Thursday, June 30, 2011

Videos

I am finally posting two of the videos I took last week. It's kind of long but you can see his little eyes open :) The other one is of him chewing on his tube, one of his favorite activities. I made it successfully through rounds again today. Cohen has mostly been having quiet days, but he isn't making much progress on his ventilator settings. He is going to get steroids next week to see if it helps his lungs out at all. Since he is still getting rid of his rash they don't want to give the steroids to him yet because they can hide the symptoms of infection, so they want to wait until his rash is hopefully gone to give them. If the steroids don't work then they will start thinking more about fixing his pda, which they also won't do until his rash is gone because the rash is right where they would make an incision. For now the plan is to let him kind of hang out until they try the steroids next week. Please pray that he doesn't continue to have to go up on his ventilator settings and that his rash heals quickly. He has been on his meds for the rash for almost 2 weeks now and it looks so much better. Since Cohen has been stable we have been getting to hold him every day for a few hours which we love.
video 
  video

Wednesday, June 29, 2011

Date Night

Cohen has had a few pretty slow days, which we are so thankful for! They are still just playing with his ventilator settings a little but he is just kind of hanging out for the most part. His feedings have increased to 4.3 mL per hour which he has been enjoying! He is down to one IV which is so weird to see him without something on every limb and a ton of tubing. His rash is looking much better and one of his nurse practitioners said they might write an article on him and use his pictures because it is so rare and they've never really seen anything like it. Cohen and mommy got to have a little more snuggle kangaroo care time today which we both enjoyed. Cohen also finally got his fingers into his mouth! He is always trying to get them in there and this morning when we came in he was sucking on his fingers...what a big boy. I did take a picture but I don't have my camera cord here at the hospital. This is going to be one well photographed little boy!
Danny is here for one more night so he is taking me on a little date tonight.  It will be nice to have some time together away from the hospital. We were coming into the hospital one day and he mentioned how normal it had become for us. I generally come in around 9-10 in the morning and stay until around 2:00. Sometimes I go home for a little break otherwise I stay until dinnertime and then go home. Then I make another trip back in the evening to say goodnight to the little fellow and read him his bedtime stories. He only has two books so far so we might get him another to add to his collection for his one month birthday on Sunday!
We are slowly starting to do a few more "normal" things like visiting with a few friends and Danny is the best man in a wedding next weekend so I may try and make it to that. So far I have been secretly thankful to kind of hide in Seattle and not have to see too many people quite yet. I have to admit it's a little bit awkward to see people for the first time mostly because I think people are a little bit afraid or aren't really sure what to expect out of us. It's usually kind of a cautious approach that we get. They probably aren't sure if I am going to be a crying mess or if we will still be the same people they knew before. Some days I am a crying mess, but some days are better than others, so I guess it's fair to wonder what you are going to get. Things that are not helpful are saying things like "At least you got one good baby" or "You can always have more kids". We are very thankful for Cohen, and yes we can have more kids, but that doesn't make losing Carter any easier. I know that people say these things with good intentions, but they aren't helpful. Things that are helpful are hugs, telling us you are thinking of us or praying for us, or asking questions about Carter and Cohen. I will talk about either of them any chance I get :) You don't have to have the "right" things to say, we just appreciate that you care. So many of you have called, sent cards, texts, emails, and facebook messages and I know we haven't been able to respond to everybody individually but please know that we did receive them and we do appreciate them very much!

Tuesday, June 28, 2011

Daddy's Turn!

Danny has Wednesdays off of work for the summer so he drives down after work on Tuesdays and then leaves for work from here on Thursday mornings. After I got to hold Cohen yesterday I asked the nurse today if Danny could hold him when he got here today. He has been stable enough that she thought that would be a good idea. I was so excited all day for Danny to finally get to hold him. Cohen enjoyed his snuggle time with his dad and was very well behaved again. He got to snooze with his daddy for about 2 hours. Not much excitement today other than that. His labs were checked this morning and his kidneys are doing fine but his liver function tests were up a little so they are going to continue to watch those. Cohen's nicu friend gave him some of his old preemie clothes that he has outgrown. Cohen doesn't get to wear clothes quite yet but we put one of the little hats on him and it fit perfectly! He looked like a little cupcake :)


