Mark was able to take me to visit Cole today. Cole did good at breast feeding so the OT said that next time we could start trying to let him nurse a little bit. We are headed in the right direction. My Aunt and cousin (from out of town) came to visit Cole. It was a great morning enjoying Cole.

       We headed back up in the evening.  Tay came with us. Cole always enjoys seeing his sister. By the time I got to hold him, he was out! I guess he had way too much fun with his big sis.

My mom took me up to visit Cole today. It was fun to chat and catch up. Cole was still on lights. He was just waiting for some labs to come back to see if he could be done with them. He was still on oxygen.  But just a little.  He really doesn't like all the tube and stuff. He is always trying to pull them out. He is trouble.  He will be a lot happier when he is done with the breathing tubes.

  I came home and napped. My mom took the boys to her house to get in her hot tub. Dinner was brought in. We were joking that the pizza was as big as Gabe.

The boys made some pictures for Cole's room at the hospital. He loved them. When we got there he was off the lights.  We talked and he said that he would work on growing, breathing, and resting. Hopefully tonight will be uneventful.

One Week old

   I can't believe it's been a week. It seem like so long ago that he was born. We have been through a lot in the last week, but I feel blessed by how well Cole has been doing. I know that we still have a ways to go. I have to remind myself to take one day at a time.
    My nieghbor was so nice to take me up to visit Cole this morning.  Cole is under lights again for jaundice.  They did some labs on him to check for an infection.  Before they feed him they check for residual. Over the night he had one feed that was high. The labs came back good. So they are thinking that it might be the jaundice.

    Mark took the boys to the Jazz game so I was able to visit with Cole for a longer time. They had a NBICU dinner that I was able to go to meet some other parents that have babies in the NBICU. It was interesting to hear their stories. Cole was pretty relaxed with the lights. Hopefully we can get them off tomorrow.

Little Feet

     Mark and I were able to go in this morning to visit Cole together. My cousin was his nurse today. Wendy said that he did well during the night. We practiced nursing again and he did pretty good. It was pretty funny one time you could tell he sucked hard enough to get some milk. His eyes got really big and he swallowed really big. But because we are only practice he didn't do it again. He gets tried really easy. It was so fun to hold him and have him do so well with the nursing.

     I was worn out when we got home. So I fell took a nap the rest of the afternoon. My friend brought over a gift of tiny onies it was fun to think about getting to dress him soon! Dinner was brought in. Our neighbors have some great ideas on meals. I'm excited to add them to our menu in the future. After we ate Mark and I headed up to see Cole. The nurse in charge of him was working with another baby so we had to wait a while to hold him. He didn't have as good of a day. His oxygen levels were going down when he was in deep sleep. So they decided to put a breathing thing in his nose to help. He is just getting too relaxed. I didn't practice feeding him, but enjoyed skin to skin time. It's hard to have to leave him. But I'm so grateful to know that he is being well looked after.

The first day home without Cole

    Made the mistake of taking the milk I pumped down stairs to the fridge 4 times last night. I could feel it in the morning.  So I decided that I would only do the stairs one more time today during the day because my body hurt so bad. My Mom took me to visit Cole this morning.  The excitement of the morning was that Cole had two bowel movements last night. We as a family had been praying for him, and we were so excited to hear the great news! Cole was eating well when we came, which is another thing our family has been praying for so he will be able to get his IV out soon. We thought that it might be out this morning, but he is still working on it.  Needless to say it seemed to me that Cole was very happy to see us.

 

     I had some errands that I needed to do while we were out. So we thought it would be nice to meet my sister for lunch. It was nice to be out with my sister and mom.  Love those ladies, they are always so willing to help me at a drop of a hat. I'm so blessed to have them by my side.

