Hospice – Alexandria's Journey

1 Month Old

4th Week (Home), Alexandria's Life, Hospice No Responses »

Jan 172012

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.

1 Week Old

1st Week (Home), Alexandria's Life, Hospice No Responses »

Dec 242011

Alexandria and Kimberly (1 week old)

Original Text of an E-mail from Douglas to Family/Friends

Kim was able to get a full night sleep on Thursday night (I won the initial stubborn contest) and got up around quarter to 9. After she came downstairs up I got Aden and Gabriel baths before giving Alexandria her scrub-down. Alexandria had a good Friday and only had two respiratory episodes.

Jessica from Hospice checking on Alexandria

We have a three person team from hospice; two RNs, Mary and Jessica, and Dawn our social worker. Jessica from hospice came by around 10am to check-in and see how she was doing. This was Jessica’s first visit. I peppered her with questions about other children she had helped with Trisomy 18. None of them had started with the cardiac and respiratory issues that Alexandria had, but they all had heart defects of a different nature then Alex has. The oldest lived 29 days. So, part of me has hope that Alex doesn’t have their heart conditions, but I’m concerned that she had such a rough start. It is so impossible to weigh expectations. “Every child is different…” she says, which is absolutely true and something Kim and I know all too well because of our experiences with Aden.

Marybeth holding Alexandria

My foster sister Marybeth and family showed up around 1:30, and after handing off Alexandria to her to hold for a moment I

ended up falling asleep on the couch next to them. I slept about a half hour before my foster brother Michael and his family arrived. One of the things we wanted to do for her was have a birthday party and @ 1 week with a bunch of family here seemed like a good time. 🙂 Kim made the greatest birthday cake for her

We had a fairly uneventful day and had a good visit with Marybeth and crew before they headed back to Midland. Michael and family are going to stay here until Monday and help us out, it’s very good to have them here.

Hope all is well with all of you, Merry Christmas Eve!

Kimberly making Alexandria's 1 Week Birthday Cake

Alexandria's 1 Week Old Birthday Cake

Alexandria and I at her 1 Week Birthday Party