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
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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.
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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.
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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.
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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.
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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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Alexandria and I had a long night. She had one episode which was rough enough I called Kim. When I say “called Kim” mean that literally. She sleeps upstairs in our bed and since I insulated the interior walls you can’t hear anything between floors for the most part, at least not enough to wake you up. We keep a cell phone on the bed upstairs and the house line by the chair (where we sit holding Alexandria during the night) so that should something happen we can literally call each other. She had a cardiac/respiratory episode which lasted about 15 minutes. Later that night she had another “odd” cardiac episode where her heart rate began to jump, down to 20, then back up to the 80s, back to 130, back down to 20, back to 130, then 50… it was all over the place. Alex’s demeanor wasn’t changing either, her respiratory seemed fine, her pulse (just from an observational standpoint) didn’t seem that erratic. I asked Kim to get my stethoscope (was my mothers, she was a nurse) and I listened to her heart. She was hammering them out at a normal 130 bpm pace. Upon inspection the sensors on her body had been moved (probably when I changed her 20 minutes prior). Panic averted.
Dawn from hospice came by today. I voiced again how she seems to be doing so well, so much better than when she was in the hospital. She’s eating, she’s processing food well, etc. She’s very good at bringing things back home. She did so by explaining that although Alex is seemingly doing well now, she’s also growing. Her organs are seemly working well now, but as she grows that may change. I hadn’t even considered that. I’m sure that’s what Dr. B was talking about as well, but it never occurred to me that as she grows her body will have trouble keeping up.
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Alex had a good night, no major episodes and the day was fairly uneventful. She did have one minor respiratory issue in the morning, but it only lasted a few minutes. She drank well when she got up, but then wasn’t as hungry as the day went on. A few people have sent notes about what “a lot” means and we have heard that one good nurse was worried she maybe was eating too much. J “A lot” means she’s drinking 20ml (or a little more than a Tablespoon) in a few hours. There are times when she won’t eat for 6 hours, then only drink 5ml, then maybe 10 a half hour later. We’ve learned her signs for “enough” and are careful to make sure she doesn’t get enough so that she’d aspirate what she drinks.
We had almost everyone here on Monday, Mom and Dad Bash, Michael/Lisa and the twins, Bonnie, and Marybeth/Bob/Robby/Meghan (Henrys). It was good to have everyone here, to see her, hold her, and share her life with us. Mom, Dad, Bonnie and the Henry’s headed back before it got dark.
Michael and family will head home tomorrow. I got the feeling that they were a little worried that the twins were stressful for us, but not at all. Their kids were great and helped keep Gabriel and Ethan busy and happy. I just hope the craziness wasn’t too much for them. 🙂
Hospice called this morning and we’ll have a visit with our social worker tomorrow and our nurse on Friday.
This is the little lambs board at church, each child under 3 baptized has a lamb.
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Alexandria had a pretty good night last night with me, she was up a lot, so her days and nights are definitely mixed up. Everyone else woke up around 7:30 or so and took Alexandria so I could sneak in a nap before the 10am service. We held off opening an presents and got to church a little late after wrangling the 6 kids (our 4 and Michael & Lisa’s 2) together. We re-affirmed Alexandria’s baptism in front of the church and she wore her Christening Dress that Kimberly bought for her. She looked beautiful. 🙂 A great moment for us as a family. When we got home we took a picture of the whole family, all 6 of us in front of the tree. It was bitter sweet to get a family picture in front of the tree and know it will probably never look as complete in the years to come. We ate lunch, put everyone down for a nap (including me), and ended up opening presents around 4pm. After an incredible turkey dinner that Kim put together, got the kids to bed for the evening and relaxed with Michael and Lisa and a movie.
