Sunday, July 31, 2011

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!

Saturday, July 30, 2011

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!

Friday, July 29, 2011

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!

Thursday, July 28, 2011

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, July 27, 2011

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.





Tuesday, July 26, 2011

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!

Monday, July 25, 2011

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)
video video

Sunday, July 24, 2011

Day 49

Cohen has had a quiet last few days. He has done really well since his big scare. Cohen is considered a "big baby" to be on a ventilator and he is starting to show that a little more. He isn't having as many of his episodes where he drops his heart rate and oxygen but he does still do that when he gets turned or bugged. He clamps down on his tube so he doesn't get any oxygen which makes the above happen. He is also starting to move his head around quite a bit and he can get his little hands around the tube and pull on it a little which loosens the tape holding his tube in. Hopefully these are signs that he is getting stronger and will be able to have the tube out soon. Please pray that he doesn't pull the tube out himself and stress out his mom and dad! :) Cohen has also been sucking on his fingers and so the nurses gave him back his little tiny binky. He tries really hard to hold on to it and when it falls out he gets a little mad. Oh, and Cohen weighs 2 lbs and 10 oz! He has gained over a pound since he was born!

I had been planning on going home today with Danny to sleep in my own bed and get a few things done around the house. I went to bed yesterday with a little bit of a sore throat and sure enough this morning...I have a cold. So, I guess it's a good time to go home and rest because I can't go in and see Cohen when I am sick. I don't get sick very often but when I do it's not uncommon for me to end up with a sinus infection or bronchitis. So please pray that this doesn't hang on and that I can get rid of it quickly so I can be back up with Cohen! I am used to being there all day every day pretty much so it's going to be hard for me to not get to see my baby. I have a video of him with his binky but the internet here is so slow I can't get it to upload, so I will try and put it up later because it's pretty cute.

Update: Right after I posted this, I called Danny at the NICU for the Cohen update. I guess he has some kind of bacteria growing in one of his cultures that they took from his breathing tube. He is back in isolation and they are trying to decide what medicines to put him on to treat him :( Please pray that he gets rid of whatever this is quickly and that it doesn't set him back anymore.

Thursday, July 21, 2011

A Lengthy Update & "The Event"

Well, that last post was fun. Thanks for introducing yourselves everyone, its fun to know who is out there. If you didn't say hi you can always feel free to do so anytime :) So, I think it's been a few days since I've given any updates on Cohen because we were waiting on a few things to be figured out. Cohen had to be moved out of his private suite for 2 days because they were doing a clean of his room (there are 6 rooms of babies total, each room has about 5 babies in it). So Cohen took a little trip over to another room and he is happy to say that he is now back in his own room and enjoying the peace and quiet!
I know I mentioned the other day that we had a rough night. I was doing kangaroo care with Cohen and I thought his breathing sounded funny so I had mentioned it to the nurse and she measured his tube to make sure it was in the right place and it was. All his vital signs were fine, so I just tried to be reassured. However, I kept feeling like something was funny with his breathing. As they went to move him back into his isolette his breathing tube came out. He obviously started having a lot of trouble with his breathing and was turning purple while he was on me. They quickly moved him into his isolette and called all the doctors in. At this point I left the room because I was starting to feel really anxious. I'm glad that I did because they had to do chest compressions on him because his heart rate dropped really, really low. They got his tube back in and got him stablized but it took a little bit. In the meantime, I was out in the hallway having my first panic attack :( I thought that my baby was going to die that night and I couldn't bear the thought of losing him. It was just too much for me. Eventually I settled down and went back in to see him when they said he was stable. He was just laying in his isolette looking up at me with the biggest eyes like "Hey, what on earth happened?" I am so thankful that they were able to get his tube back in fairly quickly, the response time for emergencies around there is very good! I am also so glad that my mom was there that night and that it wasn't one of the nights that I was alone. And, being the considerate little fellow that he is, he wanted to make sure that we knew he was okay...I was changing his diaper (he is going to love all these stories some day) and I had put the new diaper underneath the old one because it's too risky for him to have nothing underneath him and sure enough he pooped as I was taking his diaper off. He managed to wreck his old and new diaper as well as the little fabric cover on his bed. When Danny called this morning to check on him we found out that he had done the same thing AGAIN this morning! I guess that's one way to get new sheets!

