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.