.  Part of it is that it's a joy to spend time with Clara and the minutes tick by quickly at her bedside.  And part of it is that by the time I sit in on rounds, spend thirty minutes pumping every three hours, take a break for lunch, ask the nurses and respiratory therapists a zillion questions....the day just slips away. 

First of all, let me update on yesterday.  We had a great morning.  She was very, very alert yesterday  morning.  She had her eyes open  (well, one of them at least... the other has been swollen shut!) and looking around and focusing on stuff and following voices.  We read books and she seemed to really pay attention and be interested.  She was acting like a regular one-month old baby and that was really cool!  The nurse even suggested that we hang a mobile over her bed so that she'd have something to watch.  Sweet Mama and I went out at lunchtime to buy one, of course!  They were able to wean a few drugs down some more (Flolan for PPHN, Morphine for pain, and Hydrocortizone for low cortisol) as well as weaning her vent settings which she tolerated well.  We were continuing to increase her feeds (of breast milk) every eight hours.  We were having a stellar day!

Then, yesterday afternoon her oxygen saturations began to drop (they call that "de-sating" in the biz).  We like that number to be close to 100, and stay above 95.  They started drifting down into the 80s and 70s which is a big problem.  For the next three hours or so we tried several different things to get her sats back up.  They are describing Clara as a "minimal stimulation" baby meaning that she doesn't really like to be touched or moved and noise and lights seem to agitate her.  Also, every time she poops/gets her diaper changed she also seems to de-sat.  One of the big factors for getting her extubated (off the ventilator) will be her showing us that she can tolerate getting messed with and not letting those saturations drop.  Anyways, it turns out that the issue that caused yesterday's episode was that her ET tube (the ventilator tube in her mouth) was positioned a little too low.  Once we pulled it out some, she recovered a good bit.  However, after being agitated for so long, she had a hard time recovering to the levels she experienced all morning.  Also, I think being awake all day long had probably exhausted her.  I realized yesterday that she's been sedated for her whole life!  She's never had to learn how to fall asleep.  And since she had been awake all day, and then gotten all stirred up, I think she was just worn slam out.  We gave her an extra dose of Versed (the sedative) and once she sacked out her sats climbed up again.  She had a peaceful and restful night (so did her parents, by the way.)  Whew.  Glad to have that little episode behind us!

We increased her painkiller some yesterday during that episode and we're going to keep it where it is for now while we're still trying to wean things and while she seems so easily agitated.  We'll worry about weaning it again later.  It was a little sad to see her zonked out again today and not looking around like she was yesterday, but she has had a great day today of sleeping very peacefully.  We are still continuing to wean drugs and vent settings, as she can tolerate it, and are continuing to increase feeds too.  That's going to be the continued game plan until we can extubate her, which we hope might be sometime next week.  We're also still working on diuresis and she's doing a great job with that.  She's down to 6.1kg today (13lbs, 6oz) and looking much much better to us, although we still have a long way to go.  We removed her foley today so now she's peeing straight into a diaper.  I'm hoping that we might remove her UAC (umbilical artery line from which we've been drawing blood for blood gases) tomorrow.  The fewer lines we've got going into her, the less chance there is of infection.  Plus, once her UAC is out we can start putting some clothes on this little lady!  Today we've also been turning her a lot more, in part to keep her skin healthy and in part to help with the fluid.  Unfortunately with one of those turns today we found a bad pressure sore at the base of her head under some neck rolls.  It's several days old, at least, maybe longer because it's already scabbed up and healing well.  There's no infection, so that's good, but it's a really nasty looking sore.  It's probably from being in the same position for three weeks while on ECMO and could have been made worse with all the swelling because it's kind of in between some rolls of skin that were puffed up a few days ago.  We've also learned with all this turning that she's very happy laying on her left side, but doesn't particularly like being on her right side.  Whenever she's on that side her sats are consistently lower.  We do have to keep turning her, for the bedsore issue as well as to help get her fluid off, but it's good to know that she prefers one side to the other (Robert's theory is that her "good lung" is the right one and when she's laying on her left side it's up and not compressed.  Makes sense to me!).  Robert and I got to help with the last turn, which is really quite an event!  I really enjoy the moments when I am able to help care for her, even with something as little as positioning. 

I think that's about all of the medical updates for today.  We will just have to continue slow and steady as we wean these things and give her time to get over her stimulation issues so that we can drop the vent.  That will definitely be our next big move!  We will have another echocardiogram tomorrow once we've completely weaned her Flolan and see how the pulmonary pressures are doing then.

On this Good Friday we are more acutely aware than ever before of what a huge sacrifice Jesus' life was.  We come closer now to understanding the deep pain of losing a child.  There are no words strong enough to express what an incredible gift it was that God will willingly gave up His Son on our behalf.  We are so thankful for Jesus' life, death and resurrection and hope that in the midst of this Easter weekend that you are reflecting on the enormity of that sacrifice too. 


Now for two days of photos!

Yesterday, still pretty swollen!

Today, looking much more svelt!

Clara's new mobile, with a lion, a hippo, and a monkey.

Precious little fingers.

We are so in love with this little cutie!