The day after this happened, I wasn't quite sure what to expect out of Cohen. That's quite a big event for such a fragile little guy. But, he did great! I think one of the good (ha!) things about this was that it wasn't because of Cohen. It wasn't like that happened because his heart was sick or his lungs were too sick. It was just because his tube wasn't in the right place or the tape that holds it in place got too loose. He did seem to be a little sore and restless, but all of his ventilator settings were the same as the day before. They gave him some Tylenol and Morphine to help settle him down and let him sleep. A lot of time babies as small as him and get rib fractures after having chest compressions, but thankfully they didn't see any on the xrays, they thought maybe he was just a little sore.

Cohen had his echo on Monday and it showed that his PDA is still a moderate size. Our Dr for the week was very on the fence about whether he needed to have surgery or not. She had a pow-wow with several of the other doctors and they decided that at this point Cohen doesn't need to have surgery! Although his PDA could be causing some of his problems, they aren't convinced that it's causing enough problems to outweigh the risks of having surgery. And we don't want him to have surgery if he doesn't absolutely need it. The plan for now is to have him continue on his diuretics to keep the fluid out of his lungs. They are also going to restrict his fluid intake to try and make it easier on his heart. The more volume you have circulating in your body, the harder your heart has to work to pump it around, so they are hoping that by decreasing his fluids it will be less work for his heart.

Also, his last rash scab finally fell off so he stopped his antifungals today instead of having to take them for six weeks. Since he doesn't need his antifungals, he got to get his PICC line out!!! Cohen is IV free (for now anyway)!!! He also had a temperature the other night so they sent off cultures from his urine, secretions from his breathing tube, and a blood culture and started him on antibiotics. There was a little something growing in his urine so they kept him on the antibiotics but today they decided that it was nothing so he got to stop those too. The only medicines he is getting are through his feeding tube. He is still loving his food and is up to 6.5 mL/hr. He weighed 2 lbs and 7 oz yesterday, almost up a whole pound from when he was born! Other than his big event, and considering his big event, he is doing pretty well. The doctors are happy to let him keep his ventilator a little longer in hopes that he will continue to grow and let his lungs heal and his body try and close his PDA. Our little guy is a trooper that's for sure!
In other news, we qualify for housing assistance through the state so I called them the other day to try and help us out. I thought maybe they would just pay for some of our housing costs, but it turns out they cover all of the cost of the room where we stay! The organization has certain hotels that they are contracted with and it turns out that they are all full and there are no open rooms available. So, after making phone calls all morning, the lady called me back and asked if we were okay with staying at the Collegiana (where we are now) for the rest of our stay here! So I don't think we will have to move at all until we get to go home. This is a huge blessing as we already have our stuff here and we are familiar with this place, it is within walking distance for me, and I can take the shuttle bus. This was a huge answer to prayer! We hadn't prayed specifically for this, but after it all happened it was just a reminder that God is watching out for us and he knows our needs. Sometimes, it is hard to know what to pray and I think this just reminded me that God honors the fact that we are praying, even if we don't know what to say or even what our needs are, that he does know. We are still trying to figure out our insurance mess, but hopefully that will get resolved soon too.
The blue hat in the picture above was one my mom knitted for him and he wanted to try it on today. I have been a little hesitant to do kangaroo care since the big event, but today I was brave and decided to go for it. So I picked out which hat he wanted to wear (he is getting a little collection of them) and got in my recliner chair. He got moved over to me and he did great the whole time! We had these little tiny socks that we thought might fit him. They actually fit his feet lengthwise, but were a little big otherwise. It was still pretty cute though.
I wrote earlier about how his Dr and I had been talking about "waiting for the other shoe to drop". I feel like him having his tube come out and having to get chest compressions was maybe the other shoe dropping. As terrifying as it was at the time, I almost feel better now. Like now I can move on from feeling like terrible things are going to happen to him. He essentially faced death and God brought him through it. I read these verses in Psalms while I was pregnant and we were told that our babies might not make it. I reread them again the other day after everything that happened with Cohen.

