8 Weeks Old!

Can you believe Cohen is 8 weeks old!? I can't! He is getting to be such a big boy. I couldn't believe it when I came in yesterday and saw him without his tube!! The hospital didn't even call me, I just got there and was signing in and the nurse said "Oh, you know the extubated him right?" I was a little disappointed I didn't get to be there, but how exciting! I called Danny, who was on his way, and let him know. I couldn't get back there fast enough to see him and I couldn't stop smiling all day.
Gramma brought some pie for the nurses to celebrate getting his tube out and him being 8 weeks old. Just this weekend he has graduated from his z-flo mattress, started wearing clothes, and he got extubated and is on CPAP!  Cohen is still doing well on his CPAP although they did have to increase the amount of pressure going into his lungs. The CPAP he wears is just like an adult CPAP, it covers his nose and keeps a constant pressure going in at all times. He also still gets oxygen through it, but unlike on the ventilator he has to do all of the breathing by himself. So he has to work a little harder than on his ventilator but he seems to be tolerating it okay. I got to hold him today for a little bit and then he decided it was too much work being held and went back into his isolette. I am loving having a few little clothes that fit him! :) It's still too hard to get regular preemie clothes on him, but the ones that are specially made for extra small preemies work well. I know i might be a little biased, but he looks so cute in his big boy clothes.

 
I love getting to hear him cry and see his whole face. This might sound weird, but he seems more like a "real" baby now. I know he's always been a real baby, but it's just so different when you can only touch and hold your baby sometimes, not whenever you want. For the first 8 weeks of his life I never got to hear him cry, hiccup or make any noises. It's hard to feel like you are really a mom when you can't hold your baby whenever you want. I can't feed him and I can only change his diaper every four hours. I am so thankful for the NICU and all the nurses, but it's just so different then if he had been a full term baby that we got to take home and take care of on our own. But, we are getting there! Slowly but surely.

 He looks like he is wearing a scuba mask or is a surgeon with his CPAP headgear on. The nurses take his CPAP off every four hours when he has his cares to give his face and head a little break. Today was the first time that I really got to see him up close and see that he does look a lot like Carter's pictures. Even though Cohen is older now, they definitely look alike. Here he is!!! The orange tube is his feeding tube. He has a little sticker on his nose so that his CPAP doesn't break down his skin.

He looks a little worried about having his mask off :) There's a weird glare on him because I took it through his isolette. He also doesn't know how to close his mouth yet because he's used to having a tube there!

Look Ma, NO TUBE!!!!

Yahoo!!! Cohen got extubated this morning and is doing well on his CPAP. Please pray that he is able to keep up his breathing and doesn't get tired out and have to get his tube back. We got to see his whole face for the first time when they took his little mask off AND I got to hear him cry!!! It was probably the best sound in the whole world :) His CPAP actually covers up him a little more but next time they take his mask off I will try to take a picture of his face!

Big Boy!

I am so, SO, SO glad to be feeling better and back in Seattle! While it was nice to be at home with Danny for more than a day, it was so hard for me not to be here at the hospital. I just missed my little guy so much. Although I'm sure he enjoyed his little break from getting his picture taken constantly. He is starting to look more grown up and like a "real" baby and not just a wrinkly old man (a cute one). 
We got some of the most adorable clothes from a family friend and I couldn't wait to get my hands on Cohen again so we could try them on. The smallest outfit was a little shirt with farm animals on it. I got it on Cohen but it wouldn't velcro closed in the front because his stomach is so big!! So we decided to put it on backwards :) Tomorrow we will try the next size up and see how that goes. I never thought Cohen would have clothes that were too small!! Thanks for the little clothes Honcoops, we love them! That big blue thing on Cohen in his pictures is his starfish. It's kind of like a bean bag, the weight of it makes them feel more contained like if I had my hands on him. And, just for fun, here is Cohen's little shirt air drying on Dad's shirt.

 

Cohen trying to wear his shirt...he looks like he belongs at the beach being a surfer dude or something!

 The Drs are hoping to extubate Cohen within the next few days. He had to go back up a little on one of his settings, but he is getting closer. The Dr came by and I got a chance to talk with him a little bit. He said that they want to make sure he is really ready because they want to limit the number of failed extubations, where they take his tube out and he can't quite do it on his own and they have to reintubate him. The more times this happens it can cause scar tissue in his throat, so we don't want that either. Cohen also got moved out of his z-flo (His squishy mattress) and is now just on his regular mattress. They swaddled him and still put some little blanket rolls around him so he still feels tucked in. His temperatures will get high sometimes and they think it's because he gets all nice and tucked in to his z-flo and gets too warm now that he has "a little layer of fat" now. His room also has windows on one side and the sun shines right on them and when its warm out that room gets hot! So they think this will help him control his temperatures a little better without making him too hot.

 
We also got a little visit from some church friends (thanks for stopping by :) And I got a phone call from my OB in Bellingham checking up on Cohen and I to see how we are doing...I haven't seen her since early on in my pregnancy because at BOGA you see all the Drs, not just one.  But she calls once in awhile to see how we are doing, she is so great. It was kind of a busy day, but I am so glad that I am feeling better and got to come back to see Cohen. Please pray that Danny gets better quickly so he can come join us and also that Cohen will keep getting bigger and stronger because he is so close to getting that tube out!