Alexandria's Lamb
Alex had a little more difficulty maintaining her blood oxygenation yesterday (Christmas Day). A normal oxygenation level is 95-100%, below 90% is considered low. Alexandria’s pulsox monitor is set to alarm when she goes below 75%. Sometimes this just happens when we move her and the sensor gets confused temporarily. She went below 75% for a few moments here and there yesterday. When I describe her as having “an episode” it means that she’s dropped below 60% and remained there for some time (usually several minutes, sometimes much longer). When we were in the hospital she had many episodes where he oxygenation was below 15% and her heart rate, which is normally around 135 bpm was below 30 bpm, some that lasted between 30 minutes to an hour. In reality she would be so close to death and then her body would “reset” and come back.
When my mother was in hospice, in her last days, I stayed with her for 10 days before she passed. In those 10 days we were able to talk and have some final closure about things between us over the years. We said what needed to be said. We had our first communion together. In our conversations there were hints that she felt guilty about dying, about not being able to be here with us and Aden. I always dissuaded those comments, made sure to communicate that it was not her fault, but in private I begged God to heal her. When Alex would start an episode at the hospital I was right back there, feeling the feelings I had holding my mother in my arms while she died. The only difference was I couldn’t be quiet. When Alex would turn blue and come so close to passing, I begged her not to go, I begged her to stay. I feel a little guilty about that. I don’t want to prolong her stay if she’s uncomfortable, but I just couldn’t take her leaving then…. I need more time. But I’ve often wondered if I begged mom to stay if we’d have had a few more days.
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Dr. B called and came by around 10am this morning. He looked her over and asked if her jaundice was getting worse, which it isn’t. He couldn’t hear any murmur associated with patent ductus arteriosus and believes it’s possible that this may not be an issue later. This was something the hospital and hospice staff believed would cause her cardiac and respiratory issues to return. When asked if he though those episodes would return anyway, he said yes. He believes that whether caused by her heart, her lungs, liver, kidneys, etc, one way or another they’ll return. He re-iterated the same point everyone else does, that the condition effects every system of the body and it’s never in a good way. He’s a very good doctor and a has said he doesn’t see any reason to bring her into the office and expose her to any other sick kids, that he’ll do anything he can to help, run any tests we need, come to the house when needed, etc. Great man.
I find it difficult to accept that she can live as she is now, she sleeps, she looks around, poops, stealth-pees, cries… everything other kids do, but her body is struggling to balance itself in ways other invisible ways just to stay here. Struggling enough that eventually it won’t be able to compensate anymore, her condition will deteriorate, and she’ll leave. She seems and feels so “ok” to the naked eye right now.
She only had one episode today, and it wasn’t a severe one, very minor. It’s a reminder of the struggle I guess. When we talked with Jessica yesterday she mentioned that some of the other couples she’d worked with didn’t experience episodes while they were in the hospital. They took their children home and only after a while began to have episodes at the very end. It upset me greatly when she had them in the hospital, but I think it’s prepared us for what is to come. Some couples didn’t get a glimpse, a warning, any preparation. I may not feel it now, but in time I think it will have helped us.
Alex has her days and nights mixed up. She spent all day today asleep in our arms, but tonight she’s a bit more active. She’s a night-time party girl, something I was always warned my daughter would probably be. 🙂
Merry Christmas everyone, God bless you and have safe travels.
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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!
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 6th 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.
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. 🙂
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.
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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:
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Bringing Alexandria Home
Got home a little later then expected. Alexandria started an episode shortly before we left. Afterwards we went through the discharge paperwork and began just chatting with our nurse Lisa. We talked a bit about her children, one of that was born fairly small like Lisa (but without any additional conditions). After a while of Kim and I chatting her ear off I asked if we were keeping her from any other patients. Come to find out Kim and I were the last family on the floor. They apparently had closed 3 earlier in the day to save costs and had everyone on 2, except us, so she was in no hurry either. 🙂 Lisa told me this was a somewhat new experience for them. It wasn’t very often that they discharge a child in Alex’s condition to go home. Most of the time children who have serious conditions either pass away before the parent’s leave, or are discharged into the NICU. I told her that Alex was good at beating the odds, she’d done so by making it to delivery and by surviving delivery, now by making it home. She’s an incredible fighter.