There will probably be quite a few posts with my rambling, but it helps me process everything that is going on. I think that by being a mom I am learning more about the heart of God. Last night in Psalms I was reading about how the Lord takes delight in us as his children. He wants to bless us and he wants good things for us. This is something I have struggled with but when I look at Cohen, it starts to make more sense to me. I think everything he does is so cute, from his wiggling fingers and toes to his grumpy faces that he makes. I truly do delight in him, even in the smallest things that he does. I could sit and look at Cohen all day (and I often do!). When Cohen has to get his blood drawn, or a new IV started, or his little rash poked at, it hurts me too. I would do anything to take his pain away. The Lord is always thinking of us, always finding ways to bless us, waiting for us to look to him. He doesn't want bad things to happen to us. They do happen, that's a part of life with sin and he does allow us to go through them, but he hurts with us. He feels our pain and he walks with us, offering to carry our load for us. I know he has been carrying our burdens for us through this. I don't know how anyone who didn't have someone greater and more powerful than themselves to believe in would be able to make it through this.
 On another note, I am so thankful for the nurses in the nicu. Cohen is getting to the point where he has "regular" nurses who know him and everything he has been through. They take such good care of him and it makes leaving him at night so much easier. The nurses have also been a huge support to me as I am there all day. They make sure to check and see how I am doing, whether I have had lunch, and if I am taking little breaks out for myself or with Danny. They have given me shoulders to cry and ears to listen. It takes a really special kind of person to take care of these teeny, tiny babies and their parents as well. We are so grateful to them!

Monday, June 27, 2011

Kangaroo Care

We are doing a little flashback today, this is the first time I got to do kangaroo care with Cohen! I had held him one other time, but he was all wrapped up and we didn't really get to snuggle. This was one of the best days of my life! 

Today I was left by myself for about 12 hours, it was a big step. I did manage to walk to the market and find myself a sandwich and get myself to the hospital....it only took me an hour because I missed the bus twice. I don't have a car here because my license expired while I was in the hospital and I haven't quite gotten a chance to get it renewed. But, eventually I got myself there. I guess I'm not very good at being a big city girl, even though I lived here not too long ago.
When I finally got to the hospital the nurse asked if I wanted to do my first kangaroo care. Of course I said YES! I've held Cohen before but he was all wrapped up in a blanket and it was only for about 20 minutes. When they do kangaroo care they like to have you all settled because they like to leave the baby there for up to 3 hours. So I had my snack, made a bathroom trip, did my pumping and settled myself in the recliner chair. They put him on my chest so we were skin to skin and it was such a great feeling. I could feel his little feet and hands wiggling and feel his breathing. He did great the whole 3 hours, he only dropped his heart rate and oxygen once or twice when people came in to look at his rash (which is looking much better). I know that he is tiny, but when I was holding him I realized how tiny he really is. It didn't really even feel like I was holding anything! The time flew by and I really didn't want to give him back, but hopefully we will get to do that a little more often. I would love for Danny to be able to hold him because I think they would both really enjoy that.
The rest of the day was pretty quiet again. Cohen is hanging out on his ventilator settings. His blood sugars have been stable and they are going to take out his picc line tonight. They also want to increase his feedings so that he gains a little weight. Right now he weighs 1 lb 10 oz so its time to fatten him up. We are so thankful for Cohen and that he seems to be doing well. And this mom is pretty happy that she got to hold her baby boy... I think God knew that I needed a little snuggle time.

Sunday, June 26, 2011

3 Weeks Old & Some Thoughts

Cohen is 3 weeks old today! I say this every week, but time goes by so fast...I will probably be saying that for the rest of his life. After chasing him around with his insulin for a few days trying to control his blood sugar which was going really high and then dropping down low, the doctor decided to just turn off his insulin completely and see what happened. Instead of poking his little foot hourly to check his blood sugar they are now only checking every 6-8 hours. He has been off insulin since yesterday and his blood sugars have been stable. Hopefully this will give his body a chance to regulate itself out and control his blood sugars on his own and give his foot a chance to heal. He is at really high risk for infection and any time you break the skin you are increasing that chance, and his body sure doesn't need anything else to work on! Pray that his blood sugars continue to be stable and that he doesn't get any infections. Cohen is lower on his oxygen but has gone up on the volume being put into his lungs to help them expand a little more. He also got his breathing tube readjusted this morning and has had a good blood gas since then. His doctor doesn't consider increasing his ventilator settings a step back necessarily, just part of the road.

Dear Cohen,
We can't believe you are 3 weeks old today! You and your brother were the best gifts your mom and dad could have asked for. It's amazing how much you have changed in the last few weeks and we are so excited to watch you continue to grow. You are already developing your own personality. You always keep the doctors and nurses on their toes by doing things your own way instead of the "normal" way. We think that maybe you like all the attention you get because you love to set off your alarms. The more that go off at the same time, the better. We think that you have your mommy's nose and we know you have your daddy's long fingers and toes. We also know you have your dad's tummy because you love eating and you have never had any problems in that area! We know that God must have a pretty special plan for your life and we are excited to see what that is. You are the strongest little boy and we are so proud of you. We know you will continue to keep fighting. You are a perfect little boy and we are so thankful for you. We love you very, very much.
Love, Mom & Dad