"The cords of death entangled me; the torrents of destruction overwhelmed me; the snares of death confronted me. In my distress I called to the Lord; I cried to my God for help. From his temple he heard my voice; my cry came before him, into his ears...He reached down from on high and took hold of me; he drew me out of deep waters. He rescued me from my powerful enemy, from my foes, who were too strong for me. They confronted me in the day of my disaster, but the Lord was my support. He brought me out into a spacious place; he rescued me because he delighted in me"
Psalm 18:4-6, 16-19

We have faced death, more than once. We have experienced death. While I was pregnant, it was hard for me not to get brought down and stuck in a place where I was so worried about losing my babies. I was worried about it, but I just had to trust that God would bring us through whatever happened. And he did. After we did lose Carter, the first weeks were so hard. I felt myself getting angry and wondering why this had to happen to us. I feel like these verses just describe where I was at and how God has reached down and rescued me. I still grieve and I still get sad, and sometimes I still question...but I know that God isn't going to leave me there. He will meet me there and draw me out, and I am so thankful for that!

Tuesday, July 19, 2011

Who are You?

We had a really rough night last night. I'm still processing but maybe I will write about it later. For today, I need to have a little fun so I want to know who is out there reading! I have only been out in public where I know people a few times, but I have had several people come up to me and tell me that they read the blog. This blog has been a really good way for us to keep people updated and it also helps us process and remember the things we are going through. We really appreciate all the prayers and support, I think it has made this extremely hard time a little easier knowing that we have people willing to help us in many ways and going to the Lord on our behalf. We are so thankful for all of your prayers and thoughts, please keep them up! So anyway, we would love to know who you are and how you got here! :)

Sunday, July 17, 2011

Echo Tomorrow

Cohen has kind of a big week coming up as he gets his echo tomorrow which will determine kind of what the next steps are for him. I had a kind of a rough day today because as they were getting Cohen out of his isolette to put him on me for kangaroo care he dropped really low in his oxygen and his heart rate and it really scared me. He's done this before but not usually that low for that long and I've never been holding him when it has happened. Also, his Dr came by and we talked for a little bit about Cohen and his progress. Lately, I've been feeling a little bit like he really isn't making very much progress and I wanted him to be getting better faster. She reminded us that first of all he was born really early and that second he has had to deal with all the things that come along with the twin to twin transfusion. She told us to think about where he was last week and four weeks ago. And he really has come a long way when we thought about it like that. She helped us put things into perspective a little. Sometimes I think I get so focused on the little details that I forget about the big picture. They would like for him to be off the ventilator but he has been dealing with so many other things like his rash, his premature lungs, his poor kidney function, his PDA etc. He is also a "wimpy white boy" as they call them...statistically, white boys make the slowest progress in their lung function and getting off the ventilator. So, he may spend more time on the ventilator just growing and getting stronger.

As I was asking the Dr questions about Cohen and his care, she said that she felt like I was "waiting for the other shoe to drop", which I didn't quite realize. I guess it's just been hard to see our baby struggling and not be reminded of the fact that we have already lost one baby. We are hoping and praying that things turn out well for Cohen and that he grows to be big and strong and we look forward to the day we get to take him home. But, at the same time, we have had so many problems with the whole pregnancy and delivery and losing Carter that sometimes it just feels like we are waiting for whatever is going to happen next. We know this is all out of our control and in God's hands. I try and remind myself that there isn't anyone better to be in control than the God of the universe. Please pray that I don't lose sight of that and that I can put all of my trust in Him to take care of Cohen, Danny and I. Also, please pray for Cohen tomorrow as he gets his echo. We are really praying that his PDA will look smaller so that he might not have to have surgery. Also, please continue to pray for his lungs that they will continue to improve and he will grow lots of new lung tissue to help his breathing.