     I was so worn out and ready for a nap when I got a home from my outing. I headed up stairs and slept until dinner. Our wonderful neighbors are still bringing us meals. Love seeing them when they come and so grateful for there love and support.  I called right before shift change at the NICU to see how Cole's day went. She told me that he was having a bowel movement with every diaper change. I apologize for it, I guess our family prayed a little too hard. ;-) His IV in his head went bad, so they took it out.  Now he is IV free. What a blessing.  Just the thought of him not having to be poked as much anymore is such a wonderful feeling.
     Mark and I ate and then headed up to be with Cole. When we got there he was looking so good with no IV in his head. We changed his bum, yep it was poopy. He was pretty sleepy so we didn't practiced breast feeding. It's so hard to not be able to hold him more often then we do. But I'm so grateful that we have been able to hold him as much as we do. Some of the babies with Spina Bifida have surgery are after they born. Then they can't be held for about a week and a half. That is one thing that I feel from the time Cole has been born. We have been so blessed with his body doing so well. His back looks so good, he doesn't need breathing help, he is now off his IVs, he goes to the bathroom, he moves his legs... the list goes on and on.  The Lord has blessed our sweet baby.

Sunday, Sunday!

     I went down early and to get a report from the night nurse.Cole is a fight, he ripped his head IV right out. So in dead as a mohawk IV, his IV is more on the side of his head. He is tolerating his increase feedings. Crossing ourfingers that he gets his IV taken our soon.

 

 I was planning on going to sacrament at the hospital but missed it. So on my way back  from being with Cole I stopped in the hospital chapel and ask them to bring me the sacrament. The two men that came to my room and administered the sacrament to me were so very kind, thoughtful and comforting. They were truly a blessing. My Mom,Aunt and Unlce came in the afternoon for a visit. Nap time was in order after such a great visit.  Mark came to get me later in the evening after he went to a Youth Stake Fireside. Which I was told was amazing. He brought Tay so should wiuld be able to hod her little brother again.

It is now time to say goodbye to another phase of our journey.  It was hard to leave the hospital without our baby Cole. We know that he is being very well taken care of. Praying that it will only be for a little while and then he will be home with us.

   This morning I got a report that Cole had a rough night. He's having difficulty keeping his IVs in, his veins aren't cooperating. So when I came in and he had his IV in his head. Later in the morning when I came into hold him I found out that my cousin was going to be his nurse today. We feel very lucky and blessed to have her taking care of him.

She talked to me about a picc line. Because we have been having difficulties with his IV the doctors were going to be talking about putting a picc line in. I was able to hold Cole and it seemed to help him claim down after his rough night. Right before I left the Doctors did their rounds. I was able to be there for the meeting about Cole. They said  they wanted to get his IVs out if possible instead of doing the picc line. In order to do that we need him to be eating more. So the plan was to give him a small amount more at every feeding.  If he could handle it he would be taken off the IVs by tomorrow night. They also said that he could come off the lights. It's so nice to be done with them! Hopefully with eating it will help him not have to do the lights again.

As I went in throught out the day, he was doing well. This afternoon Mark and the kids came up for a visit. Monte our home teacher also came to help Mark give Cole a blessing. He hasn't had one since he has been born. We have felt so blessed by how well he has been doing. The blessing that Mark gave him talked about the Lord blessing Cole that his body would work like the Doctors are wanting it to.  That he will be able to eat and go to the bathroom. How the Lord has blessed him with this body and that miracles had already taken place. This blessing has already started to be realized. Cole has been given more food at every feeding today and has been able to handle it. He hasn't gone to the bathroom yet but be we see what the night will bring. I know with the Lord's help anything is possible.

     My brother and sister and their spouses came for a visit. Cole enjoyed seeing them.  My kids came up and ate dinner with me. Mark is doing a great job taking care of everyone while I've been gone. Tomorrow I should ne coming home. As much as o will haye the idea of being so far away from Cole.  My own bed sounds so nice. 

NICU Day #3

    Cole has been doing so well. He still has to have lights on him. So I only get to hold him twice a day. But both times he was able to practice breast feeding. I was able to get a good amount as I pumped today so they have been feeding him that milk through his feeding tube. Hopefully he can gain some weigh with having mom's milk.
     I was up a little too much yesterday so today I made sure that I took some naps. Recovering from this c-section has been a lot easier than the recovery after fetal surgery. So it's easy to do too much because I feel so much better. But I'm still healing and need that extra energy to make food for Cole. Pumping is a lot harder than normal breast feeding, but so far we are making it work.
     Today the Spina Bifida nurses and a Doctors came for a visit. They said he was looking great. There isn't too much to do until he gets bigger, so for now they will be measuring his head daily and he will have a weekly head ultrasound. These two things will help watch for changes in his ventricles.
    Mark was able to come up with Drew for a visit. Mark's parent's also were here for a visit about the same time. While Mark took his parents into visit Cole, I was able to love on Drew. I sure miss that kid, he is my buddy. Before Mark left he was able to hold Cole. It was so sweet to see. Cole was so wide awake, he seemed to enjoy his Daddy time a lot. I think his Daddy may have enjoyed him even more.

