Wednesday, December 31, 2008

'Tis Better to Give Than to Receive


Today was a good day. And I very much believe that today's title is true. We have been on the receiving end for the last two months from so many of you. It has been very humbling to feel the generosity of others, and today we got a chance to do some giving. It was small, but it felt good to be able to do something to give a little back.

We visited the OB nurses at the hospital today. It was very nice to see their kind, smiling faces! :) I've had many sudden urges over the last two months to stop by and jump in a hospital bed for a non-stress test. After three visits a week to the hospital and OB's office for the last six weeks of my pregnancy, I almost formed a habit!!

The reason for our visit today was to donate some of Josephine's things. We were able to take in some preemie size diapers and clothes. We knew the likelihood of having another preemie size baby is small, not only for us, but for many other people, so we wanted to make sure that Josephine's things would be useful to someone who needs them.

After all we've been given, it felt so nice to do something for someone else. And it makes me feel good to be doing them in Josephine's memory. Everyday someone tells me how much they have been touched by Josephine's story. I can't help but feel honored that my little girl has been able to touch so many people. I never would have imagined.

We have all been coping well. The best advice given to us was to keep busy. Jon and I are doing that pretty well. It's amazing what you can accomplish when you're trying to keep your mind busy. Marian seems to be doing well, too. She's talked about Josephine a few times. Mostly, she's been talking about little things she remembers.

James talked about Josephine for the first time yesterday. He noticed my breast pump sitting next to my bed, and said, "Baby!" I said, "Yes, that's for the baby's milk." He looked at me then, and said, "Baby, bye-bye." It's the first time he's said anything about her. I know that he is young, but I hope that I can do everything possible to keep her in his memory. I want Josephine to be as much a part of this family now as she was when she was with us. I know this is going to happen by talking about her frequently. Right now, this can be painful, but I still feel overjoyed and blessed to be her mother. And these are the feelings that most prominent for me right now. Yes, there is grief and sadness, but there is still peace, comfort, and joy that have been with us from the moment she was born, and even before.

Thank you for your thoughts and prayers. We appreciate all you have done for us.

Monday, December 29, 2008

Our Little Angel

I never thought I'd say these words, and it still feels surreal to say them: We buried our daughter yesterday. Part of me wants to write and write and lay out all of my thoughts and feelings, and another part of me is holding them all so special and sacred to me that I want to be selfish and keep them to myself. So I guess I'll try to find a happy medium.

Friday night was Josephine's visitation. Jon and I went early to the funeral home to dress her in her burial gown. It had been made by Jon's sister, Jeanne. It came complete with bloomers, a slip and a bonnet. After dressing her, we sat in silence with her. It was amazing to me how beautiful she was. We did take some pictures, but I hesitate to post them. While we will treasure them, I'm not sure how other people would react to pictures of a child who has passed. My mother, stepfather and sister came later with Marian and James. Marian seemed to retreat a little. I'm sure she didn't know how to act or what to say. I didn't either really, and I'm an adult. James saw her, and exclaimed, "My baby!" It was as though he had just realized that he hadn't seen her in three days. He immediately put his hands on her just like he did the first time he saw her in the NICU. He asked to hold her then, so I put him on my lap and then wrapped Josephine in a blanket, so he could say his final goodbyes. Marian then asked to hold her, but she couldn't stand to do so more than briefly. Jon then carried Josephine to her casket. She looked like a little porcelain doll. Her visitation went smoothly. We were happy to see so many friends and family come to pay their respects.

Saturday morning, my dad, stepmother, sister, and brother arrived from Ohio. They arrived just before Jon, the kids, and I left for the church to help get things ready for Josephine's funeral services. We were able to spend the morning with just her and family before they closed her casket. That was the last time I got to see her. Her services were short, but meaningful. We are grateful to Ken Huey and Landon Kirk for agreeing to speak for us. Much of what they said that morning were things that I had read or been taught before, but it was so much more personal that morning. I pray those of you who joined us were able to feel of the Spirit which was there and have peace and comfort.

Finally, on Saturday afternoon, we arrived at the cemetery where Josephine was to be laid to rest. The weather had changed from cool and rainy at the Lake of the Ozarks to very cold and misty in Stella. The weather was just like it was on the day Jon's dad was buried. I'd like to think it was his way of saying he was there. We didn't spend much time there because it was so cold - just long enough for Jon to dedicate her grave. Seeing her casket there and then leaving her there was perhaps the hardest part of the day. How can you turn around and walk away when everything in your being is screaming that you should be holding your baby and leaving with her, not leaving her?

I am comforted in knowing that I will always have her as my daughter. My Josephine will always be my little girl. How wonderful and miraculous! And how grateful I am for the atoning sacrifice of my Savior, Jesus Christ, that allows me to repent of my sins so that I may be worthy to return to live with my Father in Heaven and my dear daughter in the Celestial Kingdom and also to partake in the blessings of the resurrection with her. We will always be a family - an eternal family.

Thursday, December 25, 2008

Merry Christmas


Today has been bittersweet. We had a wonderful Christmas morning with Marian, James, ourselves and my brother, Paul. The kids were incredibly spoiled this morning, and we enjoyed watching it. Afterwards, we went to my mom's house to spend the day eating, visiting, watching movies, and the like.

We did miss our little girl today very much. We had purchased a couple of gifts for her, one of them from Santa Claus - a bouncy seat, so we could take her from room to room with us without having to haul the swing around. I seemed to fidgit for most of the day, looking for something to do. I'm finding it difficult to go from having a routine and system of doing things every three hours to not having anything to do.

I can't write anymore tonight. I find it hard to put all my feelings into words. At times, I am still in shock.

One last thing though.... I've had a couple of people ask me about donations in lieu of flowers. Flowers or donations are appreciated. Please make your donations to either The Ronald McDonald House or Now I Lay Me Down To Sleep in Josephine's name.

Wednesday, December 24, 2008

Josephine's Services

Josephine Elizabeth Bennion passed away last night at 8:35 pm. She went very quickly and suddenly, and with no pain while I was holding her. She would have been 9 weeks old today.

Visitation services will be Friday, December 26 from 6:30 - 7:30 pm at Hedges-Scott Funeral Home in Camdenton. Funeral services will be Saturday, December 27 at 10:00 am at The Church of Jesus Christ of Latter-Day Saints on KK Highway in Osage Beach. Burial will be Saturday, December 27 at 4 pm at Macedonia Cemetary in Stella, MO.

Stella is 3 - 3 1/2 hours away from here, but we would rather have her buried next to family than to have her buried close by and by herself. Jon's dad was buried at the Macedonia Cemetary last January. Jon's brother and sister had purchased plots near him at that time. They have so graciously donated one of the plots to us for Miss Josephine.

Thank you all for your love and prayers over the last two months. We are very appreciative of all you have done for us.

Tuesday, December 23, 2008

I have finished my course

I have fought a good fight I have finished my course, I have kept the faith:

Henceforth there is laid up for me a crown of righteusness, which the Lord, the righteous judge, shall give me at that day: and not to me only, but unto all them also that love his appearing.

Do thy diligence to come shortly unto me:

This evening Josephine Elizabeth Bennion, passed from this earthly existance. Her passing was sweet and peacefull. Many tears have been shed already, but the peace that accompanied her in life has remained here with us. Her life was so beautiful and so was her death.
I need to go now but, I will try to update more information later. For now know that we are ok. We are sad to be separated from our little girl, however we know that she will always be our little angel.

Thank you for all your thoughts and prayers.
Jonathan Bennion

Wednesday, December 17, 2008

Birthdays All Around!







December is busy for everyone, but we feel we must make it even more so by adding a number of birthdays into the mix. December 13th kicks it off with my sister, Connie's birthday. My dad's birthday is December 16th. Marian's birthday is December 17th, and Jon's birthday is December 18th. There are also numerous cousins, uncles, brothers-in-law scattered within those same days and a few more.