Cohen was really awake for quite awhile today. He had his eyes wide open and he was just looking around. We would put his blankets back over his isolette thinking that then maybe he would go to sleep, but then we would peek in and he would still be wide awake. Danny was reading him a story and he just sat there with his eyes open, listening. It was pretty cute. We are hoping that after his echo tomorrow and the Drs all getting together with the infectious disease people they can start to establish more of a plan for him based on the information they get.

Saturday, July 16, 2011

Daddy's First Diaper Change!

Yesterday I finally convinced Danny to change Cohen's diaper. I had asked him before if he wanted to and he didn't because he had so many wires and things. But, he finally decided to try it. It was really cute and Cohen behaved well for him...although he has peed on me way more times than Danny so he has some catching up to do. I think he was trying to be nice since it was his Daddy's first time changing a diaper.

The plan for the last couple and next few days hasn't changed much. Cohen is pretty much just hanging out on his ventilator settings. His blood gases and been good and his chest xray looks okay. On Monday he has getting another echo to check his heart and then the drs will talk to the infectious disease people to check on his rash. They are still trying to decide if he will be on his antifungal meds for 4 weeks or 6 weeks. Probably the next step for Cohen will be surgery to fix his PDA. Although his Mom and Dad are praying and praying that it will close on its own and he won't have to have surgery. When the nurses listen, sometimes they hear it and sometimes they don't. It could be trying to close on its own which would be so great!

Thursday, July 14, 2011

31 Weeks

The boys would have just now been 31 weeks today. As the weeks go by, I am just amazed that I should have been pregnant for probably about another 6 weeks at least. I am missing Carter a lot today. I'm not sure if I have mentioned this before (this is why I have the blog because I have trouble remembering anything these days!), but we had someone from Now I Lay Me Down to Sleep come and take pictures of Carter. This is an awesome organization that has local professional photographers that will come to the hospital and take pictures of babies that have died. We are so, so thankful to have pictures of our sweet baby boy and we look at them often. The only thing that I wished we could have gotten was a picture of our boys together, but we weren't able to do that. Or I would even settle for just having seen them together. I will certainly look forward to that day in heaven when I can see my boys together again!

Mr. Cohen has had a few quiet days. He is mostly getting left alone. He was supposed to get an eye exam yesterday but they have put it off for a little while to just let him rest. After 4 pokes, he got an IV in so that he can get a blood transfusion again today. Cohen has also officially been labeled a "chronic lung disease" baby. We had heard this before in the past but they decided that he will now be treated as a baby who has chronic lung disease. Because he was born so young, his lungs didn't have a chance to fully develop and so the ventilator that he is on with the oxygen causes some damage to his lung tissue. In time, he may outgrow it but may have some long term lung issues like asthma. The Dr told us that Cohen will probably have to go home on oxygen and possibly he will continue long term on the diuretics which help to keep the fluid out of his lungs. He will also have another echo on Monday to look at his PDA and to see where they are going to go with that.

Please pray for us as we work to figure out all our insurance issues as I am not currently working and lose my insurance at the end of this month. We are hoping to be able to get Cohen and I on Danny's insurance as soon as we can. We aren't sure if they will put us on for August or if we will have to wait until open enrollment. Cohen also qualifies for state insurance because he is a micropreemie so we are also trying to work that out, its kind of an additional insurance on top of regular insurance.  It's basically a mess, so hopefully we can figure it all out fairly quickly. Also, Cohen had a high temperature last night but hopefully it was an isolated event. His nurse doesn't seem to think he is sick because he isn't acting like he is, so please continue to pray that he doesn't get any more infections. He is so susceptible to everything and has no immune system and can get infections really easily.

Wednesday, July 13, 2011

Praise You in this Storm


Praise You in This Storm
words by Mark Hall/music by Mark Hall and Bernie Herms

I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

I remember when I stumbled in the wind
You heard my cry to You
and raised me up again
my strength is almost gone how can I carry on
if I can't find You
and as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away

I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth


I know this song isn't a new song, but it has been one of the songs that keeps coming into my mind throughout the day. And "Praise you in this Storm" seems to be one of the themes that keeps coming up in our journey. We have been learning to praise and be thankful to the Lord even during one of the hardest times of our lives. Even though we are experiencing pain and sadness, there are still things that we can be thankful for. We are thankful for Cohen, for all the support we have received, and we are thankful that we can trust in God and lean on him through this. We are thankful that Carter is in heaven where he is free from pain and he gets to be with Jesus. We are thankful that we will see him again someday!