Big Sister with her New Little Brother

Because of the jaundice we can only hold Cole twice a day. During the day I'm able to go to the NICU and help take his temp and change his bum. We had visitors so it was fun to have them see Cole. After they left I took a nap before Mark and the kids came up for a visit. The highlight of the night was Tay getting to hold Cole. She was so excited. The other kids were jealous that she got to see and hold him. (You have to be 13 years old to go into NICU)  I guess visiting mom isn't that cool anymore.  I enjoyed see them, it seems like they always grow when you don't see them for a couple days. Mark's brother and sister came for a visit too.

     After everyone left I did skin to skin with Cole and practice breast feeding with him too. Which was neat because he is pretty young to know how to latch on and suck. He is alway amazing us with his skills. Later when pumping I was able to get enough that they could put on a binkie to try to help him understand the whole idea. It's exciting, I feel like we are headed in the right direction.

Spending time with Mom!

Baby Cole was able to spend some time laying with his Mom today. He was sure happy as you can see. He is doing well, but has some growing to do. Right now the plan is for him to be in the NICU till his due date of April 14th.

Day 1 in NICU

Baby Cole is doing well. He was moved out of the high risk level NICU to another section of the NICU. Joann was able to hold him last night and see him move both his legs and feet. He has some jaundice and has been placed under a light. He has been sleeping with a covering over his eyes so the light will not bother him. The picture above you can see where they repaired the opening in his back which it looking really good. The neurosurgeon that works with Spina Bifda will be coming to check him out today.

NICU

Baby Cole has been doing great in the NICU. At about noon today they removed his oxygen and he has been breathing on his own most of the day. He has been sleeping the rest of the day. Tomorrow they will be doing some more test and evaluations of his head and body. Joann has been doing better as well. She was able to have a liquid diet for dinner. She was able to visit with Bishop Anderson, Ralph, Martha, Janet, Marcy, Luke, Drew and Gabe in the hospital today. They are telling her that she will be able to come home on Sunday.

The Baby is Here!

Joann's water broke last night. At labor and delivery She and the baby were stable. At about 6 am this morning the Baby's heart rate kept dropping. They tried several things to get it up, none of which worked. Joann's uterus pulled away and caused a rupture. They did emergency C-section to take the Baby out. Cole James Spencer was born and is 3 lbs 8 oz and 16" long. His incision on the back where he had surgery to repair looks good. He has moved his right foot, right leg and both hips. He is on oxygen right now that they keep reducing. They are closing up Joann. It is such a blessing that She was in the hospital last night other wise they say it would have been to late.

Headed to the hospital

At 10:00 tonight Joann's water broke because of her ruptured membranes. We called the Doctors and they said to head to the hospital. We are at the University of Utah hospital, they have checked out Joann and are monitoring the baby. She will stay here now on bed rest for the next two weeks or they will take the baby anytime before that if they see signs of infection to the baby because there is now a path for that because the water has broken. They have given her a steroid shot and just watching monitors for now. Hope to give you a better update later.

Appointment Day

    Tuesdays are always more exciting because I know I get to go on a field trip. Getting out of the house for a couple of hours really does help with cabin fever. We had an ultrasound and non-stress test. The ultrasound showed that everything has stayed about the same as last week. Which is great! The baby also did a great job during the NST. It was great to spend sometime with Mark too!
     It's amazing how an outing can ware you out. So I came home and took a nap.

Happy President's Day!

    Happy President's Day! I know most people took advantage of the holiday and had a great weekend. We never get to do things like that because, that's not how it work with Mark's job. The days that everyone else has off means that they will have time to come to his model home. So he had to work. All the kids were home to keep me company. We did our chores again. Man it's amazing how in one day your room can get so messy. After chores Drew came up with a fun idea of having a carnival. He made tickets, made up games and had a prize table to spend your tickets at. What a fun kid. Grateful that the bigger kids were willing to go along with it.