Gramma to the Rescue!

It's terrible not getting to see Cohen!!! I haven't seen him since Saturday - we are going on 5 days! My mom went down to check on him today (she can't take not seeing him either!). And the nurse even let Gramma change his diaper!! She was thrilled...Don't worry Mom, you can change his diapers ANY time :) I have been getting many updates, pictures and videos of the little mighty man.
Drs are still talking extubation but are trying to go slowly and make sure he is ready. They switched the mode of his ventilator to one that is more of a weaning mode. Will talk about extubating again tomorrow...one of these days he will get that tube out! He is up to 2 lbs 14 oz and is getting 6.9 mL of food/hr. He has had a good day with his ventilator changes. I plan on going tomorrow  because I am feeling quite a bit better today. Happy 33 weeks little buddy!

Wednesday Updates

So far, today has been a little bit better of a day. I am feeling a little bit better, however now Danny has a sore throat :( We went in to the funeral home this morning to talk about what we wanted for Carter's headstone. We have made almost all of the decisions so as soon as we work out a few details then it will be all ready to go, although it does take a few months for it to be made. While it wasn't an easy process, I don't think anyone ever plans on having to pick out a headstone for their baby, we are glad to have made some decisions about it. I had said something yesterday about being stressed out because I wanted it to be perfect. I am happy with the things we have picked out and designed and I think it will convey everything that we want it to.

I was looking at some pictures last night that my sister had taken the night the boys were born. I knew she had taken some but I hadn't seen them yet. I remember her taking a few pictures but I was pleased to see that there were actually quite a few that I didn't remember her taking(Thanks Karen!). While I was glad to see these pictures, I kept thinking to myself that the pictures seemed different than how I remember him looking. In the pictures, it is quite obvious that he was a very sick baby. In my mind I don't remember him looking sick. Maybe it's just how I want to remember him, but in that moment when I was with him, I just remember him looking so perfect. And maybe that's how I will choose to keep remembering him :)

And a quick Cohen update...they weaned his ventilator settings last night and he did really well for the most part. His ventilator is set to give him a certain number of breaths per minute. He can over breathe the machine and take as many as he wants, but he is guaranteed a certain number set by the ventilator. His rate was set at 35 and they turned him down to a rate of 20 and also decreased the amount of pressure the machine is giving him to keep his lungs open. He had a good blood gas last night and the nurse mentioned the "extubate" word again (taking his breathing tube out). However, he decided to get nice and comfy and go to sleep and forget to breathe so he had a little episode where his heart rate and oxygen saturation when down. They are going to start him on caffeine which should help with his apnea (when he forgets to breathe). So, no extubation today but hopefully soon! He weighed 2 lbs and 13 oz as of a few days ago...he is getting to be such a big boy. I can't wait to see him again, hopefully soon! We are sending Gramma down tomorrow to check on him and see how he's doing since we can't be there.

Oh, and the insurance stuff is worked out for now! It turns out that neither of our insurance companies will cover Cohen since he would have double coverage with his DSHS (Sigh, why didn't anyone tell us that in the beginning!?) But, at least is covered for now and we are done with that mess!

Please pray that Danny and I will both feel better quickly so we can get back down to Seattle by this weekend. We are anxious to have Cohen be off the ventilator, but we also don't want it to be a rushed thing so please pray that he will continue to get stronger and when they do decide it's time that he will do well with it (some babies are extubated, breathe on their own for a little while and then have to get their breathing tubes back).

I don't have any new pictures of the little fellow still, but Sunday we went to a BBQ at my brother's house. The one sunny day of the summer! So here are a few pictures of our time with my family. The little kids (and some big kids) enjoyed some time running down the hill in the yard and jumping into the pool.

Pity Party

I threw a little pity party for myself today because I was just so overwhelmed with everything going on. I had to say many prayers for extra patience and grace for me and the people I came into contact with today. I hate not getting to see Cohen (he's doing fine). I am used to spending the majority of almost every day with him so it's really hard for me to only get phone updates.

I have been feeling fairly miserable physically, and since I am losing my insurance at the end of this week I decided to go into my doctor here in Lynden to see if I could get some antibiotics just in case. I called in in the morning and my doctor had an appt for an hour from when I called. So, I hurried to get ready and was walking out the door reached over to grab my keys. Except all that was on them was the mail key. At this point my appointment was in 15 minutes. I contemplated riding my bike in the rain, while sick, to the doctor's office but decided that probably wasn't a great idea. I called my sister who happened to be heading to the library so she picked me up and dropped me off at the doctor's (thanks Karen!!) Sure enough, I have a sinus infection. I haven't seen my doctor in about 3 years so he asked me what was going on. I told him that I had twins, one was in the NICU and his brother had died, so I needed to get better quickly so I could get back to seeing him. And that my insurance was running out and I didn't want this to turn into anything bad but that I have a history of getting sinus infections whenever I get sick. He gave me my antibiotics so hopefully I will start feeling better soon!

