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.
THRILLED to read this post Chrissy! Wow!ReplyDelete
Yay for Clara! And we are praying and rooting for ice cream to be in the diet soon!ReplyDelete
Yay for Viagra!!ReplyDelete
And yay for cheese. :-)ReplyDelete
If Clara passes the dairy test, perhaps your family can do a "Got Milk?" commercial. We sure are praying for these last steps toward her going home, and are praying fervently for little Penelope. Hugs to you all!ReplyDelete
Yeah I would agree with the attending...I never seen or heard of a CDH baby doing so well. :D I brag about Clare Mae to my colleagues. They are amazed.ReplyDelete
I'm so proud and happy for little Clara! I can't imagine how you must feel!ReplyDelete
Oh Chrissy, my heart leaps for joy for all of you. What a mighty God we serve! Praying Clara can be home very soon!!ReplyDelete
You scream, I scream, Clara scream ... we'll ALL scream for ICE-CREAM!!!!!!!!!!!!!!!! Will be delighted to treat the Hardys to that any time you say :-)!ReplyDelete