3 steps forward 2 steps back

(yes he is that cute even with hat hair)

That's how things work in the NICU. Rewind to last Thursday. Carter was doing awesome so they decided that Friday morning they were going to ext abate him to c-pap. When Trav and I went to see him Thursday night we thought he looked sick. He was really puffy and his eyes just looked sad. Friday morning comes and they ext abate him. Wahoo! Well it only lasted about and hour before it wore him out and they put him back on the ventilator. Immediately after they bumped his vent settings back up to help him recoup. Unfortunately they kept going up over the next couple days. All Friday he just looked completely pooped and not to mention really puffy. Meanwhile the couple days prior to all this his incision on his back from PDA surgery was getting red, swollen, and forming puss pockets. The started applying a topical antibiotic. When that wasn't helping the did a blood culture and later a culture of the puss pockets and Saturday Morning we found out that Carter has MRSA (staff infection). Turns out we think one of the nurses was carrying the infection around because 3 other babies have it as well. They started him on some antibiotics for the infection and 8 days later we are just finishing them and he seems to be feeling so much better. When Carter was all puffy he weighed 3 lbs. 15.9 oz. Which was too fast of a weight gain so they started him on some medication to help him pee out all the fluid he is retaining. Today was the first day he has looked a lot less puffy. He lost some weight during the week and gained some healthy weight back and now he weighs 3 lbs. 13 oz.

After a week of him not feeling well we were able to finally get him back down on some of his vent settings. The plan is to get the rest down hopefully over the next couple days and then try to ext abate him again the end of next week. Please pray for him. Other than that he is doing awesome. He tolerates his feeds really well. He has reflux so they extend them to over a two hour time period. Have I mentioned his milk cocktail yet? The poor kid will not know what to do if he ever gets to taste straight milk. Right know they are adding two different types of calories to his milk, caffeine (to help him breathe more), protein, and sodium. It is quite the ordeal to get his milk ready. He has gone up to the next size of diapers and they look absolutely huge on him.

Here are a couple very cute and fun things about Carter.

He wears clothes! It is probably the cutest thing ever! He seems so much more like a "real" baby now. They are preemie size and are still huge on him. The length is perfect, because he is so long, but they are all quite baggy around.

He is such a Wilson which means he is a sucker for a head rub

He loves his Bink and does so well with his new big boy one

This is the new get up that anyone that enters Carter's room has to wear because of his staff infection. I hate it. It makes everything feel so much more "hospital". The part that stinks is that we have to wear it until he is discharged. I can't even feel his cute little bum when I change his diapers, because of those dang gloves.

Here is Carter getting stretched by the OT. He loves to be stretched. This was when they sat him up he wasn't too sure what to think. PS this was when he was so puffy. That ring around his neck is how it was all over his body. Poor baby.

Carter got a big boy bed. For a day. Can you even see him in there :) He is getting so much closer to regulating his own temperature so they put him in the big bed. That night he lost too much weight probably from burning too many calories trying to keep himself warm so they put him back in the incubator. Poor guy he gains too much then he looses too much. Those Doctors can't make up their mind.

Trav and I gave him a bath last night. It wasn't his first one, but the first that we have given him and he loved it!

A Birthday Letter

Dear Boston,
I can not believe it has been three years since you became a part of our family. In a way it feels like you always have been, but then it seems almost like just yesterday that I had you. With Carter being in the NICU it brings me back all the time to when we first had you. I remember when you were a week old and I held you for the first time. I cried happy tears and thanked my Heavenly Father over and over again for blessing me with you. I still do that quite often. You are such a special boy and make Mommy and Daddy so happy. At three years old you are quite full of yourself. You are way too smart for your age. A lot of times I forget that are only just three because you are so smart. This is hard for both of us sometimes, because you are smarter than a three year old, but still have three year old emotions and sometimes I think we expect you to be or act older than you should have too.

