Update

Here is an update for how things have been going here. Mason is now over 4 months old now. At his doctor appt. he weighed 9 lbs. 8 oz. He has been growing a lot lately. I took him to Salt Lake last month and they did a couple tests on his kidneys and they said they are functioning great. The tests were rough for him and after the first he started dropping a little, but he got through them and I am so happy that everything looks great! He is such a sweet, happy baby! He is super smiley and has started to giggle. So cute! I just love him. I'm always reminding myself to be appreciative that we are where we are...home.

The winter approaching, though, makes me really nervous! He was supposed to be getting RSV shots but the insurance denied him (I guess they are around $1200 each and he would get them once a month during RSV season). His doctor is mad and has tried to get the insurance company to ok them, but since he was many weeks old on November 1st, he's denied. She even talked to the rep for the shots and the rep said it wasn't her fault that the mother has so many kids. (Rude!) Basically I'm just hoping to get through this winter with a healthy baby.

I haven't gotten him any more of his immunizations yet. That last time scared me so much I want to give him a little more time to be able to handle them better. I had my kids and I get flu shots. I never know what to do but I'm hoping it will help. It's hard because the girls have to go to school and them bringing home germs is what concerns me most.

Mason hasn't had any of his turning blue spells for a while. One of his last was when we were in Bear Lake. My sister-in-law's dad passed away (so sad!) so my sisters and I went to the viewing and left the kids and husbands at the cabin. While we were gone Mason had stopped breathing and turned blue for a bit. Brandon called me and was really concerned. I have never had anxiety before all of this happened and now I understand a little what people go through. I knew that Mason would be okay, but I was just hit with all of the emotions I had gone through while he was at the hospital. My association with him there isn't just the NICU, it is EVERYTHING that happened from his birth to going home. It was a lot! I am definitely doing well, but every once in a while I am just overwhelmed with anxiety! It's not fun, but has been getting better. I think it has just taken a while to really process everything too.

Halloween was fun and I was so glad to have good weather! The girls had a good time too! Sydnee was a Monster High girl, Madelyn was a devil, Emma a bride, Sophie a skunk, and Mason was an owl for parties and ended up a bear for Halloween night. My girls didn't want to match each other this year and I was kind of sad because I love a theme, but o'well. They are getting older and more opinions come with age!

Sydnee is doing well. She is in 4th grade and turns 10 this month. I can't believe that! She is pre-teen and has been having more emotions lately. A little pre-show for what we will be going through in a couple years. SCARY! She really is a good girl though. She does well in school and loves her friends and to dance!

Madelyn is 8 and is in 3rd grade. She was baptized the day before Mason came home from the hospital. She enjoys school too and is such a creative girl!

Emma is 6 and in 1st grade. She is the middle child trying to find her identity and voice in the family. She is taking tumbling this year and has a lot of potential! She is a beautiful girl!

Sophie is 3 and so much fun. She will tell you she loves you all the time. I love it! She goes to preschool and dance and asks every morning if she is going or not. She has such a fun personality!

I love each of our kids so much! I feel so blessed to be their mom! I have a lot to work on, and many times feel a bit overwhelmed, but I would never want my life any other way.

Our family went to the temple October 15th and my brother-in-law did Dylan's temple work. It was a very special day (and was very emotional)! It changed my perspective on how personal each person we act as proxy for should be.

Dylan's birthday was October 17th and we went to Mandy's house. Ryan was gone for work, but she was surrounded by family and friends. We tied blankets for Primary's and she had the kids make cupcakes. That night we went to the cemetary where we sang happy birthday and let balloons go. How hard! I miss him so much! We all miss him! Mandy and Ryan are amazing people, but I can't imagine how difficult it is for them and will be for the rest of this life!

Home

So mason was finally able to come home on Sunday, August 7th. The last week I had such a hard time even being at the hospital because it gave me so much anxiety. Driving to the hospital on Sunday I was so sick to my stomach and nervous that when we got there they would tell us he needed to stay longer. I didn't think mentally or emotionally i could handle it. Luckily that didn't happen and so now we are HOME! It is so nice to be home! Our kids are beyond thrown off by all of this, but it has been very therapudic being home.

Since being home Mason has been doing really well. He had a monitor on him which goes off (crazy loud) if he either hasn't taken a breath for over 20 seconds or if his heart rate drops below 70. There is no way I would have dared bring him home without it! I wouldn't get an ounce of sleep because I'd be watching him breathe all night. Our girls are loving him and I've been especially surprised by Emma, she just loves watching him and has been my biggest helper!

So Mason was discharged weighing 6 lbs and today weighed 6 lbs. 6 oz. I took him to the doctor and let them do the dumbest thing, some immunizations. What in the world was I thinking? I'm so mad! I told her I didn't want to do them all at once, so they did 3 instead of 5. He is so little! I think immunizations are so difficult to decide how to do them (or whether not to). I know we have them for a reason and that the diseases we are preventing against were terrible, but why should I have the same dose for my little baby than a big healthy baby? Anyway, he has been miserable today and has had some drops in his heart rate and breathing. Now I am back to being a mess worrying about him. I'm just really mad at myself for not thinking this through better and just trusting the doctor. What was I thinking????

