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.