The World Moves On

The little baby that I mentioned before died last night. I came in this morning and her spot was empty. Just like that. She was just too early. My heart breaks for her parents. When I was in nursing school, we did a short clinical rotation through the NICU. I always thought I could never work in a NICU because of the teeny, tiny babies like that one. I thought that I knew what I would want if I was in that situation and I didn't know if I would be able to take care of babies that I didn't know what was "right" ethically. But now, having been through what we have, I don't know how I could ever make the decision to not "do everything" for my baby. I think I would know deep in my heart that I wouldn't want my baby to suffer, but I just don't think I could make the decision whether we tried to prolong my baby's life or let it go. It's certainly not a black and white area. Before we had the boys, we had to talk several times to the neonatologists about what we wanted done if the boys were born at 23 weeks. It was just awful. These are decisions that I don't feel like any parent should ever have to make. In a way, I am glad that we didn't have to make the decision for Carter, because I think it would have broken my heart even more.  We are really thankful that our boys didn't come until 25 weeks. It doesn't seem like 2 weeks would make that much of a difference, but in a baby so early, it can really make a huge difference. Please keep this baby girl's family in your prayers.

I was recently talking to someone about how things were going when I went home. They asked if it was weird to be home and in my "normal" environment. And it always is a little weird, although it is getting easier. I think one of the things that hits me the most is sometimes I feel like I am just watching the world move around me. While my world seems to have stopped, the rest of the world keeps moving. The flowers, cards, and phone calls start to stop. But our grieving doesn't. It feels like people start to forget, but to us it feels like it is just beginning. The double outfits still hang in the closet and we are looking at proofs for Carter's headstone. As I hold Cohen, I can't help but think about what it would have been like to hold both of my boys together. To us, the world still seems like it should be on pause. Like we shouldn't have to jump back in, but that we should get to take a break and come back when we are ready.

Our Nurses Rock!

One of Cohen's favorite nurses takes really good pictures of the babies. We always love to see what little surprises she has left for us on our picture CD. She also offers to snuggle with Cohen while we are gone :) We are so, so thankful for the wonderful NICU nurses and all they do for our boy. They have been with him since day 1 when we didn't even know if he would live. They have cared for him, talked to him, loved on him. They learned all his little quirks and they know that he can be a little particular sometimes. They know him well because they are there with him all the time. They fight for him when they know he needs or doesn't need something. They have also taken good care of me too!  It's nice to know that even when we aren't there we know Cohen is very well taken care of and it makes being away a little easier. And we know he will get lots of pictures taken so that his Mom doesn't miss anything! We appreciate them so much. (All of these pictures were taken by our nurse.)

 {Snuggling with his nurse (who takes the fancy pictures) while Mom & Dad were gone for a few days}

{YES THEY DO!!!!}

Pictures Galore

Ok, it's been a few days since I've put up pictures so there is going to be a lot. We have had lots of changes going on. Cohen is now getting his 3 hours of food over an hour and a half. They will watch him closely to see if he is tolerating the feeds okay, if he looks like he is working too hard with his breathing or requiring more oxygen they may slow his feeds down a little or keep them where they are so he can adjust. He is settling in nicely to his big boy bed. He has outgrown some of his preemie clothes. We never thought we would see that day, but we are so glad it has come!

{Big boy crib!}

 He is still on his 1L of oxygen but his Drs have decided to keep his O2 sats (the amount of oxygen in his blood) up a little higher. When he was younger, they wanted him to be around 88-95%, but not much higher because the higher oxygen saturations could cause his eyes (ROP) to get worse. Now that he is older (almost 38 weeks gestation!) it has been shown that the higher amounts of oxygen don't cause the ROP to worsen so they have increased the concentration of oxygen he is getting to about 50% (the air we breathe is about 21%) to keep his O2 sats between 95-100%. Since his heart is working harder because of his lungs, the higher oxygen will also be beneficial to his heart and hopefully it won't enlarge any more. Confused? Yeah, me too. Basically, he is getting a higher concentration of oxygen but is keeping the lower "flow" of oxygen.