You are one very funny boy. Lately you have been quoting Toy Story 3 a lot. One night when I was leaving your room after putting you down for the night you said "Mommy don't leave we are all counting on you" I about died. Also if you see a McDonalds while we are driving you always say "I'll have a Diet Coke please" the only person I know that drinks Diet Coke is Grandma D. what is she teaching you ;)

A couple things you love right now are Toy story 3 and Mater Tall Tales. I don't think we have watched anything else since Christmas when you got them. You love any restaurant with a play place. I guess that might have something to do with the craziness that we are calling our life right now and the fact that you eat at chick fila and McDonalds a lot. You LOVE to ride your bike. You absolutely love when Daddy comes home from work and he plays tackle with you. You ask for a "Juice and snack please" about twenty times a day. You would rather snack all day than sit down to eat an actual meal. Animals not real ones, but the ones you sleep with. If someones ever gifts us another stuffed animal I might go crazy. You currently sleep with 3 snugglies, Mickey mouse, Monkey, Baby blue, Daddy Blue, Shamoo, Macaroni penguin,and your pillow pet. It's quite the party in your bed. I have tried eliminating some of your animals and you always know when one is missing.

A couple things you are not so fond of these days is Mommy and Daddy leaving. Don't worry buddy we don't like it either, but it will be over soon. You are not a fan of sitting at the table to eat. We still pretty much have to put on a circus to get you to eat an entire meal. I keep thinking this will get better, but here we are at three and I am still feeding you. You also don't like the fact that it is so cold outside. You are definitely a warm weather boy and love to be outside. You are also not a fan of listening lately. I always heard about the terrible two's and I think all those people were wrong. Two's were great I am not so sure about these three's though.

How could I forget the i-pad. You love this thing. We pretty much use it as bribery for everything. Don't judge us it works. Most of the time.

Something Mommy loves about you is your Cheeser face. Our pictures have taken on an entirely new look. I also love when you come snuggle in bed with me in the morning. I love hearing you say that Carter is so cute and wears diapers. You are going to be such a great big brother when he comes home. My favorite word you say is yellow. Your L's sound like Y's and it's probably the cutest thing ever.

Some things Daddy loves about you right now is when you tell him to vacuum his scruffies off. He loves when you randomly cheer for the Cowboys whenever football is on. He can't wait to take you to Rangers games again since you have been asking for them for the past month. He loves when you run to him the second you hear the door open when he comes home from work.

We sure do love you. Thanks for being you I wouldn't want you any other way. You mean the world to me. I love you to the Moon and back.

Love, Mom

Celebration

When we first got into the NICU all our nurses, doctors, and other NICU friends told us to celebrate the good days because they will carry you through the hard days. The last last week and a half we have been celebrating big time around here. It seems like from one day to the next it just clicked with Carter what he needed to do. We have gone down on his vent settings daily. He is now on a rate of 20 and a pressure rate of 6 which are both the lowest he has ever been. His oxygen levels have been between 21% (which is room air) to 27%. We actually started talk of ext abating him off the ventilator. The doc wrote the order that if he self ext abates meaning pulls his tube out on his own to let him have a go at it. Our move after that will be to put him on c-pap. I am so excited for him to move onto the next milestone, but will be sad to not see his little face as much because he has to wear a hat all the time. The thing that makes me most excited about c-pap that I will be able to hear him. With the ventilator you can't hear anything. Weird that he is a month and a half and I have never heard him cry. His brain bleed continues to look better each week and we are so happy about that. Yesterday he had to get another transfusion which meant we had to stop feedings again. So now we start the road of getting back up to full feeds which shouldn't take him too long because he does so well with them. He does have reflux so we moved his feeding tube to his nose and stretched his feeds out to over an hour which has seemed to help a lot. We are so proud of Carter he is kicking some serious NICU butt around here. "go Carter go...go Carter go" that's what Boston chants around the house cutest thing ever!