They attempted to give us this nice wooden “memento” box, which someone made for people to take things home in who are in our situation. We explained that I was creating a memento box out of the extra wood that was left over from building Alex’s casket. We really appreciated the offer, but believe another family would need it more then we would. She said they were a little small for some of the things they do and wished they were a little bigger. I told them about my wood shop and offered to make some bigger ones for them if they need them, so when things calm down I’ll do so.
It was much more difficult to leave then I had anticipated. Before Alex was born I had this strong urge to get her home as quickly as possible, to get her into familiar territory. The comfort and backup of the hospital was overwhelming though. Whenever we had questions, there was a button to push and an expert to ask. The NICU, although we never used it, was literally one door away from our room. I really really didn’t want to leave. Earlier in the day I had signed all of the paperwork for hospice. Although I have grasped what is to come, signing it with ink makes things much more real.
When we got home it was like a weight was lifted though. It felt so good to be home, to have her home.
Alex had one episode around 9pm, 12:30am, 1:30am, and 3:30am. She hasn’t had one in 2 hours, and Kim is sleeping soundly on the pullout couch in front of us, so we are sleeping. 🙂 Alex’s episodes last a little longer, but I’ve noticed that she doesn’t get as blue as she did before. I think she’s breathing very shallow, intermittently, rather then a complete stop as before. Her heart-rate doesn’t seem to crash as before either. While talking with hospice they explained that as time goes on her body will compensate for what is happening, that her episodes may dissipate and get better for a while, but then she and social worker said, “but they will return.” Neurolgical problems with the brain communicating and functioning the rest of the body is one of the main issues with Trisomy 18.
Now the challenge will be to get into a pattern of sleep and support. We’ll touch base with hospice today, and begin to get the boys familiar with having her home. Thank you to everyone supporting us.
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Alex had several respiratory/cardiac episodes during the evening, but they began to get farther apart during the later morning hours. The nursing staff has begun to tell us we need to sleep and that they’ll take her, but we can’t give her up. Kim was able to get a few hours of sleep Friday night and got 3-4 hours intermittently last night. I’ve gotten about an hour in the last few days, not really sure what my body is running on at this point. Alex had an episode that lasted about an hour this afternoon, she didn’t “shock” back quite the way she has been, which scares us a bit. Our on-call pediatrician was in the room and confirmed that she isn’t in pain, but we’ve ordered some morphine to take home in case she begins to be in pain as time progresses. She’s been very “normal baby” fussy this afternoon. 🙂
It appears we’re going to get to take her home. 🙂 She’s quiet right now and sleeping, we’re planning on leaving after dinner time. Early enough to let the boys see her, but late enough that we can get them to bed shortly thereafter.
We’ve asked our pediatrician to prescribe the use of an apnea monitor, which will track when she breaths and her heart rate and alert us to changes. The current pulsox monitor goes off often and uses “light” to measure levels. Because of this it can be “wrong” and alert when it shouldn’t (another reason we haven’t slept in days). The apnea monitor will use sticky sensors that measure her electrical impulses and won’t go off incorrectly (or so they believe). If it doesn’t work out we can get another pulsox monitor.
Hospice will be here between 3pm and 5pm to finalize the paperwork and go through everything we need prior to leaving. I was surprised an how much time they wanted to spend, but the nurses said they want to be sure to give enough time to go through everything. The nursing staff is also going to help us with handprints and other momentos during that time as well.
Thank you so much for your prayers and comments, they have helped us through these difficult days. We are so thankful we are going to be able to take her home.
Original Text of an E-mail from Douglas to Family/Friends
Very rough night and morning. Alexandria began to have serious respiratory and cardiac distress starting around 1am, episodes lasting about a 15 minutes. This happened about every two hours during the night. She is able to feed via bottle. We attempted tube feeding last night and that did not go well, it was too stressful for her body to handle and her heart dropped to 40bpm. Her episodes began to get more frequent, but now are beginning to lengthen out instead of becoming several small episodes. Her last episode lasted an hour. We are praying for comfort, she does not seem to be in any pain. We sing to her. We read to her. We constantly tell her how much we love her.