{Snuggling after bathtime}

Cohen also got another bath today and I did most of it by myself! Then we had some good snuggle time and he took a little nap. When he woke up for his diaper change he got to practice nursing and he did pretty well but did have one quick ABC (where he drops his heart rate and O2 sats). I think he was tired from so much activity today.

 {Grandma's first time holding Cohen}

{Talking to Grandpa Guy}

12 Weeks Old

Cohen had a few busy days. Karen and Josh came down for a wedding in Seattle and stayed with us at "the home" and then in the morning we went in to see Cohen. He got to get in a good snuggle with his Auntie. Then, Saturday afternoon some friends, Jeremy and Allie, were visiting from out of town so they stopped by to meet Cohen and we got to meet their son for the first time. Then our other friends stopped by Saturday night! Danny's parents haven't seen Cohen in awhile so they stopped by this morning to see him as well and got to hold him for the first time. He has quite the fan club, I think we wore him out because he was really sleepy most of the day.

Cohen is 12 weeks old today and weighs 5 lbs 1 oz today! He continues to get his bolus feedings and got to practice some breastfeeding today. He has officially been moved into a big boy crib and wore his first newborn size onesie today! It is crazy to think that next week our baby boy will be 3 months old!! I am at home for the night and my laptop died so I am using Danny's computer. Pictures are on hold until tomorrow.

Time Away

Well, I can say that my time away from the NICU was indeed what I needed. We spent a few days away, calling in the morning and before bed to check on Cohen. We have received pictures from his nurses and know that they took very good care of our boy.

Mom and I drove home on Tuesday, stopping for a little additional retail therapy and a sugar fix at Krispy Kreme. Karen is having a "Due Date Party" for us in September so we also stopped to update the baby registry. I just didn't have the heart to take off the "twin" stuff so it is staying there. Danny and I had a "fruit and vegetable" dinner. We went to the Green Barn and picked out some stuff to eat. We are both getting sick of eating out and I have really been missing my fruits and veggies.

{MMMmmm}

Wednesday I had a massage and it was so wonderful. I came home and lounged around, did some laundry, paid some bills, did a little cleaning, picture organizing, and some scrapbooking. I asked Danny what he wanted for dinner and he wanted to barbecue some ribs. Turns out they were buy one get one free at the store so we had quite a few ribs and not enough people to eat them. So, I did what any girl who lives within 5 minutes of most of her family does...called them all to come over and eat with us! We had a good time barbecuing and hanging out in the nice weather. The nieces and nephews had fun playing on the big dirt hill behind our house.

 {Master of the BBQ}

Thursday morning I got my hair cut. It was Danny's day off and it was SO nice out we decided to go up to Mt Baker and take a little hike. We went up to the Bagley Lakes Trail, where we went last year around this time. The majority of the trail was still covered in snow so we did our best, tromping through the mud and slushy snow, hoping we didn't slide into the lake. We drove past the lake that freezes over and becomes a sledding hill in the winter. This was where Danny made his first move on me! We had gone sledding with a group of friends and I was sitting at the top of the hill in my sled and he came and set next to me and leaned on me. The rest is history. We also did a few chores, taking Danny's car in to the shop for a check up only to find out he needs new tires. Boo (must have been those 12,000 miles) .

Overall, my time away was very restful and much needed. Cohen did wonderfully while we were gone! I feel like we are ready for the last stretch here. We just need to get Cohen to his happy place on his oxygen and get that boy eating! He got to practice breastfeeding tonight and he did really well. He looks like such a big boy in his bed. They also started him on bolus feedings today. Instead of constantly getting food, he is now getting 3 hours worth of food over 2 hours and then they will slowly increase how much he gets over a shorter amount of time. Although it will probably be awhile yet, we can't wait to have him home with us.