      Miles made me lunch today. (I forgot to take a picture) A burrito and two small pickles. ;-) I worked on the baby blanket and read most of my morning. Then Gabe came up and we took a nap together. I told Drew that I would come down for dinner early and come see that games that he set up this morning. But by the time I came down the neighbor boys were over and everyone was playing basketball. So I watched them play for a little bit. It was nice to be outside for a while. But it got too cold. So I didn't stay out too long. My neighbor came over to get her kids and we were able to visit for a little bit. Dinner was yummy. It was a mixture of grown up food and kid food. I tried to do some indexing tonight but there wasn't any batches to do that were my level. Maybe tomorrow.
    Very excited to have made it to 32 weeks today! Hoping for 4 more weeks!!

A Day of Rest

     I woke up early with Mark. When I turned on the TV there was a documentary on about a special needs pageant. The lady, Abby Currans, that started it all has cerebral palsy. As she grew up she knew how it felt to be different. She does the pageant to celebrate the girls and give them something to get excited about. It was very inspiring to see the little girls and young women share their light with others. If you get the chance to watch it ,it is well worth your time.

http://hbowatch.com/hbo-documentary-summer-series-miss-you-can-do-it/

      It was a little rough getting the kids going this morning, but they were on time to church. So I guess it wasn't too bad.
     I listened to conference talk today for my studies. I listened to Elder Holland's talk "Lord, I believe ". This is one of my all time favorite talks. Not only does it talk about healing, but also about faith. Two things that are dear and near to my heart. My favorite part is about putting forth what you have and then ask for what you don't have. “Lord, I believe; help thou mine unbelief.” 
https://www.lds.org/general-conference/2013/04/lord-i-believe?lang=eng
     The young men brought me sacrament. So grateful they come ever week. The kids came home and we were able to fit me, Tay, Miles and Mark in my bed for nap time. Not the best nap ever. Then we headed over to Mark's parents for dinner.  It was great to see everyone and dinner was yummy. We celebrated Ralph and Zoey's birthdays. Luke got to have a sleepover. With no school tomorrow we decided to have a movie night in our bedroom. The kids made beds on our floor, no one sharing with us tonight. ;-) "The Burbs" it's a classic.

Lazy Day

Dance and work appointments really made today least busy. (No basketball games) The good thing is the kids had time for chores. The hard thing was making sure they did them while laying in bed. Mark was in and out ,but when he was here he was working hard. The house looked great. The boys and Mark were able to play basketball outside later in the afternoon. I was able to watch them from my window. :-) It was Saturday, how it should be. Get the house clean and then play. 

     Mark got takeout at Buffalo Wild Wings, yummy. Tay went to a stake youth dance. 

Happy Valentine's Day!

    This morning I woke up early to go to a Dr appointment. Mark had an appointment for work so my mom took me to my appointment.  The baby did very well while being monitored.  :-) On the way home my mom helped me pick up a gift for Mark. We had a special dinner planned for our kids tonight. So I stayed down stairs the rest of the day not wanting to do the stairs twice. Let me tell you I will not be doing that again. It was very uncomfortable. But it was worth it for the special time we had tonight. Luke woke up this morning sick so we hungout down stairs on the couch.  We watched Olympic hockey most of the day because that is what Luke wanted to watch.
   I helped Drew decorate our dessert for tonight. It turned out pretty cute if I say so myself.

     Dinner was so yummy, Mark spoiled us with steak and potatoes. Mark also got a movie for us to watch tonight. We had a great time. Mark's parent came over with valentine treats.They had also made plans to have some of the kids sleep over. The kids were very excited. 

     One last thing, I want to wish you all a Happy Valentine's Day! I'm so blessed to have my sweetheart with me on this speical day. Wishing you all the happiness that comes with love.

Throw back Thursday

    Today was a LOT of hanging out. Drew and I staronted reading a "Junie B. Jones" book. Love that girl. She makes me laugh. Drew likes her too. Luke got me lunch today. He is just like his Dad, he knows how to spoil me with a yummy lunch.

