Alexandria’s Life – Alexandria's Journey

Video of her Journey

1st Month (After), After She Left, Alexandria's Life 6 Responses »

Feb 142012

We had 50 wonderful days to spend with Alexandria and I captured many of those moments on film, and I took enough pictures that Kimberly called me “the daddy paparazzi.” I put together a video of many of the moments and people who shared the journey with us, with her. It’s hard to believe that it was two weeks before I was comfortable allowing other people to hold her, so worried about how fragile she was… but she just had to be shared. The video begins with her birth and baptism and follows the timeline of her life, day by day. Below is an updated copy of that video, it’s best watched full screen but with 480p quality. I’ve found the youtube HD quality setting lags a bit (click on the snowflake looking icon in the lower right-hand corner after it starts playing):

50 Days Old (The day she went home)

8th Week (Home), Alexandria's Life 10 Responses »

Feb 072012

(Written at 4am the day after she was gone with editing the next few days)

Alexandria holding Doug's Hand (4:45am)

Alexandria had a rough Friday night, episodes throughout the night where her heart and her respiration would crash. It hurts so much knowing she’ll never fall in love, she’ll never get proposed too, never married. I so wanted to walk her down the aisle… that sounds so selfish now, but it’s been a dream I had. Kim and I pushed the couches face to face together so we could lay next to each other, but still have the safety net of the couch backs to keep ourselves from rolling around if we fell asleep. We traded her back and forth during the night.

Around 4am she and I danced around the living room for the last time. She didn’t step on my toes once. I could barely hum the tune through my tears, all I could think about was how it was the closest she and I would ever get to a father-daughter dance.

Kimberly kissing Alexandria (5am)

A little after 5am I began reading books to her, “One Duck Stuck”, and my favorite book “I love you all the time.” I had Kim video tape me reading to her. Her episodes were getting more frequent, but were spaced about an hour to 45 minutes apart. I decided to take a quick shower after one before 6am.

Around 7am the boys were beginning to wake up and I knew that Gabriel was not going to be able to handle seeing her have an episode. It would scare him at best, but more then likely give him nightmares for years to come. Her coughing and jump-starting back, especially as Kimberly and I cried and said how much we loved her every time it happened would be difficult for us to manage with him. We talked about where we thought would be best and decided that taking her upstairs would probably not be the best option. Our bedroom upstairs would be the only place we could take her, and how would we handle the memory of her dying in our bedroom in the years to come? We moved one of our couches into the office on the first floor, somewhere we could go and be secluded behind closed doors, but allow the kids to come downstairs and watch TV, play with their toys, etc.

Alexandria sleeping, wearing her cross (5am)

Alexandria, Douglas, reading I love you all the time, d50

Douglas reading to Alexandria (5:30am)

She had a few episodes between 7 and 8am. By now her pain was managed enough that she did not appear to be in any discomfort, but it was definitely stressful for her every time it happened. It is such a difficult thing to know that time is short, that the day is at hand, and this is all you get. This is it. But you push that back and hold her and love her and let her know how cherished she is.

She had a peaceful time for about an hour between 8:00 and 9:00am, but then had another, but brief, episode. Her heart dropped into the thirties and her respiration was difficult to measure. She then bounced back and held the 120sbpm and 20-30Brpm for a while. She seemed good. I was almost wondering if this was a good rally that might last. Kim decided to take a quick shower in hopes to get in and out quickly prior to the next episode. I laid down with Alexandria, and held her on my chest as I had for the last 49 days, snuggled in her “Daddy’s Sweetheart” onesie, wrapped in a blanket, snuggled up close. Around 9:45 she began to have an episode, but her heart went down pretty far, then began to shoot back up, then down. It wasn’t a pattern I had seen with this quick a change. I called Gretta and asked her to ask Kim to hurry, figuring she was probably done in the shower and could just come downstairs. Her heart dropped to 19, her breathing stopped. I got her up quick, grabbed the monitor and walked into the kitchen, and asked if Kim was on her way. Gretta told me she’d told her to hurry…

I paused for a second, considering our earlier conversation…. if this was it, and I take her up there, would Kim be mad? I figured she’d be more angry if she wasn’t there, so I went upstairs with her. The episode got worse, I knelt down on the floor and told Kim to come out, that she was having a very bad episode. Her heart dropped to 0. Her heart started again while Kim rushed out of the bathroom and joined us.

She died there in my arms. That was it. We would get no more time. I have never felt such pain and anguish.

We cried and held her back and forth for the longest time. I stepped out of the room only briefly to call Jessica. Jessica, thankfully, called Dawn, who showed up shortly thereafter. Unimaginable pain. Jessica showed up, and they both spent some time with us, comforting us, holding us together. She died at 10:00am, Jessica did second pronouncement at 10:54am.

Found Gabriel, explained that she had now died, took him up to see her. He asked why she was “green” (she wasn’t green, but it’s how he perceived her color at the time), why “she changed color”, and I explained that it was one of those things that happens when you die. You don’t eat, you don’t breathe, you don’t cry, etc. “She went to Jesus.” “Yes, she’s gone to be with Jesus.” “I’m so excited she came out of momma’s tummy!” “We were too, we love her very much, and we’re very sad that she’s gone.” “I’m not sad.” We didn’t press this response because we knew he didn’t understand, we’re sure he would as it sunk in. After a while of seeing her and talking with us he stood up and said, “I’m going now.” We told him OK, and he left with his signature, “OK, See you later! Have a good week!”

Found Aden, did the same thing. I knew he wouldn’t understand, but just as with Gabriel this is also his first cycle of life. Perhaps as others pass on he’ll begin to grasp and understand this confusing world around him. We signed to him, “she died.” He signed it back to us. We signed yes, she died, and he signed OK, then immediately stood up and left.

We sat with her for quite a while. Holding her, telling her everything we’d said while she was alive over and over. Unable to let go. No matter how much I wrapped her, no matter how close I held her, I just couldn’t warm her up. She was growing so cold.

We had purchased some pottery and paints from Naked Plates and we added her hand-prints and footprints to them. Later on we’ll add the other children’s. We did the same with some glass Christmas ornaments as well.

I gave Alexandria the first bath she had when we came home, and I gave her the last bath now. She hated baths, always squirming, until I got to rinsing her. I’d get the water at just the right temperature and then gently hold her under the flow of water. She was never as calm as when I was rinsing her during bath… I think being surrounded by the warm water reminded her of being with Kimberly.