 
Please say a little prayer for the family of the 23 week baby. The baby isn't doing well and isn't expected to make it through the night. On our way out, one of the respiratory therapists said "Aren't you glad you don't have the sick baby anymore?" And yes, of course we are! We are so, so glad that Cohen has come so far. But, I don't like that anyone has to have "the really sick baby". There was a  time when we weren't sure if Cohen was going to make it. I texted my NICU friend as I was leaving the hospital and she said that it was an amazing feeling when you finally realize that your baby is going to live. I feel like tonight was the first time that I have felt really good about Cohen. It's hard to not have that lingering doubt in the back of your mind, the fear that you could lose your baby. I think we are really starting to see the light at the end of the tunnel. I know we still have a few things to get through, but we are so thankful for how far God has brought our little miracle boy.

Blessings

I listen to this song probably about 20 times a day...

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
It's not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching(s) of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Happy & Sad

Today, I am happy. I am happy because my little mighty man is 4 lbs 13 oz. He got the lid off of his isolette to see if he can maintain his own temperature and he is doing great! They wanted to see if he could still gain weight while in an open isolette. And he has been! He is also down to 1.5L on his oxygen and will move to 1L high flow later today. Tomorrow they will try to move him to a regular cannula (so the oxygen he gets won't be humidified anymore) and if he tolerates that he will get to try breastfeeding probably by this weekend!! WARNING: I am about to talk about breastfeeding so if you are a guy, or just don't want to read it, consider yourself warned. I have tried to lay low on the boob talk, but I am so excited to finally get to breastfeed. My breast pump has been my best friend for the last 2+ months and I am ready to part ways with it! I will still have to do some pumping after he starts breastfeeding but at least it's a step towards getting rid of it. I am hoping that breastfeeding will go well, but I have always had kind of a low supply. I would like to at least try nursing him, but if it doesn't work, I won't be heartbroken because I have a freezer full of breastmilk so he would still be getting it, just by bottle instead.

Yesterday, I was sad. I hate that I have to go to the cemetery to visit my son. It just doesn't seem right. There shouldn't even be a children's section in the cemetery. It's not fair that there is a new grave next to Carter's. It's not fair that there are any other graves there. I hate that on a perfectly sunny, summer day I can't be enjoying my two boys. Instead, I take a break from the hospital and visit my baby's grave. I tell him about his brother and how brave he is and what a fight he has put up. And that I wish he was here with us and that they could be in cribs side by side. That he could be wearing the second pair of dinosaur pajamas with the sunglasses on his feet to match his brother. I tell him that we miss him terribly and would give anything just to spend a few more minutes with him. I tell him that he was so brave for the short time that he was here and that if we can't take care of him, that we are glad he is with Jesus and the angels. I know he wouldn't want to come back. I know that. While I was out driving today, I was listening to the radio and I heard the Mercy Me song "I Can Only Imagine". And I started to imagine what Carter might be doing in heaven. I hope he is singing, dancing, playing, and being rocked by Jesus. I know he is having a good time. It's weird that instead of imagining heaven for myself (which I do sometimes) I am imagining how my son is spending his time there.

I am thankful that God continues to meet us where we were at. Happy, sad, or both at the same time. He knows my heart without me even having to say anything, although sometimes I do say quite a bit. But even in the times when I don't know what to say, he still knows. I am glad that all of my emotions aren't "too much" for him as I often feel that they are to other people. I am glad that he doesn't judge me for my feelings, or sometimes lack of feelings. And I am thankful that he forgives me when my feelings and thoughts aren't the greatest. I am glad that God knows where this life will take us next and that he is guiding our steps along the way.

Please pray that Cohen will continue to gain weight and that he will do well when weaned on his oxygen. And also, if you don't mind, say a little prayer that breastfeeding will go well when we get there! We appreciate your prayers so much.

(Almost) Wordless Wednesday

Spending some time here today...