So, with today being the 17th, we celebrated Marian's 6th birthday. She got to take treats to school for snack time and even be the snack helper. She was so excited! When she got home, I was making her birthday cake. She had requested a guitar cake and the picture you see is my attempt at that. She had also requested pizza for dinner. We had toyed with the idea of making homemade pizza, but since she isn't having a birthday party and friends over this year, we decided we'd go to Pizza Hut. She also had a certificate for a free Personal Pan Pizza from the school's Book It! Program, so that didn't hurt! After we got back to the house to have cake, we gave her her birthday present, and she was thrilled!

Marian was also happy to share her 6th birthday with her little sister. Josephine is 8 weeks old today. It's amazing that we've been able to have her this long, and we are so very, very grateful. I wish had some wonderful words to share with all of you, but I'm afraid that I'm not able to come up with all the words to describe all the different feelings I've been having today. I know that they are all supposed to be normal given the situation, but I can't help but feel mostly conflicted. How is it that we are able to feel so many different emotions all at once? I can't even begin to describe all the emotions that I've felt today. Part of me doesn't know what words I could use, and the other part of me is holding all of them sacred and close to my heart.

Eight weeks isn't really very long, but it's long enough to become attached and get used to all the little nuances of her personality. I can't help but think how lucky we are to have been able to get to know her. I know there are many in our situation who haven't had that chance. I also know that the reason she is still with us is because her mission here is not yet complete. She has been sent to us to fulfill a purpose before she returns to live with her Heavenly Father. I'm sure it is not meant for me to know just what she has been sent to do, but I do pray that at some time, whether it be now or later, that I am able to have even just a glimpse of her mission here. I also pray that I might be able to help her to fulfill her purpose here. I might not know that I am doing it at the time, so I pray that I will live according to the covenants that I have made and be open to the promptings of the Spirit to make righteous decisions. If I'm doing these things, I will be living my life in tune with Heavenly Father's plan, and partaking of the blessings of the atonement of Jesus Christ. And if I'm doing this, I will be making the right decisions as a mother to this very special little girl, and maybe I'll be able to bless her life the way she has blessed mine.

Monday, December 15, 2008

Docs and Shots




Well, I'm not sure what it's like where you are, but we are experiencing frigid temperatures and sleet. The sleet ended sometime in the wee hours of the morning, but the frigid temperatures continued throughout the day. We are expected to get 3+ inches of snow later tonight and into tomorrow morning. Needless to say, school was cancelled, so we had all three children home today.

The main roads weren't too bad, so Jon went out for a bit and took Josephine in for her two month well-child visit. Dr. Russell was pleased with her health and current condition. She had lost an ounce of weight. This wasn't much of a surprise to us since she has been vomiting from time to time and had high amounts of residuals a couple of times.

Jon went to the doctor today with a list of things to discuss with him. The first thing was her apnea spells. They've been different as of late, showing signs of possible infant seizures. They tend to happen in clusters; one side seems more affected than the other; and they don't send her into full apnea. She tends to take ragged, random breaths while they happen. While visiting with Dr. Russell, she had one of these spells. He said that they were not seizures, but that infants will sometimes twitch when they hold their breath or stop breathing. Josephine seems to be doing more of the former rather than the latter. Her spells seem more "voluntary," like she's trying to hold her breath, especially since she takes those ragged breaths in the middle. We've still noticed that they are happening just prior to a bowel movement or gas.

Dr. Russell also said her heart murmur is even louder. He said this could have two possible reasons. One, one of the holes in her heart, probably the ASD, is closing. Or two, the blood is being shunted in a loop through the holes in her heart faster and stronger than before. There's really no way to tell without doing another echocardiogram to check out her heart.
And finally, Dr. Russell told us that it looks like Josephine is having some reflux. This would explain the spitting up and vomiting - you know, the things that are very normal for babies. I'd say the most frustrating thing about all of this (and I'm sure I've said it before) is that we're never quite sure what is normal newborn stuff and what is normal caused-by-Trisomy-18 stuff. So we second guess ourselves about EVERYTHING! Her other "normal" development is that she is making eye contact now. That is, when she has control of her eye muscles! ;) She does still do the newborn eye rolls from time to time.

Josephine also had her two month immunizations today. Jon said that she was definitely not happy to be stuck so many times, but forgave them and calmed down quickly. Jon cuddled her tightly and waited a little while to leave. They had asked him to stay for a few minutes to make sure that she didn't have any adverse effects from the shots. The little round Band-Aids they put on her legs almost wrap half way around her thighs. It's too cute.

Jon didn't make a follow-up appointment, but I imagine we'll go back in two to four weeks for another check-up.

I spoke to our social worker from hospice today. She called to ask about how I felt about going back to work. She was unaware that choosing January 5th had been my decision. She also encouraged me to contact the Social Security office to see about getting benefits for Josephine. She's considered disabled, so we should be able to collect. This would definitely help out with Jon not working. Unfortunately, there is little chance of Jon getting a job before the end of the school year unless it's during the evening shift. Josephine needs round the clock care, and Jon, my mom, and I are the only ones who have taken care of her at all. I think it would be more stressful to try to teach someone else to take care of her. And I can only imagine how stressed out they would be!!

On a completely different note, I've changed the setting on posting comments. Many of you have told me that you have wanted to post a comment, but couldn't figure out how. I've opened it so that anyone can post a comment without needing a Google account user name and password. Hopefully, that will help some of you! We definitely love reading what you write to us, too!

Friday, December 12, 2008

Shake It Up

We've had a little bit of a shake up this week. Something new to question and to check into. Since Tuesday late, late night, Josephine has been really complaining of a tummy ache. She squeals like we've never heard her squeal before, and she was vomiting all of her food occasionally. We were thinking a possible bowel obstruction, possibly the malrotation that she had once before, but that was quickly ruled out due to the fact that she has been having regular bowel movements. At one point, she was squealling about three-quarters of the way through her feedings. She was also squealling when she was trying to have a bowel movement.

Cheryl came on Wednesday and we relayed all of this information to her. She went to visit with our pediatrician, Dr. Russell and shared the information with him. The doctor told us to alternate milk feedings with Pedialyte feedings for the next 48 hours. That has seemed to help a little. She's not having as many squealling moments. Squeals seem to be limited to a really gassy tummy and also to right after coming out of an apnea episode.

We also spoke with one of the resident physicians up in the NICU in Columbia today. The original reason for our phone call and conversation was to have them send a copy of the geneticist's report. We'll have all the details to share soon, but in the meantime, they did relay to us that Josephine is what they call a complete, or full, trisomy. There is no mosaicism. You can check out the links in my sidebar to find out the differences between them.

While on the phone with her, we asked her about Josephine's latest "tricks." She told us that the green bowels are probably not due to a virus this time around, but to her nutrition. Green stools are common for babies who are getting mostly the foremilk and not enough of the hind milk when they eat. This also means the foremilk is travelling quicker through her intestines than the hind milk and it isn't giving the bile a chance to be reabsorbed into the intestines. We were quickly able to see how this could be happening. The hind milk is very fatty and will rise and separate if left alone. We were shaking the milk container before we drew it up into the syringe, but doing the gravity feed gave it a chance to separate again. Then most of the fat was left clinging to the sides of the syringe, and not put into Josephine's tummy. We think we may have solved that problem by pushing the milk through the tube with the syringe so the fat can't collect on the side and we are sure that we are giving her all of it.

We're thinking that with this quick movement of food, some of her squeals are just squeals of hunger. She so very rarely fusses that we were at a loss as to what she was complaining about and what to do about it. There have been so many times when she does something and I have to try to figure out whether it is a normal newborn thing or if it is something we need to watch and be aware of. It's amazing how many of those normal little things that you forget about until there's a newborn in the house again.

Finally, a big thank you to each of you who participated in the online benefit auction. It was very humbling to watch all of those items slowly make their ways off the screen. Hope you all enjoy your goodies! Blessings for each of you!

Tuesday, December 9, 2008

Growing Like a Weed!


Wow! I looked at our last post and realized that it was over a week ago! I guess time gets away from you.