I dressed her in one of her favorite outfits and wrapped her up tight in her blanket. Kim and I spent some more time saying goodbye. Around 1:30pm we called Metcalf to come and get her body. We were told by Dawn that they would probably want to pick her up and transport her in her carseat. Kim was very afraid that Gabe would misunderstand that and think she was still alive and just going somewhere in the car. We decided to send her with them in her casket, so I placed it in the dining room before bringing her downstairs.

I brought Alexandria downstairs took her into our living room for one last goodbye with the boys. Ethan walked up, “Baby.” “Yes, baby Alexandria.” “Baby.” .. He smiled and he walked away. I later told Kim that Ethan would probably be a great reminder of her in the days and weeks to come, saying “baby” and probably looking for her.

When Metcalf arrived I asked Gabriel if he wanted to help lay Alexandria to rest in her casket and he said yes. We walked over and laid her down. We slowly closed the lid and he asked me for the key. He wanted to lock the casket, and I let him. I then asked him for the key back, which he surrendered. 4 years olds have such short memories and wild imaginations… we took pictures of the goodbye so that down the line, when he can’t remember, we can show him that she didn’t just disappear, that she finally did pass into God’s hands and we said goodbye and let her go…

Douglas with Gabriel, carrying Alexandria in her casket

Douglas with Gabriel, carrying Alexandria's casket to the funeral director's car.

I carried her casket out to the car and passed her body into the hands of the funeral director in the front seat. I handed him the key, but told him, “When this is all over, I’m going to want this back.” The key to our treasure belongs to us.

And she was gone.

Ethan and Harry watching through the window as Alexandria leaves

Alexandria Kimberly Vogt, December 16th, 2011 – February 4th, 2012

8th Week (Home), Alexandria's Life 27 Responses »

Feb 042012

Alexandria Kimberly Vogt

Miss Alexandria Kimberly Vogt passed away on February 4, 2012, in her parents’ arms at home in Grand Rapids, Michigan being aged 1 month and 19 days. Alexandria was born in Grand Rapids on December 16th, 2011 at 4:26pm weighing 4lbs 12oz. She was baptized that very day at approximately 4:29pm. In her short time here she brought her family and friends immense joy and love. She enjoyed being sung to, hearing stories told by her Daddy, being wrapped in blankets made by her Momma, going to church, and getting up in the middle of the night. On December 21, 2011 she attended her first church service at St Matthew Lutheran Church. She celebrated her 1 week birthday surrounded by family who continued to celebrate with her through Christmas. At midnight on New Year’s Eve she was kissed by both of her parents; marking her life as one lived in two separate years. January 16^th Alexandria greeted guests for her 1 month birthday with a gala event filled with family and friends who enjoyed cake and ice cream with her. Snuggling with her parents was her favorite activity, having never slept anywhere but in their arms her entire life.

She will be greeted in Heaven by her brother, Matthew Douglas Vogt, who passed in 2006; and her paternal grandparents Dr. James Robert and Shirley Robertson Vogt. Alexandria will be mourned on earth by her parents Douglas and Kimberly who love her dearly; her brothers Aden, Gabriel, and Ethan, all at home; maternal grandparents Harry and Loretta Toner of Midland; maternal great-grandmother Goldie Toner of Midland; grandparents Charles and Margaret Bash also of Midland; along with many uncles, aunts, cousins, and dear friends who survive her.

Memorial services will be held the morning of Wednesday February 8th, 2012 at 10:30am at St. Matthew Lutheran Church in Grand Rapids. Visitation will be at Metcalf and Jonkhoff Funeral Services on Tuesday February 7th, from 4:00pm to 7:00pm, and one hour prior to the service at the church on Wednesday. Interment will follow at Roselawn Memorial Garden in Saginaw, Michigan at 3pm. Metcalf and Jonkhoff Funeral Service, Grand Rapids, (616) 940-7333, will be handling arrangements. Memorials may be donated to St. Matthew Lutheran Church in her memory.

Her parents wish to thank Hospice of Michigan, especially Jessica Johnston and Dawn VanDerKolk from HoM, Dr. William Bush of Forest Hills Pediatrics, the labor and delivery staff at Spectrum Butterworth, their church family at St. Matthew’s, all of their family, friends, and neighbors who supported, prayed, and held them and Alexandria up during her wonderful life. Only God could love you more baby girl.

50 Days Old (8:30am)

8th Week (Home), Alexandria's Life 1 Response »

Feb 042012

Very hard night. Many episodes. Alexandria continues to fight, she is the strongest, most beautiful girl I have ever known.

49 Days Old (After 4pm)

7th Week (Home), Alexandria's Life No Responses »

Feb 032012

Aden and Alexandria

(This was partially written the morning of her 50th day while Alexandria slept on Kim, and partially in the middle of the night after her passing)

With Alexandria’s episodes becoming more pronounced I knew it would be difficult for us to handle Gabriel and Ethan during those episodes. I took them over to Amber and Joy’s house across the street so they could play with Ellery and Emerson until Harry and Gretta got here. They have been such good friends and we’re very blessed to have friends that close. Aden came home from school shortley after, but we kept him home because he’s fairly self-sufficient in his “after school” pattern.

Douglas and Alexandria

After a few rough episodes we decided it would be good to let Aden and Gabriel hold her again. I gave Aden the opportunity to hold her and he was thrilled, but decided on his own that he was done. I went over and got Gabriel, brought him home so he could hold her, and then took him back to Amber and Joy’s.

I picked them up around 6:30pm or so, got Aden some dinner, then put all three of them to bed.

Gabriel and Alexandria

Gretta and Harry arrived shortley before 6pm and they held Alexandria for a while, and stayed up with us late while Alexandria had several episodes. They seemed painful to me, her breathing would slow, her heart would slow, and she’d snap back. When she snapped back she’d cry… and I just couldn’t take that. I did not want her last moments to be in pain like this. I had forgotten how heart wrenching the episodes in the hospital were… I called hospice and I asked them if we could increase her morphine dossage, and after speaking with Dr. B they gave us new instructions to help keep her comfortable. There was one point near 11pm where we were sure she was leaving, called hospice to have Jessica come out, but she snapped back and we cancelled having Jessica come out.

Harry and Alexandria

Aden and Alexandria

Gretta and Alexandria

49 Days Old (4pm)

7th Week (Home) 8 Responses »

Feb 032012

Much has happened today. I will fill in with more text and pictures later.

Uncle Bill and Cousin Mary came all the way from Virginia to see her and were such a blessing to have here and we are so happy they were able to meet her.

Alexandria is beginning to have small but continuing episodes. We called her grandparents and told them it is time to say goodbye.