Nicu-itis

Well, I think it's official. I have NICU-itis. I had a meltdown yesterday in the NICU and thank goodness one of our favorite nurses was there. I was frustrated that I thought he was making progress and it didn't seem like the Drs did. The nurse told me it was probably time for me to take a break. I am usually there for a significant amount of the day, almost every day. She said every mom reaches a point where they just need a break, especially one like me who is there a lot. And I think it's true. I find myself doing things like being on the bottom floor and pushing the down button for the elevator, or pushing the 3rd floor when I am on the 3rd floor already. Or texting my friend about something and then asking her how she knew about it when she called to talk.  Or throwing the reusable breast shields to my pump in the garbage and saving the wrapper they came in. Or getting home and realizing that the majority of my clothes are at "the home" and that I didn't actually pack any to bring home. Oops. Ok, that's probably enough examples. And here are some pictures from the last few days.

I haven't been home for any significant amount of time (other than when I was sick) since May. That's 4 months of being in the hospital or traveling back and forth. I can count on one hand the number of full days that I have NOT been at the NICU. So, I have been instructed to take a little "me" time, and a little "me and Danny" time. I have a haircut scheduled and a massage. And I have lined up lots of paperwork, bills, and other things I need to get taken care of that I just haven't had time (or made time) to do.

I did some retail therapy with my mom yesterday. It was pretty fun, there is a new teeny tiny baby in the NICU right next to Cohen. I remember how overwhelming and scary it all is when your baby is that sick. So, we decided she could use a little something happy. We got the most adorable pair of gold baby sandals for her girl and a few other things. It's nice to have something to look forward to, that someday her baby will get to wear cute things too. In the NICU every little thing is a big thing, whether good or bad. So, we just wanted to give her a little "hope". Because I've been there and I know what it likes and it sucks. Hopefully those bring just a little bit of happiness to her day. And of course I got a few things for Cohen too. We found the most adorable shoes on clearance at Babies R Us and couldn't pass up $2 shoes!

{Cute right? The picture doesn't do them justice...they are gold and sparkly}

 {Cohen's flip flops}

Cohen is doing fine, actually he is doing pretty well. He is down to 2L on his oxygen and tolerated it like a champ. And he gets to move to a crib!! Well, actually they will take the top off of his isolette first and see if he tolerates it. If he does then he gets to move to a little bassinet. He did have a little excitement this morning with an issue that turned out to be a non-issue. I think he will thank me someday for not sharing the details, poor little fellow. When he gets to 1L of oxygen he can move to the regular nasal cannula and then he can start trying to breastfeed pretty soon!!!! Yay!!!

 

{Smiling}

Sunday Night

Sorry, no pictures today. I am at home for the moment and didn't bring my camera or my laptop. Cohen is still doing well, he is up to 4 lbs 6 oz!  He has been having very few ABCs lately which is good and a lot less stressful on his Mom and Dad! He is still on 3L of oxygen and will probably get weaned tomorrow. He has also been enjoying lots of snuggle time, we usually hold him in the morning and then in the evening so that he can get some rest in between. He has also graduated to a bigger size binky (and now it's blue not pink!)

We had a nurse today who is pregnant and her due date is one day before mine was.  It's just so crazy to see Cohen and how big he is now and to think that the boys still would have been inside for another month. I would have been huge!

Danny got to enjoy some of the sunshine Saturday going river floating on the Green River with some friends. I passed on the opportunity because I wasn't sure how long it would take and I'm not sure how well pumping would have gone on an inner tube. I also have poor temperature control and get cold easily, which leads to me being quite crabby so I didn't want to take any chances there either. But, Danny had fun! I will be back in Seattle tomorrow and hopefully will have some new pictures then.

Skinny Boy?