We've had a few things happen during the last week. Josephine went to the pediatrician on Friday and she's grown 1/2 inch and weighs 4 lbs. 11 oz. We were hoping to see more weight, but we did have a couple of apnea episodes during the last three weeks when she didn't eat very much. So 10 oz. is still good! She has gained a full pound since she's been home with us. She's actually filling out her preemie clothes now. If she's not careful, we may have to break out the newborn sizes!! ;)

We've also cut our hospice visits down to once a week. We feel like we've established enough of a routine (random though it is) and we know what to expect from her now. We'll miss the extra visit with Cheryl. She is so much fun to talk to!

We even got to go out as a family on Friday night. This ended up being one of the best things for us. A very good friend of ours, Jaimie, hosted a Christmas Cookie Exchange on Friday night. While there wasn't a lot of exchanging going on, we did have a great time eating and visiting, which is even better! We were able to visit with other adults (amazing!), let the kids play games and decorate cookies, and talk about something other than how we're doing. (Not that we don't like filling everyone in, but we do seem to tell the same story over and over. :) ) After we left, Jon and I both commented on how great it was to get out and feel "normal" again.

Probably the biggest thing for me this week was the decision of when to go back to school. For a long time now, I really didn't want to commit to a specific time while knowing that Josephine's time with us is limited anyway. But I realized that I need to return to a sense of normalcy as well. After discussing it with one of the superintendents, I should be returning to school on January 5th. This is, of course, barring any major changes between now and then. Even now, after making that decision, I still hesitate to go back. But there has been one thing that was brought to mind and has made that decision easier to bear. I remembered that Jon and Mike had administered to Josephine before she went to Columbia. In that blessing, Jon commanded her to live and breathe. I know that it is because of this blessing and the power of the priesthood and Heavenly Father's tender mercy that Josephine has been with us this long. Since I know that she has this protection over her right now, I've been able to relax a little about leaving her during the day. It also helps to know that I don't work very far away from home and Jon will be the one with her all day.

Sometimes conversations with people prompt me to write a little something as well. I've realized that many people are concerned about us and don't want to burden us with anything. While our priority is to our little girl, please don't think that you cannot contact us or ask us for something. We have such a peace and and a comfort about Josephine, that we are not in a constant state of high stress and emergency, nor do we sit around on pins and needles watching her breathe and wondering if her next breath is her last. While there are things that have to be done differently, essentially we are still just taking care of a newborn.

Time for medications.... I'll try not to wait so long between postings next time!

Monday, December 1, 2008

40 Days and 40 Nights

Today Josephine is 40 days old. Wow. I can honestly say I didn't expect to make it to today. I wasn't trying to be pessimistic. I was just bracing myself for the harsh realities of what we are going to have to deal with. The last 40 days have and haven't been a large adjustment. We all expect the adjustments of bringing a new baby home, and we've definitely had those. As I've said before, our major adjustment is the feedings and the feeding schedule. I've loved getting to know her and her personality, which is really beginning to show. She has two to three times a day when she's wide awake and alert. She's so much fun to watch. She either reclines in my lap or lays in her swing or sometimes on the floor and just looks around at everything. And I've noticed her responding more to my voice. This is another something to be thankful for. T-18 babies have hearing problems, and Josephine was marked as a "refer" on her newborn hearing screening. But seeing her respond to my voice means she's not deaf. She still doesn't make much noise, but I have noticed her squeaking a little more often. It's usually close to feeding time. She also does this cute little thing where she sucks on her feeding tube right before and while we're feeding her. And because it's not like she's sucking on a straw (the other end is closed off), she ends up making this cute little clicking noise. Her mouth is all puckered up and her lips are nice and pink and she just looks perfect! (Of course, I'm not biased or anything!) She also enjoys tai chi. She does this cute little thing where she stretches and bends her arms to a rhythm all her own. It's incredibly cute.

As I'm sure you understand, some days are better than others. Today wasn't exactly one of the others, but it wasn't one of the better days either. I'd say that the hardest days are the ones when she isn't doing well. Those are the days when reality feels so much closer. Most days I really am okay, and I feel so very blessed. It's on those days that I am the very happy and cheerful person that most of you know me to be. It's on those days that I do feel the peace and comfort of knowing that everything will be alright.

And then there are days like today. Most of the day I had that wonderful peace. But every once and awhile when I was thinking about how lucky we've been to have her for so long, I'd begin to wonder how much time we have left. We're living on borrowed time, and with each passing day, I feel like the time is less and less ours. So I am making the most of the time we do have. Taking more pictures, holding her more, as well as doing things for her.

Some of those things are little and incredibly unimportant, like making blankets for her. (I found this fabulous pink, yellow and black argyle flannel that I'm using to make a baby blanket for her!) Other things I'm doing for her in that round about way. I'm doing them for her because she has inspired me just as much as she has inspired each of you. I have been strengthened and humbled by her. I have been touched and inspired by her, and I have been amazed and encouraged by her. I am thankful that she is a part of our family and our lives.

Sunday, November 30, 2008

Thanksgiving Blessings




This Thanksgiving was truly a blessed one. During this weekend, the holiday has been given new meaning. I am very aware of my many blessings - most of which I'm sure that I take for granted most of the time. This year, I took some time to reflect on what is most important to me and how grateful I am to have been blessed with these important things.

I am thankful for my husband. Jon and I have been married for 7 1/2 years now, and what a journey so far! The great and exciting thing is that the journey isn't anywhere near the finishline and we have so much more to experience together. The happenings of the last month have given me a newly rediscovered respect and love for my husband. It's very endearing to see how much he cares for and takes care of me. Not once during the last month has he complained about all the help and support I've needed. He's just been there ready to give it.

I am thankful for my children. Each one of my children has brought something special to our family. I am so grateful for the dynamics of their personalities and how they interact with each other and our family as a whole. They are special spirits who are teaching me new things every day. How lucky I am to be their mother, and to be entrusted to their care. I am very grateful that they chose to come to Jon and me.

I am grateful for my family, friends, and loved ones. If it were not for each of you, the road we are travelling would be much harder to walk. It is because of you that we do not have to walk alone. I am grateful to each of you for your love and support.

I am thankful for the small things that we really take for granted - a roof over our heads, food in our pantry, and clothes for our backs. I have realized many times during the last month how lucky we are to not need to worry about these basic essentials.

And finally, I am thankful for the Gospel of Jesus Christ and its role in my life. I feel humbled to hear of how our blog has inspired and lifted each of you. I am grateful that I have a way to share my testimony with so many. I pray that I will be able to continue to be inspired in my writings and musings so that each of you might be blessed with the same feelings of peace and comfort from the Holy Ghost.

We were able to travel to Stark City on Wednesday to spend Thanksgiving Day with Jon's family. We arrived that evening and were thrilled to find out that there would be quite a large crowd for dinner the next day. As a matter of fact, there was such a large crowd that we had dinner in the cultural hall of the local LDS church. And the food was fabulous!!

Josephine was a major hit, of course. As soon as we got there, we introduced her to Grandma Lenore who was quickly escorted to the couch to hold her. And so the precedence was set. I'm not sure Josephine's back touched a bed or a couch more than just to change her diaper. :) But, seriously, I am so thrilled that so many of Jon's family were able to meet her this week. Depending on how Miss Josephine is doing in the next couple of weeks, we will hopefully be able to have some more time to spend with them.

Josephine is doing very, very well, and as I've said before, it's during these times that I almost forget she is sick. We have upped her feedings again to 48 mL, and she's taking those very well with little to no residuals right before each feeding. Just to look at her, you can tell that she is growing. Her preemie clothes are beginning to fit well, and her face is really beginning to fill out. Her next pediatrician's appointment is next Friday, so we'll be able to find out then how much weight she has put on. I'm going to put in my guess at 4 lbs. 7 oz. Any other takers...?

Hope all of you had as marvelous a Thanksgiving as we did. Blessings to each of you....

Tuesday, November 25, 2008

Thanksgiving Plans


It's hard to believe that Thanksgiving is this week. And we have much to be thankful for. People have been sharing their Thanksgiving plans with me and it wasn't until this last weekend that I even started thinking about Thanksgiving and what we'd be doing. But finally we have decided what we'll be doing. All of our plans stemmed on little Miss Josephine and how she has been doing, and luckily, she has been wonderful! So... we will be travelling to Stark City, MO tomorrow to spend Thanksgiving day with the Bennion family. This will be their first time to see and meet Josephine. I'm not sure who's more excited - them or me! I can't wait for them to meet her! And she'll be meeting quite a few of them - Grandma Lenore, Uncle Sam & family, Aunt Lucy & family, Aunt Anne & family, and Aunt Jeanne & family. It should be a great time with lots of visiting and LOTS of yummy food!

