Wordless Wednesday

Every Day Gets Better

Every day with Clara just gets better; she keeps getting stronger and healthier and more and more fun.  I had such a great time with her today.  The sedative wean is going well - she's tolerating it and was awake and alert so much more.  Today for the first time, she really felt like a typical six week old baby and not a critically sick one.  She's doing so many of the things that a healthy baby would be doing now: responding to my voice, tracking with her eyes, and SMILING!  Yes, today there were several smiles that I really believe were real smiles, not just gas or coincidence.  It was so wonderful to see her awake more and begin to feel like I could even get a sense of her personality.  I think she's a really happy baby.  Except for when I was pumping, at rounds, or having a lunch break, I had Clara in my arms all day.  It was many hours of snuggling, singing, talking, playing with finger puppets, and a few naps (for Clara - not mama!), too.  I gave her a good lotion rub down and she seemed to really enjoy the massage (I hope it will help some fluid get movin' too!).  We did her OT oral exercises several times throughout the day (I might be an overachiever) and she did great with them.  She tolerated being held great and we didn't have to turn up her oxygen for desating any.  Granted, it was set at 80% most of the day, so it's still pretty high, but I think it's worth it if it helps her spend time out of bed and moving and interacting.   All of her medications are being given in oral form now so her peripheral line was taken out of her foot and her broviac was hep-locked.  They moved her OG tube from her mouth to a NG tube going into her nose (that's her feeding tube), so now her mouth is completely free.  The lactation consultant came by and we gave our first little lesson in breast feeding.  Clara did well, all things considered.  We've got a long way to go, but I'm determined to be persistent and not get discouraged.  She didn't latch on today, but she got to taste some breast milk and "play" a little.  The LC said that she's not hungry since she's on continuous feeds and that you can't get a baby to eat if she isn't hungry (that's not a problem for me!).  So, tomorrow we'll turn off her feeds for just a little while before we try to breast feed and see if that makes her any more interested.  She was on 50% breast milk and 50% formula in her feeds today and tomorrow we'll go to 75% breast milk.  

Probably our biggest immediate concern for Clara at this point is her pulmonary edema (swelling, fluid).  She was up to 5.15kg (11 pounds, 5 ounces) today and we're estimating her dry weight at somewhere around 4.5kg (9 pounds, 14 ounces).  So she's got about a pound and a half to lose.  There's no magic cure for this, just patience and time along with the max dose of Lasix that she's already on.  She does also have a tendency to be tachypnic which just means her breathing rate is sometimes very fast.  That is probably related to her wet lungs and we're hoping it will resolve itself with time.  Today I discovered that she loves having her back scratched and if she is tachypnic, her respiratory rate would almost always drop back down if I started scratching and rubbing her back.  I love getting to know her and her little tricks and idiosyncrasies. As the fluid leaves her lungs and she recovers from all the trauma her body has been through we should be able to wean her oxygen levels and flow.  In the meantime, we'll keep working on OT and PT, give her lots of time out of bed, continue trying to introduce the breast, and keep weaning her sedatives as she can tolerate it.  Patience is not my strength, but if we have more days like today while we're "waiting," I'll be happy.  She was so much fun!  

Here are just a few photos from today.  It's harder to get pictures of her when I'm holding her all day long. :)  But I want for you to see how good she's looking, too.  Actually I think there was a pretty significant difference in how she looked from the beginning of the day to the end.  I think some of her swelling went down just during the 10 hours I was there. 

First thing this morning - hanging out on the Boppy.  She still has her OG in her mouth and you can see how her right eye is swollen a bit.  That was gone by the end of the day.  (She's also still in yesterday's outfit.)

Check out my double chin

Playing with a monkey finger puppet

Wardrobe change!  Duckies today... (thanks, Auntie Sarah!  It's a newborn size, but we still squeezed in it!)  Clara was very thankful that I forgot the matching hat.  She apparently hates hats.

She really is so cuddly.

A girl's gotta color coordinate

For all you bow fans out there, I have some sad news.  These are near to impossible to keep on when she's in and out of the bed.  But, as cute as they are, I'd rather her be active and moving than keep a bow in!  So, you may start to see less and less of them.....

Baby feet

Feet and fanny

Daddy snuggles to end the day (notice the tube gone from her mouth now!)

She is looking so good!

Thanks so much for your continued prayers for Clara.  The obstacles may be smaller and the battles less critical, but we still have a long road home, so keep praying for our sweet little baby.  We are grateful to share her life (and our lives!) with you.

I can't wait to see what blessings tomorrow will bring. 