Cohen is still moving along, although I guess he isn't growing as fast as the Drs want him to. They have a growth chart they have been keeping track of his progress on and while he is growing, he has kind of leveled off. So, they have increased the amount of fluid he is getting in a day by a little bit. They still don't want to give him too much fluid because of his lungs, he is still on his diuretics to help get rid of any extra fluid. The Drs want him to pick up his growth in hopes that he will continue to outgrow some of his lung problems which would help his heart, which would make him require less oxygen which would help his eyes. Everything that is done is somehow connected to another of his problems. Which can be good, but is also why they have to be so careful with everything.

Cohen also had an echo on Wednesday to check on his heart. Because his lungs are still sick (and probably will be for awhile), his heart has to work harder to get blood to them. When they looked at his heart, they said he does have a little bit of enlargement in his right ventricle, the side that pumps blood to the lungs. For now they are trying to keep tighter control of his O2 sats. Before, his alarms would go off when his sats got down to 83% and now they want to keep him between 90-95%. Because of his eyes, his ROP, they can't just turn the oxygen way up because it can make his eyes worse. But, the treatment for his enlarged heart is oxygen. So, it's kind of this catch 22 as they try and find the right balance to help his heart and lungs while not damaging his eyes. His PDA looks the same, still moderate in size, but continues to not seem to be a bother to him. He will have another echo in a month to check his heart again.

I had my first therapy appointment yesterday in Bellingham. She probably thinks I am a wreck (which I am) because I was already crying when I first met her. I had driven to Bham and when I got there all the parking around was pay parking. I had no money, no change, only my credit card, which the low-tech pay meters didn't take. So as I drove around and around trying to find somewhere to park I was getting frustrated. Finally, I found a parking garage and parked. Then I couldn't find the building that the therapist's office was in. I tried to call a few people to see if they could help me but no one was answering their phones. I tried calling the office and all I could get was an answering machine. By then I was sitting on a bench on the sidewalk crying. I decided to try walking up the street one more time to see if I could find it and I finally did, half an hour late. I have begin to notice that I really have no emotional reserves. Things that should be small, like not finding parking, become big things that I have a hard time dealing with. So, if you see me wandering the streets crying...please come save me!

Danny and I have talked about how sometimes we just feel numb. We don't know how to deal with everything we have going on. We don't know how to act or feel or what to say sometimes. We have felt so many emotions in the last 3+ months with the difficult pregnancy, wondering if we would lose both of our babies, and eventually losing one and having the other be critically ill. I think that there were quite a few times where Cohen was really, really sick and we didn't quite realize it. We knew he was sick and that things weren't great, but I don't think we knew how sick he was. I think we just couldn't process it. Now, looking back, we see how far he has come and how much God has had his hands on Cohen the entire time. Carrying him when we weren't able to.

Please continue to pray for our hearts emotionally and Cohen's heart physically. Also, pray that he will begin to pick up in his growth.

{These pictures are from the last few days/weeks. My camera disk is full and I haven't quite gotten around to clearing it off. So you will have to settle for these.}

The Boy in the Dino Pajamas

Time for a Cohen update! Our little buddy has reached 4 lbs!! He had a rough few days after getting his immunizations. He was pretty cranky and having lots of ABCs. His day today was a little better after getting some snuggles from his daddy. He had another echo today to check his heart. This time the Drs are checking it to make sure his heart isn't enlarged from having to work too hard as well as taking a look at his PDA...The treatment for enlarged ventricles (the bottom chambers of the heart) is oxygen. Which he's already on, so i'm not really sure what would change or how much. Hopefully is heart looks good and nothing needs to change. He is up to 11.0 mL/hr on his feedings. Grow Cohen grow!

Gramma gave him the cutest dinosaur pj's and he looked adorable in them. His night nurse thought she had seen something on his skin so she marked it with a marker to keep an eye on it. It ended up being nothing (but we are thankful for her attentiveness :) When I came in I was joking with the nurses about his first tattoo and how they should have made it say "Mom" with a heart or something.

{I love the feet!!}

How Are You?

