Wednesday, December 31, 2008
Monday, December 29, 2008
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
Wednesday, December 24, 2008
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
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.
Wednesday, December 17, 2008
Monday, December 15, 2008
Friday, December 12, 2008
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
Monday, December 1, 2008
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
Tuesday, November 25, 2008
Monday, November 24, 2008
Sunday, November 23, 2008
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
Tuesday, November 18, 2008
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!
Saturday, November 15, 2008
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.
Friday, November 14, 2008
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
Benefit Auction and Live Music for Josephine Elizabeth Bennion
Sunday, November 23rd
4 - 6 pm
RC Worthan Auditorium at Camdenton High School
Monday, November 10, 2008
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
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.
Thursday, November 6, 2008
Tuesday, November 4, 2008
Monday, November 3, 2008
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.
Sunday, November 2, 2008
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
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.
Friday, October 31, 2008
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.