I started writing this post this morning and had to stop because I was crying so much. I was thinking about how unfair it was that Carter will never have his 3 week birthday with his brother. Honestly, I was sad and angry. I was having a pretty bad morning and I just couldn't stop crying. I called a close family friend and had a pretty long talk with her. One of the things that our pastor said at Carter's memorial was that this wasn't a mistake. I have been wrestling with this thought since then. Our friend asked me if I was angry at God and I admitted that I was. I was mad that I felt like he had taken Carter away from us. She reminded me that God loves us deeply and he doesn't want bad things for us. He isn't malicious and mean. She told me that God had saved Carter, he will never have to know pain, fear, or sin. He is in heaven in the arms of Jesus, perfectly healed. If we asked him if he wanted to come back and live on earth would he say yes? He is in the best place he could ever be and I don't think he would ever choose earth over heaven with the Lord. The Bible says that God never promised that we wouldn't have pain and go through trials, they are part of living on earth with sin. But he does promise that he will never leave us. Does life always make sense? Do I understand God's plan? Not yet, but someday I will. There is some purpose to this. And someday I will get to be with my baby again in heaven. Until then, I find comfort in knowing he is with Jesus, who I'm sure is letting his Great Gramma rock him once in awhile!
This same family friend gave me a book called "Jesus Calling" awhile ago when I first started having problems in my pregnancy. God knows what I will be facing for the day and they always seem to speak right to my heart. This is the one from today:

"Stay calmly conscious of Me today, no matter what. Remember that I go before you as well as with you into the day. Nothing takes me by surprise. I will not allow circumstances to overwhelm you, so long as you look to Me. I will help you cope with whatever the moment presents. Collaborating with me brings blessings that far outweigh all your troubles. Awareness of My presence contains Joy that can endure all eventualities"

Please pray that I will constantly give my heart to the Lord as I continue to process all of this. That I will be thankful even in the midst of trials and sorrow. That I will look to the Lord for everything I need and not get caught up in myself. Please also pray for our physical health. Obviously, we have been under a fair amount of stress and both Danny and I have woken up over the weekend feeling like we may be getting colds. I tried to stay away from the nicu today because I definitely don't want to give Cohen anything. It's really hard not to see my little guy when I am used to being there all day. So please pray that this will not turn into a cold and that I can fight off whatever it is. And here's a picture for you if you made it all the way to the end of this.

Friday, June 24, 2011

A Fairly Quiet Day

Cohen had another pretty quiet day. I got to the hospital this morning just in times for rounds. All of the people who take care of Cohen meet every morning and talk about him and everything going on.He has about 6 doctors, respiratory, pharmacist, nutritionist, and nurse. I have only been to rounds twice and I just cried through them, but today I actually went and didn't cry! This is a pretty big accomplishment for me.
Cohen's kidney ultrasound that he had yesterday to check to see if the fungus had spread came back normal as well as his echo that he had done today! What an answer to prayer! He has one spot on his chest xray in his right lung that they aren't sure if it may have gotten to his lungs or if it is something else.  Cohen still has a moderate PDA but the doctors aren't planning on doing anything unless it starts to prevent his progress in going down on his settings on the ventilator. At this point they are happy that he is making enough progress that they don't think anything needs to be done immediately. Last night when I left he was pretty low on his oxygen, almost to room air! This morning I came in and he had to be increased in his oxygen quite a bit, this kind of seems to be how it goes...up a little, down a little.
One prayer request is Cohen's blood sugars. They seem to be all over the place and because of this they are having to change his insulin all the time and poke his poor little feet to check his blood sugars hourly. He can't quite seem to get regulated in his blood sugars and nobody is sure why. He will have good sugars and get his insulin turned off and then he will go really high and have to go back on again. So please pray that they can figure out why he is having so many variations and that they will level out. He is still so little and all the labs and pokes he gets make his blood levels get low and they he needs blood transfusions, he had to get another one today.
We are already starting to see little bits of Cohen's personality. Lots of preemies don't tolerate getting turned and messed with very well, but Cohen is pretty easy going and laid back when it comes to this. I think he gets that from his dad. He also seems to be fairly stubborn and likes to do things his own way, not the way of normal preemies. I think maybe he gets that from me. We like to tease him that he just likes all the attention from having a weird rash and not having the "normal" preemie problems. A common problem with little babies is feeding problems. Cohen started getting breast milk (through a feeding tube) last week and hasn't looked back. He is up to 3 mL per hour, he must have his dad's stomach too!
Ok, I guess his day was a little busier than I thought, but maybe I'm just getting used to it. I'm not sure that any of this will ever feel normal, but maybe someday it will get a little easier. Thanks for all your continued prayers! We really do appreciate them.

