1st Week (Home) – Alexandria's Journey

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

6 Days Old (First Visit to Church)

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

Dec 232011

Lisa holding Alexandria

Alexandria had an “ok” day today, she did have two respiratory episodes, and a bunch of false alarms (sensor is giving us some issues on her foot). We have discovered that girls are “stealth pee-ers”. With the boys it was easy to know while changing a diaper if clothes/surrounding area needed cleaning because of the firehose effect, but with girls you don’t notice until it’s too late and you have to re-diaper, re-dress, and clean the blanket. I thought Kim was being silly when she mentioned that this happened to her yesterday (twice), however Alex stealth-peed a brand new outfit while I was getting her dressed this morning… still dunno how she pulled that off.

Gabriel is becoming more and more interested in Alexandria, wanting to know when she can play with him, why her eyes are always closed, why her hair sticks up, etc. She grabbed his finger with her hand today, which he thought was nice. No comments about the belly button today though, thankfully.

Pastor came by today to see how we were doing, prayed with us. We touched briefly on what the service would include, talked a bit about family that would be here when the time came. It was a good visit and good to see him. He and everyone from the church have been so supportive and we thank God for connecting us with them.

Alexandria’s pediatrician (Aden, Gabriel, and Ethan’s as well) called today and told Kim that he, “just couldn’t take it anymore he had to know what was going on.” He told her he promised himself he’d give us a week to settle in, but had to call and see if she was ok. I feel bad because one of his staff met with us in the hospital, I didn’t even think to follow up with his office. He has been a great doctor to the boys, having experience with children with disabilities (one of the reasons he was referred to us) and helped us with Aden immensely over the years. He’d like to avoid exposing Alexandria to anyone sick, so once he finishes his rounds at the hospital on Saturday he’s going to come to the house to check her out and see how she’s doing. A house call. Can you believe that? Truly an incredible doctor.

Heather holding Alexandria

Heather, Kim’s friend since the 6^th grade, came by today and spent a few hours at the house. She and Kim hovered over Alexandria enough that I stepped away to the den for a bit. It was a great visit for them and a good get-away for me. I probably should have gone to sleep, but decompressing was good. (It’s 3:30am at the moment, having second thoughts now though…) I’m bound and determined to get Kimberly a complete night’s sleep. She’s bound and determined to get me a complete night’s sleep. It’s a contest to see who’s more stubborn. 🙂

Yesterday we got Alexandria to church, which was one of those “really want her to get to do this at least once” things. Today we structured everything so we could all 6 of us sit down at the table together for dinner. The whole family. It sounds so morbid, but in reality we’re making a bucket list for Alex, things we want her to be able to experience while she’s here. As adults we think of this list and choose grandiose things like visiting Paris (something most of you know I’ll never do because they haven’t moved it to the continental United States yet), but for her we’re picking things we take for granted, like going to Church, eating as a family. I really want to open Christmas presents with her on Christmas day. I hope Kim and I can kiss her forehead at midnight on New Year’s Eve.

Alexandria attending church for the first time

5 Days Old

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

Dec 212011

Kim and I finally got some sleep last night (Tuesday night) and Kim was able to get some during the day today. Alexandria starting eating (drinking that is) like a champ around 7am, which was a significant change from her eating much less than normal on Tuesday. She had one cardiac episode where her heart was beating fast around 1am, but no serious respiratory episodes today.

Harry and Gretta, Kim’s parents, left for Midland this afternoon after helping us out for a week with the boys. They were incredible and it was great to have them here.

Aden and Ethan Looking in on Alexandria

I spoke with Jessica, one of our Hospice nurses today, who was checking in. She wasn’t in the office until this morning and is going to stop by on Friday. We spoke for a few moments about how well Alexandria is doing, and she agreed with Mary that this is more than likely a part of the “compensation” phase that they have seen in children with Trisomy 18. I asked for a little more information about that, how it works from a physiological aspect. She explained that one of the most common examples they see involves Patent Ductus Arteriosus. Before children are born their Aorta and Pulmonary Arteries are connected by a blood vessel. Shortly after birth, sometimes within a few hours to a few days, this duct closes in children of standard birth weight and genetics. Children with Trisomy 18 sometimes have this duct remain open, which compensates for a lack of blood flow to the lungs and the rest of the body. As she gets older they expect this duct to close, her blood flow to be lowered, and the episodes we saw early on to return. Her episodes early on were caused by her brain forgetting to tell her to breathe, this would be a different cause for low blood oxygenation. Still, it’s an unknown, maybe this will be a problem, maybe it will not.

