Friday, October 31, 2008

We're Home!

We made it home yesterday around 7:30 pm. Just in time to get ready for Josephine's next feeding. She is on a schedule to be fed every three hours. Of course, this means that we'll never have to worry about sleeping through the night. :)

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.

Thursday, October 30, 2008

Homeward bound

Sorry it has been so long since our last post. We have been quite busy. Initially we thought we would go home on Wednesday the 29th, but the doctors wanted to be sure of Josephine's Degoxin levels before they let her go. (Degoxin is a medication that helps her heart beat.) Their decision to wait was confirmed when Josephine began to have problems with vomiting. After tests, it was determined that her duodenum is a little malformed and has a tendency to twist, causing it to become obstructed. In normal situations, this can be remedied with a simple surgery; however, we have opted not to do the surgery. Josephine's preliminary results for her chromosome scan have come back positive for trisomy 18. This is the reason why we have opted not to do the surgery. It would not prolong Josephine's life and would only cause unwanted pain and suffering on her part.

We did opt to place her on an IV last night so that the nurses could administer pain medication as needed. This is not a permanent thing because we will be taking Josephine home today. We are very glad for this because Marian and James are on their way here right now. It will be good to have all my babies together again. Our social worker, Dasi, gave us a tender little book to help us help Marian and James understand what is happening. It's called "We were gonna have a baby, but we had an Angel instead." It is a very touching book and let me tell you, it will make the roughest old trucker cry.

Last night I received a call from my sweet sister Jeanne Mitchell, who has offered to make Josephine a little white dress. Clara and I had been looking at holiday dresses, many of which are mostly white, but they were all too big. Since we had planed to to be home for Sunday we initially thought to give Josephine a "Name and a Blessing" then. However we felt impressed to do it last night. For those of you who don't know in our religion we perform an ordinance in which worthy holders of the priesthood will call on our Heavenly Father and give the infant a name by which they will be known in life and on the records of the Church, followed by a blessing for the child. When we first came to Columbia I had made a call to Bishop Jones and asked his advice on whether or not we should go ahead and perform the ordinance. He told me to do what the Spirit directs and then give him the details later. My good friend Clark was able to assist me in the ordinance. Once again I am so greatful to him for letting his light shine.

Well I need to go because my kids just got here. James is so excited to see his mom and sister. (and maybe a little excited about Mom's leftover cake;)

Thank you for the continued love, prayers an support.

You are in our prayers.

Jonathan Bennion

Tuesday, October 28, 2008

One More Day

We arrived at the hospital this morning and received news that they want to keep Josephine one more day. They want to be sure of one of her medications before they send us home. Apparently, the Digoxin level was not quite right yet. So the plan is to room in tomorrow night and come home on Thursday. We've already checked out of the Ronald McDonald House, so we'll have to make a phone call to see if they can accomodate us for one more night.
A hospice worker also came to speak to us today about setting up care for Josephine. We will have a nurse that will come in 2 to 3 times a week to check on Josephine and make sure she is comfortable. Our nurse will also help us to make the arrangements for her when the time comes. We have elected to bring home oxygen for her. She doesn't need it all the time, but when she gets agitated, her heart doesn't pump as efficiently and her lips start to turn blue. This will just be a comfort measure for her and is not meant to prolong her life. They will be working very closely with our pediatrician, Dr. Russell, to make sure that Josephine has the proper medications and care during her time at home.
Jon and I have been going through "teaching" as well. We know how to give her her feedings and medication. I think the only thing left for them to go over with us is how to insert her feeding tube. Once inserted, this tube is good for 30 days, so unless she pulls it out, we'll only have to do it periodically. We are excited to be able to room in with her tomorrow, but also a little nervous since we know how much care our little pea pod needs.

I noticed the other night that Josephine looks a lot like her sister, Marian. She has really started showing some color, and her olive skin tone complements her dark hair. She does have brown eyes already. I wonder how Marian feels about being the only green-eyed child.... :)

We got a phone call from Marian this morning on her way to school. It is such a blessing to have such a loving little girl. We are missing her and James very much. (Of course!) And we are very grateful that they have been able to stay with their Grandpa and Grandma Napier during the last week. I know that they are happy there and are well taken care of. But we will be so excited to be home with them later this week.