Jon went to pick up my brother, Paul from Columbia last night. He's staying with us until we leave tomorrow. And Uncle Paul got to hold Josephine for the first time today. He spent a few hours with us in the NICU, but never got to hold her. I'm so glad he's here visiting with us!

James has been quite the big brother over the last few days. He's been giving her hugs and kisses every chance he gets, and has been very concerned about her every time she fusses. He loves to hold her and have his picture taken. What's funny is that when we are finished taking pictures, he's finished holding her. :) Marian has been quite the helper recently, too. She's been feeding Josephine most of the time in the evenings now. She loves to do it, and it's been a great help to us.

Hope all of you have a blessed Thanksgiving day. I'll share pics from the Bennion family visit soon!

Monday, November 24, 2008

Gratitude


We are feeling very grateful today. While the benefit auction at the school yesterday had a small turnout, it was still successful and it was wonderful to see some of you there to show your love and support. We are grateful for your generosity. As you can see from the picture above, it wore little Miss Josephine out! She was a good girl throughout the benefit yesterday. I hope that many of you were able to get a peek at her. Jon was playing protective Papa Bear, but tried to take her around for people to see her, too.

There have been a few people who have contacted me since yesterday to express their sorrow in being unable to attend the benefit yesterday, but still want to know some way they can help. So for those of you who feel the same way, I'll pass on the following information. My sister-in-law and niece are hosting an online benefit auction. They are doing this because Jon's family is spread out all over the U.S. I know there are a number of handmade items being listed, so if you like handmade things, this is the auction to check out. The site is linked in my sidebar and the address is http://sweetbabyjosephine.blogspot.com/. The auction starts tomorrow at 9 am.

We also went to Hedges-Scott Funeral Home today to start preparing for Josephine's funeral services. That was a very surreal experience. We are still taking things one day at a time, but know that if we have everything in order, it will make things less hectic when she finally does pass. The funeral director was able to give us some information and help us set up the basics with details to be decided when the time comes. We do know that her services will be held at the LDS Church on KK in Osage Beach and she will be laid to rest in Stella, MO next to Jon's father. Now that this much has been taken care of, I'll be putting it out of my mind until the time comes.

Thank you all again for your love and support. You have no idea how much it helps us just to know that each of you are ready and willing to help should we need you.

Sunday, November 23, 2008

Quick Update

I thought I'd post just a little update this morning. I'm sure I'll have more to post this evening.

Josephine is still doing very well. Jon and I were noticing how much older and bigger she looks. Her feedings have been going well. She's been digesting her full feedings will little to no residuals. We really think that the Pedialyte is helping tremendously. It helps her to move things through her system a little easier.

We've also realized that we hadn't taken any pictures in the last few days. Definitely need to buy some batteries! We've been so thrilled with our pictures from Amy that we've been looking at them over and over again. I bought some frames yesterday to create collages so we could hang them up ASAP. So far we've only printed 4x6 photos for those frames. I'm sure we'll have numerous requests for wallet sizes. :) We'll have to wait until we go to Springfield or Columbia to print our large copy of our family photo. Unless there's a photo lab around the Lake that I don't know about (and there very well could be), the photo labs in Wal-Mart and Walgreens don't print any larger than an 8x10.

Today is Josephine's Benefit Auction at school. We'll be attending and hoping to see many of you there. We are very grateful for the donations and support from all of you. Jon and I have noticed how much easier it is to be on the giving side of a charitable act. It is incredibly humbling to be on the receiving side. We are filled with gratitude and love towards all who have helped us so far. Thank you from the bottoms of our hearts.

We'll post more this evening after the benefit - hopefully, with some pictures!!

Thursday, November 20, 2008

We Made It!!


The above picture is just a teaser! If you want to see the rest, you can visit my Picasa Album. (Thank you, Melissa!) I went to Jeff City on Wednesday after my dr.'s appointment to pick up our pictures from Amy. They are absolutely wonderful! Amy did an amazing job, and we will definitely be going back to her for our family portraits again. If any of you are looking for a photographer, look no further!
Josephine has made it to her next milestone: one month old. And what an amazing month it has been as well. Time has flown, but has also stood still. I'm sure you know the feeling. We continue to be amazed at her strength. It turns out that our little "on-edge" weekend was caused by a little viral infection. Her body just had to fight that hard to get rid of it. We didn't end up going to the pediatrician on Monday like we expected. Dr. Russell didn't want us to bring her in that afternoon and expose her to the sickness there. The afternoons are when his sick patients are scheduled. After describing her symptoms, he told us that it sounded viral and he wouldn't prescribe antibiotics anyway. (Antibiotics are for bacterial infections only - just in case you didn't know.) He told us to replace one of her feedings with a full dose of Pedialyte, increase her fluids, and we could give her a little Tylenol for her fever. And *abracadabra* - she's feeling much better now. She's still holding her breath from time to time, but no longer turning purple or blue. We definitely like her pink!
I want to take a moment and tell you all how blessed we've been with our medical staff. I just have to toot some horns! Jon and I both feel that we have been blessed with THE BEST medical personnel on all levels of this experience. The OB nurses at Lake Regional are so wonderful. I definitely got to know the day/afternoon crew with all those non-stress tests during the last month of pregnancy. And it was very comforting that they were the nurses that were in the operating room with me during my c-section. The staff at Baypoint Maternity are wonderful as well. It's great to go to a doctor's office where the staff knows you by name and extends such a warm friendliness towards you. And my OB, Dr. Schwartz is definitely the best OB at the Lake! I couldn't possibly give all the details of my care over the last several months (it would take up too much time and space), but I can say that I am thankful that I have a doctor that takes both my and my baby's best interests into consideration every step of the way.
Josephine's caregivers have not been any less wonderful! The nursery nurses at Lake Regional did everything they could to help her before the pediatrician recommended the move to Children's Hospital in Columbia. Once we got to Columbia, the NICU nurses were phenomenal! The nurses there were signing up to "reserve" their spot to be Josephine's nurse during their shift. It was very nice to see that level of caring extended to their tiny patients. The NICU doctors were great. They were able to give us the information we needed plus all options available to us and help guide us in the best decisions to make for Josephine's sake. Cheryl, our hospice nurse, comes to visit us twice a week. She comes to check on Josephine and provide comfort to us. She has a very warm and caring personality, and has been able to help prepare us for the long road ahead. And last, but not least, our pediatrician, Dr. Russell. Josephine is his first Trisomy 18 patient, but with each visit, he has been able to tell us a little more about what's going on with her. This has provided some relief to us for when we are feeling most unsure about everything that is happening.
And not only do we have this great medical personnel working with us, we have each and everyone of you who support and pray for us. How blessed are we! Thank you again from the bottom of our hearts. We know that our strength comes not only from our faith, but also because of the power of your prayers. May God bless each of you!

Tuesday, November 18, 2008

Camping on the Couch



The past few days have been full of everything and nothing all at the same time. Our Saturday was spent keeping an eye on Josephine and her apneic episodes. She had a few, but it wasn't until the evening when they began to get bad. On Saturday night, Josephine got her first official bath. As you can see from the picture, she rather enjoyed it! She relaxed and liked feeling the warm water run over her. What she didn't like was the abrupt change in temperature after getting her out of the bath! She wasn't too thrilled with the lotion afterwards either. But when all was said and done, it wasn't so bad. You know, it's funny the little things that you forget about until you have a newborn around again. I had forgotten how much I love the "fresh from the bath" fuzzy baby hair! And the new baby smell is the best!