Original Text of an E-mail from Douglas to Family/Friends
I have been on first watch for a few hours while Kim tries to sleep. They keep checking on her, so not so successful. Oxygen and heartrate good in last hour, except when feeding.
Original Text of an E-mail from Douglas to Family/Friends
So Kim tells me about 3:30pm that she’s “feeling pressure.” I remembered those words from Ethan’s birth last August, which I interpreted to mean things are rolling fast. I asked her, “Do you feel the urge to push?” “No, just pressure.” We wait for the next contraction, sure enough, more pressure. I called our nurse who came and checked Kim and she was fully dilated… time to start. I call pastor Rob and he’s on the way. I call our house to tell Gretta and Harry (Kim’s parents) to get the boys ready, phones busy. Try again, still busy. Try her cell phone, no answer. Try the neighbor’s cell phones, no answer at either of them. (panic sets in) I try Gretta’s cell phone one more time and get her, let her know the situation.
While getting things ready Kim tells me she hasn’t felt her (Alexandria) move in a while. I check and think I feel her move, but am not sure. I speculated to her that things had become cramped enough that she was comfortable, as if swaddled in a warm blanket. Kim’s nurse gets everything ready, but tells us that “Whispers” has no one on-call tonight. (Whispers is the photography place) She then leaves to try calling them again. We wait for a while, Kim continues to contract, and we begin to get a little worried. She’s almost to pushing and there’s no one in the room… Our nurse returns and lets us know that our doctor is just finishing up a C-section. (panic sets in) I’m thinking in the back of my mind, “This baby is not going to wait…” A few minutes later Pastor arrives, we let him know what’s going on, and he heads to the waiting room. Just after that our doctor shows up and gets Kim ready for delivery. By the time her legs were in the stirrups, Alexandria was “right there.” It only took one push. The moment her head was out she opened her beautiful blue eyes and looked at me. She was born at 4:26pm. She was very still. They laid her on Kimberly, she moved very slightly. It did not appear that she was breathing, and the doctor confirmed that she wasn’t when I asked. She did have a heartbeat though, we could feel it on her. She seemed so weak, so purple. I could tell from the looks on the nurses, NICU staff, and others that they did not expect her to live long. I asked them to go get pastor quickly, and he came into the room. He asked for a little water and it seemed like an eternity before someone had water in a cup for us. He baptized her, we prayed, and said the Lord’s Prayer. Immediately after we were done praying she let out a big cough and began to cry so quietly… but breathe. It was awesome, just an absolutely awesome experience. It was as if we were granted a “yes” right then and there. Our nurse later said, “There isn’t much we can do for her, but obviously prayer works, because I think your pastor prayed her to life.” She began to move, and take breaths. Slowly at first, then more regular. She finally began to get color into her face, her chest, her arms and hands. We kept her close to Kim and I, and I cleaned her a little. The NICU staff retreated, saying there wasn’t anything they could do and that she was in the best place she could be, with us.
She weighs 4lbs 12oz and 17 inches long. It was two hours before we were willing and comfortable enough to let them take her out of our arms to weigh and get her footprints/fingerprints.
Alexandria being weighed
We finally were able to get a photographer (who was a part of Now I Lay Me Down to Sleep, not Whispers) and the boys here and take pictures with everyone. We gave her her cross, her baby ring, and all our other gifts. A few moments ago I fed her for the first time, she was able to eat out of a bottle which is practically unheard of in this situation. She has begun to have some respiratory distress, but it comes and goes. We have her hooked up to a pulsoxs machine to see how well her blood oxygenation is coming, which sometimes alarms. Right now she seems to be doing ok.
We will keep people updated. Thank you all so much for the thoughts and prayers, to all our doctors and staff, to pastor, our family, and friends.