Douglas

49 Days Old (before 4pm)

7th Week (Home), Alexandria's Life No Responses »

Feb 032012

(Wrote this during the morning of the 4th, while Alexandria had an hour long stable run sleeping on Kim)

Uncle Bill and Alexandria

The night of the 2nd was a pretty rough night and we had to give Alexandria morphine regularly for comfort. Late in the day yesterday my Aunt San told me that my Uncle Bill and Cousin Mary and her children were driving up from Alexandria. They drove through the night and arrived around 10m. It was great to see them, Gabriel loves playing with his cousins William, Army, and Blake. The four of them are a rambucious group, it was funny how their energy just seemed to feed each other into a frensy. Gabriel brought up his baby (Monkey stuffed animal) that wasn’t going to die, that was going to stay with us. He continues to try and process what’s going on…

Mary, Alexandria, Blake

Mary and Alexandria

Mary, Reid, Kimberly, Alexandria (skype) d49

Alexandria on her first international Skype call to Cousin Reid overseas

My cousin Reid, Mary’s husband, could not come with them because he’s on assignment overseas. Mary had the great idea of Skyping him and Alexandria had her first internetational live conference call. 🙂 Didn’t think about putting that on her bucket list, but damn glad we did it. It was good to see Reid and give him the opportunity to meet Alexandria.

Mary and Alexandria

Jessica (hospice nurse) called after lunch and we asked her to come out. Alexandria had been having gas pains all evening and all morning and it was really beginning to be a problem for her. We wanted to talk about changing her formula, and some of her feeding problems, along with the mini-apnea episodes we’d seen. She let us know that the gas problems were common, especially at this stage, and were more then likely caused by her body not getting the circulation it needed to her digestive system. Her body just couldn’t process the food in large quantities any longer, which was another reason she wasn’t eating. It was part of the process of her body shutting down. That was difficult to hear, but with the other signs we see it was clear that was happening. We decided against putting in a feeding tube, because it would make her considerably uncomfortable, and since her body wouldn’t be able to process the food it would cause more problems then it solved. She was hydrated, so her body was able to process enough to sustain her, but only a very small amount was what she needs now. We began using a siringe to drop small drops of formula in her mouth every now and then to keep her hydrated.

Douglas holding Alexandria while Jessica checks her heart

I asked Jessica, with what she saw, if she felt Alexandria still had days. She just frowned and shook her head. I knew she was right, I didn’t think she did either. I asked only in hopes of being wrong.

As the day progressed her episodes began to get more frequent, and slightly worse dips. Mary and Uncle Bill saw her turn light purple once and were shocked at the transformation, and how quickly she pinked up after it was done. It was the first time we’ve seen color change in her face of that maginitute in weeks. Shortly before 4pm I called Alexandria’s grandparents and told them it was time to come and say goodbye, that we did not think she’d live through the weekend and perhaps not even the night.

Army and Blake looking at Alexandria, held by Mary

Although they had driven all night to see her, Uncle Bill, Mary, and family had to return the same day. 🙁 We were sad to see them go, but were absolutely thrilled that they were able to come and meet her. Before leaving Mary prayed with us over Alexandra while she held her…. I hope she knows how incredibly comforting her words were. Afterwards she said, “I can see what you mean now, about her being perfect, I get it now, she doesn’t even seem sick, and she’s just beautiful and perfect.” Amid tears and farewells they left around quarter to 4.

Kim, Alexandria, Army, William, Gabriel, Blake, Mary, Ethan

My Uncle Bill is a wood worker, among many other trades and hobbies. He’s one of the main reasons I took up woodworking, although he probably doesn’t know that. He knew that I had built her casket and wanted to see it before he left. He told me it was beautiful work, which was nice to hear. He also thought Gretta did a fantastic job on the inside and told me to tell her so.

They left amid tears and we turned out attention to Gabriel and Ethan…

Gabriel, Kimberly, Alexandria, Douglas, Ethan

48 Days Old (9pm)

7th Week (Home), Alexandria's Life 3 Responses »

Feb 022012

(This is a long note, a lot happened today, sorry for the rambling)

Ellery, Alexandria, and Joy

Alexandria had a very hard day for most of today. She continues to be very congested and her cough sounds very rough and deep. We had some people ask if they could come over and Kim and I decided that it would be ok. I’m unable to verbalize that they came to say goodbye. None of them said they came to say goodbye. A few friends are going on vacation and behind the scenes, knowing what we all know, we know it was probably goodbye…. but never spoken.

I’m sure I’ve said this before, but we have the greatest neighborhood friends, some of them came over tonight as well. All of them offered to take the kids if we need some time, which considering the amount of damage our three boys can inflict, is very kind.

Amber and Alexandria

Amber, Joy, & Ellery came by in the early afternoon. Gabriel was thrilled to see Ellery. They are very close in age. When they were leaving they offered to take Gabriel for a bit.

Side Story, Gabriel the Rock Hound:

After getting his jacket on he realized that he had all of the rocks he’d been collecting for Ellery in his jacket pockets and began giving handfuls of rocks to all three of them. You see, last summer we went on a bike ride with Amber and Ellery down the street and back and Ellery found a few rocks she liked. She put them in her bike, and when Gabriel inquired Amber told him she liked rocks. Since then he’s been coming home from school with pockets full of rocks… I come home from work and find small piles of rocks, they were on the deck for a while, laundry, you name it. Today he finally got to deliver some of them. 🙂

Pastor, Alexandria, and Kimberly

My foster parents came by to visit this afternoon as well. They are in town because my foster sister, who had a kidney transplant a few years ago, is in rejection and in the local hospital here. If you’re reading this, she, Bonnie Bash, could use your prayers.

After everyone left, Alexandria began to go downhill for a while. Her heart dropped to around 80 bpm, at one point dropping below 70 for a moment or two. Her respiration dropped as well, into the 20s. She stabalized to her recent “norms” after about an hour.

I had started to write Alexandria’s obituary before she was born. I didn’t want to write it in a state of extreme grief, I wanted to write a good portion of it while I was calm. I opened it today for the first time since she was born. I read a few things to Kimberly, asked her about wording on some things…. I haven’t cried uncontrollably since we brought her home… I think because for the most part I didn’t believe she was leaving. As I read the words I’d written, I think everything began to sink in. The permanency of her death that we were trying to help Gabriel to grasp, began to take a hold of me. I started to lose it. A few moments later Pastor called and asked if now was a good time for him to stop by, that he was about 5 minutes away. The good Lord has timing. Pastor arrived, talked with us, prayed with us, comforted us. He offered us the chance to offer up any prayers we had, but I knew I wouldn’t verbalize them… at least not loud enough for him or Kimberly to hear. I didn’t want to look like a fool… but all I kept saying to myself was, “heal her Lord, heal her, save her.” Begging. I couldn’t hold it together for most of the afternoon, even fell apart a bit in front of a friend from work… not good.