The other thing I have been learning is that all of this going on doesn't change who God is. It doesn't change his promises and it doesn't change who I am in Him. God is still God. He is still good, kind, and compassionate. He still loves me and hurts with me. He still wants to know all my thoughts, even if they are ones of sadness and sorrow. He still wants me to trust, more now than ever, in his plan for my life, Danny's life, and Cohen's life. While we may be changing, learning, and growing, He is the same.

And for a change of scenery, here's my family last Christmas. Thanks for everything guys!


 Here we are last summer enjoying the nice August weather on a hike...we are sort of glad it hasn't been that nice since we spend most of our time inside (sorry!).



And our kitty Russell, who is now enjoying his own mostly empty house...if only we could get him to make the house payment!

Tuesday, July 12, 2011

Kicked Out of the Club

Well, our little man doesn't like to be pushed into anything he doesn't want to do. With the steroids they wanted to get him off the ventilator and he was so close but decided he wasn't ready. Last night they tried to wean his settings again but he wasn't very happy and had a bad blood gas so they turned him back up. Today, his oxygen and heart rate have been all over the place. He will be really high and then drop really low. Now, this afternoon, his blood gas was really good so they turned him down again. We'll see if he decides that the change is acceptable. In rounds this morning the Dr said that Cohen is pretty much right where they expect him to be for how early he was born and how old he is, they are hoping to get him off the ventilator within a week or two. He was started on diuretics today so that hopefully he can get rid of some of the fluid in his lungs. If they can't get him off the ventilator it will be back to the idea of surgery for his PDA, which they have been talking about for some time but no one will touch him until his rash is ALL the way gone. While Mr Cohen joined the 1000 gram club yesterday (and got a sign from his nurses!), he had a big poop last night and has now been kicked out of the club as he weighed less than 1000 today.

I was taking pictures of him today because I feel like he changes every day and looks a little more grown up. After a few pictures (ok maybe more like 20) he threw his arm across his face and I took that as a sign that he was done with me :) People that have seen him say that it's hard to know how small he is in the pictures so I tried to put him next to something that would help put it in perspective. So here he is with his thermometer and a bulb syringe. Hopefully that helps a little.

Monday, July 11, 2011

1000 Grams

This weekend our friends Ryan and Tiffany got married up at Semiahmoo. I went up north for the wedding because I wanted to help our friends celebrate and Danny was the best man in the wedding. I wasn't sure how it would go and it didn't go as well as I had hoped and we left a little early, but I went. I was nervous about being around so many people and also seeing people that I hadn't seen yet since this all happened. I was anxious about how my emotions would do. As I sat there listening to the excited bride and groom saying their vows I thought about my own wedding. I thought about how we said similar words, that we would take each other "for better or for worse...in times of sorrow and times of joy". Of course on your wedding day you are thinking about how excited you are for all the good things that are to come, you don't think about the times of grief and sorrow that could come. But, I realized now even more how important those vows are. We never imagined ourselves in the situation we are in, no one ever does. I am so thankful for Danny, I could never do this without him. He truly is my best friend and I am so glad I married him. He is the only one who knows what I am going through and I know what he is going through. He knows my grief and my sorrow. And he just lets me be. He holds my hand, hugs me tight, and he comforts me like no one else can. I am so glad that God has his own plans for our lives and I am so glad that Danny was part of his plan for me.