Rollercoaster

I feel like I've been on a roller coaster with so many ups and downs. I'm not loving this roller coaster and would really like to jump off it and be able to stand on solid ground. Emotionally I feel exhausted.

We were told we would probably be taking Mason home today. He finished his 48 hours of full feeds this morning. I was at the hospital until 2:30 am feeling stressed. So many horror stories of babies ready to leave but something changing to make them stay so I was trying not to get too excited. Also a little nervous about bringing him home. Preemies are so different than healthy babies. Just watching your babies monitors could make you a nervous wreck and seeing what they have to work through as they grow and figure things out. This has been such a different experience!

I called the hospital this morning at 6:00 am to see how he was doing. The nurse told me at around 4:00 am his heart and oxygen levels dropped so now that means we probably have at least another week before he can come home. It's so strange I don't really feel like I have a baby. It just seems like a horrible dream or like I have 2 lives, one periodically at home and the other at the hospital. Oh, please bless that this will end soon.

I don't want to bring him home until he is ready, especially because I don't ever want to go back! Plus I don't want to be constantly worrying about him. He is such a sweet baby with a good temperament. I am so grateful that he is doing as well as he is, because he really made a lot of progress fast. I'm just emotionally tired and came home for the day for a break. A much needed break!

More with Mason

Mason is in the NICU still. Today he is 38 weeks gestation. I feel like I have been pretty patient with him being there but on Monday after the nurse told me he was "immature" and he wasn't where I was hoping he would be by now, I was a little down. Also I'm tired of making decisions of where to be and asking people to watch our girls. I feel so bad about that! I can always tell myself that so many people have it much harder than us, but for a minute I had a little pity party and then got over it and moved on. I think every once in a while everyone is entitled to one, as long as it is short-lived.

Brandon surprised me that day and stopped by. I love him! He Is the perfect man for me! He amazes me and I feel so blessed to have him by my side. He has had to take on a lot of responsibilities and hasn't complained, even though I know it has been so difficult for him.

Mason now is doing alright. He just has to figure out eating better and be able to eat full feeds for 48 hours. He got his oxygen taken off a few days ago and has done really well without it. The only time he struggles a bit with a little apnea is when he is bottle fed. He is getting a little more adjusted to it but still needs some work. He was put on Zantac for his reflux and the nurses think it has helped.

So for now we just wait and pray that he can figure it out soon and be able to come home. That will be a great day!

Time

Mason is doing pretty good still. Sunday and Monday were his best days. The last couple days he has been more tired, but they say it's normal. He still has oxygen, mostly for when he is eating. They started giving him half formula and half breast milk. He does desat sometimes when he's eating. He is probably eating about have of his feeds by bottle and the rest is gavaged. He weighs 5 lbs. 5 oz. And has been a very sweet, mellow baby (I'm hoping it's not just because he's a preemie and too tired to act otherwise).

A couple days ago my sister-in-law's brother was in a fatal airplane crash. I feel awful! I'm praying for his family. He was only 35. This last month has been crazy. Chelsea said she feels like we are getting "Punked". It's a really mean one if that's the case! I guess when it rains it pours, but now I feel like I'm just waiting for whatever is coming next.

I came home last night and am spending the day with my girls. I have felt so stretched feeling like I should be with both our girls and with Mason. It's hard but some day it will be a memory.

Good

Yesterday was a wonderful day for Mason. It seems like night and day from just a few days ago. I'd like to think that he has a special guardian angel watching over him. He has started eating much more from the bottle on some of his feeds, got his pic line out (HORRAY), didn't have any desats or bradys (miracle), is now back in a "big boy bed" and just looks so much better! It makes me so happy to feel like we are progressing in the right direction!

On Saturday was Dylan's funeral. Everyone that spoke did an incredible job! It truly was amazing! Ryan, Dylan's dad, spoke and I can't even explain it...AMAZING! He posted most of his talk on Dylan's blog - www.dylandshaw.blogspot.com. I am just surrounded by people who rise when they need to instead of fall. A quote from someone's talk said "Sometimes miracles aren't the healing of sick bodies, but the healing of a sick soul". For us this past month, we have experienced both.

Dylan

Our sweet Dylan passed away this morning at 1:20 am. I say "our" because everyone that came in contact with Dylan, felt such a connection to and love for him. His incredible spirit changed everyone's hearts for good, including mine. So many emotions fill my body. I am happy for him that he is free from his sick body. That he is free from pain and from the many limitations that he had. I have a deeper sense of love for my whole family. Families are forever. I know this more now than ever! I know that life can be hard. Very, very difficult in fact. But we are never left alone.

After Dylan's spirit left his body, the song "In This Very Room" was going through my head. I mentioned it to Chelsea and she said the same song was in hers too. Here are some of the words.

"In this very room, there's quite enough love for all of us,
And in this very room, there's quite enough joy for all of us.
There's quite enough hope, and quite enough power
To chase away any blue. For Jesus, Lord Jesus,
Is in this very room."