Around 6:30 our friends Todd and Senait came by to see her, it was good to see them, because of sickness it had been a while. 🙁 No fun when everyone’s kids are coming down with the one thing or another.

Todd and Alexandria

My Uncle Bill, cousin Mary, and family are on their way here from Virginia. It will be very good to see them all.

Alexandria’s heart has begun to drop again, hovering between 80-90 tonight, getting as low as 67bpm. While Pastor was here he asked me what I was thinking. I know we’re blessed with the time we have, but it’s not enough time. I need more.

48 Days Old (10am)

7th Week (Home), Alexandria's Life 2 Responses »

Feb 022012

Before bed last night, as I was leaving after tucking Gabriel in, he said, “wait wait wait, I need to talk to you about baby Alex!!!”. I laid down next to him for a while and answered his questions.

“How did it happen?”

“I don’t know, but it did and we just need to love her while she’s here.”

“Why is her heart swooshing the wrong way?” (thining to myself, WOW, that boy has ears… glad we’re treading lightly as we talk to other people near him)

“Well, I don’t know why her heart started swooshing the wrong way, but that won’t happen to you, me, momma, or your brothers.”

“You were crying about baby Alex.”

“Yes, I cry because I am going to miss her, and I am very sad that she is going to die.”

“I am very sad too.”

“I know, and that’s ok, it’s ok to be sad.’

—–

Alexandria was up a few times during the night. We gave her morphine a few times to calm her down, keep her comfortable. for a good part of the night her heart stayed in the mid-90 bpms (130 is normal). She’s hovering around 100, 102 right now, but her color is a little better then it was last night…. still very weak. Her cough, when she has the energy to cough, sounds horrible. My cold feels like it’s moving into my lungs, I’m about a day behind her so I wonder if that’s what she’s feeling. She’s sleeping peacefully on my chest at the moment. I fell asleep in the chair with her after Aden got on the bus and awoke to see Gabriel laying on the couch with his monkey stuff animal in much the same position that Alexandria was on my chest. He told me, “This is my baby, she’s very fragile. She’s got some hurts, but they healing. She’s not gonna die, baby Alex is going to die but not my baby.” He’s walking around with Monkey this morning, explaining how fragile he is, where his ouchies are. He began to tell us how his baby had already died, but got better. Kim and I had a conversation with him explaining that you only die once and that it’s permanent. It’s a conversation we’ve had before with him, but he needs gentle reminders to help him grasp the concept. We’re being very careful with him, very delecate.

47 Days Old

7th Week (Home), Alexandria's Life 5 Responses »

Feb 012012

Alexandria in her TuTu with Fairy Wand

Alexandria woke up around 8am fairly weak and very pale. She isn’t eating nearly as much as she used too, and when she does it tires her out considerably. Kimberly gave her a bath, and she perked up a bit, enough to put on the Tutu that she and Lindsey made her a few days ago. Kim even threw in the fairy wand Heather gave her for her one month birthday. 🙂 The picture to the left is one I took two days ago, when she was alert and feeling better.

Jessica (hospice nurse) called this morning and was in a car accident, but even so she still came by the house to see Alexandria. Jessica was away since last week, so we explained everything that has happened over the last few days. We talked about Dr. B coming last night, what he heard in her heart, and she checked her out as well. She could also hear the loud swooshing in her heart today. While she was here Alexandria was very pale, and clearly having the same circulatory issues she was yesterday. She is even more pale this evening. Jessica believes that we are now looking at days, not weeks… and I think she’s right. Alexandria is showing many of the same signs I saw in mom’s last days. Reality is beginning to set-in again.

Jessica checking Alexandria's heart

My foster father, Charlie, called tonight and we talked a bit about Alexandria and how Kim and I are holding out. In reading my posts he’s worried that I’m on the verge of panic. I don’t think I am, although my posts may be communicating that. I’m in pain, but I’d say I’m calm. I’ve been on this walk before… I know what to do… I know the kids, Gabriel especially, are going to need me to help them through this.

I talk to Alexandria, I let her know how much we love her… and pray that God is telling her what’s to come, keeping pain from her (on top of the Morphine we’re giving her), and holding her close. We have an incredible support network, so many friends, family, and church members that are holding us up. We are so very blessed by those that God has sent to help us.

Alexandria and Douglas

46 Days Old

7th Week (Home), Alexandria's Life 6 Responses »

Jan 312012

Every now and then Alexandria will wake up, open her eyes, and be perfect lucid. She’ll look around, and act like she doesn’t have a care in the world… these are the moments I think to myself, “She’s fine, she seems just fine.” She had a moment like that last night, around 10pm. Kim was holding her and I grabbed my camera to take some video. She had such a bad day yesterday, then for a few brief moments at night was perfectly happy.

It did not last though. For the better part of today Alexandria did not have a good day. She was pale, congested, and unhappy. Dr. B, Alexandria’s pediatrician, called the house around 6:30pm this evening and told Kim, “I don’t know why but something just kept telling me I had to call today.” He said he’d thought about her all day and had to call. We talked briefly and he decided to come by the house and arrived around 7pm. Again, a doctor that makes house calls, and at 7pm, what a fantastic blessing. He listened to her heart and he heard the same murmur that Jessica (hospice nurse) and I have both heard. He said there was no mistaking that her heart was not operating in the same way it was a few weeks prior. When I listen to it the swoosh sound is overwhelming, almost to the point of drowning out the beats. He checked her skin/feet and as we feared her circulation is not good. He did feel that she was fighting the cold off better then he thought she would be, even though she’s very congested.

Kim and I have had many talks about what we would do if her heart became a problem. Do we have surgery or not… In the end we’ve decided we don’t want to put her through the pain of open heart surgery, and we do not want to risk her dying alone on an operating table cut open. But, I did ask what he thought was possible, could surgery fix the problem, what would her chances be. With her apnea, which is a brain centered apnea (her brain forgets to tell her body to breathe) and not a mechanical type of apnea, her other trisomy 18 related conditions, he does not believe she’d survive surgery. He also wouldn’t put her through that pain, which he has seen children go through before, and it is very painful surgery. It was good to hear from someone else, a professional, that Kim and I seemed to be making the right choices.