Mark worked today then he visited the families that he home teaches. He said that he had a lovely visit with them. My mom came over while Mark was gone and helped out with the kids. She also came by with some yummy cookies. Dinner was brought in, a yummy kid friendly meal. The kids loved it. After dinner our home teacher came  over to help Mark give me a Priesthood blessing. When I had Gabe it was a emergency that there wasn't time to get a blessing. So I asked Mark if he would get me a blessing now just in case there wasn't time later. It was a beauitful blessing. I'm truly blessed to have a husband who holds the Priesthood that give me a blessing when I ask or am in need. We finished the night watching the Olympic. 

     Throw back Thursday is a picture of our family on vacation right before the surgery. 

Lunch Date

   Today I was so lucky to have my aunt Susie come for a lunch date with my mom and sister.  It was so great to visit and catch up. Susie is one of the amazing women that I have looked to for example of how to react during hard times in life. I remember when Mark was sick, I look to their family to find comfort that there is life after a trial.  That as you endure your trials well you will be blessed. Even now she is having health issues and still shows love to those around her, positive attitude and faith in God. I fell so blessed to be have so many people in my life like her and her family.
    I've really been trying to take it even easlier, because of the news on Tuesday. Which is pretty hard to do less then what I have been doing. Dinner was so yummy, warm yummy soup on a stormy rainy day. We watched a movie to finish up the night. Tay and Miles came home late because of snow blitz. Sounded like they had a great time. Miles is just learning to snowboard. He said that it was a little harder than he had thought it would be, but it was a lots of fun. Tay is becoming a pro. She was excited that she only fell twice. Plus she tried out a new trail.

Tuesday is Appointment Day

    It's always nice to be able to go in and see how things are going on the inside. The ultrasound was short but long. As she was checking things out, going through the list of things that they are watching. The lady doing the ultrasound found that my membranes that were a little pulled away last week are more pulled away this week. So she had the Doctor come in without her looking at the normal stuff. When the Doctor came in he was very informative. He shared with us all the things that could happen because of the membrane pulling away. I could see leakage of fluid or bleeding. If that happens I will have to be closely watched to make sure that no infection happens. Which means hospital bed rest. ;-( The second thing is the membranes that has pulled away might wrap around the umbillacord. Which would cut off the nutrition to the baby. So we are to watch for leaking and now get to go in twice a week for non-stress tests. And if we have any of these things come up our new goal day moves to 34 weeks. :-( I wasn't very happy.
    We headed out to the waiting room for the next appointment. While waiting a lady came up to me and asked me if I was Joann. I said yes. It was Hailey from the Utah Spina Bifida facebook group. She said that she had to look at our pictures on facebook real fast to make sure it was us before she came over. But I'm so glad she did. She ended up not having the fetal surgery. This is her first child and it really limits you on having future babies, if you do have fetal surgery. She only has two more weeks and then they have their c-section scheduled. When you don't have fetal surgery you still need to have a c-section because they don't want the baby's back to go threw the birth canal. It would cause more damage to the baby's spinal cord. It was great to see her in person. It will be fun to have our boys grow up together.
      The  non-stress test was going well, then at the 20 minute mark, when you are pretty much finished, the baby's heart beat fell to 90 beats a minute. So we had to be monitored for longer. It didn't happen again. So after a half hour we where able to go. After our appointment we where able to go and visit my neighbor that had her baby about 2 weeks ago, at the same hospital. He has been in the NICU and has been making good progress the last couple of days. It was so fun to see him. He was so tiny. The pictures that she has posted of him are so cute, but in person he is sooooo cute! He has tiny little chubby cheeks. It was so nice to visit with them and it was so nice of them to share their cute little guy for a little bit.
     After we got home, we ate and I took a nap. I was more down then I have been in a long time. I just hate the idea of not making it to 36 weeks. I want everything to go as good as possible. I know bed rest is hard but hospital bed rest would be harder and having the baby early would be even harder. The one thing that I have noticed,  is that in the last week I have share with two different people some of my quotes that are on my mirror. Now I guess it's a good time to share them with myself.
 "Somethings I can not predict or control, but I can become what I need to be." Cecil Samuelson.
 "Trust that what the Lord has planned for us is so much better than what we have planned".
    These thoughts really helped me get through the hard times when Mark was sick. They are as true as ever now.
     Dinner was brought in, it was so yummy! Everyone spoils us! We watched  the Olympics to finish off the night.