Thursday, June 23, 2011

Mystery Solved (hopefully)

Since I last wrote a little update, the drs have decided that Cohen has a fungus and not a virus. Yuck, poor little guy. Again, it is something that is just in the air/environment/on skin and they will probably never know where he got it. So he is off his antivirals and has been on antifungals for the last few days. They sent his pictures over to Children's and they thought it looked like a fungus they had seen before in small babies. Because of his poor kidney function, they can't give the usual medicine but they are giving him another one that they said is generally just as effective. He is going to have a kidney ultrasound today to make sure that there is no fungus in his kidneys. We are still hoping that it hasn't spread anywhere other than his skin. The drs think that if it had spread anywhere else he would be a lot sicker but can't say 100%. We are still waiting for the results from his spinal fluid, blood, and lungs to see if there is growth anywhere else. 
Cohen has had a few pretty quiet days. He has had to go up a little on his ventilator settings, but today came back down a little. He was supposed to have another echo of his heart today to check on his pda but there are too many scheduled and since he is pretty stable he will have it tomorrow instead.
He was very well behaved while we were gone for the memorial and even sent us a few videos of him waving so we would know he was okay (which I watched over and over...probably about 70 times!)I took a few videos today because he has been really active today, waving his arms and legs, opening his eyes and pulling on his tubes. I would just turn off my camera and then he would do something else cute so I would take another picture or video. Poor guy probably wanted his mom to go away, but he wouldn't quit showing off! I can't get them to load with the slow internet here, so I will have to put them up later. Here are some pictures from today. I would have been 28 weeks pregnant today. It's amazing how well this little guy is doing when you consider that he should have been inside about another 12 weeks still!


Wednesday, June 22, 2011

A Trip Home

I am at home for the first time in 5 weeks today. We are having a very small memorial for Carter with our immediate families up in Lynden. This will obviously be a very hard trip for me emotionally as I haven't been home in such a long time and it is for my baby's memorial. When you get pregnant this isn't the kind of thing you ever imagine having to do. We are grieving the loss of our baby and also of "our twins". Cohen will never know his twin brother. We were in shock when we found out we were having twins. After shock became reality, we spent many hours daydreaming about having twins and how we would put them in the same crib at first because they would be used to being together, we thought about how they would always have a playmate around, how they would be really good friends, and how they would be the quarterback and wide receiver on their high school football team. It's different to grieve someone who has lived a good long life and your child who you will never get to see grow up or experience life.
While it is good to be home, it was so hard leaving Cohen. I know he is in good hands, but I miss him like crazy and at the same time that I want to be here, I want to be there. I feel like there is some kind of disconnect, like I have two lives. In a weird way, being at home feels strangely normal, like I should still be pregnant and we should still be getting ready for babies, or like it was all just a really bad dream. There are things to clean, laundry to do, and bills to pay. At the same time, I know I have a baby in Seattle waiting for me to come back. And a hotel room that isn't my home and this strange other life that will be my normal for awhile. I can't explain it well other than that I'm not sure my two worlds have connected yet.
We do have a Cohen update, but I will do that later. Please keep him and us in your prayers as we are away and have a very hard day ahead of us.

Monday, June 20, 2011

Mystery Diagnosis

So, Cohen is still a little mystery boy. The majority of his viral testing has come back negative so they no longer think it is a virus. They sent pictures of his back to Children's Hospital to their dermatologists to see if they had any suggestions. This is just such a rare thing in babies, especially in the NICU. The dermatologist was there while I was visiting tonight and they are checking for a few more things. They had to do another scraping of his bumps, poor little guy. But, he seems to be tolerating it all fairly well. He's a trooper that's for sure! He is still doing well otherwise. Please pray for wisdom for the doctors that they will be able to figure out what it is. Pray for strength for our little buddy that he will keep doing well and pray that whatever it is isn't in his lungs, spinal fluid, or blood.
He got a second picc line today because he is getting a number of medications that have to be run by themselves, so they all need a different line. Rather than give him a new IV every day they chose to give him another picc line. The little guy was pretty worn out today, he slept most of the day. I forgot to mention yesterday that he opened one of his eyes!! The other one still seems to be fused shut, but he definitely had the one eye open.
Here are a few more pictures from the other day when I got to hold him. I haven't taken many new ones lately because he has had so much going on. These are pictures that the nurse took. They are kind of blurry because she tried to turn the flash off so it wouldn't be in his face. He is wearing Gramma's wedding ring in the first picture.

Sunday, June 19, 2011

Father's Day & 2 Weeks Old!