It is such a horrible feeling to fear you aren’t doing enough for your child. Sometimes I think, “My God how can I think of not trying to fix this to help her live longer.” To make this choice and pray you can live with it. To pray that I’m doing the right thing, choosing for her to live warm, loved, and surrounded by family, without feeling that I’m choosing for her to die. That I am sentencing her to death. When my mother was in hospice, a few days before she passed, she began to forget what was happening. One afternoon I had gone into another room to fall apart in private and my sister came in and said, “Mom has woken up and she’s asking what’s going on.” I had to pull myself together, go back to her bedside calmly and explain to her that she was dying. Why she was dying. What decisions she’d made about her medical care. Comfort her and help her understand reality. I cannot do that this time. I have no way to explain to Alexandria what’s happening to her, why it’s happening to her. I hold her and I can’t keep it together. I try so hard to comfort her, but there’s no way for me to help her understand…. hell I don’t understand. I want to know I’m doing the right thing. I want my little girl to believe I’m making the right choices. I am so afraid that she won’t understand, that she’ll think, “why didn’t you do more daddy?” I am overwhelmed with fear, pain, and guilt.

People tell me I should sleep. If you watch that video, you’ll understand why I don’t. I’m not going to get many moments like that. Moments I can look her in the eyes, while she’s awake, tell her I love her, tell her I’m trying to do right, and ask her not to go. Who’d ever want to chance missing those moments?

45 Days Old (Update)

7th Week (Home), Alexandria's Life 2 Responses »

Jan 302012

One proud brother

An unexpected kiss

Aden and Alexandria

Early this morning, around 7am, Alexandria’s breathing stopped briefly and the alarms went off. I rubbed her back, talked with her, and she started right back up, but it was a scare. It was the only occurance today. When I went to call Kim the phone had run out of battery life so I ended up yelling and banging on the wall till she heard me. Her color most of the morning was gray, but she pinked-up after lunch. Dawn (social worker) from Hospice came by around 1pm, Jessica (nurse) is going to come by on Wednesday. Dawn, Kim, and I talked about Hospice costs. Kim and I are considering paying for Children’s Special Health, something we haven’t done since Aden was a baby, to help offset what our primary insurance doesn’t pay for.

Alexandria was fragile enough today that I didn’t offer the very nice people who came with a meal if they wanted to hold her. I didn’t want to introduce anything new to her immune system, they left so quickly I didn’t get a chance to explain, I hope they understand. She’s quite weak tonight, pink, but drained. If only her sinuses would drain like her energy has. She’s still producing lots of flem, a phase of the cold I thought she has passed by… but definately not.

Aden was interested in holding Alexandria tonight, as you can see above. I wasn’t about to stop that, it’s the first time. For the most part he’s ignored her, but there’s clearly an attachment beneith the surface, I was stunned when he leaned down and kissed her. He is very touch sensative and rarely kisses anyone, even Kimberly and I.

45 Days Old

7th Week (Home), Alexandria's Life 3 Responses »

Jan 302012

Alexandria continues to fight her cold. I was certain on Saturday that she was winning and getting better, her color was better, she was breathing better, etc. However, yesterday her color was very gray for a good part of the day and she was weak. She started coughing late last night and this morning (3-4am) she’s coughing a lot more. Beginning around 3 she was very wide eyed, coughing right when she woke up, but peaceful for the most part. She has the most beautiful eyes.

Aden and Gabriel returned home from grandma and grandpa’s house last night. Gabriel came over to Alexandria just before bed to “pet” her, and as I was getting Ethan to bed he came in to hug him. He’s a very loving kid, such a large and open heart. I am so afraid of how this experience will affect him, but am hopeful God will continue to hold his heart open through and beyond this experience.

I’ve been reading more and more stories of families that have children with Trisomy 18 that are surviving/thriving even after their 1st birthday. I realize that the statistics are against us, but we’ve never been one to follow the bell curve… I asked Kim tonight when will we decide that she’s not dying, but living… when will we decide she’s not in hospice any longer. I almost feel manic at times. I have moments of pure clarity that she’s going to be fine, like now, after seeing her fight so well against this cold and look at me with those huge blue eyes. It’s almost like she’s telling me, “I’m not going anywhere dad, you can go to sleep, I’m fine.” Then there are moments, similar to 24 hours ago when she’s breathing shallow, grey, that I am convinced she really is leaving sometime soon. Extreme highs of love and joy, holding her, spending time with her are coupled with devastating lows… you can feel your heart tear a bit. The stress that goes with those swings is palatable, tiring.

I know that families, marriages, can be destroyed by situations like this. Kimberly and I know quite a few families that contain children with special needs that have broken apart. A few people have written me to caution me, to guard against the stresses that can occur, and I appreciate that. I’m not going anywhere. They are everything to me, and I appreciate the concern from those looking out for us. It’s not to say Kimberly and I don’t have arguments, or that we don’t snap at each other from time to time, we’re a normal married couple. Prayers for strength are greatly appreciated. I pray often that God will help me be a good father, be a good husband, to be what they need me to be.

At some point I should probably go back and re-read most of these posts and fix the spelling/grammatical errors… Kim tells me that my sleep deprived posts aren’t always spot-on…. I hope the message gets through though. 🙂

43 Days Old (Update)

7th Week (Home), Alexandria's Life 3 Responses »

Jan 282012

Kimberly and Alexandria - Taken when Alexandria was 36 days old.

I ended up giving Alexandria another dose of morphine around 6am. Around 6:30 I couldn’t stay awake any longer and traded off with Kimberly. She had a fairly good day, and around 9pm this evening her color began to look much better then it did yesterday. She’s weak, but fighting hard, it would appear that her immune system is definately kicking in.

43 Days Young (First Morphine)

7th Week (Home), Alexandria's Life 3 Responses »

Jan 282012

3:30 am, Saturday January 28th. We just gave Alexandria morphine for the first time.

This morning (Friday morning) Alexandria began to get congested. As the day wore on her congestion became worse. We noticed yesterday that some of the boys had the startings of a runny nose. A cold is running through the house and she has it as well. Shortly after Lindsey left this afternoon it was clear she was having difficulty breathing. By midnight (4 hours ago) she was really having issues and crying a great deal. Around 12:30am I called Kim to come downstairs. Alex’s heart rate had pushed above 200, she was miserable, and it almost sounded like her lungs were full of water. I had Kim get my stethescope and listened to her lungs, they didn’t sound raspy, but it sure felt like the congestion had moved to her chest. We called hospice and waited for the call-back. Jessica is out of town, so we knew it would be Mary. Mary called us a few minutes later and by then Alexandria was in one of her calm moments and it was clear the congestion wasn’t in her lungs. I apologized to Mary for waking her up, saying it was a false alarm and that her lungs weren’t causing her pain like I’d thought. I told her everything that had happened all night. Mary let us know that using the morphine to calm her down and get her heart rate under control was appropriate and if she had another long episode to give her a dosage. Kim went back to bed and Alexandria and I went back to watching specials on the Bermudia Triangle on the history channel. For the next few hours she fussed here and there, nothing like long spells before, mostly tossing and turning. By 3am she began to have considerable trouble breathing, her crying was exasperating the situation, and I was using the nose sucker to take out a lot of mucus to try and help her breath. She is so small and seemed to be in so much pain.

