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.