Also, my house was a disaster and I was just too tired to do anything about it. Neither of us are really here enough to clean it. Danny is either at work, sleeping, or driving to Seattle to see us. I don't like having a messy house and I was really kind of just looking forward to doing something "normal" like cleaning, but I just didn't feel up to it.

If that wasn't enough, I have spent the last few days on the phone with (seriously): Danny's HR, my HR, the broker who handles the insurance at my work, 2 social workers, a public health nurse, the lady who deals with the insurance in the NICU, the actual insurance company, and the case manager through our insurance. But the sort of good news is I think we have finally figured it out for now, although in the end, we really only have one option.

And, on top of that, we have been wanting to go in and pick out Carter's headstone. How do you decide what you want your son's headstone to look like? Shouldn't he be picking out yours? These things really aren't covered in the handbook to life. We have had to put it off for a little while, mostly unintentionally because Danny and I are rarely up here together on a weekday. But, I think it's time because we want him to have one. Because he deserves it. Even though he was only here for such a short time, he was our baby and we love him so much. It may seem like a weird thing to be worried about, but I want it to be perfect. I want people to know how much we loved him. It seems like we should be able to fit all of our feelings about him onto one stone. A stone that will mark his place forever. Anyway, we went in to the funeral home but they were closing so we will go back in tomorrow morning.

So, as I was laying in my bed feeling sorry for myself, I texted my wonderful mom. She came over and cleaned some of the house, brought me a sandwich, threw in some laundry, and went to pick up my prescription. Thanks Mom, I don't know what I would ever do without you! Once again, I am so thankful to all the people who have been supporting us through all this. We really, really appreciate it. It hasn't been easy, but you help make our journey a little easier. I know the Lord is here to help carry our burdens and he does that through so many of you. I have to be honest and say that I wasn't so great about letting him help today. It was more like I was throwing things out at him that I didn't want to deal with (insurance!) and trying to keep control of some of the other things. My attitude may not have been exactly pleasing or pleasant. But, I know that he meets me where I am at and also that he forgives me for being a crab (thank goodness!)

And because no post is complete without a picture of our little man, here he is in his green hat that Gramma made him. This picture was from last week as Cohen hasn't had his picture taken since Sunday!! He probably doesn't know what's going on!

Sick Day

I came home yesterday afternoon with Danny. I had planned on going back today, but since I have this cold I decided just to stay home since I can't go to the hospital anyway. I have been calling a thousand few times a day to check on Cohen. He is doing fine, the Drs are going to talk to his friends in Infectious Disease (ID) to see if they should treat his bacteria or not. Yesterday I was talking to his nurse on the phone who said "You know, this bacteria really isn't one we see in here very often"...What a surprise! :) They haven't sounded too concerned about it because Cohen isn't acting sick. They are keeping a really close eye on him and if anything changes with him then they would be more aggressive about treating it. Since it was a slow growing bug (the culture was from the 20th), his Drs think he would have been sick already if it was going to affect him. I think Cohen should get a discount on his hospital stay for providing the doctors and residents all these wonderful learning opportunities of "things they don't see very often/ever".

We are STILL trying to figure out all of our insurance stuff. We seem to be hitting a lot of brick walls. I guess it's a good thing I have been at home sick because I spent all day Friday morning and all morning today trying to make phone calls to figure this stuff out between my insurance, Danny's insurance, and the social worker about the state insurance. Ugh. We are trying to be responsible and not just rely on the state insurance (which only lasts 6 months to a year anyway), but the COBRA from my insurance is pricey and Danny's insurance says they don't cover someone who has secondary insurance. It's a mess...

And, just a little story so you know the state of our lives lately. We came home yesterday afternoon and both  had to use the bathroom after our 2 hour drive. I was heading into the bathroom while Danny yelled from the other bathroom that we had no toilet paper. Anywhere. In the entire house. We also had no kleenexes. Anywhere. In the entire house. Not one square. I texted my sister and drove over to her house. They were gone and all the doors were locked. Not even a screen door open! So then, I drove down the street to my brother's house (the joys of living within 5 minutes of your entire family), knocked, ran in and yelled to see if anybody was home as I was running to their bathroom. I didn't get a response so I figured they must be gone too. While I was in there, I also grabbed one of their extra rolls to take home. When I opened the door my nephew was standing in the hallway looking at me like I was crazy coming out of his bathroom and holding a roll of toilet paper to take home. We later went over to their house for a BBQ and my sister in law sent us home with 2 more rolls AND a box of kleenex. Thank goodness for family! :) Our lives have been a little crazy lately. Sometimes you just have to find something to laugh at and this was it for me. And, sometimes you just have to take a sick day and lay on the couch with your kitty and try to take a little break from the cleaning, the bills, and everything else that needs to get done. Which I will hopefully get to do later today.

I am so thankful for this cute little boy. He always makes me feel better! Here are two videos of Cohen and his binky, because I couldn't decide which one was cuter. (There is a weird glare on him because I was taking them from the outside of his isolette)