I have appreciated reading all of your comments and emails during the last few days. Many of you have told us how you are comforted and encouraged by our faith and strength. I can only say that this has come through our deeply founded testimonies in the gospel of Jesus Christ. If it weren't for the knowledge that we have of eternal families and the covenants we have made with our Heavenly Father, this would be absolutely unbearable. We are very lucky to have been blessed to have the gospel in our lives and we are thrilled to be able to share our testimonies with you. I have added a couple of links to our blog that help to explain the deep roots of our testimonies in eternal families and in the atonement of Jesus Christ. We understand that both Heavenly Father and Jesus Christ are bearing the burden of this trial with us and we are grateful for the feelings of peace and comfort that the Spirit has provided us here.

Monday, October 27, 2008

Big girl bed

Good news. Clara and I came in this morning and Josephine was in her Big Girl bed and not in what we jokingly refer to as the sand blasting tank. It was so good to see her in regular baby clothes i. e. onesy, sleeper, nit hat, and blankets. I couldn't wait any longer I dropped the bags, scrubbed my hands and grabbed the baby. Besides Clara had a date in the pumping room. They also had taken out her IV and she is no longer hooked up to the blood oxygen sensor. She does still have the og tube for feeding and her heart and respiration monitors as well as blood pressure monitors.

The next big piece of news is that we may be coming home as soon as Wednesday!!! She has been up and down on her weight but that's to be expected. Now Mom and especially Dad have to learn to be her total care providers. Most of it is stuff we already know like love her and change her and hold her, but how to administer medication and feeding is new to me. I told the nurses that I would try my hardest for delicacy. The other day as I was holding her I started stroking her cheek. She did not like it at all! My hands are so rough and calloused that I can not feel her soft skin, but for her it must be like having a wood rasp rubbed across her face. I don't stroke her any more. A gentle rocking motion is better.

We have also talked with the social worker about accomodations for Josephine, and someone from Hospice should be getting together with us to talk about some services they could help us with. We are happy to be taking her home, because she will be with her big Sister and Brother. We want Marian and James to bond with Josephine and form lasting memories with her. Tuesday we will be rooming over with Josephine. It kind of sounds like a big sleep over, and it kind of is. We will move into the nicu's rooms for a night so we can try taking care of Josephine all on our own. The thought of taking a baby home from the Nicu and being their total care providers is rather overwhelming for some. But like my mother-in-law says "It ain't no hill for no high stepper."

The doctors did tell us this morning that Josephine's heart murmur has gotten louder and her breathing is a little more labored. With that in mind they have prescribed some medications that will help with reducing any fluid around her heart and generally help with palpitation. There are three major heart defects associated with Edward's syndrome and little Josephine has the trifecta. This is OK.

A good friend of ours is an OB GYN here at the hospital and we will be meeting him and his wife and kids for dinner tonight. I had not seen Clark in over 10 years when I saw him in the lunch line. He has spent a lot of time with us here in the NICU and has been able to translate much of the "Doctoresse" for us. Being so far from Clara's OBGYN it was a comfort to have someone so close to go to for answers to questions. He even wrote her a prescription for some headaches she has been having which were related to her spinal. This is just another way Lord has seen fit to give us exactly what we have needed most exactly when we have needed it most. I want all of you who have helpped us to know that you have let your lights shine and have let us see the Glory of the Father. I only hope that when my light is needed, I can let it shine as well as you have.

I was talking to my sister-in-law Lee Udall Bennion this morning and she really summed up the feeling here. We are in the eye of the hurricane right now. There is a sence of peace and comfort here that eminates from the Holy Spirit. I am reminded of what the Lord told his diciples before he left them,

John 14:27 Peace I leave with you, my bpeace I give unto you: not as the world giveth, give I unto you. Let not your heart be ctroubled, neither let it be afraid.

28 Ye have heard how I said unto you, I go away, and come again unto you. If ye loved me, ye would rejoice, because I said, I ago unto the Father: for my bFather is greater than I.