My heart is broken, especially for my wonderful sister, her husband and kids. I know that our Heavenly Father and Savior is mindful of them. I don't think any parent should ever experience what they have, but I know that they will be there by their side. Their pain is deeper than I could ever imagine and I so wish I could take it all away. They have been and are amazing people. I'm so blessed to have them in my life.

Dylan will be missed by so many! He was so special that he didn't need to be here anymore. It is so hard to lose him, especially so young and we will forever be doing it for Dylan!

Apnea

Yesterday was a really hard day. Mason has really struggled with apnea. I don't know how many times he turned blue and went limp. Once his oxygen level went to 0. I used to be confident with my babies, but now I feel anxious every time I hold him, always worrying if he is going to stop breathing. It is awful!!! I finally had a breakdown and couldn't handle any more and had to leave. I have pretty much gone to the hospital every day from 10 am until around 10 pm. I think all of this has been so much to handle. It has also been frustrating because I feel like in the last 2 weeks he hasn't progressed at all, he has gotten worse. It's hard not to wonder if we should have kept him at the U. But I have to remind myself it is what it is and I have to hold tight to faith that he is going to get better.

On Wednesday I went to my two week doctor appointment. It was a lot more difficult for me than I ever thought it would be. Seeing all of the pregnant women there, knowing that I still would be pregnant, was hard. That night my friends did a shower for me. I have the best friends and neighborhood ever! We have felt so much love from everyone. I had to laugh when I came home my pot of flowers on my front porch was completely filled with water. They were being killed with kindness! That made me feel loved.

So back to Mason. They stopped feeding him again and I guess it has helped with his apnea spells. The poor little guy has been through a lot. I'm not sure when they will start feeding him again. When they do I think they are going to feed him predigested formula for a while until his stomach gets stronger. Good thing I'm pumping my life away. I have breast milk in too many people's freezers. That can't be appetizing opening your freezer to that! O'well.

I got to see my girls and hubby for the first time in a long time. It's so good to see them, even though they are a wreck too. Hopefully some day we will be able to get back to some sort of normal life. I feel pulled in both directions, feeling guilty if I'm not with the girls but then feeling bad not being with Mason. One day this will be a memory....I look forward to that day.

My nephew, Dylan, isn't doing very well at all. The so-called "honeymoon phase" never happened for him. His symptoms keep getting worse and worse. He is a special guy and it is so horrible having to see he and his family going through this. I wish I could do something to alleviate some of their pain. Life can be hard and sadly hard happens for a lot of people. I just don't know how people could go through something like this without the gospel. It would be completely unbearable without the knowledge and testimony of eternal families. I am so grateful for my testimony and the strong testimonies of my sister and her husband Ryan. They have been amazing and great examples of enduring well. I love them!

Today

Today things are pretty good. Every day I have anxiety when I'm leaving around 10 or 11 pm and anxiety when I'm coming back the next morning. I call a couple times through the night to check on him, but every day is filled with something new. Mason is noticeably feeling better. We are so blessed that they caught the NEC when they did. It was SO scary but I think we are out of the woods. He is on a ton of antibiotics and fluids. They won't feed him for probably another 3-5 days. He is acting really hungry which is great! The other day he just layed there lifeless. It was awful!

I've been able to hold him a few times since, which is so healing and means that he is stable enough. His x-rays of his stomach look a ton better. Today they were concerned about a PDA in his heart. They were thinking they would have to do a blood transfusion. They did an ultrasound of his heart and the PDA had closed which is great! They aren't doing a blood transfusion now and I am praying will never have to. He is anemic and they are giving him medicine for that to help him replenish his blood.

He had some bad a/b's early this morning before I got here. On one his heart rate dropped to 45. Not good! They were considering giving him caffeine but are thinking it won't help because he just cuts off his airway. I can't wait until he grows out of these. We won't be able leave the hospital until he has gone without them for a week. (Im praying that they stop soon!).

My brain is constantly being filled with terms, information, concerns, medications, etc. It's a bit overwhelming, but we are going to make it through. Thank you for all of your prayers! I have needed and really felt them!

Bad Day

Today has been another bad day. Mason's worse for sure. He has a virus in his intestine called NEC. They had to put a pic line in him. It has been super scary and I've been a wreck! The first time they tried to put it in it didn't go. He got dehydrated and looked terrible! It is probably not the best when the doctor says he is concerned and you can feel it too. The pharmacist and a doctor came and gave him a blessing (love the priesthood). He looked quite a bit better after and they were able to get the second attempt in. He is on 3 antibiotics, they've stopped feeding him breast milk and has a tube down his throat sucking out the air. It's very difficult to see my baby look like this!

I feel really blessed to have had the doctor we had because they think they caught it early (he has been amazing!) I feel like I've been run over by a couple dump trucks. I think they might have gone in reverse and run me over again. But right now he is sleeping which is good, and he doesn't seem to be in a lot of pain, which is great. I just love this little guy and need him to get better!

Also my awesome sister-in-law, Heidi, showed up right when this all started. She is staying with me tonight (my whole family is in Bear Lake) and I have really needed her today!

I'm just praying that Mason has an ok night tonight. I'm scared to leave him. Maybe I won't...