Forty Days and Forty Nights

You know how in the Bible "40" is always used to just kind of mean "a really long time"?  Well, I'm here to tell you - forty days is a really long time.  Today was Clara's fortieth day of life and when I try to think back six weeks ago to where we began, it's already becoming a big of a foggy haze.  It already seems like a lifetime ago.  Clara has come so far and done so much in forty days.  She's been to the brink of death and back again.  She has fought hard for her life and overcome obstacles that no one thought she would overcome.  She has revealed to us her beautiful spirit and changed our hearts and lives forever.  She's helped God change the hearts and lives of lots of other people, too.  It's amazing to me still how God has chosen to use the story of this sweet precious baby to reignite flames in so many souls.  All in forty days and forty nights. 

Clara has come a long way.  She is so much healthier now than we would have even let ourselves imagine a few weeks ago.  She looks great.  She's tolerating being held and moved and having her diaper changed.  She's breathing on her own.  She has beaten ECMO, infection, chylothorax, kidney issues, adrenal insufficiency, hypotension, and is giving a great fight against pulmonary hypertension.  What a champion.  We see her now on the road to recovery.  We know that road will still be long.  We still have battles to fight and there will likely be new obstacles that arise along the way.  But when we look back at what she's done in forty days, we know that she will continue to surprise, amaze and inspire us all with the days ahead. 

Today Clara had some goooooood snuggle time.  I held her for an hour or so this morning and another long stretch this afternoon.  Her Big Daddy got another chance to hold her today and her Sweet Mama held her for the first time too.  Other fun accomplishments in Clara's busy day: she wore clothes for the first time (!) now that her umbilical artery line is out, she weaned her oxygen levels down to 65%, she got her first chance to be introduced to the good ole boobie (we didn't make much progress, but it was really just a test drive.... we'll work with the lactation consultant some tomorrow), we began re-mixing breast milk in to her formula drip, she tolerated another wean of her sedative medication, her echocardiogram showed unchanged pulmonary hypertension which is fabulous considering we've dropped two big PPHN medications since her last echo, she had her first physical therapy and occupational therapy sessions and her mommy got a lesson in how to continue working on her PT and OT skills.   What a Monday!

Concerns and future goals for Clara (and therefore things for you to continue specifically praying for) at this point are: Continuing to wean her oxygen down.  Like I said yesterday, room air is 21%, so we'd like to get her there, slowly.  Fluid, fluid, fluid.  Her time on the ventilator was rough on her lungs and her chest x-ray today was even wetter than yesterday's and the scale reflected it too... she was up to 10 pounds, 14 ounces.  We really need her to shed another kilo (2 pounds or so) of fluid, specifically from her lungs so that they can open up and do their job without having to work so hard.  Feeding is our next big obstacle.  Since she's had tubes down her mouth and throat for the last six weeks, she doesn't have very positive associations with things going in her mouth right now.  She's also never had to learn how to swallow and her sucking reflexes aren't what they were when she was first born.  So we've got to re-learn all of that and possibly overcome some acid reflux/aspiration issues, too.  That's a lot to learn when you've just learned how to breathe!  We will also need to wean her morphine and versed.  She's a morphine addict now and sometimes these babies really struggle with withdrawal.  Pray that she will be able to come off the drug easily and adjust to life without it soon.  We also ask for you to continue praying for protection from secondary infections or other complications that would cause a big setback in her overall progress.

Isn't it great that our concerns and prayers now are for things that directly related to bringing her home?  It is so refreshing to not be on the brink of life and death any more.  We know that we will tackle whatever is ahead of us now.  Especially with the love and continued prayers of so many....

Speaking of prayers - thanks to the many of you who have been praying for the other baby with a diaphragmatic hernia.  I don't have much more information today because I still haven't met the family yet.  I did write them a note and drop it by today with my contact info, so they know that we are here for them whenever and if they're ready.  The baby's name is Penelope (beautiful!) and she is successfully on the ECMO pump now.  Please continue to remember her in your prayers.  I really hope they'll have the happy outcome we have. 

I'm realizing looking at these photos that you can see her pressure sore on the back of her head/neck in a lot of them.  I haven't really photographed it yet, because ewww, yucky.  But don't be alarmed; even though it's big and kind of gross, it's actually healing really well.  I might be a little out of control with the photos, now that we've got her out of the bed.  But how can you resist these snuggly shots?

Praise be to God for the good works He has done!