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So Proud

I am one proud Momma around here. Last year the Easter Bunny brought Boston a tricycle. He could not figure out how to peddle for the life of him. 8 months later he finally figured it out. By this time the trike was just a tad small for our giant boy, but he still loved to cruise around on it. We were given a bike in perfect condition from a family in my sister in-laws ward. I thought it was going to be too big for Boston, but he wanted to ride it so I let him have at it. This video is of him a day after he learned to ride it. As you can tell we are still working on the breaks.

Here is your first look of Carter in action. He was going to town on his tiny bink the other day it was so cute. He is getting the sucking down, but has a ways to go on the swallowing. He stores his saliva in his cheeks like a little chimp munk. Ps don't mind all the alarms. That is actually pretty quiet compared to normal. Also no he doesn't have a broken arm that is just from his IV for his blood transfusion.

I am so proud of my boys.

The Answers

Here is my best attempt to answer your questions.

1. What is your typical day like?
If the day went exactly how I were to plan it this is what is would look like
7:00 wake up and pump. Get Boston and I breakfast and ready for the day. Then we pack our bags and head out to do something fun. We usually end up going on a bike ride or eating at chick fila.
11:00 I drop Boston off at wherever he is going that day an head to the hospital and pump when I get there
4:00 pump one last time before leaving the hospital
4:30 pick Boston up and head out to do another activity. Our favorite is to get ice cream cones at braums.
5:00 pump and play around with Boston.
6-7:00 Trav gets home. We eat dinner and get Boston ready for bed.
8:00 Boston goes down I pump and we both head to the hospital if we have someone to stay with Boston. If we don't Trav usually stops by the hospital on the way home.
11:00 pump and go to bed.

Like I said this is what a perfect day would be like. Most don't go this smooth.

2. Who is able to visit Carter?
Anyone can visit as long as Trav or I are there. You have to be healthy of course and free of contagious symptoms for 24 hours. Because it is RSV season we have been told to keep our visitors to a minimum especially those that have little kids at home.

3. How long will Carter be in the NICU?
The golden question. We really have no idea. They try to aim for his original due date of March 25th, but it could be sooner it could be later it just depends on when he is healthy and ready.

4. How am I doing with this emotionally?
It totally depends on the day. Typically if Carter is having a good day so am I. Now that things are kinda stabilizing I feel more in control of my emotions. At the beginning I was a wreck. I still feel like I Am never in the right place. When I am with Boston I feel like I should be with Carter and when I am with Carter I feel like I should be with Boston. Boston is having a really hard time with all this and it really shows in his behavior. It absolutely breaks my heart for him. Trav and I rarely see each other and when we are together we are so burnt out we usually just pass out. We miss our old normal and are trying to get used to our new normal. So to sum it up I am doing ok mostly good, but definitely have my days.

5. What about my surgery?
Did I ever tell you how bitter I was about this whole thing? I felt as if our plate was full enough already and this was one more thing we couldn't handle. Now that I look back it was such a small moment and I feel so great now that I laugh when I think about how I wanted to just deal with the pain and skip the surgery. My ovaries look great and my appendix are great. The surgeon said that sometimes it will happen again 6-8 weeks down the road at which point they would just remove my appendix. I am not worried about that since I have been completely symptom free.

6. How long and often do I get to do skin to skin also called kangaroo care?
I get to do it once everyday if I am healthy and Carter is doing well. You are required to do it for a minimum of an hour, but up to three. I start at the beginning of a feed and hold him until it's time to eat again. Lately since he is eating so much more his belly gets really full and he gets uncomfortable because it puts pressure on his lungs so I usually hold him for two hours and put him back down so he has more room.

7. Will Carter be ok after all this?
Good question we have no idea and most things are too early to tell. Obviously he will be behind developmentally, but we will try to keep him on track according to his adjusted age. Meaning his actual age minus four months. So when he is five months old we want him to be able to do what a one month old does. Make sense? Most micro preemies have a slow start, but go on to be perfectly normal. Most babies born at his gestational age require oxygen when they go home. We are praying that is the only thing he comes home with. Also with all the oxygen he will most likely have to get glasses. They monitor his oxygen levels really well so most babies are great and have no vision problems. They just did laser surgery on a baby here and she has perfect vision now. It is so crazy all that they can do for these little guys.