31 Weeks!!

   One more week down! Just a couple more to go! Some of my kids are off track so it was nice to have a little company. Luke was nice to make me breakfast and my mom came for lunch. She stayed and helped me get my area upstair clean and dejunked. She was very helpful. 
     One of my friends that I have met on facebook because she had fetal surgery too messaged me. She told me that she was looking at my page and noticed that Mark had Guillain–Barré. Her dad had Gullain-Barré after she was born. She said that he is doing amazing. He had a Preisthood blessing just like Mark and has amazed his Doctors that told him that he would be paralyed from the neck down. He now runs in races, bikes and is on the ski patrol. He is in the best shape of his life at the age of 62. It was a wonderful story to hear, because it was so close to ours. He and Mark got sick at about the same age too. I wish that they lived closer (Idaho Falls) so we could meet him. My friend lives in Florida, maybe I can talk her into visiting if they ever come to Utah.

Dinner was so yummy, so grateful for those that cook for us. We watched the Olympics the rest of the night.  

Too many crazy days in a row for me!!

     This morning started very early. About 1am we heard crying. Come to find out, Drew was sick and didn't make it to the toilet. :-) So Mark was very wonderful to take care of it all. Then about a half hour later we heard Drew and then at the same time a sound that sounded like throwing up. Knowing that Drew couldn't throw up and call for us at the same time, made us concerned. So this time we had Gabe and Drew at the toilet. Gabe didn't make it the first time either. Needless to say we have lots of laundry to do. Round two started about an hour later. I'm not sure how Mark woke up so early for his meetings. Glad we have early church so he could come home and take a well needed nap. The boys seem to be fine now. Which we are so grateful for. Luke was complaining that he wasn't feeling well either. Normally I would tell him he had to go to church because he wasn't showing any real signs of being sick like his brothers. But I needed his help while Mark was at church, so he got to stay home too. To pass the time we watched "Despicable Me 2".
     After church was over two young men from my ward came over to give me the sacrament. I asked them how often they take the Sacrament  to people in our ward that can't get to church, to take it there. They said that they go every Sunday, expect fast Sundays. On fast Sundays they do fast offering so the Elders in the ward do it. I think it's neat that they would offer it in the first place, but also that the young men are asked to help. I think it helps open their eyes to see that there are people that are stuck in their homes that would love to be at church but can't. I'm so grateful for their service it really means a lot to me. Especially right now, the Atonement is a huge thing in my life. Being able to renew my baptismal covenants each week is something that I need badly so that I am worth of the great blessing that I'm asking for and receiving in my life.Which reminds me of my studies today. The lesson was on Noah and the Ark. It talked about how we need to prepare ourselves before the big storms come. Noah looked pretty silly building an Ark on dry land. But not so silly when the storm was there. I know that as the storms of life have come my way, I have really leaned on the Lord to help me get through them. Without him and the relationship that we have, I would have thrown in the towel a long time ago. He gives me the hope to go on. The support and love that I need to know that he will help me along the way. It was a great lesson.
     Dinner was yummy, turkey and mashed potatoes. Mark's brother's family came over for a visit. the kids had a ball. Freeze dance was the hit of the night. Before they left, Tay showed off her new pointe shoes. Everyone wanted a try!

Crazy Saturday

   Saturdays are pretty busy around here. Between chores, basketball game and Mark's work and church meetings, it was a normal crazy busy Saturday. The boys all did a great job in their games, I heard. Because Mark had meetings most of the day. The kids were so helpful and got me lunch.

 Drew and Gabe Got me something first.

     Then Taylor helped me out. It's not a meal by Mark, but it was meals made with love. Mark's dad came and checked on me and the kids. :-) Then we spent the rest of the afternoon watching the Olympics.
     Mark's parent's came over. Taylor and I helped his Mom make a handout for her Daughters of Pioneers lesson for Monday. A flower pen and quote.

We ended the night with ice cream and a movie.