Cohen is 2 weeks old today! I can't believe it has been 2 weeks already. I probably said that last week too, but it's still true. Cohen had another good day today, he has been getting weaned on his ventilator settings. He has a new Dr for the next 2 weeks so I got to talk to her a little bit today. The drs are pretty baffled by Cohen's rash and how he got it. They said it just doesn't really fit anything that they normally think about in little babies. His secretions from his breathing tube got checked for the HSV virus and came back negative so that's good news! They are also checking him for chicken pox although they think its unlikely. He is still on his antiviral medications and seems to be handling them well. His dr said for as weird as his rash is he is still doing really well, so we are encouraged by that.
The Dr he has now is also the one who was there the night of the delivery and worked on Carter. I got to ask her a few questions about that night since I hadn't really had a chance before now. So that was a good/hard thing I guess.
And, of course, Happy Father's Day to my wonderful husband!! This isn't quite how we pictured his first Father's Day to be, but we are so thankful for our little baby. I honestly can't imagine going through this with anyone else other than Danny. He truly is my best friend and I couldn't imagine a better daddy for Cohen. I am so thankful for how hard he works and for everything he does and has done for me, especially in the last few months. I love you, Danny!! I got these little shirts for Carter & Cohen quite awhile ago because I thought they were so cute. Cohen may have a little growing to do before he gets to wear it.

Saturday, June 18, 2011

Another Busy Day

Our little guy had another busy day which he handled well! He got a lumbar puncture to see if there is any virus in his spinal fluid. The Dr had said that they would wait a couple days to do this, but they thought he was stable enough to have it done today. He got some more testing but we haven't really seen any results of anything yet. They did say that some of the tests he had done earlier in the week for anything bacterial came back negative so his antibiotics have been turned off for now, which is good, his poor little kidneys don't need anything extra to try and handle. His blood gases have been good and they have actually turned down his ventilator settings. He is actually doing well considering his little body is trying to get rid of this virus. They are keeping him on the antivirals and he gets those every 12 hours. They normally would give them more often but are trying to make sure his kidneys can handle it. Its amazing to me when I think about how much his little body is having to try and work on all at once. Cohen is resting on his tummy and seems to like it, he tried that the other day and wasn't too fond of it but today he seems to be enjoying it. He is wiggling his little rump all around and almost wiggled his diaper right off. He sure is a little fighter. We are just continuing to pray that the rash clears up and that it is just on his skin and not in his blood!
We would also just like to say another HUGE thank you to everyone who has been praying, brought us food, and given financially. This is definitely not an easy situation but it is great to know that we are so cared for by those around us. I would love to be able to thank everyone individually (and maybe someday I will be able to!) but please know that we really appreciate everything that has been done for us.

Friday, June 17, 2011

Please Pray

Well, our little man just can't quite seem to catch a break. This morning they were worried enough about his rash that they called the dermatologist in to look at it because it seemed to have gotten a little worse overnight. They still haven't figured out what it is but have started him on antibiotics and antivirals to try and stop the growth of it. They have taken a whole bunch of cultures and are checking his blood to see if it is a localized thing on his skin or if it has spread to his blood/the rest of his body. Please pray that this is not the case!!! He has a much better chance of being treated for it and not having it cause as many problems if it stays only on his skin. All the medicines they have started him on are going to be hard on his already damaged kidneys so please also pray that they will tolerate the medicines and not get damaged further. In a few days they want to do a spinal tap to see if it is in his spinal fluid. At this point, we don't really know what the "best case scenario" that we want is because none of it is very promising. Cohen is being moved to an isolation room until they figure out what he has. Please continue to pray as he is very sick. Pray that whatever this is stays only on his skin and doesn't go into his bloodstream or elsewhere. Pray for his mom and dad as their hearts are hurting for their baby. We know he is a fighter and we pray he will continue to fight.

Thursday, June 16, 2011

A Few Surprises

When I got up this morning I texted Danny to see if he had called to check on Cohen in the morning, because he usually does on his way to work or shortly after. He said that Cohen had been switched back to the regular ventilator! His Dr said they had checked his blood gases and they were quite a bit better and his lungs were doing better so they switched him back over some time in the night or morning. Cohen has been tolerating his feeds well so he is up to 2 mL/hr. Such a big boy! They check his tummy to make sure he is digesting and the milk isn't just sitting in there and so he hasn't had any residual.
One of our favorite nurses is there with him today, which is so great because the one yesterday was making me a bit nervous. They are all good nurses but some of them are a little more calm and reassuring then others. So, I was so glad to see her this morning. She told me he had a good night and said that she was going to do some of his cares and then told me she wanted to have a little fun today and did I want to hold him!? Of course I said yes, although I immediately started sweating because I was so nervous. So she took him out with all his little tubes and wires and put him in my lap. Usually they try and do skin to skin but because he is still hooked up to quite a few things she just bundled him up in a blanket and put him in my lap. It was so great to be able to hold him and he tolerated it well, he didn't drop his heart rate or his oxygen or anything. She let me hold him for 20 minutes, which flew by and didn't seem like long enough. I just can't even describe how good it felt to finally hold my baby boy. He is so tiny and she put a little hat on him, which was still way too big. I am just so thankful to the nurse for letting me hold him, she thought we needed a "positive experience" after our rough couple of days.
A few prayer requests:
Cohen has a weird little rash on his back that they aren't quite sure what its from. They have cultured it to hopefully rule out anything bad. The Dr said he isn't really sure what it is, maybe a viral thing or maybe from being on his back with the "shaker" ventilator just irritated his skin. Please pray that it clears up quickly! Cohen doesn't need anything else to have to work on.
The results from his echo came back and he does have a fairly large PDA. The Dr said that generally if it is going to close up on its own it would have done it in the first week or so. He said there is still a chance that it could close on its own -- so pray for this!!! If not, they will wait to see how much it is affecting him and whether he needs to have the surgery or if he can wait it out. It mostly depends on if it seems to be causing him problems, like if they can't get him off the ventilator or he stops making progress. But, at this point he is still weaning from the ventilator so they are going to let him ride it out a bit and see. We know that God can do great things so maybe we will get a little miracle and it will close on its own!
There are more pictures to come but here is a few to hold you over :)