8. Can you or do you want more kids?
Can I? Yes. Do I want more? Yes. Are we done? Yes. This whole thing has been so crazy and since we have no idea if it would happen again we are going to call it quits. We feel very blessed to have our two boys and unless we get someone screaming at us to have another we will be very happy with just the two of them.

9. How's your milk supply?
Great! I have been very blessed in the milk department. So blessed that I was kicked out of the NICU freezer and am about to kick myself out of my own freezer. We really need to get a freezer for our garage to store it, but are just having a hard time pulling the trigger.

10. How is your insurance?
We have great insurance and due strictly to Carters birth weight he automatically qualifies for medicaid. Medicaid started January 1st and we are so happy because we received our first bill in the mail the other day for almost a thousand dollars and that was for his chest x-rays only for ten days I cant even imagine how much all the other stuff is. Ouch! One thing for sure is that Travis and I don't make cheap kids. ;)

11. What is the thing that is holding Carter back the most?
Definitely his lungs. When Carter was about a week old they got my placenta report back and found inflamation. Carters doctor said that if it presents itself in Carter it would in his brain and/or lungs 4-6 weeks after birth. Right around four weeks we started seeing it show up in Carters lungs which caused him to have those rough couple weeks. He will get over this it will just take his lungs a little longer to mature and we are not sure if it will cause him any problems later. We feel very blessed that it is only showing up in his lungs and not his brain. The lungs are treatable the brain isn't.

12. What are the benefits of kangaroo care?
Obviously it is great for Mom and giving them the chance to feel their baby and make that connection. Mostly it is beneficial for the baby. When in the Mom they are able to regulate their temperature and when near the breast it actually helps the mothers body produce specific antibodies that the baby needs to fight any infection that they might be at risk for. Also preemie mothers milk is deferent from full term babies milk. It has more nutrients and doing kangaroo care helps the mothers supply.





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One Month

Carter I can't believe you are a month old today. The last month has definitely been a tough month for our family. We have learned so much and been so blessed. I guess you knew it was especial day because you decided to shower us with good news. No 2nd heart surgery wahoo!!! You have a murmur but no hole so we are so happy and just pray it stays that way. Also you had two great blood gasses so they were able to go down on your vent. Your rate is now at 42 and your pressure went down to 22. We are making baby steps back to getting your rate down to 25 where is was last week I know you can do it buddy. Speaking of baby steps and good news your oxygen was down to 39% percent this morning. We are learning that if your nurses don't turn your oxygen down very slowly when you are high satting then you get angry and drop fast. I can't believe how big you are getting. I know it's crazy to say big and chubby when talking about a two pounder, but really buddy you are growing so fast. Today you weighed in at 2lbs 13.6oz. Before we know it you will be three pounds and able to wear clothes. I look at a couple of the preemie outfits we have gotten you and they still look like they will drown you. Crazy to think you will be wearing preemie stuff for a couple months it is so tiny. Yesterday was a fun day for you and Mommy. I got to see you chin for the first time when they were changing your feeding tube and you most definitely have your Daddy's chin. Also I learned that even though you are tiny you can really poop. Let's just say you left a huge mess all over your bed, wires, tubes, nurse, and Mom. I am totally fine with you doing it in the hospital because it feels normal, but let's try to be done with that business by the time you come home. Carter we love you so much and are so proud of you. You are such a fighter and doing so great with all that we are trying to make your little body do. Thank you for all that you have taught me I am so glad that I am your Mom.

Rough Week

Cute little Carter. Shiny patch on his back is from heart surgery and the white tube coming from his chest is his Broviac line.