After her bath, she had a few more episodes and we saw that more and more stimulation was beginning to be required. After awhile, her episodes increased in frequency, but decreased in depth and we noticed that she would pull herself out of them. Since then, we have not done much in the way of stimulation except to talk to her and rub her chest and back a little. Because of the frequency, we have spent the last three days and nights on the couch to be close to the oxygen concentrator. She doesn't require the oxygen all the time, but after a particularly deep episode, we give her some just to help "pink" her up again.
Sunday was the roughest and the day that had us worried the most. She was lethargic and slept most of the day. Her apneic episodes were happening every 10 to 15 minutes and since her little body was working so hard to breathe and circulate blood, her digestive system was VERY slow. She had one feeding at 9 am and then didn't eat again until later that night, and those were partial feedings. We had stopped her feedings because she wasn't having any bowel movements and her residuals (the amount of milk left in her stomach) were very high. We did give her Pedialyte throughout the day to keep her hydrated, and by late Sunday evening, she finally had a small movement. We had the on-call hospice nurse come out to check on her. We mostly just wanted to make sure that we were doing everything possible to keep her comfortable.
Monday was much better. She still had fairly frequent episodes, but not nearly as serious. Her bowel movements and wet diapers increased throughout the day and she went back to her full feedings with no residuals. Today we noticed that she has a slight rise in temperature and her bowel movements are slightly green. This could be a sign of an infection, so we are going to take her to the pediatrician for some antibiotics. If she does have an infection, this would help to explain the last few days.
I'd say the hardest part to all of this is just the pure bewilderment. We're never sure if this is just a little sickness or if we are nearing the end, and it's at those moments we truly start the cherish the present time we have. We feel incredibly lucky to have been able to bring her home and have this time with her. For now, we are focusing on each moment and the wonderfulness of our little family.

Saturday, November 15, 2008

A Change of Plans



Today we got some good news and some not so good news. The good news is that Josephine has gained 5 ounces this last week. we are very happy about that. She really has been eating a lot and she really lets us know if she thinks we are skimping any. She still eats every three hours on the hour, but over the last week we raised her amount twice. We are only up to 42 cc each feeding with about 5 or 10 cc of pedialyte between feedings. Even with this she usually starts to fuss a little about a half hour before her next feeding. Dr Russel our pediatrician told Clara that we would know better than he when she needs an increase of food, but only to raise it by about 2 to 3 cc at a time. Like Clara said in her last post Josephine is doing remarkably well. She is alert more of the time and we are coming to know her little personality more and more each day.
This brings me to the not so good news. Since Josephine has been doing so well we decided to take a trip to visit my mother this week end. As of yet my mother has not been able to meet her newest grandchild. Due to her age and health concerns she is not able to travel far, so we planned the three hour trip to visit her in southwest Missouri where I grew up. Now before anyone should become alarmed we have spoken with our pediatrician and he has told us that there is really nothing we can do to forestall or hasten the eventual outcome of Josephine's condition and that we should, as much as possible, try to do normal things with her. So if for no other reason that I wanted to see my mother, we decided to take this trip. Anyway, half an hour into the trip Josephine stopped breathing and turned quite blue again. This happened as we were in the middle of a convoy of tractor-trailers west bound on interstate I-44 just outside of Lebanon. Needless to say it was a stressful moment while we made it to the nearest off ramp and coaxed our little girl into taking a breath. We don't know how much time we will have with Josephine we could have today or we could have longer. There is really no way of telling.
I'm very sure now that Josephine's blue periods are related to her digestive functions, because as soon as she had a rather large bowl movement she began breathing again. Poor kid, the whole incident left her absolutely drained and limp in my arms. We decided that it would be best if we postponed the trip to grandma's till another day, and we headed home. By the time we got back home all three of our children were sleeping peacefully.
Right now Josephine is doing well. She has eaten twice since getting back and has had no more blue spells. She has had a rumbly tummy, but simethicone and pedialyte between feeds has kept things moving along nicely. I'm sorry if I alarmed you Mother, we'll try this again another day.
I love this little girl, more than my meager words can express. I am grateful to the Lord and especially to my wife, Clara, for giving her to me. My natural instinct is to wall off my heart in anticipation, but this little angle has opened my heart in ways I could never have imagined. She has inspired me and motivated me to be a better person. Episodes like the one we had today truly terrify me. I know now what my father was going through when he wheeled my mother away from the glass when their first born son, Mathew, struggled for breath and died. It's a hard thing watching a child die, and if there were anything I could do to keep the pain of it away from Clara I would do it.
Since Clara and I found out about Josephine's condition, we have been steeling ourselves for her eventual death. It may seem that we have resigned ourselves to her fate. The truth is that we would like nothing more than to have our little girl stay with us forever. I really want to see this little one grow and mature and live a normal life. I even want her to bring home a boyfriend and drive like a crazy teenager, but sometimes things like this just don't happen. Sometimes the people we love the most die. Sometimes bad things happen to good people. It is easy to be angry and say, "life isn't fair." Well the truth is that life isn't fair. Life is cruel, harsh, and painful, yet it is in this life that we are able to find our greatest joys. The happiness that I feel at being a proud father is made all the sweeter by knowing how scarce and precious this time with Josephine is. It is also made stronger by knowing that this little girl is ours forever. I know that Clara and I have been sealed to eachother and to our children for time and all eternity. If we live up to the covenants we have made with the Lord, we will be reunited with our family in the next life. I am greatful for and humbled by this knowledge. I know that our Savior lives and through his atonement we can find our greates joys in this life. One of the greatest is that of an eternal family.
May God bless you all.
Jonathan

Friday, November 14, 2008

Biology 101


Numerous people have been asking how Josephine is doing, or if she has been improving. I tend to bite my tongue when answering, but can honestly reply that she is doing well. No more blue spells recently, she's eating more and gaining weight, and she's really starting to let us know her personality. Now, the reason I hesitate to answer this question is that for some people, as I'm relaying all this great news, have expressed hope that Josephine will recover from this. Unfortunately, the answer to that is no. I realized that many of you who are reading this blog don't have the background in Biology that I do, so I thought I'd take time for a little tutorial. You can access this info here.


Trisomies develop while the egg/sperm is developing. It occurs either during the first stage of meiosis, called meiosis I, or during the second stage of meiosis, called meiosis II. What happens is that as the chromosomes are pulling apart, instead of one chromosome going to one egg/sperm and the other going to the other egg/sperm, both chromosomes get pulled into one egg/sperm. This results in one egg/sperm with double the information and another egg/sperm lacking some of the information. This is called nondisjunction, and this is what 95% of Trisomy 18 cases are. When the egg/sperm with the extra chromosome is fertilized, this results in three chromosomes. In Trisomy 18, it is three of the 18th chromosome. In Trisomy 21, or Down's Syndrome, it is three of the 21st chromosome. Hopefully, the picture below and the link above will help to understand how this occurs.


Nondisjunction during Meiosis II

The important thing to know is that this is a genetic disorder, not a disease. A disease is something that you can treat and usually cure. A genetic disorder causes symptoms and characteristics that never go away. You can treat these symptoms and characteristics to make life more comfortable, but they will never be cured. A perfect example of this is Josephine's heart. We are treating her heart defect with Lasix and Digoxin. Both of these help her heart to work more efficiently, but will not "cure" the three holes in her heart.

I hope this has helped some you understand her condition just a little bit more. Unfortunately, this is not like cancer. Josephine will not "beat" this. She will always have this condition and one day, it will take her life. What we do know is that she is a remarkably strong little girl and has already survived longer than she was expected to. Each day with her is a blessing, and we are thrilled with her progress and improvements. She has been an inspiration to us, as you have read, and we marvel at her strength. She is precious beyond words and we are grateful that she is ours.

Wednesday, November 12, 2008

Wow! Three weeks....





Today we are celebrating Josephine's three week birthday. No special cake this time, just some well deserved hugs and squeezes.

Her hospice nurse came to visit today, too. Cheryl is just awesome!! We're so lucky to have been assigned to her. Cheryl was amazed at how well Josephine is doing. She came at feeding time, so she sat with us and talked through some things while Josephine ate. Cheryl was pleased with everything she noticed about Josephine today. She was alert and active, and Cheryl agrees that she has been filling out.