Wednesday, June 15, 2011

10 Days Old


Today was another pretty busy day for us. Cohen is still on his oscillating ventilator and they said he may be on it for a few more days, which is fine with them. No more bleeding from his lungs! They ended up doing the echo afterall, but we haven't heard the results yet, maybe by tomorrow morning. It may not turn out to be a very good picture since he is on his shaky ventilator. His electrolytes have been a little off so they are trying to keep up with those. When he was born they put an IV in his belly button, but that one has started to come loose and the skin around it is starting to break down. Today they were able to put in a PICC line on their first try! His was put in his foot and its kind of a glorified IV that can be left in for longer periods of time. It goes from his foot all the way up so that the tip is all the way up by his heart. After they put it in his little foot was bleeding for quite a while so they are going to try to check his platelets tonight. They had been low earlier in the week and then came up a little bit, so hopefully they aren't going back down again! Danny got to take his temperature and I got to change his diaper twice. The second time he peed all over while I was changing it. Little troublemaker :) And here are some pictures from today. His bilirubin was high again so he is back under his blue lights. I think he looks pretty cute with his little sunglasses on. He looks pretty scrawny but he has actually gained a little bit of weight! The last picture is of his little diapers, these are huge on him and go down past his knees!!
Its hard to see but this is his little diaper

Tuesday, June 14, 2011

Tuesday

Not too much to update on today. Cohen had an ok day, not too many changes. They are trying to just let him rest and not make too many changes in his care. He is still on his oscillating ventilator and they are just adjusting his settings based on his blood gases. Because he is still on this ventilator they will hold off on his echo because they wouldn't be able to get a very good picture with all his shaking. He did get suctioned some more today and there was no more bleeding so hopefully it has stopped for good! We did get a little bit of good news in that they did another ultrasound of his head and the bleeding was gone from the left side of his brain and is resolving on the right side! Right now he has an IV going into his belly button that eventually they want to get out. They have tried to start other IVs on him and his poor little veins are just too fragile. So please pray that when they do decide to try again that they will be able to find one they can use. And Danny is here until Thursday morning!! Hooray! We have missed him :) I also had some friends from work stop by and they brought us lots of snack goodies which is perfect as we are often at the hospital for the majority of the day. Thanks guys!

Monday, June 13, 2011

A Rough Day

Well, after Cohen had such a good few days, today was pretty rough. The nurse tells me that that's kind of how the NICU roller coaster goes...3 steps forward and 2 steps back. This morning Cohen was getting his breathing tube suctioned and it got clogged and they weren't able to ventilate him. They had to take out his old tube and reintubate him. When they did this they found that he was bleeding from his lungs. At this point, they aren't really sure what is causing it, it it was trauma from the tube or if its a problem because of his PDA. They were going to do his echo this morning but at that point he wasn't stable enough for that. He also had to go back on his oscillating ventilator, the "shaker" ventilator we call it, that he was on before.
So he's had a pretty rough day, but his doctor came by this evening and said that considering all that has happened he is actually doing ok and that he seems to be behaving. His blood gases are stable and his chest xrays aren't getting worse. His blood counts were also ok so they are hoping that the bleeding has stopped. They said that this evening he would have been stable enough to do his echo but that it would probably get done in the morning. This will tell them a little more about his PDA and whether it is significant enough to need treatment. At this point, they don't want to give him the medication to close it because of the bleeding in his lungs. They will either wait a few days to  make sure the bleeding has stopped and then give it to him, or he may have to have surgery to close it.
It has been a pretty hard day on his mommy and daddy too. Danny is coming down tomorrow after work to stay the night with us which is good. Right after they told us about everything that had happened there was a baby in the room next to us who died. I could hear them working on the baby and then eventually that he/she had died. It was heartbreaking. We are glad that Cohen is a fighter, but he has a long way to go. It is hard to be in a situation where we are completely out of control and I would be lying if I said that I wasn't struggling with trusting the Lord completely in this situation. I know that he is here, and I know that he is watching over Cohen, but I still struggle. So please keep me in your prayers and pray that my faith will grow stronger through all of this.