Poor little guy has had a rough week. We have been moving backwards as far as the vent and oxygen is concerned. We have had to bag him quite a few times, which was absolutely horrifying. No Mother should have to watch their baby turn blue, their heart rate stop, and belly pop out. It was awful and I can't get the picture out of my head. The nurse heard a murmur in his heart again yesterday. They ordered an echo to check things out. The way he has been acting this past week is almost identical to how he was before surgery. Doc says it is very rare that the clamp from surgery can re-open, but it is possible. We are praying that we don't have to do surgery again. Starting over on feeds would be no fun because we just got up to full feeds 22ml with 24% calories added and it has taken two weeks to get there. Also they just took his Broviac IV line out and we don't have luck with getting Picc lines in. Please pray for Carter. On a good note we are up to full feeds, he is gaining weight 2lbs 10.7oz, and his brain bleed has gone from a level 2 to a level 1. Such a blessing. Keep strong Carter we sure love you.

Christmas... a month later

Christmas Eve was great. I was so excited to be home from the hospital. We didn't plan anything because we weren't sure if I was going to be home or not. Luckily our amazing friends the Williams brought a great Christmas Eve to us. We had a delicious ham and enjoyed catching up and laughing with them. So refreshing after a not so great past couple days. Thanks. Before bed we hurried and set out some food for Santa and his Reindeer and opened our Christmas Jammies.

Christmas this year was well different. Lets just say we are really looking forward to next Christmas. Everything felt so weird. We were missing our Family in California where we were planning on being, it felt wrong that Carter wasn't there, Boston was totally overwhelmed, and we weren't in the best of moods. All that aside it was a pretty good day.
Santa was very kind and brought the much talked about scooter. Boston was a very happy boy.
Nothing better than a new pillow pet, sleeping bag, and bullseye.
Daddy reading Boston one of his new David books. The kid loves any book written by David Shannon.
The Pillow Pet. I don't get these things, but Boston is for sure in love with his and it makes us very happy.
He is in love with Mater Tall Tales. I think his face says it all in this picture.

No name

I don't know what to name my posts anymore. Everyone could be titled update.

Anyways here is a funny story that happened to Boston and I this morning. He has been really into locking doors lately. This morning we were in his room getting dressed and he needed to go to the bathroom which is something he wants to do all by himself lately. So I sat on his floor and when he left the room he shut his door and locked it from the outside. He finished his potty business and tried to open the door but for some reason he couldn't unlock it. So here I sat locked in his room and he had the rest of the house to his naked little self. I scoured his room to find something to unlock the door. I kept telling him to try and unlock it and he couldn't do it. I decided to send him on a hunt for the skewers. He came back with all sorts of things my car keys, a cutting board, knife sharpener, magnets, erasers, fruit snacks, and a couple other random things. By this time it had been about a half hour. Meanwhile I kept scouring the room and every time he returned to the door with something for me to unlock the door with he would remind me that I needed to wipe him :). I finally found some little scissors that I was able to unlock the door with. It was pretty funny to be honest and he was being so funny during it all.

Here are a couple pictures that show how tiny Carter is. On his wrist is Travs wedding ring. He is doing really well the last couple days. We are working on lowering his vent settings and his oxygen. Currently his vent is set at 30 and his oxygen is around 30-36 depending on the day. This is kinda his happy spot so please pray that he can go down on his settings so we can get him off the vent and move on to the c-pap. He is doing really well with his feedings. He is up to 10cc which is great being one week post op.




Here he is a nice and comfy with his snuggly. Boston loved this picture!

I am still loving holding little C-man. He crib mate came down with RSV so they are wanting me to be the one holding him for a couple days so that my milk will make the antibodies that Carter needs to fight it even though he tested negative for it.


For the next post I want to answer questions any of you have because I haven't been able to. I am very open about all this so any questions you have about anything I will try my best to answer. Ps I won't get offended by anything either so don't be afraid to ask. This will be great for record keeping too since there is so much more I want to post about, but haven't had time.