We took it upon ourselves to up her feeds again to 42 mL, and so far she has done very well. She has little to no residuals before the next feeding. The Lasix (one of her meds) has really been doing its job as a diuretic, so we've also been giving her the Pedialyte between feedings and that has seemed to help with the dehydration. But that does amazing things to the number of diapers we're going through! :)

We have been so blessed during this last three weeks. And today was no exception. My cousin, Debbie, called me this morning to ask me about doing a benefit auction for Josephine. She had already organized the entire thing and gotten the OK's from the right people, but just needed my approval for the final go-ahead. Debbie has asked me to let everyone I know about it, so here is the information.


Benefit Auction and Live Music for Josephine Elizabeth Bennion
Sunday, November 23rd
4 - 6 pm
RC Worthan Auditorium at Camdenton High School

Contact Debbie Napier with questions and donations (417) 426-5547 or (417) 664-2682

Donations for the auction are requested. These can be anything! Gift certificates, quilts, baked goods, crafts, products and services, etc. These donated items can be delivered to Debbie or to me. Thank you all so much!

I feel so lucky to have been blessed with all of you in my life to give my family and me all the love and support that you have. May God bless each of you with that same love and support.

Monday, November 10, 2008

Just Another Day in Paradise

We have actually had quite the uneventful weekend. No major excitement - and that's a good thing!! It's hard to believe that we've gotten into somewhat of a routine. One third of my day is taken up with either feeding or preparing to feed. The first 20 to 30 minutes is spent feeding Josephine and the next 20 minutes or so is spent pumping. So one hour out of every three is set aside for feeding or something related to it. Makes for a really exciting day!! ;) The rest of our day is spent doing little things around the house - laundry, dishes, playing with James, etc.

Jon has been laying the tile for our hearth. We should have our woodstove up and running by tomorrow evening if everything goes as planned. He's done a great job. I can't wait to see how it all looks when it's put together.

Josephine is really starting to be alert. She's spending more and more time looking around and checking things out. She likes to sit in her swing and watch the lights and the mobile above her. We still don't turn on the swing - she's so light that it seems to swing out of control. I swear one of these days it will swing all the way around like a carnival ride!!

We haven't had any more "blue" spells since her last one on Friday at the end of our photography session. That has been a relief. That 24+ hours was torturous!! And it's days like we've had this weekend that we are truly blessed and almost forget that she's sick. They are relaxing and we get to spend time just getting to know our little girl. For example, she likes to sit up while we're feeding her; she loves to cuddle against my chest, but only in a way so that her ear is against my chest and she can hear my heart; she likes to have wiggle time just laying on a blanket on the floor or on my bed; and she prefers to sleep on her right side. It's hard to believe that she'll be three weeks old on Wednesday. Our next big milestone is one month old.

On Saturday, we went to the Harvest Dinner at church. It really has been great to be able to get out of the house from time to time, and be able to take her with us. We were starting to worry that after all of her episodes on Thursday, one of us would always be under house arrest, so as not to be too far away from the oxygen concentrator. (The portable tanks don't last that long.) But after talking with Dr. Russell, her pediatrician, on Friday, we are much more comfortable with just doing things as we normally would, or close to normal anyway. We are still keeping her at home away from the colds and flus that are going around as much as possible. We're going to try for another outing later this week. Maybe we'll venture up to the school so she can meet everyone up there.

Friday, November 7, 2008

A Great Day



It's funny how having three children to tote around can make just a couple of things to do become an all day event. I know, I know. Those of you who already have three or more are saying, "Duh!!" It doesn't help that I feel like one of those first time mothers that has to take everything but the kitchen sink on each outing. But the truth is, I do have so much more to carry with us when we go - diaper bag for two; syringes, feeding tube, and the like for each feeding; medications; and portable oxygen tank. I'm sure I've missed a few things, too.

We started our day by going to Jeff City for family pictures. We went to a photographer named Amy Knollmeyer. We had pictures taken of our entire family, just the kids, Josephine with Mom and Dad, and then just Josephine. We are anxious to see the pictures. They should be ready in a week or so.

We also went to Josephine's pediatrician appointment. She's gained a whole ounce!! Yeah! We're up to 3 lbs. 12 oz. He also told us that her "blue" spells are probably due to her digestive system throwing her circulatory/respiratory systems off balance. Basically, as she's trying to pass gas or a bowel movement (sorry if that's too much info), her chest cavity is changing pressure which causes the blood in her heart to move backwards, if you will. Then her body isn't getting the oxygen it needs. Dr. Russell told us that our stimulating her is exactly what we should be doing. He reassured us that nothing we are going to do is going to hurt her or hasten her passing. He told us that when it's her time to go, no amount of stimulation will fix anything, so if stimulation is working right now, keep doing it. We're also to be giving her simethicone drops and pedialyte as needed to help ease any bowel discomfort.



We've also received a number of wonderful packages in the mail during the last couple of days. Josephine's Aunt Lucy sent her some booties. They are adorable! I think she'll have to wear socks with them though. Her Aunt Jeanne sent the above dress, slip, bloomers and bonnet. Jon's nicknamed them her "Angel Robes." This is what Josephine will be buried in. They are beautiful, and we are very grateful for Jeanne's talent and her thoughtfulness. Aunt Mary sent gifts for Marian and James as well. They each got a pendant with Josephine's birthstone. Marian wore hers during our pictures today. James will have his put in a safe place until he is old enough to appreciate it! :)
Well, tomorrow is another day. We've been so blessed to have so many! I'll post tomorrow's adventures tomorrow evening!

Thursday, November 6, 2008

Two Week Birthday!!








We're a little behind on posting for yesterday. We ended up running some errands and such. None of that is as important as the fact that yesterday was Josephine's two week birthday! Such an amazing two weeks it has been, too! A lady from church brought Josephine a birthday cake and as you can see, it was amazing! Almost too pretty to cut into.... almost. We are very thankful that she was so thoughtful.


Last night starting around 2 am and all day today has been more eventful. Josephine has had quite a few of her "blue" spells. She just stops breathing. It's not like she's gasping for breath; it's more like she just forgets to breathe. We spend the next 30-45 seconds (which seems like hours) stimulating her by rubbing her back and tummy or thumping the bottoms of her feet. We also give her "blow by" oxygen. We don't put an oxygen mask on her face, but we put an oxygen mask on her chest to give her some oxygen-rich air. We've been giving her oxygen off and on all day, both during her spells and after. We're not sure what this means. Hopefully, the pediatrician will be able to give us some info tomorrow. In the meantime, my mom is spending the night with us to help Jon and me get some rest. The three of us will be rotating shifts through the night to keep an eye on Miss Josephine.

We also had Family Home Evening tonight with Marian. We've been planning to do this since Monday, but somehow it didn't happen until tonight. Jon gave a short lesson on the Plan of Salvation (new link on the left). Marian took all of it in and understood the basics. Jon was then prompted to go ahead and tell Marian more about Josephine. Marian was quite upset, and understandably so, to find out that her baby sister will pass away shortly. We were able to remind her that we will be an eternal family and talk to her about how lucky we have been to be able to bring her home and spend time with her. We spoke with her about a few more spiritual things as well, and by bedtime, she was feeling better. She also spent some time just sitting on the couch holding Josephine and loving her. We'll probably give her the book that the social worker in Columbia gave us tomorrow. Jon feels horrible about being the one to tell her, but he said that he felt that it was the right time and felt that Marian should be able to prepare for it. As if you all aren't saying enough prayers for us, would you please remember Marian in your prayers and pray for her to have the same peace and comfort that Jon and I have been blessed with? We are very appreciative of all of your prayers and support. It is because of your prayers thta we have the strength to endure our trials. We can't thank you enough.

Tuesday, November 4, 2008

13 Days Old







Josephine is 13 days old today. We feel very blessed to have had these last two weeks with her. We are beginning to get a routine here at home. The hardest part of the routine to work out has been the night feedings. I think we've got something worked out though. One of us is feeding Josephine at 11 pm and 5 am and the other one of us is feeding her at 2 am and 8 am. This gives each of us at least five hours of uninterrupted sleep. Last night was our first trial run - I did the 11 - 5 schedule, so after I fed Josephine, I got Marian up and ready for school. It seemed to work out pretty well, so we'll try it again tonight.
Jon has been spending his time off getting the house winterized. They've started developing the land behind us, so Jon has worked out a deal with the developer to cut the wood. We had just purchased a woodstove before Josephine was born, so he's been working hard to build up a wood supply for the winter. Jon will also be installing our woodstove this week, and reseal the windows and doors.