The other thing I  have come to realize is that it hurts when people don't ask about Carter and Cohen or at least acknowledge it. I know there is a time and a place for these things and that people don't necessarily always know what to say. But it hurts me more to have people pretend like nothing happened than it does to talk about the boys, especially Carter. I know its not an intentional thing, but it makes me feel like his life wasn't important. And he was important, he was here, even if it was only for a short time. So, please ask about my babies. I will talk about them all day :) I will tell you that Carter was perfect in every way. That he, like his brother, had his dad's long fingers and toes. That he had a cute little nose and a little bit of dark hair. I will tell you that I got to hold him and kiss him and put a little hat on him. I got to show him off to my mom, sister, and dad. And that I had to say goodbye to him, knowing that when they took him I would never see him again until I get to heaven. If you ask about them, its true that I might cry or be a little bit sad. But it means so much to me. And even if you don't ask questions about them, even just acknowledging them makes me happier than pretending like nothing happened. I think any mom that has lost a child will probably tell you the same thing. I never would have known these things if I hadn't been through it. So, just keep it in mind next time you see someone who has lost a baby. It means the world to moms if they get to talk about their babies, even if they aren't here.

And, on a lighter note...one of our favorite nurses took some pictures of Cohen while we were gone. He was all dressed up and wanting to go to the wedding. Maybe next time, little buddy! Who do you think he looks like??
And here he is in his cute little green hat having some kangaroo care time. This little guy has joined the 1000 grams club!!! Today he broke 1000 weighing in at 1003 - 2 lbs 3 oz! He is up to 5.8 mL/hour of his breastmilk.
 

Saturday, July 9, 2011

Funny Faces

Cohen had his eyes wide open this morning and I was trying to take his picture and he just wasn't terribly thrilled. The nurse calls his angry face his "steroid rage" face...it can make them a little cranky. He did cooperate for a few...

Friday, July 8, 2011

Strong Man

Today is Cohen's third day of steroids. Some babies respond right away to the steroids. Cohen took a little longer, but he always does things in his own way and time. He is enjoying them very much and has made some progress. His lungs are now more open, the doctor listened to him and said she could actually hear air moving now instead of just squeaking. His ventilator settings are pretty low and they said the "extubate" word (take out his breathing tube). They decided against this today because they still want to see his lungs a little more expanded. He has been having a lot of junk in his lungs that they have been suctioning out. They sent some for a culture and had originally told us it was growing some kind of bacteria. This afternoon they came in and said that it was just normal bacteria that everybody has in their mouth! So that's a good thing, its nothing he needs to be treated for. He has been much happier off of his oscillating ventilator and behaving nicely. They said maybe tomorrow they might try and take his tube out depending on what happens with his lungs, he will get an xray in the morning. Cohen's back looks way, way better and he only has a few little spots left. Hopefully in the next few days it will be gone!
He is becoming quite the little acrobatic strong man...I have looked into his isolette a few times and he will stretch out his legs and somehow lift the entire lower half of his body into the air. I should try and get it on video because it's quite impressive. We have been able to do more kangaroo care, which we always enjoy. Yesterday, Cohen peed on me twice (through his diaper!) while I was holding  him...I have a feeling it probably won't be the last time either.

Wednesday, July 6, 2011

31 Days

Cohen had his echo yesterday and the results came back today and...his PDA is a little smaller!!! Yay! I asked the doctor if the PDA actually gets smaller or if he gets bigger but I don't know if they really know. What they do is actually measure the amount of force going through the opening. So if it's a big PDA then the blood flows slower and if the hole is smaller the it goes through faster with more force, and that's how they can tell how big it is, some kind of physics thing :) But anyway, its a little smaller so he started his steroids this afternoon. We are praying that these will give him the little boost he needs to make some progress. We also got to get some snuggle time in since he is back on his regular ventilator. And also, Cohen reached a whopping 2 lbs today!!! Some of it may be from the fluid he has in his lungs but for today, he has reached 2 lbs. He is also up to 5.3 mL an hour on his tube feedings.

I was sitting out in the lobby this morning and there was a bunch of people waiting for a tour of labor and delivery. One of the girls said she was 29 weeks along, which is where I would have been with Carter and Cohen. The lady in charge came and asked me if I was there for the tour and I told her that I had a baby in the NICU and I didn't quite make it to the "touring" stage. I got my tour up close when I was admitted to the hospital. Sometimes I think about how I missed out on the normal parts of pregnancy. I didn't get to go to my baby showers. I didn't tour labor and delivery. I didn't get to see my babies or hear them cry when they were born. I didn't have visitors after the babies were born. There were no flowers or balloons. Sometimes I am sad that I missed out on all those things, but then I remember how thankful I am just to have Cohen here, and although it would have been nice, those things aren't important.  I would do it all again in a heartbeat.