Her health was so good that we talked about taking her to the service at church this evening… and finally decided to do so. It felt so good to have her there in Church. I felt like she was safe, that for a few moments we could let our guard down. It has been difficult for us to put her down, in fact she’s slept in our arms since she was born. While we were leaving church I was actually comfortable enough to ask a good friend for help and ask her to hold her. I knew she’d be ok for the few moments it took me to put Aden’s coat on him. That was the first non-blood relative non-medical person to touch her since the hospital. 🙂

We’ve read median survival is between 5 and 14.5 days. She’s passed the lower end of that spectrum and is doing terrific. I hope hospice is wrong. I hope the past performance is not a prediction of the future. I am treasuring every moment I have with her, like I said, I can’t put her down. She’s so fragile and so perfect. We are so blessed to have her. It was so normal to take her to church. 🙂

4 Days Old

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

Dec 202011

Ethan sneaking a peek at Alexandria

12pm

Alexandria has had a fairly good 30+ hours. She didn’t have any respiratory/cardiac incidents from Monday morning 6am until about 1pm today. She did stop eating the amounts she had been, but that has picked up a bit in the last 10 hours or so. I gave her her first at-home bath this morning, which did not make her happy. Gabe helped, and he’s continually asking if her belly button (which has not fallen off yet) is her pee pee. We’ve explained several times that it’s her belly button and that they all look like that when you’re very young, but he’s convinced it’s her pee pee (especially since no other pee pee is present). “Girls don’t have pee pee’s” has no effect. I said last night, “It’s her belly button and after a little while it’ll fall off”, which I immediately regretted, because Kim and I can both envision him witnessing it falling off and the inevitable panic of him thinking his own pee pee may fall off. Not looking forward to that conversation.

She has been very calm and not as active the last two days, but seems fairly normal behavior for a newborn. Mary (RN) from Hospice came by with Cheryl (Hospice Clergy) this morning to check her out. She isn’t dehydrated (a concern we had because of the spaces forming in the plates of her head). The spacing is normal, she is properly hydrated. She seems to be doing so well. Kim asked if this was the “compensation” time we talked about in the hospital and Mary said yes. I trust her judgment, but my heart just keeps telling me that she’ll defy all the odds, that she’ll be fine. I know the odds are against that. I know they tell me that it’s normal to feel that way. But they are very clear that her episodes will return, and that she won’t be with us. It is so hard to accept. I just hope we get more time.

2:30pm

Dawn, our hospice social worker, just came by and met with us. She’s begun preparing us for when Alex does pass, and asked us to consider what we would do concerning the boys if she passes in the night. Do we wake them, do we tell them in the morning after she’s been taken away. We think we’ll wake Gabe up, that he’ll need to see her and understand. Aden won’t understand in this setting, but probably will at the funeral home, if he sees her in the casket and we’re telling her goodbye. Not sure exactly what we’ll do, praying God will give us the understanding, guidance, and knowledge on how to help them understand without traumatizing them.

4pm

Aden’s sick. Gretta and Harry took him and Gabriel to the park while Dawn was here and he laid down on one of the playground equipment and didn’t want to move. (behavior we’ve seen before when he’s sick) He later pooped his pants at Meijer, another past indication of being sick. He’s resting in his room. “When it rains it pours” my mother always said.

—

Our church and some of our neighbors have been incredible, being us meals, etc. Harry and Gretta have been great caring for the boys this past week, please pray they have a safe trip home to Midland tomorrow. Thank you again to everyone. Photo I took this afternoon:

Alexandria, 4 days old

Christmas Carolers

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

Dec 192011

Tonight there was a knock on the front door and the sounds of singing on our front lawn. Doug was finally taking a nap. I opened the door and found a large group from our church – adults and children. I knew they were caroling in a nearby neighborhood but they had made a specific drive over just to see us. Somehow they all managed to park on our street without us hearing anything. I gathered the kids by the open door to watch and listen. I wanted to pick up Alexandria and have her there in the doorway too for everyone to see but it was much too cold for her. We then watched as a huge procession of cars left our neighborhood. I don’t know how we didn’t notice you all driving in.

I want all of you carolers to know that you not only touched our hearts tonight but also our neighbors. They recounted to us later that their dogs heard you outside. They looked out and saw you gathering on our front lawn. They stood in their doorway, completely taken in by your act of love, watching and crying while you sang “Silent Night” to us.