Thursday, July 28, 2011

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!

Thursday, July 21, 2011

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.

Monday, July 18, 2011

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.

Tuesday, July 12, 2011

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!

Sunday, July 10, 2011

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!

Monday, July 4, 2011

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!

Saturday, July 2, 2011

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...

Friday, July 1, 2011

Hard

July 1, 2011

The last couple days have been more difficult for me. Three nights ago Heidi and Mike had to take Sophie to the ER because she got croup so bad. It was so hard not being there with her (even though we knew she was well taken care of). So Brandon and I decided it would be best that he go stay with the girls, which means that he needs to stay away from me and Mason for a while so we don't risk the chance of getting him sick. I miss them so much!

Yesterday was Emma's birthday. It was SO hard for me not to be able to celebrate with her! I just really look forward to being a normal family again! I feel so torn and don't want my girls to think that Mason is more important to me than they are. This is hard.

Today I went to my neighbor's funeral. She was expecting and passed away from complications the day after my incident. I feel sick about it. It's really hard because I feel like we were pretty blessed how things worked out, but why didn't they for her? Her family deserved it just as much as ours. I know Heavenly Father has a plan and this is just one part of it I won't be able to understand now. I pray for their family! I can't even imagine how HARD this is for them.

On my way to the funeral I got a call from Mason's nurse. He had been having a bunch of a/bs. He has reflux and he closes off his airway to protect himself, but then he forgets to start breathing. It's normal, but his have gotten a little worse and lasted a little longer. I don't like so much him turning blue! One spell lasted a minute and a half before they got him breathing again. Also, he has diaherria, he was projectile vomiting, his skin was marbely, and his stomach was lumpy. They are running tests and taking x-rays of his stomach. They think he has a virus, but not sure what. It tested negative for bacterial, so it must be viral. They stopped fortifying the breastmilk they feed him through a tube. During the afternoon he seemed to be doing a bit better, but still I worry so much about the little guy. It is a step back and if his stomach still has problems they will have to start an IV and put off feeding him for a while, which would be a bigger set back. UGH!

I remember after our traumatic day after they delivered Mason the nurses were congratulating me. All I could think was, "How can you congratulate me when it's not supposed to be like this. He's not supposed to be born yet. Now instead of being a healthy baby, he has to struggle to survive. Congratulations???" I know we have been so blessed, but it is still so hard. Hard to watch him fight. We are on the better side of things. We've seen so many babies that are a lb and a half and know they have a much longer, bumpy road than us. That's when I realize that throughout hard trials and life experiences, we can not only grow closer to our Heavenly Father and Savior, but we also learn a greater sense of compassion and love for others. I feel like this year we have learned this a lot.

I am grateful because I know we have been blessed, but I would be lying if I didn't say this all has been really HARD!