Happy Birthday Jordan!

This last weekend we came home for my nephew Jordan's 5th birthday party. We missed some of the fun but did get there in time for presents and dessert! He got a few new garbage trucks, he LOVES garbage trucks and often walks around collecting garbage and recycling. Cohen said he wanted a little break today so here are some pictures of some other cute kiddos.

We have gotten some really kind, thoughtful gifts from people. That necklace I am wearing in the picture is from a new friend who also lost a baby recently. The necklace has Carter & Cohen's names on it along with their birthstone. I love it so much and I wear it all the time because it reminds me of both of my boys. 

I have decided that since Cohen is more stable now, I am going to start trying to come home once a week in hopes that it will help me adjust a little better to our new "normal". I know it will change again when Cohen comes home, but I think it will be good for both Danny and I for us to spend time together in our own house instead of at the home.  Our anniversary is coming up next week so we are trying to plan a little camping trip because we both really like to camp and haven't quite gotten around to it this summer. We will just be camping for one night, somewhere with phone service and only half an hour away from the hospital, but we will pretend like it's a big getaway. Hopefully we will get some nice weather.

Gramma also got to hold him for the first time yesterday but I don't have my camera card at the moment so those will come later. Cohen had a busy day yesterday with visitors from his Gramma, Auntie Karen, and our pastor and his wife. Thanks for stopping by everybody! Ok maybe just one Cohen picture that his nurse took yesterday. Fine, maybe two. I can't help myself.

ROP and a Guest Holder

Cohen has had a few boring last days. Just the way we like it! He is still on his high flow nasal cannula. Today he is having a lab holiday, NO labs!! He has only had one other day with no labs since he was born. Right now he is on 4 Liters of oxygen, when he gets down to about 1 liter he can switch over to the regular nasal cannula and then he gets to start bottle/breastfeeding!!!!

Cohen also has another eye exam today. Premature babies are at risk for retinopathy of prematurity (ROP).  This is when the blood vessels in the eyes don't develop correctly in the retina. Cohen has had pretty much all of the risk factors at some point in his little life...apnea, high CO2, low heart rate, blood transfusions, infection. He is at Stage II right now so we are hoping it doesn't progress any further! If it does, he may have to have a laser eye surgery which would mean he would have to be intubated again :( So please, please pray that his eyes stay stable and don't get any worse. The nurse yesterday told us that Stevie Wonder was a preemie and back then they used to just crank up the oxygen so that the babies were always high (100%) and now they know that it's better to keep the babies lower at 90-95% because somehow the high levels of oxygen makes the abnormal development worse.

Karen came down yesterday to visit and got to hold Cohen for the first time! Cohen loved having his auntie hold him and he was very well behaved. Cohen weighs 3 lbs 5 oz and has outgrown all but one of his hats. I went to change his diaper yesterday and unswaddled him and saw that he had on these booties that his Gramma made him. They were a little big, but so cute. I love that the nurses dress him and put on the few clothes and things that he has. Also, the Drs have said that Cohen should get to be out of isolation in a week! No more gowns and gloves! We have a paper chain on his doorway counting down the days because we really dislike isolation :)

 

Sorry, this pictures has weird glares because I took it through his isolette, but he was wearing his booties 

 

Please Mom, no more pictures!

2 Months Old!

Dear Cohen,
We can't believe it's been two months since you and your brother were born!! You have come such a long ways and have overcome so much! You have been through more in your little life than a lot of people will go through their whole lives. When you were born we were told your lungs and kidneys weren't working. You had a hole in your heart (your PDA), you got a mysterious fungus, you were intubated for 8 weeks, you self extubated twice,  got chest compressions, had numerous IVs and 2 PICC lines. And you fought and fought and fought and overcame it all. We are so, so proud of you little man.

Mommy was holding you the other day and was overwhelmed by how much she loves you. Your Daddy calls your nurse every morning to check on you. He always misses you when he can't be here. We just can't believe that you are ours. We often sit and talk about how cute you are and about the dreams that we have for you. We are so thankful for you.

We have loved getting to see your whole little face for the first time and hear you cry and make little baby noises. You are a sweet boy and often we find you awake just looking around, curious about what is going on. You love your binky and it settles you right down if you get upset.

We are starting to see the light at the end of the tunnel (even though it's still at least a month away) and we can't wait to bring you home and be all together as a family. Your Daddy and Mommy talk about how some day we are going to get to take you camping, fishing, and to baseball games. You are such a special little guy and we love you so, so much. Happy 2 month birthday!!!
Love, Mom & Dad

Spaghetti, Smiles, and Sunshine

I have been loving seeing the sunshine lately even though the only time I usually see it is on my walk to or from the hospital. It's been nice to at least have a few days of summer.

