Abundance of Blessings

I've decided that it's time to start writing again. I've had many people tell me that they miss my blog. To be honest, I've felt like after Josephine, I didn't have anything to write that would interest anybody. I guess I'm wrong. I will warn you, that I still talk about Josephine..... A LOT. She is just as much a part of our family now as she was before. James still calls her "his baby," and surprised us the other day by calling her by name with no prompting from us. His 3-year-old speech can be hard to understand, but he said her name so clearly that there was no misunderstanding. James told us the other day that it was time to have a new baby come live with us. I asked him what we should name it. He thought awhile, and then said, "I don't know. You do it." :P

I wish I could put into words the emotions that I feel when I think about Miss Josephine. There is no sadness, no anger, no negative feelings at all. There is only peace, joy, love, and awe. The tears I shed now are for missing her, longing to know her better/more, and for realizing how blessed we were/are to have her in our eternal family. Perhaps there are no words. Perhaps the only way to share this is through my experiences.

My last post was in February. We have accomplished so much and so little at the same time it seems. We've done a few things around the house - planted a (neglected) vegetable garden, remodeled a bathroom, planted a rose garden. The vegetable garden gave us a few things, but we neglected it when we started with the bathroom remodel. (You can check out my pics on facebook.) After you see the before pics, you'll understand why we did the remodel this summer instead of putting up the privacy fence. And the rose garden is for Josephine. We put in three Knockout rose bushes along with a remembrance stone that my best friend, Amanda, gave us at Josephine's funeral. We are going to plant a tea rose in the center to stand out from the others to represent her. We just haven't found the perfect color yet. My favorite is orange, but orange roses are what my husband gives me - they don't represent her. When I see it, I'll know.

I did finally take sometime for myself last spring. It was wonderful to be able to just focus on my Church callings/spiritual nature, my family, and my only other required responsibility, teaching. It really helped me to understand the balance that I need in my life, but so often forget. I'm the type of person that when I'm working on a goal, I tend to go overboard on how much time I spend on it. And of course, that knocks everything else out of wack! We don't function well when I do things like that!

It was during this time that I found out I was pregnant again. Surprise to us! But unfortunately, it wasn't to be. At my 7 1/2 week appointment, I was diagnosed with a blighted ovum. I decided to wait for a natural miscarriage, and four weeks later, on Mother's Day, it finally happened. I had many mixed feelings during this time. Still that same peace that I had with Josephine, heartache from another loss, and actually, some relief that I wouldn't have another baby in the middle of the school year! I've decided that is TOO much stress! I threw a pity party for about a week - probably wouldn't have even done that if it hadn't been for the fact that I had about three or four nieces announce their pregnancies that week and one of them happened to have the same due date I had had. So the current plan is to wait until October to start trying again. That will give me a due date of middle to end of June. Kind of a necessity with my new extra duties at school!

Jon and I each finished out the school year; Jon has returned to Iberia as their Spanish and junior high communications teacher. I am still at Camdenton teaching Chemistry A and Biology B this year. Plus, I'm the prom coordinator! I'm really excited about it. I've had a few people tell me I'm crazy, but honestly, I love to plan events like this! I had so much fun planning the Prom at Walnut Grove while I was there. I can only imagine what we'll be able to do here at Camdenton! And now you see why a June delivery is necessary!

Marian is in 1st grade this year. She's such a big kid now. She's enjoying reading chapter books now. She's currently reading Charlotte's Web. I love watching her sit down to read, and being engrossed in her story. She also took an arts and crafts class in June for summer school. Marian LOVES art! She's mentioned a couple of times that she'd like to be an artist or an art teacher.

Well, enough update for tonight. I promise I won't be this long next time! Love to all!

Today is a Gift... That's Why They Call It the Present

It's amazing how much time I have spent away from our blog recently when it was such a huge part of our day just a month and a half ago. I think part of me avoids logging on because it's such a large part of Josephine and my memories of her. I'm not trying to avoid things linked to her because it's too painful. I think I have so much emotion wrapped up in these posts that visiting them makes all of those emotions very real again. I'm beginning to only smile when I think of her. That makes such a difference. I still can't begin to tell you how much of a blessing she was to us, to me. So many things in my life have shifted their priorities since she came to us, and I can feel a difference in my life, and I know it's because of her. Some things that were so important suddenly aren't, while other things have become quite important.

I look at Marian and James differently now. I've noticed that (most of the time) my patience with them has increased. I think it's great fun to watch them grow and learn. James is learning new words everyday. It's so much fun to try to figure out what he's saying! And he's soooo serious about the conversation he's carrying on with you! And Marian tries to be funny. She's at that great age where she's inventing her own jokes, but they're not funny and they don't make any sense. We just have to bear through them!

My relationship with my husband is so much better, too! And I'm especially glad for this. I know there can be a trend for a husband/wife relationship to fall apart after the loss of a child, and while I didn't think we'd fall apart, I did brace myself for some rough times. Luckily, they haven't come. Instead, we are closer than ever and are laughing and joking with each other more. I can't wait for Valentine's weekend and our trip to St. Louis. We're also planning a trip to Eureka Springs, Arkansas for the weekend after our anniversary in March. We haven't been there since our honeymoon. I think we're going to experience one of the bath houses this time and have a massage and spa afternoon. How luxurious!! Can't wait!