Tuesday, July 5, 2011

One Month Birthday!

Today Cohen is officially one month old! Just like last week, I can't believe it! He has come so far through so many things and we are so proud of him. This morning they decided to switch him back to his regular ventilator. While the oscillator was doing what they wanted, opening up his lungs more, he just really wasn't tolerating it well at all. The night nurse had to give him several doses of morphine to settle him down because he was really fighting the ventilator. He was up to 90% on his oxygen which is way higher than he has been. He also wasn't tolerating being moved or touched at all, he would drop his heart rate and oxygen pretty significantly. So this morning they made the switch back and right now he is on 40% oxygen and his blood gases are good! One of his favorite nicu nurses has him today and she fought to get him back on this ventilator which he seems to be doing much better on. While he still drops his heart rate or oxygen occasionally (mostly when he's getting suctioned) he is tolerating being handled a little better.

Since it is his one month birthday we decided to have a little celebration. I had left the hospital to get some lunch and stopped at Starbucks and found some cake pops. So I brought one back for his nurses and one for me/him. He even got a (paper) candle! The secretary also made him a little birthday sign for his door. Here's a few pictures from today...and our first family picture from the other day. Happy Birthday little man. We are so, so thankful for you!!!

 

Monday, July 4, 2011

4th of July

Happy 4th of July! I am spending my first night alone here in Seattle. We went up to Lynden yesterday for a BBQ at my sister Karen's house. That was kind of my first time being around more than just one person at a time other than my family. It wasn't too bad because I didn't know a lot of the people but I got to be exposed to a little crowd without actually having to participate too much. We were going to go back to watch the fireworks but we were both just too tired. It was really nice to stay in my own bed, but still really hard to leave Cohen. Today Dad and Danny brought me down and stayed for most of the day to visit Cohen and then went home because they both work tomorrow.

Today was kind of a rough day for me. It was one of those "one minute at a time" days. Cohen has hit the point where he's not getting any better. Yesterday they switched out his breathing tube because the air leak was quite significant so they took out the one he had and put in a bigger one. However, they didn't get the results that they were hoping for and he was switched back to the oscillating shaker ventilator again today. His lungs were collapsed quite a bit and they really want to open them up so that he can breathe better and make a little more progress. His blood gases today haven't been great, but they are starting to get a little better. I called his nurse this evening and she said he was fighting the ventilator so they ended up having to sedate him :( He will have another echo tomorrow to check on his PDA. At this point, there isn't much they can do to fix it if it is causing problems. He has a new attending Dr this week so the plans always change a little when he gets a new doctor. This doctor doesn't feel like the risks of giving him the medicine to close his PDA outweigh the benefits. She said his kidneys are getting better but she doesn't want to cause more damage giving him a medication that most likely won't work. And, they still won't do surgery until his rash is completely gone. It's definitely getting better, but not gone yet. The idea of steroids is still being tossed around because he has a lot of inflammation and fluid in his lungs and those would help settle that down.

The one good piece of news that we got today was that the doctor said Cohen was handling his feeds like a rockstar. Most preemie babies have some sort of issues with their feeds but our boy likes his food! We were told that he can actually outgrow a lot of his problems like his lungs and his PDA so they are really trying to make sure he is gaining weight. He is getting breastmilk mixed with some powder to give him extra calories and protein. Right now he is getting 4.9 mL per hour and today he weighs 1 lb and 14 oz! His doctor was explaining to us today that as he continues to grow, the PDA stays the same size or even gets smaller and then doesn't cause as many problems. I guess in my mind I was thinking that the PDA kind of grew with him but I hadn't thought about him outgrowing it, so this is a little bit of good news I guess.