Sunday, June 12, 2011

One Week Old

Cohen is one week old today! Part of me can't believe its been a week already and part of me thinks this has been the longest week ever. Its crazy to think that it has been one week since the most devastating and also exciting days of our lives. Cohen has made a lot of steps forward, but he still has so far to go. Its so hard to even explain all the different feelings and emotions that we are having. Its been a pretty exhausting week, but we feel so blessed to have all the support that we do. We just can't express how thankful we are for the love and support of friends, family, and even strangers.
Cohen has been doing well back on the conventional ventilator, his settings are still being tweaked so that they can find his happy place but overall he hasn't had to many problems with it. A few days ago one of the nurses heard a heart murmur and so they are concerned that he has a PDA. When babies are inside the blood doesn't go to the lungs and there is a blood vessel that allows the blood to bypass the lungs. Normally, this closes after birth, but it isn't uncommon in preemies for it to not close. They are concerned about this because it may be causing irregular shunting of his blood. Sometimes it can close on its own, but if they feel it is causing problems then they may give him medication to close it. He is scheduled to have another echocardiogram tomorrow sometime. The Dr does not think this has anything to do with all his previous concerns about having heart problems once he was born. The echo would show if anything else was going on, but the Dr doesn't expect to find anything other than the PDA.
Cohen is also enjoying his food! They started to feed him and he is doing well with that, he is getting 1.5 mLs an hour. Woohoo, such a big boy. Today I got to change his diaper, he is so tiny! He is off all of his
medicines to help him pee and yesterday he actually started to pee too much so they were keeping a close eye on his electrolytes. The Dr had told us that this may happen, but it seems to have slowed down today. He did get rid of a fair amount of his fluid and he looks really good today! We have decided that he has the Rinehart "Nike" eyebrows and lots of dark hair. He definitely has his Daddy's fingers and toes and he loves to stretch out and wave his arms around. He also likes to sleep with his hands on his face and it's really cute.
Danny is going back to work this week so please pray for energy and strength for him as he is at home without his family. We are really going to miss him here. My mom is here staying with me and I got some home cooked food! We have moved out of the hospital room and into a sort of hotel. It's one of the old UW dorms set up like hotel rooms and with a community kitchen. It is specifically for people who are patients or need to be close to the hospital for short or long term.
I had read this verse when I was pregnant and wanted to put it in the babies room, but never quite got around to it.
"I prayed for this child, and the Lord has granted me what I asked of him. So now I give him to the Lord. For his whole life he will be given over to the Lord" 1 Samuel 1:27 & 28
And a few pictures...


Danny's "bed" at the hospital...a little short

Friday, June 10, 2011

A Big Day Planned!

Ok, so I was going to write this this morning but didn't quite get around to it. Cohen has/had a big day planned! First, he was weaned off of his oscillating ventilator and put back on the conventional ventilator. He has been on it for a few hours and seems to be doing ok. His blood gases were good but they were tweaking the settings a little bit. He gets a chest xray tonight to see how his lungs are doing. Hopefully he tolerates this well.
Second, he has been peeing lots so he is going to get his catheter out! He is off of his Dopamine and his Lasix and his still peeing so we are hoping his kidneys just needed a little jump start. Hopefully once his catheter is out he will continue to go.
Third, he got to eat!!! They are starting him on feedings of breast milk to see how he does. I can't remember how much they said he was getting, but it is a teeny tiny amount, like 2 mL I think.
He is done with his blue lights (for now at least) so we get to see his little tiny face. I think he looks pretty good today. He is still a little swollen from retaining his fluids when he wasn't peeing at first but they are hoping he will start to pee those off. The Drs said eventually he will starting peeing really large amounts as his body gets rid of the extra fluid and so they will have to work to keep all his electrolytes in balance. Sorry, lots of talk about pee....
I have been getting up and around a little better. I have been walking to the NICU instead of going in my wheelchair. My body has been in bed for the last month and then some, so I am using muscles I haven't seen in a long while. We tried to go out to dinner last night but that turned out to be a little too much. I am still pretty tired so I have to make sure that I plan in times to take naps and rest. Today has been mostly a rest day as we have had quite a few visitors in and out, we are taking a day off today. Its amazing how busy things can seem and how quickly the days can go.
We are so thankful to be able to stay at the hospital so we can be close by. Danny's "bed" however, is a chair that folds out flat that he sleeps on. I can't even explain it, its not a recliner, the pieces of the chair just come apart and fold flat. And his feet stick off the end by about a foot. So, we are looking into a few other options for places to stay. I think that's all for today, Cohen has a lot of changes going on and we are hoping he will do well with them. He has been having a lot of "ups" lately which we are so glad about, I imagine he has a few "downs" coming as well but we will keep hoping for the good!

