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!|
Yay! Love the pics. I sense a tiny bit of attitude in the first photo. She's like, "what the heck? I'm swollen and I've been awake all day, and you are taking pics?"ReplyDelete
We love you Clara, and are so so thankful you are continuing to heal.
Thank you for sharing your day and the great pictures. Clara looks great and I am sure she will enjoy her new mobile. I hope you all have a great Easter and enjoy your bundle of joy.ReplyDelete
That saying "when momma ain't happy, nobody is happy"......really means "when Clara is happy, we are all happy, ecstatic, thankful, appreciative and in awe of an awesome God!ReplyDelete
We thank you for giving us the inside scoop on Clara. The pics are so cute and she is a beautiful baby with awesome and faithful parents! I love watching her evolve into a healthy baby! God bless you on this upcoming Eater holiday! He has risen!!!!!!!!!!! The Welsh FamilyReplyDelete
Aww... she's wearing the green bow! That's our little Irish lassie! ;) Praying for all of her next steps to be in the right direction, and that once she is less swollen, the tubes are out, UAC etc, that she will naturally be more responsive to touch, etc. That only makes sense to me... but I'm no doctor! We love you guys!!ReplyDelete
She looks so comfy and less puffy today! I am not surprised about her not wanting to lay on her R side yet, it will come with time. I think she is doing great! Make sure you two get some rest too.ReplyDelete
Continuing to pray and so thankful for the progress this little lady is making!!! Lots of love to Miss Clara Mae and her mama and daddy too!!!ReplyDelete
It is so nice to see her without the red ECMO catheters! We will keep praying! I think I learned to be thankful for each day we had with Samuel, even if it wasn't a good day, and it sounds like you are doing that too! :)ReplyDelete
I love the first pic too! She is a sassy girl! Love from us to you.ReplyDelete
Thank you so much for always keeping us in formed. We pray daily, hourly even, on some days for you all. She is amazing and such an inspiration~as you all are. I LOVE the open eyes. Sweet, sweet baby girl! Thank you for sharing your lives with us.ReplyDelete
Remeber we are all cheering for you. Our prayers are steadfast and constant. What a wonderful Good Friday update. Stay strong and keep yourselves rested and healthy to continue to run this race.
We love you all!
The group in Greenville, NC is still praying for Clara, her family, and the medical staff. You guys will continue to be in our thoughts daily. We are so happy that Clara is doing better. Easter is an awesome time to receive such blessings! God is great!ReplyDelete
She looks so beautiful !ReplyDelete
I am so happy that she is recovering. We are still praying for her every day.
Today is a brand new day and I pray it will be a very good one for baby Clara. When SHE is happy, we ALL are happy!!!!! Open your eyes, little one, and see that silly lion, hippo and monkey ..... there is so-oooooo much more out here for you to see and your mommy and daddy can't wait to show it ALL to YOU! I am praying for that to happen real soon.ReplyDelete
So grateful for a peaceful night's sleep for the Hardy's! What a blessing for you that Clara was alert and looking around the room. I peay today will be another beautiful day for you all as well!ReplyDelete
I was just reading over the title of your blog, and all the definitions of "hardy". of course you hadno idea what was ahead when you chose that title, but it has proven to be an excellent description of you!! So glad that Clara is getting off some things and moving forward. It is VERY exciting that she may come off the ventilator soon! Happy Easter to the "hardy" Hardy family! JodiReplyDelete