I got angry. I just don’t understand this plan. I began to bargain. I began to ask for trades.

Her heart rate climbed into the 190s and I called Kim. I cleaned out her sinuses again and we gave her .1ml of morphine. She’s been calm and sleeping for 30 minutes now, first good sleep in hours. Her heart is back down to 125bpm and she’s breathing fine now.

42 Days Old

6th Week (Home), Alexandria's Life 2 Responses »

Jan 272012

Sydney and Alexandria

It continues to be an up and down week. On Wednesday Debbie and her daughter Sydney from church brought us a meal and spent some time with Alexandria. It didn’t occur to me how teenagers think about Alexandria’s condition until Sydney was holding her. When I was kid plenty of adults died, but no children, and definately no child I had ever held in my arms. With Gabriel we know that he doesn’t really get it, the impact isn’t there, yet. Teenagers have the ability to grasp mortality… I never really thought of the conversations that probably occur before people bring their children here. I bet those aren’t easy.

On Thursday Harry and Gretta came to pick up Aden and Gabriel for a few days. Kim saw her doctor and among other things had a discussion about birth control. Kim told her that I’m not looking to have any additional kids and looking to have surgery to prevent it… (why don’t I want to type the word vasectomy? Interesting…) Anyway, her doctor told her that doing so would probably not be a good idea at this time. We’re emotional (I’m emotional) and it’s not the best time to make that decision. I just don’t ever see my decision changing. I can’t see another child go through this. I just can’t risk it. Kim’s been researching a mutation around the MTHFR gene and how women with this mutation can have occurances of Trisomy 18, but it can be countered somewhat with high doses of folic acid. We’ve had the genetic testing and Kim and I checked out “ok”, but we did not have a test for this specific gene. Either way, even if we did test positive for it, I still do not see any situation where I would chance this again.

Gretta and Alexandria

Harry and Alexandria

Today a friend of ours, Lindsey, came over to meet Alexandria. She worked with Kimberly, and later with me, at Meijer. She gave Alexandria a large wooden letter “A” that she’d pasted pictures from our facebook site on, it was very touching (picture to come). She also brought a bunch of fabric and she and Kim made Alexandria a TuTu. 🙂

Lindsey and Alexandria

Kimberly and Lindsey making a tutu

39 Days Old

6th Week (Home), Alexandria's Life No Responses »

Jan 242012

It’s been a roller-coaster week this week. On Sunday we took her to church and I shocked a couple of people by allowing them to take and hold her for a moment. 🙂 It only took 5 weeks, but I’m becoming comfortable with allowing others to hold her a little more then I was. She cried at church for the first time and there were a few people that said, “Wow she does make noise!” She became calm enough later though that someone else who hadn’t been there for the screaming asked if she ever fussed. I told them yes, but usually around 1 to 3 in the morning. Sunday night during bible study I handed her around, much to the shock of some people there as well (where all the pictures from this post come from).

We’re still holding her all the time. A few people find it difficult to understand, even a good friend of mine. He has told me he wouldn’t do that, but I bet if he was in my situation that may not entirely be the case. If her whole life is one of being held, warm, and comfortable in our arms then that’s a pretty good run… Yeah, we don’t sleep well and it can be very tiring, but it’s worth it. Kim and I trade off nights and have attempted to put together a schedule that we can sustain long term, we’ll see how that goes.

Monday was a “fair” day, she was a little weaker, and slightly pale, but not like the start of last week. Dawn and Jessica came from Hospice, and Cheryl (a clergywoman) from hospice also dropped by. Jessica can hear a heart murmur now, and we continue to see an abnormal heart rhythm. We talked with her about how we’ve seen her progress and wondered if “having some bad days, then plateau for a while, then have some bad days, then plateau for a while” was normal, and they have seen this before.

She had a racing heart last night, and this afternoon she’s quite pale, her hands and arms especially.

More pictures of Alexandria at Bible Study:

36 Days Old

5th Week (Home), Alexandria's Life 2 Responses »

Jan 212012

Terry, Alexandria, and Brendan

About a year ago Kim and I were made aware of the Michigan State University Longitudinal Patient-Centered Experience program. This is a program where first and second year medical students get to follow a patient with a chronic health condition and visit with this patient over the course of a year. We felt it was a good opportunity to share with future doctors the experience of children with special needs and their families, so we volunteered to be in the program. We were assigned a pair of students, Brendan and Terry, and they visited us every other month or so for the year. Each visit they were given a theme and questions by their instructors. As the year progressed we shared with them everything about what doctors did correctly, mistakes that they have made, how insurance had worked(and not worked), what many of our challenges and experiences with Aden were, etc. We wanted to make sure they had a clear picture of the murky unknown waters we sail through on a daily basis. 🙂 It was a unique experience to have them in the house, they were given the opportunity not only to see Aden, but see how he interacts with his siblings, how he took some time to get to know them, all the little quirks that go with the package.

We let them know when Kimberly was pregnant, which steered into conversations about Matthew, Gabriel, and Ethan.

Terry and Alexandria

We shared with them when things became more clear and that Alexandria was not well. We kept them in the loop and gave them the picture of our newest experience.

I am hopeful that we had a good impact, and that it helps them when a child with special needs ends up in their office/ER. They were fantastic and we learned a lot from them as well. Our year-long endeavor ended last December.

Today they came by to visit and meet Alexandria. It was a great visit and good to see them again.