29 And now I have told you before it come to pass, that, when it is come to pass, ye might abelieve.

Friends and Family, Let your hearts be at peace He who sees the sparrows knows our little girl and knows how best to care for her. When Josephine was born she would not breathe. As I stood there watching the pediatritian and grim faced ob nurses pump oxygen into my little girl I prayed and prayed as the fear and panic mounted begging God to make everything all right. I finnaly realized and said to Him in humility, "Not my will, but Thine be done." As Clara and I have striven to submit our wills to His our faith has grown beyond our understanding.

I have frequently thought back seven and a half years to when Clara and I were sealed in marriage not just to each other but also to our children for time and all eternity. Regardless of what happens to Josephine, as long as Clara and I are faithful to our Temple covenants we will be a family forever.

Thank you for your thoughts and concerns
Jonathan Bennion

Sunday, October 26, 2008

Pictures of our little angel

Josephine Elizabeth Bennion

Josephine Elizabeth Bennion was born on Wednesday, October 22 at 10:35 am. She weighed 4 pounds 3 ounces and was 17 inches long. She was born by c-section as she was not tolerating the pitocin or the contractions at all. The c-section went well, and I was very lucky to have a very supportive husband holding my hand through the entire thing. I was also lucky enough to have the OB nurses that I had gotten to know during the last month with all of my non-stress tests there to assist during the surgery and delivery. It made for a very calm experience.

Josephine is now in the NICU at Columbia Regional Hospital. She was transferred here on Wednesday night after having a moment where she stopped breathing. She spent her first night here with her dad and her Uncle Paul in the room with her. And she was able to do so without extra oxygen.

The prognosis is that she has Trisomy 18, or Edward's Syndrome. We should have preliminaries back tomorrow (10-27) and a definite diagnosis by the middle to end of this week. At this point, we will be surprised if it turns out not to be Trisomy 18. She has many of the outward characteristics of the syndrome: the way she holds her hands, her right foot is rocker-bottom, low-set ears that are folded, and a small mouth and chin. Unfortunately, the outcome of this syndrome is fatal. Josephine will unlikely make it to her first birthday.

But she has shown that she is a fighter. Even in utero, when we thought she was just being finicky, we realize now that she is a miracle. The placenta was only the size of a chocolate chip cookie, and by all reason, she shouldn't have made it this far. Now, as of today in the NICU, they have taken her IV out, and she is being fed only through a feeding tube and a bottle from time to time. I have been able to pump breastmilk for her, and she does like it a lot more than the formula! She was also able to have the oxygen sensor removed. The only two things that remain for her to accomplish before we can take her home are for her to gain some weight (she's down to 3 lbs. 13 oz.) and she has to come out of the isolette. She's getting close to being in the open crib; they keep turning the temperature of the isolette down because she's been able to maintain her temperature fairly well. Our wishes are to bring her home, so that we can be together as a family for her short time with us.

Now, with all of this news, I'm sure you're wondering how we are coping. The answer is very well. We are looking at this time as a gift and a blessing. Jon and I are comforted through our faith and knowledge in the gospel. We feel very humbled that this wonderful spirit child of our Heavenly Father has chosen us to be her earthly parents, even if for a short period of time. We are thankful for the blessings and covenants of the temple, so that we are able to be sealed as a family for time and all eternity, and to know that she is our daughter forever. Please know that the feeling here is one of peace and joy. We are so proud to be her parents. We know that the time will come for grieving and mourning, but the time is not now. Now is the time to rejoice in the blessing of a new child, and love her every moment!!

Josephine has had many visitors over the last few days. Most importantly were her older sister and brother. Marian had a chance to sit and hold her, and I know she was VERY proud! Marian is a smart girl and knows that something is wrong and has been worried. She is such a tenderhearted little girl. She already loves her baby sister with all her heart and wants her home as much as we do.

James loves his new baby sister, too. As soon as he saw her, he started saying, "My baby. My baby." He loved to pat and stroke her, and thinks she is just the coolest thing he's seen. Maybe he'll get to hold her soon, too. He was just too excited the other day.
Please feel free to contact us here. We are staying at the Ronald McDonald House in Columbia, but both of us have our cell phones with us. We will be updating the blog on an almost daily basis so all of our loved ones, friends and family can see how things are progressing. Thank you to each of you for all of your love, support and prayers. They are definitely helpful. We are very appreciative to have each of you in our lives.