Thank you so much to everyone who helped us celebrate Alexandria’s 1 Month Birthday on Monday, here are some pictures of the party.
Jessica, Denise, and Alexandria
Becca and Alexandria
Anna and Alexandria
Cathy, Chris, and Alexandria
Liz and Alexandria
1 Month Birthday cake made by Kimberly
Jessica, Alexandria (Smiling!), and Dawn
Alexandria will turn 1 month old this afternoon. The last few days there have been some changes. Her respiration rate has been accelerated a good amount of the time. I noticed Saturday that her hands seemed colder to me, which can be a sign her body is focusing on her vital organs blood to the heart/brain/lungs rather than her extremities. Last night around 11pm she had a cardiac episode, her heart rate dropped to the 60s for a few moments. We checked her sensors, they were all in place, we didn’t adjust them and she didn’t have a recurring issue. Dawn and Jessica from Hospice came by this afternoon and Jessica confirmed that she “looked different”. Jessica feels she looks paler, and after listening to her heart she does notice that there is some bradycardia (slowing heart rate) and a little arrhythmia (irregular heart beat).
So…her heart is slowing, it’s getting tired…she’s not able to pump blood throughout her body like she was able too, and her breathing is increasing to try and help get more oxygen into her bloodstream.
We’re going to have her 1 month birthday party today, have some cake and ice cream. I so wanted her to see her 1 year birthday. It seems so unlikely now. It feels like she is slipping away. I so desperately do not want to lose her. Please continue to pray for her.
She just looks so perfect, it’s so hard to accept.
Kimberly and Alexandria
Original Text of an E-mail from Douglas to Family/Friends
Both Jessica and Dawn from Hospice came by on Monday. We talked a bit about our interest in having an echocardiogram performed. They weren’t sure if this could be done while still in Hospice and removing Alexandria temporarily from Hospice in order for insurance to cover it. She had spoken with Alexandria’s pediatrician and said he would be calling us to discuss if/why/when we’d be able to do the echocardiogram. Even with the test they (hospice) have seen in most situations like Alexandria’s the cardiac surgeons would not perform surgery because of the inevitable outcome of her condition and risk involved. Aside from that, Kim and I do not, do NOT, want her to die on an operating table. Our birth plan wishes still apply… we want her to die comforted, in our arms, knowing she isn’t alone, not hooked up to machines.
Jessica noticed that Alexandria’s respiratory rate was higher than normal during their visit, something we’ve also noticed from time to time. This is another sign of her body compensating, and it’s something she said that Alexandria won’t be able to do forever. I’ve seen her have this during the last few nights as well… it comes and goes. She’s been very very fussy tonight.
My FMLA leave was officially approved this week. I continue to work hours here and there, mostly to save the FMLA time for when we’ll really need it. I only get 60 days and we want to be sure I have enough for when things begin to go downhill and I can be here all of the time. If that’s next week I wouldn’t have any worry, but if it’s 6 months from now I must prepare today for it… which means saving those days (by working a bit now). My employer, both HR and my supervisor, continue to be extremely understanding and supportive.
Thank you for all the e-mails and responses from my last note, it really helps.