Hope you enjoy the photos. Just a few that we've taken recently.... and one with Marian's new haircut! The little girl next to Marian in the picture is from the little town where Jon is teaching high school Spanish. I have no idea what her name is. Marian tends to make friends wherever she goes!

Wow! We're busy!

Time really seems to get away from you when you're running in a hundred different directions. Being back to school has definitely kept me busy. There is always so much to do. I won't even begin to tell you about how many meetings they keep us busy with.

Jon has really jumped into teaching. He's really enjoying it, and he likes being at Iberia High School. It's a small school, so he's really able to get to know everyone there. Small schools are great to teach at. They can have their downs just like any other school, but I am grateful that I was able to begin my teaching career at a small school.

Marian got her hair cut the other day. She was sooooo excited. I don't think I've even taken a picture yet! I'll have to post one. She looks even older now, and she loves her "big kid" haircut. She has been reading up a storm, so much and so often that we've been forgetting to fill out her reading log for school! Gonna have to get on that!

James is just getting cuter by the minute. He's really putting sentences together now. Although, sometimes, they are still unintelligible! Over a week ago, he brought a balloon home from a store. After being hit in the face with it numerous times, Jon popped it. James has still not forgotten it. Just this morning, while we were getting in the van to head to Nicki's, he looked at me and said, "Daddy pop mine balloon." I guess we'll have to make sure we get him another one!

Other than juggling things at school, I've been busy with my Mary Kay business. I'm trying to get back in the swing of things, so I've been slowly booking facials and classes just to get back in practice of being in front of someone again. So if any of you are interested in a facial or a color makeover, just let me know. No obligations! I just need the practice again! ;)

This has really become quite an online journal for me, so please bear with me as I express myself....

Josephine seems to be more on my mind the last couple of days. I can't even express how much I miss her. I get up every morning knowing that I need to keep going, especially for my other two beautiful children. It still seems surreal that all of this has happened. I never dreamed that I would endure something like this during my life. And I certainly never dreamed that I could survive and be as strong as I have been able to be. I imagine that my first trip back to the temple will be rather emotional, especially as I sit in the Celestial Room. Jon and I are planning to go to the St. Louis temple and have a couple's getaway over Valentine's weekend. I can't wait to go and to feel the peace and comfort that is present there. I can't wait to sit in the Celestial Room and feel close to my Heavenly Father and my Savior.

At times, it seems like the two months we had Josephine were a dream. Then at other times, it seems strange that she's gone. Many times, my arms and heart just ache to hold her, to hold a baby. I wondered if having another baby as soon as Dr. Schwartz clears me would help that, and I think it could possibly, but I also realized that much of the ache is for her, not just another baby. There is no replacing her. I'm sure I'll know when the time is right to have another one. All three of the others had no qualms in letting me know and giving me a little nudge. :)

Well, I think I've rambled enough for tonight. Love and blessings to each of you!

Back to School

Well, three of us went back to school this week. Marian is absolutely thrilled to be back. She loves her teacher and being at school. She is glad that she doesn't have to ride the bus anymore. She told me she likes the time that she gets to have with me while we're driving to school. She loves to tell people that she's in the first grade reading group. We're really proud of how well she is reading and how much she is learning.

Jon went to school for the first time this week. He was recently offered a position to teach high school Spanish at Iberia High School. He's also teaching two sections of PE. Yes, I know. What a combination!! He's enjoyed his first two days. I'm watching him sit at the dining room table while he works on lesson plans. I know he has that good kind of anxious about it, and just wants to do a good job.

I also went back to school this week. It is bittersweet. I'm happy to be back, but also wishing there were a reason for me to be at home. I'm taking the week to review and to start thinking like a teacher again. I'm sure the students are appreciating the slow-moving week as well. I was really needing something to help put me back into a routine and a schedule. I'd say that yesterday was the hardest. I wanted to make sure that the students had a chance to talk to me about Josephine if they wanted. Some classes did; others didn't. Plus, I wasn't sure how many of them had heard about Josephine's death, so I had to repeat myself seven times yesterday. By the end of the day, it wasn't quite as hard to talk about.

James likes being back at Nicki's, too. Yesterday morning was a slow start, but today, after I took his coat and shoes off, he walked straight upstairs to play with the toys. I'm so glad that he's so resiliant!

All in all, we are still doing great. Some days are harder than others. There are some days that we just miss her. I know that will never go away. I still feel the joy of having her here though. I was looking through some pictures and couldn't help but smile at how adorable she looked in some of them. What a wonderful angel!

We are still getting emails, cards and well-wishes, and we are very grateful to each of you. I don't know if I'll ever be able to send thank you cards to each of you, so please know how grateful we are just in case I forget to send you one!

'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.

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.

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.

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.

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

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.

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!

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!

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!

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.

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....

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!

Gratitude

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

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

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

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

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!!

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!

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.