Alexandria and Brendan

—-

All in all today was a great day. She stayed in the “normal” for a good part of the day and was warm for most of it as well. Kim has started calling me the “daddy paparazzi” because of the number of photos I take. 🙂

Kimberly and Alexandria (36 Days Old)

34 Days Old

5th Week (Home), Alexandria's Life 2 Responses »

Jan 192012

Alexandria 34 Days Old

Alexandria has been slowly getting worse since Monday. She has moments of “being fine” though, and for a good part of Tuesday she was good. She continues to have bradycardia (slowing heart). Yesterday Kim and I noticed that for a little while her hands and arms were almost white. She has begun “snacking”, eating a very small amount at a time, but eating more frequently… this is because eating is tiring her out. Last night she had a very fussy time, crying quite a bit, and her heart rate began to rise. Around 10:30pm or so we called Hospice because her heart rate rose a few times over 220bpm (very high), enough to set off the alarms. During our conversation with Jessica, Alexandria started to pass some gas. Kim went to the store and bought her mylicon (for gas) and this eventually helped her calm down. Our hope is that the gas and anxiety of it is what caused her heart to race so much… it was the closest we’d come to giving her morphine. She was crying so much, her heart rate was racing, she seemed like she was in pain…

To complicate things, although I absolutely want her to be comfortable, I can’t help thinking about the feeding tube incident in the hospital. I ordered that and she had her first close call with death. I know now that it was a coincidence, but at the time it was devastating and terrifying. What if I gave her the morphine and she died? I brought those worries to Jessica’s attention and she assured me that it wouldn’t hurt her.

This was the first time I’d even considered she may die in pain. When my mother was in hospice she died slowly, but on pain medication, and it was what I would consider a peaceful death. Last night, with Alexandria crying in pain, her heart racing, the alarm going, I was horrified to think this may be how she passes. Not quietly in my arms like Mom, but crying in pain having a heart attack. I do not know how to face that. It never crossed my mind until late last night, that this… that “that” death was even a possibility. I will always be there for her, I will always hold her and comfort her, I know I can do that. But I don’t know how I’m going to get passed this.

On a lighter note, could you imagine almost giving your daughter morphine because she had gas pains? That’s almost comical.

Tonight has been a good night, she’s got good color, awake and opened eyed. Kim and I love when she has moments like that.

Gabriel holding a very sleepy Alexandria

Alexandria thinking "You woke me up... oh you are so going to pay for this..."

Alexandria thinking... "Yeah... bring that finger just a little closer...

*CHOMP*

1 Month Birthday Pictures

4th Week (Home), Alexandria's Life 3 Responses »

Jan 182012

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

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.

27 Days Old

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

Jan 122012

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.

26 Days Old

3rd Week (Home), Alexandria's Life No Responses »

Jan 112012

3 Weeks Old

3rd Week (Home), Alexandria's Life No Responses »

Jan 072012

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

Preface: After reading this the note seems to be a lot about me, and I apologize for that. I’m experiencing something I’m not accustom too, spoken to Kim about it briefly, but perhaps I need help grasping this.

Alexandria turned three weeks old today (Friday, January 6th). The last few days have been good for her, she hasn’t had a full-blown episode (cardiac or respiratory) in a week now. She’s eating, she’s… processing food like any other child, she sleeps. She seems so healthy to me.

I had lunch with one of my closest friends this week, although he doesn’t know what to do with me when I cry he’s straight forward and blunt when I need it. I’ve told him how I feel, that I no longer feel that she’s dying, that I have this strange peace about her now, like everything will be ok. He’s clear and tells me, in no uncertain terms, that I’m probably wrong and that the fall I’m headed for is a big one. I know I should feel he’s right, but I don’t, and that scares me a bit. More on that:

I’m sure there are people who would disagree, but I tend to think I’m a fairly rational guy most of the time. Part of my job is to assemble facts, opinions, distinguish between the two and then make judgment calls. Do we design the system “this way” or “that way”. Do we choose technology “A” or go down the path of technology “B”. I make a call and I can rationally back that choice up, I make sure to have my ducks in a row before I walk into meeting/review/fire-fight. So here I have friends, doctors, nurses, my wife, everyone I have ever trusted telling me that she’s going to die. My heart STILL tells me, “Nah, they’re wrong, she’s going to be fine.” I am absolutely serious about that. Don’t get me wrong here, I know she’s going to have physical and mental setbacks. I just don’t believe she’s going to die anytime soon. How do I deal with that? Is that normal? Is this what real denial feels like? We’ve all denied things were true in one situation or another, but you always had that nagging feelings in your heart that you “knew” it wasn’t really true and you were false to deny it. For the first time in my life I’m experiencing the exact opposite of that… everything points in one direction, but it’s just not believable to me. I didn’t even know that was possible. Re-reading this paragraph makes me wonder if people are going to think I’m losing my mind. Now I’m wondering if I should delete it all and just give a “happy” update. I consider that it is denial, I am hopeful that it is a grace of faith.

Nope, going to leave the above. Never been one to stop people from questioning my sanity, why stop now, right?

She’s laying on chest while I write this… fast asleep, peaceful, perfect.

I just don’t get it. I’ve dealt with death before, many many times. All of my grandparents are gone. My parents are gone. Cousins, friends, even children. I should be prepared for this, but I don’t feel like I need to be.

I wonder how I’ll feel about this note next week. Or the week after.

Back to Alex. She’s had a good couple of days. Kim thought her color was a little “gray” today, but I think she seemed as pink as she ever was. Kim felt it might have been the lighting. Gretta and Harry came by to pick up Aden and Gabriel (taking them to Midland for the weekend, big thanks to them) and Gretta thought she seemed to have a good color.

She’s perfect.

I wish mom was here. She’d know what this was. I feel so lost.

19 Days Old

3rd Week (Home), Alexandria's Life No Responses »

Jan 042012

Aden returned to school on Tuesday(Jan 3), so the house wasn’t quite as crazy as it has been the last few weeks. Alexandria and Kimberly both had a good day on Tuesday. Both of them had such a good day that I actually spent the entire day in the office, touching base occasionally with home to make sure everyone was ok. We received Alex’s social security number today, so the federal government believes she’s real. J We added her formally to our insurance, which will back-date to the day of her birth. She’s having a good night tonight, sleep a bit, waking up every 2 hours like clockwork to eat. She’s up to 35ml per feeding now, and we’ve noticed that some of her preemie clothing is getting tight, so she’s definitely growing.

Well, best try to get a little sleep before she wants to eat again. Dawn from hospice will be coming by tomorrow. Hope you all have a great day

Ellery and Amber holding Alexandria

17 Days Old

3rd Week (Home), Alexandria's Life No Responses »

Jan 032012

Kimberly painting Alexandria's Toenails

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

Alexandria had another great day. Kim painted her toenails today, she had to use a toothpick as a brush because her toes are so small. Nothing ever seems to go quite as planned though and I accidentally spilled the nail polish on the carpet trying to shut off the heart monitor.

Gabriel asked to hold her today and I let him. He sat singing to her, telling her he loved her, and lightly brushing her hair with his fingers. He has a lot of very deep feelings.