Original Text of an E-mail from Douglas to Family/Friends
Contractions began to get painful, so the epidural is now in. Kim was a trooper and able to get past her great fear of needles. Contractions are now approximately 3-4 minutes apart. Still a ways to go. She’s resting comfortably and trying to sleep now. We listened to Alexandria’s heartbeat for a while again.
Original Text of an E-mail from Douglas to Family/Friends
Progressing. Just met with a social worker who gave us more insight into some post-birth preparations. Contractions continue. Dr. V came in and checked Kim, estimating birth at sometime around dinner-time. Will keep you all updated. Thank you for all the notes and prayers.
When a pregnancy has complications the hospital will put a leaf with a teardrop on the door to let people know to read and understand the chart before entering the room.
Original Text of an E-mail from Douglas to Family/Friends
Saw our doctor about an hour ago and she’ll be here around 10 to start pitocin and break Kim’s water. Last time Kim started pitocin it took about 5-6 hours before delivery, hoping this time goes faster. Pastor Rob was here and we had a great fellowship with him, Kim and I have been blessed with a wonderful church family that are really helping us through this. Kim was told she could have a ‘light’ breakfast of toast and chicken broth, which we interpreted to mean French Toast (there is toast in it). 🙂
Kim was admitted this evening. The room is comfortable and they have let us know that they will not move us until we have to go home, which is good. The nurse is very understanding. I will send updates when possible. These updates may be passed on to friends, family, co-workers, etc. Thank you again for all your support and prayers.
Original Text of an E-mail from Douglas to Family/Friends
Dear friends and family,
Kimberly became full term this past Thursday. We have been struggling with how exactly to handle Alexandria’s birth, do we wait for her to come on her own, do we induce early, do we induce on her due date? We have read concerns about her coming early and others testimonials where waiting meant they were too late and their child died before labor. It has been difficult to know what to do, what actions we take would extend her time or lessen it. God has blessed us with very competent doctors, but even they cannot know.
After a great deal of prayer we have decided to induce next week, starting Thursday December 15. Kim will be admitted around 8pm and start medications to prepare her, and on Friday morning they will begin Pitocin. I will be staying with Kimberly in her room. This means, at the very latest, Alexandria will probably be born on Friday December 16th. We do not know how much time God will grant us with her, if any. Many of you have wondered about her chances and what hopes we have. Only 70% of babies with Trisomy 18 survive to full term, so she is a fighter and is beating the odds so far. Approximately 50% of children carried to full term are stillborn. There are no medical procedures we could perform to increase those odds, and a C-section would put Kimberly at more risk. Beyond that it is hard to know what her chances are. We have heard many accounts of only a few hours. The median life expectancy is one month, only 10% live to see their first birthday. We know that some families choose not to have a public funeral in these cases, we are planning to do so.
Kimberly’s parents will be coming here on Tuesday and will be staying with us during this time. As we need help with the boys we’ll definitely contact those that have offered to help.
Should Alexandria not be stable we will only have the boys and our pastor come and spend time with us in the hospital. If she requires surgery, or if she is stable, we have not decided on the amount of visitation in the hospital we’d be able to handle. We’ll send out additional e-mails if and when we’ll be able to have visitors (either at the hospital or at home). We know you will all understand and appreciate all the prayers, love, and comfort you have all provided us.
Original E-mail from Douglas to Family and Friends
Kim and I had our first ultrasound yesterday. We found out that we are having a girl, but there are complications. The ultrasound revealed several abnormalities in her development, all of which point to a chromosomal disorder. We met with a high risk specialist today, who performed another ultrasound, and walked it through with us for the results. She has a heart condition, two choroid plexus cysts in her brain, and is very under normal weight among other problems. With her current conditions he believes she has a 1-2% chance of living. He believes these abnormalities are caused by Trisomy 18, also known as Edwards Syndrome. We will have definitive test results on Edwards Syndrome on Monday. If she has Edwards Syndrome she will have a less than 1% chance of survival after birth, but he has prepared us that she will probably pass-on before she is born.
Please keep her, Kimberly, and our family in your prayers. If you have any questions, feel free to ask me, we’re open to answering them.