I get asked this question all the time. It's a normal question, but I never know quite how to answer. Mostly because sometimes I don't even know I'm feeling. Or I feel so many things that I can't narrow it down to just one emotion. Or it changes from minute to minute. So, at any given time I feel one or more of the following: tired. Sad. Happy. Frustrated. Angry. In love. Numb. Worn out. Hopeful. Heartbroken. Worried. Anxious. Joyful. Loved. Devastated. Supported. Confused. Overwhelmed. Grateful. Thankful.

I have said this before but it is just such a difficult place to be in to be grieving a son and celebrating another. When I was in highschool I broke my arm and had to wear a cast from my upper arm to my wrist for awhile. After the cast came off, I was worried about doing anything with it because I was afraid that it would be weak and that I might break it again. The doctor explained to me that after a bone breaks and heals it is actually stronger than before because it has to build new bone to heal around the old. I am hoping and praying that our situation will be similar. That as we pick up the pieces of our broken hearts we will become a new family. Stronger because we have been broken. We have been told by several people that losing a child or having a critically ill child can cause stress on marriages and families. We are praying that God will be our strength and continue to bring us together through these experiences. Thank you for your continued prayers for our family!

Happy Anniversary!

Today is officially the day! I love you Danny and I can't wait to see what the next 50 years brings us!

Anniversary Weekend

Well, we are back from camping! It was only a one night trip, but we still managed to fill up the entire back seat and trunk with our camping gear. We started out our Saturday going to the hospital to see Cohen. Then we stopped by the Farmer's Market where we got some fresh fruit and veggies (yum!), then to the grocery store to get some food to eat while camping then headed on our way. We stopped by Danny's parents to say hi and drop off some pictures of Cohen.

We set up our tent and got everything unpacked and went for a little walk to the beach. We saw a little trail on the way back so we took that back to our campsite, that was about as close as we've been to a hike all year! By then we were starving so we made some bacon cheeseburgers to go with our vegetables. We finished up with some chocolate cake for dessert. We got into bed about 7:00 and talked about what we've learned about each other over the last 2 years and how it seems like we just got married yesterday and at the same time it feels like it was about 10 years ago. We were both asleep by 8:00 pm and we didn't get up until 8:00 am! Best sleep I've had in awhile despite the noise of the airplanes (we were in Des Moines, which is sort of near the airport) and the teenagers running around. In the morning we got up and had bacon and eggs for breakfast and then cleaned up camp. We had to clean all the "empties" out of the tent...2 water bottles and 3 cans of fruit juice :) Mom and Dad had a big night out! {We aren't very good at self portraits...this is as good as it gets!}

Danny had made reservations for a nice restaurant in Bellevue, but we decided we have eaten out enough and to come home for the night to Lynden. First, we stopped by to snuggle Cohen. He is doing well, but had to be turned up a little on his oxygen because he was having more ABC's (when he forgets to breathe and drops his heart rate). Poor little guy has had immunizations the last 2 days so he has had a low grade temp, and they are pretty sure the ABC's are just from that and that he will be back down on his oxygen when he is feeling better. We will have a romantic evening of washing cars, doing piles of laundry, vacuuming up fruit flies (someone, who will remain nameless, left some fruit out...) and eating homemade tacos. Sounds perfect to me!

 

{Cohen, back to looking like a cupcake in his extra warm hat from a friend's sister, thanks!!}

This might sound funny to some of you, but please say a little prayer for our kitty. He has been transitioning to an outdoor kitty but came in for a little visit. As I was typing this, I think he had a seizure. We have never seen him do this before and it scared us quite a bit. He was our first baby, we got him right after we got married. I had to go into our room and hide because I wasn't sure if he was dying or what he was doing. He seems to be doing okay now, but please just say a little prayer for him...we don't want to have to think about losing our kitty too :(

12,000 Miles

Danny and I decided the other day that in the last 3 months, he has probably driven about 12,000 miles between his job and back and forth to Seattle twice a week. Whew! That's a lot of miles. And we feel it. Neither of us has been at home for any consistent amount of time in the last 3 months, one month before the boys were born, and 2 months after. We are so, so thankful for the hospital and the nurses and doctors who have taken care of both Cohen and I. We know it will all be worth it in the end, but we are starting to grow weary of living at the hospital, not being together as a family, This combined with the stress of having a NICU baby, and of course missing Carter, is taking its toll on us mentally and physically. We are praying for strength and endurance to continue on and hoping that Cohen gets to come home soon (like in a month soon).