Gabriel holding Alexandria

When I got up this morning I sent Kim to bed and eventually wrangled all 4 kids at once. While doing that our neighbor Joy walked over and shoveled out our driveway. (Have I mentioned I love the neighbors?) Later on in the day Gabriel, Aden, and I took our shovels over to their place and did their sidewalks. It was a cold day, but good to get the boys outside and let them run around for a bit. Aden and Gabriel did some sledding down the back hill as well.

Another set of neighbors called us from the grocery store today to ask if we needed anything, then later came by with their daughters for a visit.

I gave Alexandria a bath today and she seemed smaller to me, as if she’d lost some of the “baby fat” she may have had while in the womb… not that she had much to begin with. At some point I need to find a scale that we can use to accurately weigh her.

All in all it was a good day. Good enough that tomorrow I’m going to attempt going into the office for a bit.

16 Days Old

3rd Week (Home), Alexandria's Life No Responses »

Jan 022012

Joy and Senait holding Alexandria

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

Alex has had a few good days. Some of our good friends / neighbors came over last night to see her, they have been very supportive and good friends. Kim and I have been very blessed with the neighborhood we are in, couldn’t ask for a better batch of friends. It reminds me of McEwen street in Saginaw, where my grandfather lived. Everyone knew everyone, everyone helped everyone. It’s the same here.

Kim and Alexandria

Kim and I stayed up with her on New Year’s Eve and kissed her at midnight. We need to think of new things to show her, we’ve sprinted through all the big things… now need to work on those marathon goals. We took her to church again today. Kim was terrified at the Christmas service that it would be the only church service that she’d be able to attend. When we talked yesterday about if we should take her Sunday I said “absolutely, we have to prove you wrong.” Her monitor started to go off a few times during the service (but her color was good), which meant that the sensor was having trouble. We eventually turned the machine off and just watched her closely. After the last few days we’re getting more comfortable with how to watch her, how to know when she’s in trouble. I’m envisioning times when we won’t have her hooked up, but I’m not quite there yet. With God’s help she continues to defying the odds, but it feels like we’re so far into uncharted waters…. It’s scary. It’s wonderful, but it’s scary.

Happy New Year everyone.

Joy and Alexandria

2 Weeks Old

2nd Week (Home), Alexandria's Life No Responses »

Dec 312011

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

My lovely daughter is two weeks old today. When we first engaged hospice our first questions were about their experience with children with Trisomy 18. Most specifically, how much time did they see people getting. Many did not make it home, so hospice was only involved to assist with grieving. Few had lived hours, very few lived weeks, only two lived months. None lived to a year. Kim’s doctor had never had a baby with Trisomy 18 survive birth. Both of the hospice nurses, the hospice social worker, and even the nurses at the hospital though said this: The time you get seems too often come in twos, if you get an hour you’ll probably get two… if you get a day you’ll probably get two, etc. We held our breath for the first minute, and we got two. We prayed through the first hour, and were granted another. We cried through the first day, and were blessed with two, then 7, then 14.

Kim and I see things differently… Kim feels that Alex is getting weaker, but I tend to feel she’s getting stronger. It’s only when I give her a bath and she doesn’t have a cocoon of diaper/pajamas/blankets that I see her frailty. I have found throughout our relationship that Kim and I are each other’s compliments. We balance each other out well, and we help each other see things the other doesn’t… we focus from different perspectives.

Hospice came by today and what we believed to be labored breathing does not appear to be labored to our nurse. She feels Alexandria is breathing more deeply, and it’s just the fact of her small size (and how her whole body is involved in the breaths now) that make it appear that way. That’s a good thing. She also gave us guidelines for her vitals and appearance so that we can be sure if she’s having an episode when the monitor alerts go off.

We’re collectively taking a breath now. Many people have expressed concern that Kim and I can’t keep up the pace we’ve been. My cousin summed it up nicely when he said “you may very well be in a marathon not a sprint”. We know we can’t keep up the schedules we have, but it’s just so hard to put her down. We don’t want to miss a minute.

Alexandria 14 Days Old

Harry and Alexandria

13 Days Old

2nd Week (Home), Alexandria's Life No Responses »

Dec 302011

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

Alexandria had a fantastic night… Dad didn’t. About 3am my body said, “Ok, this is enough already, ya’ll are done!” I haven’t been taking the medications for my back so that I’m not sleepy and have occasionally been having increasingly worse symptom’s related to the disc in my neck (arms tingly, pain spiking down them, numbing, but nothing serious). So around 3am my legs were on fire with radiating pain… I hadn’t felt that since I aggravated my neck in a fall a few years ago. I guess 13 days is my limit. I woke Kim up and asked her to take Alex. I was able to get 4 hours of sleep lying flat and when I woke up the pain was gone. I got up and took over for Kim around 7am. Pastor came by around 11 to pray with us and check on how we were doing. Aden and Gabriel decided to put on a show for him by running around in circles. Gabriel continues to interrogate pastor about his IPAD, he just can’t get over the fun factor of “swishing” pictures on a screen. Alexandria didn’t have an episodes this morning, although her breathing had seem a little labored. Things went well enough that I went into work around noon.

A little after 1pm Kim called me at work to tell me that Alexandria had an episode, but that she didn’t want me to come home. She called again at 3pm after a worse episode and I left work immediately to come home. Alex’s breathing is definitely labored today.

Gabriel asked why Alexandria was going to die today. He asked question after question about why she was sick, why she was going to die, why was she made differently, etc. We did our best to answer them. It’s clearly still on his mind. We have a few books but they don’t seem to convey our situation. I think Kim and I may need to write one ourselves.

Harry and Gretta are going to take Aden and Gabriel back to Midland with them for the weekend tomorrow morning.

Kimberly and Alexandria (13d old)

12 Days Old

2nd Week (Home), Alexandria's Life No Responses »

Dec 292011

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

Today was a fairly quiet day. Alexandria had a good morning, no episodes and she had a good night as well. Things were stable enough that I actually went into the office in the afternoon for a few hours. I am taking a partial FMLA leave from work, which means I can be at home when needed and also work a few hours here and there. This allows me to spread my FMLA days out so when she does not have stable days I can stay home without worrying about losing my job. It was not easy to leave the house, it was the longest time I was away from her since her birth. Everyone at work has been very supportive.

Harry and Gretta arrived and helped us throughout the day. After they arrived at noon is when I headed into the office, so Kim always had back-up support here. Gabriel and Ethan were especially interested in her today, as the picture below shows. Gabriel knows to be very gentle, Ethan, not so much… so we keep him at a distance.

Gabriel showing Alexandria her Snoopy with Ethan watching

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