Steady Progress

Clara had another good day today!  Her oxygen level given through her nasal cannulas is still set at 100%* and we would like to wean that down over the next week or so (room air is 21%), but we’re grateful that she was having a good day with slightly less labored breathing and that she was able to maintain high oxygen saturations throughout the day.  It will be okay if we have to take this wean slowly.  We were both able to hold her again today and in a different position she did even better than the last two days.  I think I see even more snuggle time in our future.  She got her chest tube out today and also the line going into her belly button and with both of these gone we are making great progress on getting tubes out!  Not only is that good for potential infections; it also makes it a lot easier to get her in and out of the bed.  She was a bit more swollen today so we are still doing the fluid dance.  We increased her Lasix again and are hoping that will help, although we are looking forward to the day when we can be done with that drug altogether.  She’s been on it a long time and it does have some side effects, so we would love to be able to stop it.  However, her chest x-ray was very wet and hazy today and we need to get that fluid off so that she can breathe more easily.  We finished off another drug today – hydrocortisone is gone now.  It was treating her adrenal insufficiency/low blood pressure and we’ve been slowly weaning it for quite awhile.  She is also up to “full feeds” through her feeding tube which for her is 23ml/hr.  She’s still getting the enfaport formula, but tomorrow we will start mixing breast milk back in and by Thursday we will be back to 100% breast milk.  I am hoping we might begin to start attempting some initial oral feeds this week, too.  Feeding is our next big hurdle, so pray that this girl will love to eat as much as her family does (which is a lot!) Clara’s Big Daddy got to hold her today for the first time.  He was the first one besides me and Robert to get some snuggle time and it sounds like he really soaked it up.  I can’t blame him; it’s pretty awesome.  Here are just a couple of photos and some precious video, taken by her daddy.

Big Daddy holds Clara (sorry for the cell phone picture; I'd left already and taken my camera with me)

Stars and stripes

Enjoying her tummy time.  Clara is a superSTAR!

 

Baby Clara gets hiccups:

More hiccups...

Daddy asks, "Is that a smile?"

Late last night another baby girl with a diaphragmatic hernia was admitted to our pod.  It was difficult today to watch her struggle throughout the day and to remember how hard those first few hours and days were for Clara too.  Late this afternoon, they had to put her on ECMO.  We haven’t met her parents yet, but since the pods are open, we overheard a lot of the conversation with the doctors and watched as the mother and father stood over their brand new baby girl and sobbed.  Robert and I both hurt for them so much, knowing the pain that they are feeling now and also the difficult road that they have ahead of them.  I want to talk to them and offer some sort of encouragement, but I also know that there’s nothing I can say to make anything better for them.  I cannot offer any promises.  I hope that Clara’s miracle would be an inspiration to them and provide them with hope for their own journey, but I am also acutely aware that not all stories end this way.  I wish that I could tell them it’s all going to be okay, but I don’t know that it will be.  That’s the pain and terror of where they are right now.  I watched them come to the unit, the mother in a wheelchair with an IV in her hand still, on a pass from Forsyth for just a few hours, and it took me back to five weeks ago with such sudden abruptness.  In many ways that already feels like it was a lifetime ago.  There is much suffering in this world.  Tonight as you pray for Clara, please pray for this new baby girl and her family, too.  They will need it.    

Prayers for Clara’s next steps:

Tomorrow we will likely transfer her morphine and versed (pain/sedative) into the oral form.  Pray that transition will go okay and we can begin weaning those soon too (we’ve got a morphine addict baby now and that will take some time to deal with).  Pray that Clara’s irregular breathing pattern will improve and that she will get stronger and stronger so that her breathing can be less labored.  We will have another echocardiogram tomorrow for the first time in quite awhile (and first time since she’s been off of Nitric Oxide and Milrinone.)  Pray that it will show no worsened pulmonary hypertension!  Pray for the fluid to leave her body, especially her lungs.  Pray for success with feeding in the days ahead.  Pray that we are able to wean her oxygen levels down to 21% so we don’t have to go home with oxygen!  Pray for this other family who is spending their first night on ECMO and that their new daughter will have the same fighting spirit that Clara has.  Give praise and thanksgiving to our amazing Creator and Sustainer who shows us day after day how great He is. 

*  Just talked to Clara’s nurse and they’ve got it down to 90% now.  More good progress!  Let’s hope it continues overnight.

Happy Birthday, Mama!

Turning thirty must have really worn me out because I crashed hard last night at about 8:00 with no thoughts of updating the blog.  So, we’ll try to give you two for one today.  Robert gave you a brief update of the medical stuff from yesterday, so here are the photos to go with it.  Clara helped make my birthday one I’ll never forget.  Yesterday morning she didn’t do great with being held, but yesterday late afternoon we tried again and she did much better.  Here’s our little ladybug:

 

I know this hairbow is a repeat, but it matches those blankets so perfectly...

Clara smile!

Mama's birthday wish come true

Daddy got some birthday lovin' too...

Still working on those paci skills

snuggle bug

Both so happy

Sleepy eyes