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


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 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.

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. 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.