Marian is riding the bus to and from school during my leave. She has been very excited. We are so very proud of her and all that she has accomplished in Kindergarten already. Just a little brag... she's in the first grade reading group, and really loves to write and read. She's been a helpful big sister, and loves to sit on the couch holding Josephine.

James has been doing very well being at home with Josephine and me. We've only had one incident.... James was really wanting to hold his baby sister, and she was sitting in her swing. I walked in the living room to find that somehow he had already pulled her blanket out from under her (magician in the making?) and was trying to figure out just how he should go about picking her up. I was able to convince him to let me help him and directed him to the couch where he could safely hold and love on his sister. James has shown no signs of being jealous of Josephine. Many people warned me that he would, but he is so loving towards her. He frets everytime she cries, and has been very interested in her feedings. It's wonderful to see how much he loves her.

I have just been doing the little things around the house - light housework and taking care of Josephine mainly. I'm only taking my ibuprofen twice a day as needed for some tenderness at my incision site. Otherwise, I'm feeling very well.

On Friday, we will be going to the pediatrician for another check up. We're trying to keep a close eye on her weight. I'm thinking it's about time to up the amount we're feeding her. She's started getting fussy as we get close to feeding time, but as soon as we fill her belly, she's happy again.

We are also going to Jeff City to have pictures done on Friday. We were introduced to a service called "Now I Lay Me Down to Sleep" earlier this week. They are a non-profit organization that works with photographers to provide photographs at no charge to families who lose a child in infancy. They do some amazing work. I've posted their link to the left. Feel free to check them out.

During the last week, we have been very blessed to have women from church providing meals for us. We are very appreciative, and they have been delicious!! So thank you to those who have already brought us meals and an early thank you to those of you who have volunteered to bring meals later. It has been a relief to have one less thing to think about! Thank you, thank you, thank you!!

Monday, November 3, 2008

Trailing clouds of Glory

I am one of those people who once awake cannot fall back to sleep. So, since it was my turn to feed Josephine I sat and watched her for a while. Most of the time Josephine sleeps. It seems that just simple processes of respriration and digestion seem to use up all of her strength. This morning however she was bright eyed, and looking around. I know every parent feels this way, but Josephine is truly a beautiful little girl. As I held her I was wondering what sort of things she could posibbly be thinking or experiencing. In a way I began to think of my Father, Owen Bennion, who passed away this January. He was the kind of man who loved little children, he must have he and my mother, Lenore Wood Bennion, had thirteen of them. I remembered him talking about where little children come from, and how wonderful and precious they are. He would often quote from William Wordsworth and say something like "they come trailing clouds of Glory." Like too much of what my father said I didn't pay much attention to this, but as I sat here holding my daughter, I decided to find out what the real quote was and the context that Wordsworth had said it in. If you have never read Wordsworth's Ode "Intimations of Immortality from Recollections of Early Childhood" here is a link. http://www.bartleby.com/101/536.html The part my father often quoted is this:

Our birth is but a sleep and a forgetting:

The Soul that rises with us, our life's Star,

Hath had elsewhere its setting,

And cometh from afar:

Not in entire forgetfulness,

And not in utter nakedness,

But trailing clouds of glory do we come

From God, who is our home:

Heaven lies about us in our infancy!

I know that Josephine is not just some genetic mistake, some construction of eons of evolution. She is a spirit daughter of our Father in Heaven, who has left his presence to come to earth to gain a mortal body. I know that her problems and disabilities are not a curse either, but are in truth a blessing. She will never loose her innocence. She will never loose the purity which she brought from our premortal home.

We each owe a death. This is simply part of life. And it is through death that we partake in one of the greatest of Christs miracles, the resurection. Christ has broken the bonds of death for us. I know as did the prophet Job that,"For I know that my redeemer liveth, and that he shall stand at the latter day upon the earth: And though after my skin worms destroy this body, yet in my flesh shall I see God."

Josephine is a wonderful little girl. She gave her mother and I quite a scare today, when she quit breathing again. The thought of her leaving terrifies me, as it does her mother, but we are greatful to know that through the atonement of our Savior she will live again, as will we all, and that through the blessings of the Temple we will be reunited as a family for all eternity.

I love this little girl, more than I could ever express. Clara and I were discussing the likelyhood of having more children and the odds of having another baby with Trisomy. As she was looking up the diferent numbers on the internet she came across the number of pregnancies that are terminated. We each must make our own choices and live with the concequences. I for one am greatful for the eleven days of joy we have had so far with this precious little infant. We are humbled and honored to be entrusted with this gift, and to help Josephine gain her mortality.

Jonathan Bennion

Sunday, November 2, 2008

First Big Outing

Josephine went out for the first time today to her first official outing... church. Normally, I don't take newborns to church for the first couple of weeks, but knowing that her time with us is short, I felt it important that Marian and James (and Jon and me) experience church together as a family. (Plus, I know a number of ladies that would hurt me if they didn't get to lay their eyes on her at least once! :P) It was wonderful to sit together as a family and listen to the testimonies of the congregation today. I've been struggling the last few days with some awful thoughts and feelings of hoping and wondering if I had truly done all that I could to make sure that we were, in fact, an eternal family. Isn't it awful how Satan will tempt us and try us even when we are already in the midst of adversity? As soon as I walked into the chapel today, I felt a rush of the Spirit that remained with me throughout the entire meeting. It was wonderful to feel my Heavenly Father answering my prayer that yes, indeed, I was doing everything required of me to have my eternal family.

Our Relief Society lesson was on expressing gratitude, and at one point, we discussed expressing gratitude to our Father in heaven even in adversity. If it hadn't been for this week, I'm sure I wouldn't have given this topic much thought. But, today I realized just how much this week has helped increase my faith, testimony, and gratitude. My relationship with my Heavenly Father and in my Savior, Jesus Christ, has strengthened. My relationship with my husband has strengthened, and my relationship to my older two children has strengthened. I am grateful to have the opportunity to strengthen these relationships. They are truly the most important relationships in my life. I am grateful that my eyes have been opened to the reminder of how important these relationships are to me. I am grateful that in my adversity, Heavenly Father has blessed me to be able to see the wonderful things that are happening as well. I am grateful that I have had the opportunity to increase my faith by having to so fully rely on my Father in heaven. I just reinforces the knowledge that my Heavenly Father in aware of my happiness and my trials, and wants to be in both parts of my life.

I had planned to bear my testimony during church today, but once the time came, decided not to. So I hope you all don't mind if I take a few lines to share my thoughts with all of you.

I know that my Heavenly Father loves each of us, and bears our burdens with us. He is truly our Father in heaven. I know that we have been blessed with the fullness of the gospel. I know that in this restoration we have been given the opportunity and privilege to participate in sacred ordinances in the temple, and that it is only through these sacred sealing ordinances that we are able to have the blessings of eternal marriage and an eternal family.

I have a testimony of the priesthood. I am thankful that there are worthy priesthood holders in my life that can administer to my children and to me. It was such a wonderful experience to have those wonderful men show up or call at just the right time that they were needed to perform those blessings. It happened on more than one occasion this week. We needed to administer to Josephine before she went to Columbia, and Mike Lawhead called exactly at the right time to be able to do that. I needed a blessing once I was in Columbia, and Jon's old roommate, Eric Downs, called and visited out of the blue. We were afraid that Josephine wouldn't be coming home, and our other college friend, Clark Andelin, was there so he and Jon could give Josephine a name and a blessing. Each time, we were blessed with exactly what we needed. With this, I know also with utmost surety that our Heavenly Father is aware of our needs and answers our prayers and blesses us with exactly what we need, exactly when we need it. What a wonderful blessing!

I pray that each of you who read this will be blessed with the Spirit, even the Spirit of comfort and know what joy the gospel of Jesus Christ will bring into your life. I say these things in the name of Jesus Christ. Amen.

Saturday, November 1, 2008

Ten days old.