I am sitting at "the home", that's what we call our hotel/dorm :), waiting for my water to boil so I can make some spaghetti. After two months of eating mostly fast food, I am getting ready to have some real food again! The home has a shared kitchen, but doesn't have many dishes and there are often other people in there cooking as well. It's definitely not as convenient as just stopping to get something to eat, but I sure am missing home cooked food! So I decided to start easy with spaghetti because it's easy to make and clean up.
Not much going on with the little mighty man today. He got his CPAP pressure turned down again, next step is probably the nasal cannula!! We aren't sure how fast they will move to that as he just got extubated this week, but we'll see. He seems to be doing well so far. I think he was just so ready to get rid of his tube. He also wore his first onesie today. It was a little big, but pretty cute. Cohen has also been smiling for about the last week or so and it is SO cute. I managed to get a picture of his little half smile today!

I Think I Can, I Think I Can, I Think I Can

Today has been a better day for me, thank you for all your prayers. One of the NICU social workers said to me the other day "It's hard when people are used to you being a strong person, then you feel like you have to keep being strong". Which is true I think...I do feel like I have to be strong, and to some degree, I do. But, sometimes I have days where I just can't be strong anymore!

Cohen is doing well, his Daddy got to hold him this morning. He is at a Mariner game with a friend, it's nice for us to get out and pretend to be normal once in awhile. Just when I was so sad that I didn't have any more clothes that fit him I remembered that his NICU friend Eli (who is now at home!) had given him some clothes so we put some of those on him. He looks so cute in his big boy clothes. Speaking of big, he is 2 lbs 15 oz! Almost to 3 pounds!! We are thinking maybe he will get there in time for his 2 month birthday. We came in this morning and one of his favorite night nurses had taken his picture without his mask on and made him a little sign. It is so cute. We are so thankful for all the great nurses around here! He had another good blood gas this morning so he got to come down on his CPAP pressure and he is hanging out around 26% oxygen. The air that we breathe, room air, is 21% so he really isn't on that much oxygen. We are just hoping that he keeps going down and can get off of that CPAP and on to his nasal prongs, which is just for a little extra oxygen, before too long.

He might get to come out of isolation tomorrow which would be SO nice. They had taken another culture from his breathing tube a little while ago and so far it hasn't grown any bacteria yet, so hopefully it won't! It gets really hot in his room when the sun is out and wearing the gown and gloves doesn't help.

I took some really cute pictures of him last night with his mask off, but they are all blurry :( Maybe I will try again later today. For now, here he is with his scuba mask on and the ole one eye look. He likes to do that a lot. OH and last night, he sucked his thumb all by himself!! Usually he can get his hand by his face, or his finger up his nose, but last night he actually got his thumb in his mouth and sucked on it all by himself. I think he surprised himself a little.

Had enough pictures? :)

I am just really missing Carter today. I ordered the boys' birth certificates and then Carter's death certificate. You shouldn't have to check the "no" box under the question "Is this person still living?". It just doesn't seem right. I was walking to the elevators the other day and there was another guy going out and he asked me if I had a baby here and I said yes. He then told me about how they were trying not to have their baby too early at 32 weeks. Ugh. I know it's not right, but I find myself getting irritated at people. I would have given anything in the world to have both my babies born at 32 weeks. I know it's not their fault, it's their reality that it would be scary to have a baby born early. And it is, it's terrifying. I also find myself irritated when I see or hear people complaining about their pregnancy and how hard it is. Of course I wouldn't wish this on anyone and I hope those people don't have to know what it's like to have any early baby. But, I would take being huge again, not being able to get out of bed, being stuck on monitors...I would do it all again if I could have my baby back and have them be born later. I know that people only know their own situations and have no idea how it feels to be in a different situation, but it's still hard for me. When I see pregnant people it just makes me think about how I should still be pregnant for another 6 weeks. I don't know what it's like to have a nice everything is flowers and rainbows pregnancy. We had a difficult pregnancy from the start. Of course we were thrilled to be having a baby, and even more excited to be having twins but our pregnancy was filled with fear and unknowns and tests and more tests and hospital stays. It's not anyone's fault of course, I hope someday that we can have a flowers and rainbows pregnancy :) It's just really hard, that's all. And I am glad that most other people don't have to know how this all feels. I've had a rough morning so please say a little prayer for me. I just have to keep reminding myself of the things that I know to be true, that God is loving and good and that all of this is not a mistake.Thank you for all of your patience with me and support for our family as we are going through all of this.

The Lord is close to the brokenhearted and saves those who are crushed in spirit.
Psalm 34:18

As for God, his way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in him. For who is God besides the Lord? And who is the Rock except our God? It is God who arms me with strength and makes my way perfect.
Psalm 18:30-32

Diuretics & Eye Exams

Cohen had an okay day today. His blood gas this morning was bad so they did a chest xray and his lungs looked junky. The doctors are thinking that it is fluid in his lungs so he has been started on Lasix, another diuretic to help him hopefully pee out some fluid. They also had to increase the amount of pressure that is going in to keep his lungs open. I got to hold him again today and he did a little better. We are really, really hoping and praying that he doesn't get too tired and have to have his tube back. Cohen also had his eye exam today and we should get the results of that tomorrow.