I read this the other day and it of course the timing of it was right on. This is from my "Jesus Calling" book..."Discipline your thoughts to trust me as I work my ways in your life. Pray about everything; then, leave outcomes up to Me. Do not fear my will, for through it I accomplish what is best for you."

This is something that I have been struggling with lately...being afraid of God's will for us. I know he doesn't want bad things to happen, but he allows them to. It's part of living in a world of sin that bad things happen. Losing Carter was the hardest thing that has ever happened to us and there is this fear in the back of my mind that we could lose Cohen too. I know people will say "dont think about that", and while I try not to dwell on it, I think it would be impossible for it not to at least cross our minds. Cohen is a sick baby and we continually pray for many miracles in his life. He has come a long way and it is only by the grace of God that he has come as far as he has. But, the thought of losing him still terrifies me. I am trying to trust in the plans of the Lord and take it one day at a time.

Saturday, July 2, 2011

Drama King

Cohen is becoming quite the little character. He likes his room dark and quiet. If it's not then he always puts his hands over his face. The other day they were doing some construction in the hallway outside his nicu room and I came in and peeked in his isolette and he had his hand flat on his face like "Sheesh, can't a guy get any sleep!?" And then sometimes he puts his hands over his eyes like he has a headache and does these BIG yawns. It's pretty funny.


Cohen's main issue is still his lungs. He has a pretty big leak on his ventilator which is causing them to have to try a few different things to try and make up for it. He was intubated right after he was born and has grown since then so the tube no longer fits as well as it should. Today they changed some sort of settings on his ventilator (I didn't really catch what they were talking about) but he seems to be doing a lot better. Before they changed it he was starting to have an increasing number of episodes where he would drop his heart rate and his oxygen saturation but would fix it himself. This morning he had a few times where he would drop but wouldn't be able to get himself back up without stimulation, which was a little scary for mom. So, last night I told the nurse that he never used to do this and that I was concerned and she brought it up to the drs who decided in rounds today to change whatever they did on his ventilator.  And he has only had a few episodes since then but none like the ones this morning. I feel a little better now.


Danny is the best man in his friend's wedding next weekend so he went camping for a night for the bachelor party. He went fishing today and caught a fish that he says is probably as big as Cohen...(I think I would have to see a picture :) and he also got to go hiking. I'm glad he got to go out for a little adventure, its good to get away from the hospital for a little bit and spend some time with his friends. I also took a little time out with a friend to see the sunshine which I think was good for me. I like to be with Cohen as much as I can but sometimes its nice to just take a little break. Gramma Rinehart got him a few new books for his 4 week birthday that he got to open a little early. He likes "Spot Goes to School" but I think he was glad to hear a few new stories. His new favorite is "Goodnight Moon".

This weeks prayer requests: That he will continue to do well with his new ventilator adjustments and that his lungs will respond well to the steroids that he will get sometime this week. If the leak in his ventilator continues to get worse or they are really having to adjust his ventilator they will have to take out the old tube and reintubate him, which isn't ideal. Also, they may start to think about dealing with his PDA this week and we are really hoping he doesn't have to have surgery. There is a medication that they would try first to see if that would close his PDA, however, it is most effective if they use it in the first 10 days after he's  born. He is quite a bit past that time but they are still hoping that it might work and that he can avoid surgery. So, basically we are hoping that 1) The steroids help his lungs enough that he can wean more on his ventilator settings and they would wait for his PDA or 2) The medication works to close his PDA if they choose to give it to him.
Also, the place that we are staying at is a little expensive and so we started to look at apartments a little bit in hopes of finding something cheaper. We have been overwhelmed by the generosity of many of our friends, family, and even strangers and we really want to be good stewards of the things we have been given. However, when we started to look we decided that it might be best to stay where we are a little longer. I feel a lot safer living here because there are a lot of people coming and going. While I have my mom with me here most of the time, eventually I will probably be here by myself. Everyone who stays here is here because they or their family are being treated at UW, so everyone is kind of in the same boat. There is also a free shuttle that comes by and I am able to ride the bus to the hospital which is very convenient. So for now I think we may stay here unless something else comes along or I decide to start couch hopping :)