Today is day ten since Josephine was born. It was a great day. As you can see Grandpa Woody came to town from Ohio. Along with him came Grandma Teresa and Aunt Connie and Uncle Sam. Their visit was short, but very sweet and tender. How is it that a girl with such little fingers can so easily twine such a big man around her little one. The big kids got to visit and play with Uncle Sam and Clara got to visit and have some much needed girl talk with Aunt Connie and Grandma Teresa. (somehow I just can't fill that bill) As for me Woody and I were able to talk man to man and get some work done around the place. I have a long way to go to get the place ready for winter. I think I will take next week and get everything winterized. We were sad to see them go, and many a tear was shed at their leaving.

We also got phone calls from three of my seven sisters. It was very nice to speack with them. I was very touched by their concern for me and my wife and children. This ordeal is certainly tierra incognita for Clara and I, but sadly not for my sweet sister Annie. One of her eleven children passed away in infancy. It was very comforting to have someone who knows my pain and fear, who has walked the road I am on, and can council me on how to weather the aproaching storm. May the Lord bless all those who have given so freely of their aid and compassion. We pray for you all.

As a side note we finnaly added some music to this site. I am not very adroit at this sort of thing and have not found a way to have the songs come on automaticaly, but if you click on the icon at the bottom of the page you may listen to a selection of lullabys , hymns and songs we like to play for Josephine.

Good to be home.

What can a father say, I am very proud of my children. I begin to understand the 127th psalm where it says, "Lo, children are an heritage of the Lord: and the fruit of the womb is his reward. As arrows are in the hand of a mighty man; so are children of the youth. Happy is the man that hath his quiver full of them: " For those of you who don't know me I am the youngest of thirteen children and Josephine is grandchild (including great grandchildren) number one hundred and two for my mother. It is humbling to think that the Lord has entrusted the care of His precious spirit children into my unworthy hands. Parenthood is a very serious business. One of the past presidents of our church said, "No other sucess can compensate for failure in the home." My hope and prayer is that along with Clara we can help these little ones find the way back to their Father in Heaven.

Friday, October 31, 2008

We're Home!

We made it home yesterday around 7:30 pm. Just in time to get ready for Josephine's next feeding. She is on a schedule to be fed every three hours. Of course, this means that we'll never have to worry about sleeping through the night. :)

Our first night at home was very peaceful. We are very happy to be home with all three of our children. It's amazing how much children grow in one week. I would swear that Marian is at least two inches taller, and James, well... James just seems huge!! Only a week ago I was commenting about my petite little boy. Now he doesn't seem so small!

Josephine did very well last night. One of our nurses had suggested co-sleeping so that we could get to know her breathing patterns. So, I slept propped up on pillows with Josephine swaddled on my chest. She was very peaceful all night. I think she liked being able to hear and feel my heartbeat. And it was very special for me as well.

We went to see Dr. Russell, our pediatrician, today. Josephine is up to 3 pounds 11 ounces. That's up one ounce since Wednesday. Dr. Russell told me that Josephine will be his first Trisomy 18 patient. He said he will be keeping in close contact with the doctors in Columbia so as to make sure that he can give Josephine the best care possible. We will be visiting him again next week to check her weight. If she seems to have lost any, we will increase the amount we're giving her. He said as long as her weight remains steady or increases, then we will go longer between visits.

Hospice also visited today to get the preliminaries set up. We should be meeting with our nurse at the beginning of next week. They are very lovely ladies and we are grateful to have Josephine in their care.

Time for feeding.... Thank you all again for your thoughts and prayers.

Thursday, October 30, 2008

Homeward bound


Sorry it has been so long since our last post. We have been quite busy. Initially we thought we would go home on Wednesday the 29th, but the doctors wanted to be sure of Josephine's Degoxin levels before they let her go. (Degoxin is a medication that helps her heart beat.) Their decision to wait was confirmed when Josephine began to have problems with vomiting. After tests, it was determined that her duodenum is a little malformed and has a tendency to twist, causing it to become obstructed. In normal situations, this can be remedied with a simple surgery; however, we have opted not to do the surgery. Josephine's preliminary results for her chromosome scan have come back positive for trisomy 18. This is the reason why we have opted not to do the surgery. It would not prolong Josephine's life and would only cause unwanted pain and suffering on her part.


We did opt to place her on an IV last night so that the nurses could administer pain medication as needed. This is not a permanent thing because we will be taking Josephine home today. We are very glad for this because Marian and James are on their way here right now. It will be good to have all my babies together again. Our social worker, Dasi, gave us a tender little book to help us help Marian and James understand what is happening. It's called "We were gonna have a baby, but we had an Angel instead." It is a very touching book and let me tell you, it will make the roughest old trucker cry.


Last night I received a call from my sweet sister Jeanne Mitchell, who has offered to make Josephine a little white dress. Clara and I had been looking at holiday dresses, many of which are mostly white, but they were all too big. Since we had planed to to be home for Sunday we initially thought to give Josephine a "Name and a Blessing" then. However we felt impressed to do it last night. For those of you who don't know in our religion we perform an ordinance in which worthy holders of the priesthood will call on our Heavenly Father and give the infant a name by which they will be known in life and on the records of the Church, followed by a blessing for the child. When we first came to Columbia I had made a call to Bishop Jones and asked his advice on whether or not we should go ahead and perform the ordinance. He told me to do what the Spirit directs and then give him the details later. My good friend Clark was able to assist me in the ordinance. Once again I am so greatful to him for letting his light shine.


Well I need to go because my kids just got here. James is so excited to see his mom and sister. (and maybe a little excited about Mom's leftover cake;)


Thank you for the continued love, prayers an support.

You are in our prayers.

Jonathan Bennion

Tuesday, October 28, 2008

One More Day






We arrived at the hospital this morning and received news that they want to keep Josephine one more day. They want to be sure of one of her medications before they send us home. Apparently, the Digoxin level was not quite right yet. So the plan is to room in tomorrow night and come home on Thursday. We've already checked out of the Ronald McDonald House, so we'll have to make a phone call to see if they can accomodate us for one more night.
A hospice worker also came to speak to us today about setting up care for Josephine. We will have a nurse that will come in 2 to 3 times a week to check on Josephine and make sure she is comfortable. Our nurse will also help us to make the arrangements for her when the time comes. We have elected to bring home oxygen for her. She doesn't need it all the time, but when she gets agitated, her heart doesn't pump as efficiently and her lips start to turn blue. This will just be a comfort measure for her and is not meant to prolong her life. They will be working very closely with our pediatrician, Dr. Russell, to make sure that Josephine has the proper medications and care during her time at home.
Jon and I have been going through "teaching" as well. We know how to give her her feedings and medication. I think the only thing left for them to go over with us is how to insert her feeding tube. Once inserted, this tube is good for 30 days, so unless she pulls it out, we'll only have to do it periodically. We are excited to be able to room in with her tomorrow, but also a little nervous since we know how much care our little pea pod needs.

I noticed the other night that Josephine looks a lot like her sister, Marian. She has really started showing some color, and her olive skin tone complements her dark hair. She does have brown eyes already. I wonder how Marian feels about being the only green-eyed child.... :)

We got a phone call from Marian this morning on her way to school. It is such a blessing to have such a loving little girl. We are missing her and James very much. (Of course!) And we are very grateful that they have been able to stay with their Grandpa and Grandma Napier during the last week. I know that they are happy there and are well taken care of. But we will be so excited to be home with them later this week.

I have appreciated reading all of your comments and emails during the last few days. Many of you have told us how you are comforted and encouraged by our faith and strength. I can only say that this has come through our deeply founded testimonies in the gospel of Jesus Christ. If it weren't for the knowledge that we have of eternal families and the covenants we have made with our Heavenly Father, this would be absolutely unbearable. We are very lucky to have been blessed to have the gospel in our lives and we are thrilled to be able to share our testimonies with you. I have added a couple of links to our blog that help to explain the deep roots of our testimonies in eternal families and in the atonement of Jesus Christ. We understand that both Heavenly Father and Jesus Christ are bearing the burden of this trial with us and we are grateful for the feelings of peace and comfort that the Spirit has provided us here.