Dear Fan Club

To Clara's Adoring Public,

Clara had a mostly good day today.  I usually leave the hospital around 5:00, but at about 4:30 today her oxygen saturations started dropping and for the next several hours we tried to "troubleshoot" that (ie: figure out why and fix it).  She's stable again now and resting peacefully, but I just got home from the hospital and after eleven hours there I need to eat, wash pump pieces, and collapse.  So, I will string you along for a few more hours.  I plan on taking my computer to the hospital tomorrow, so I will upload photos and tell you in more detail about the day then.  Until then, please pray tonight that Clara RESTS peacefully and that all of her stats stay stable through the night.  No more misbehavin'!

Thanks for loving her (and thereby us) so well.  More tomorrow!

Love,
Clara's Mama

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 

Moving Day

Today, after 25 days in the PICU, Clara moved back to the NICU.  The good news is that Clara is doing well, adjusting fine to her new home, receiving more Lasix and peeing great, and already adjusting some of her meds (dopamine gone, others to be weaned soon!).  We knew instantly that she will receive excellent care from the neonatalogists and nursing staff in the NICU.  I felt today like while we were in the PICU we were just trying to keep her alive.  "Boring is good" was our mantra and stable and steady were the name of the game.  I think in the NICU it's all going to be about what we need to do to get her home.  The doctors jumped on her right away and were ready to start being a bit more aggressive about taking steps to get her better.  Of course, we're excited about that and grateful for this big step forward.  

With that said, today was really tough on Clara's mama.  I mentioned yesterday how I was anxious about the move and it was with good reason.  Not only was it difficult to say goodbye to the wonderful people we love so dearly in the PICU, this was a big change in a lot of other ways.  It's going to affect me a lot more than Clara, and this is what is best for her, so I'm going to have to make the necessary adjustments.  But today was hard.  For my routine-driven, control-freak, type A personality a big change like this was just the straw to break the camel's back on four weeks of pent up stress.  I've held it together surprisingly well the past four weeks.  I've been amazed myself at the stamina, energy, hope and peace that God has graced me with day after day.  Today, I fell apart.  Here are the (mostly very trivial and insignificant) changes and adjustments that let to my breakdown today: The NICU is crowded, dark, and loud.  Since we share a pod with 5 other babies somebody's monitors are constantly beeping.  Some of the other babies in our pod could be held by their parents and it was hard to watch them getting to snuggle while I am still waiting for my chance to hold four-week old Clara.  Some of those babies were crying today too and since Clara is ventilated, we haven't heard that sweet sound yet either.  The attending doctor in the NICU had a very thick accent that made it hard for me to follow what she was saying (great doctor!  But I was really struggling to listen to her).  They couldn't find my breast milk I brought in a few days ago... I hate wasting that stuff!  They wanted to give me tiny 2oz containers to put my milk in... I'm pumping between 35-40 ounces a day - I wanted my big containers from the PICU!  I have to go to a separate room far away to pump; no more bedside pumping in a private room.  They wouldn't let me bring my water into the unit.  We have to take off rings and watches.  No cell phones are allowed.  There's less space overall, but that meant that a lot of the "stuff" (like Clara's books or blankets) I've gotten used to having around was in the way.  I couldn't figure out how to make the new meal vouchers work.  And I couldn't find my car in the parking deck.  So all of that led to a pretty big meltdown by Clara's mama.  I know that none of those things are important or matter in the grand scheme, but it's all about getting shoved out of your comfort zone and having to re-learn everything from the people to the space to the rules.  I'll begin that process tomorrow after (hopefully) a good night's rest and a fresh start.

I share all of this in part just to let you know that I don't always have it all together.  I don't want for you to have the impression that I'm sailing through this beautifully.  Yes, I am coping well.  That is due in large part to the incredible support system we have, to the time we had to prepare for this in advance, and to the many prayers that are being offered on our behalf right  now.  God has sheltered us and protected us and He will continue to do so.  But today I broke and it was hard and I felt sad and overwhelmed by everything.  I think that's pretty normal.  I am accepting today for what it was and looking towards tomorrow for all the good it has the potential to be. 

We're thankful for Clara's stability through this adjustment.    We pray for her new doctors and staff and for a smooth medical transition where the correct information is all relayed and communicated effectively.  We pray that she will continue to diurese well (yesterday she was negative 208cc for the day which meant she lost 0.4kg or roughly one pound!) and that we can focus soon on the other steps to treat her pulmonary hypertension and get her home (drug and vent weanings primarily).  We pray for God to continue to sustain us as He has faithfully and for the strength to make it through the next phase of her recovery.   

Here are some photos of the move.  I took some video too, but it takes awhile to upload, so it may be in another post....

Goodbye, sweet PICU room!

 A few closeups of our sweet girl today.  She's still very swollen, but we hope to see improvement with that in the days ahead...

Green for Go!  Today was moving day!

You can see here that Clara's newborn hair is starting to all fall out.  Any bets on how it comes back in?  We think blond and curly.

A quick peek at her open eye...

Our new corner in the NICU

The long row of baby beds

Huge, huge baby.  Let's watch her shrink!

Her NICU pod...

For now, I'm easing my "too-many-tears-headache" with four advil, a glass of wine and a piece of chocolate chip pound cake.  Sleep will come soon and the beautiful gift of a fresh new day tomorrow.  Thanks for your continued prayers.