Cohen weighs 3 lbs 10 oz today. He has to start getting some of his 2 month immunizations soon :( The last couple days we have noticed that he has had a little cough. We are hoping that he isn't getting sick. The Drs said that it could either be reflux or some irritation left from being intubated for two months. We are hoping it's just nothing and will go away. 
And here are the pictures of Gramma R holding Cohen for the first time!

2 Months Later...

...Cohen got his first bath!!! I was sure he would scream the whole time, but he didn't, he just looked around the whole time. It was a little scary because they unhook him from ALL of his monitors, but he did just fine and even seemed to enjoy it a little bit. He gets cold really easily so he got his hair washed first while he was in a warm blanket and then made the jump into the tub for the rest of his wash. They also put up big heat lights so he doesn't get chilled. Afterwards he got all bundled up in his nice warm blankets and he even got a new (clean) isolette so he was really clean. {Caution: Picture Overload!}

We get asked quite a bit whether Cohen is "stable" and "whats next?" Cohen is considered stable, but stable is a relative term in the life of a NICU baby. We are amazed at the progress he has made and so thankful for all that God has brought him through. However, all it could take is one bug or one sickness that could make him really sick again. Before he comes home he will get an RSV vaccine because he is at really high risk for getting sick, which can be very serious for a preemie, especially one with chronic lung disease. So, yes he is stable, but not necessarily "out of the woods", if that makes sense.

As far as what's next for Cohen, I mentioned before he is on high flow oxygen. This oxygen gives him a little more pressure and he can get a higher amount. Right now he is on 3L (volume) O2 at about 30% (concentration). When he gets down to about 1 L O2 he can switch to a regular nasal cannula which, if he needs to, he can go home on. We are still hoping that maybe he won't need to! He's surprised us before :) He is up to about 1640 grams, which is 3 lbs 10 oz. When he is able to gain weight steadily, they will take the lid off of his isolette to make sure he can maintain his temperature on his own and continue to gain weight. If he does, he will get to move to a crib. So, before he goes home he will have to be able to wean quite a bit on his oxygen, take all of his feeds either by bottle or breastfeeding without having to have any of it down his feeding tube. That's kind of the "what's next" for him. He is 35 weeks today and the boys' due date was Sept 15. We are still hoping that he will home around then, we can't wait!!!

Out of isolation

Danny here. Cohen is 66 days old today.  Its hard to believe it has already been that long, but at the same time it feels like every hour is just barely creeping by.   Every day seems to last a week, but at the same time its suprising to me that 66 days have already gone by.  It feels like I'm stuck in a time paradox or something.

Cohen is on the high-flow nasal prongs today and over the last 24 hours they have attempted to move his volume down from 4L to 3L.  Yesterday and last night he didnt handle it very well, so today they moved him to 3.5L and he seems to be doing pretty well so far.

He finally got out of isolation today!  The regular person at infectious disease came back and they had a meeting where they decided that he didnt need to be in isolation anymore.  His mother was very excited and has already gotten her kangaroo care in for the day.  We also don't have to wear the yellow non-breathable gowns or gloves anymore.  Jana and I are sorry to say that we won't miss them.

That's all the big news for today.  I'll use my audience to mention that Jana and I are celebrating our 2 year wedding anniversay this weekend.  I couldn't imagine marrying a more strong, beautiful, and wonderful girl and I thank God for her and Cohen everyday.

{Special thanks to Uncle Joel, Auntie Christine & the boys for Cohen's monkey jammies!}

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.