Thursday, June 9, 2011

A Little Good News Update

Cohen had a good night last night! Danny has been going to rounds where all the Drs, nurses, pharmacist etc all gather to talk about Cohen's care. They are weaning him off of his oscillating ventilator and may try and switch him back over to the regular ventilator because his lungs are starting to look better! Praise #1!!! Cohen has also been working very hard on his peeing and is starting to make more urine! They are turning down his Dopamine (Medicine to keep his BP up to better perfuse his kidneys). He still should actually be making a little more than he is, but he is almost there! Praise #2!
Some of my family - Karen, Joel, Christine, and Chuck came to visit and meet baby Cohen last night. He was so excited to meet them that he decided to show off and poop for them! The nurses were very impressed and offered to let Danny change his diaper. He still has lots of tubes and wires that are a little overwhelming so he let the nurse change his diaper but he did get to take his temperature! We are very glad that Cohen got to meet some of his family (and a few friends) yesterday.



Preemies are at high risk for brain bleeds so Cohen had an ultrasound of his head. He did have evidence of some bleeding in both sides of his brain. The Dr said that if he was going to have any kind of bleeding this was the kind he would want to have. There are different stages of brain bleeds and he has the lowest level and the majority of kids show no problems at all with this kind. He will be checked again next week to see if he is still bleeding or if it was something that may have just happened and is now stopped. Please continue to pray hard that he is not continuing to bleed in his brain!
The nurses here are so great, they always keep us updated on everything going on. They also take pictures for us when they open up his incubator to do his cares and they keep them on a CD for us. Cohen likes to hold onto his breathing tube or whatever other wires he can find. He had a sticker on his little eye cover that he got his poor little fingers stuck on. The nurse had to come pry his fingers off. He is a busy little boy that likes to stretch his arms and legs.
Again, we really appreciate all the prayers!! Please continue to pray for his lungs and kidneys and also that his brain will not have any more bleeding. I will be getting discharged from the hospital today. The hospital will provide a room for us to stay in for one or two nights. It is based on priority and since we live so far away and have a sick baby they said it shouldn't be a problem getting us a room, but if someone else needs it more then we will have to find something else. So for now, some good news! We know things can change very quickly and that we have a very fragile little guy. But he seems to be putting up a good fight and we are so thankful for a little good news.

Wednesday, June 8, 2011

3 Days Old

First of all, we would like to thank all of you so much for keeping us in your prayers. We are amazed by all the support of people we haven't even met, we know we couldn't do this without all the support! Little Cohen had a rough day yesterday but seemed to have a little bit better night. This seems to be a day by day (hour by hour, minute by minute) process of his care, which is pretty hard on his mom and dad.
As we mentioned yesterday, they were concerned with his lungs and so they switched him to a different ventilator. Instead of getting 40 or so big breaths a minute he is now getting around 100 little tiny breaths, more of a continuous thing. Sometimes the big breaths can be too hard on their lungs and damage the tissue so they are hoping he will do a little better on this ventilator. They are checking his lungs frequently by chest xray so they can see how he is doing. His little lungs are just so fragile because he is so tiny and early.
He also got a (teeny, tiny) cathether put in last night to see if he was making any pee and just unable to get it out. He had some pee throughout the night, but not quite as much as they would like so they are giving him medicine to increase his blood pressure so that his kidneys are better perfused (get better blood flow) so they make more pee. He is still retaining some fluid so they are also giving him a diuretic to help him hopefully get rid of some of the fluid.
They will also be doing a head ultrasound of Cohen this afternoon to see if he has had any bleeding in his brain, which can happen in preemies. He will be checked now because sometimes the bleed may have happened while I was still pregnant or sometimes they can happen after he is born so they want to check him now to see if its something that may have already happened or if they find later that he has some bleeding that it happened after he was born.
I (Jana) am feeling a little better physically today. They will either discharge me from the hospital this afternoon or tomorrow. The hospital provides a room for parents after discharge for a night or two, but not usually longer. It is based on priority and right now they said they should be able to get us a room no problem because they want us to be close by. After that we will need to find somewhere to stay, there is a hotel close by that we may be able to get a room at. We want to be close so that we can get here quickly and visit often.
Its hard to keep all the medical details straight because there are so many and they change so often! But, please continue to pray for:
1) Our emotional strength - it is a difficult place to be in to be grieving the loss of a baby and also trying to be strong for our baby who needs us to be there for him. The doctors are pretty straightforward and tell it like it is, which can be a little hard to hear and discouraging at times. But, we are just trying to take this all as it comes.
2) That we will be able to work out somewhere close to the hospital to stay once we are discharged
3)For baby Cohen's lungs and kidneys specifically - that he does better on this ventilator and that his kidneys start to work a little better and makes lots of pee

He is mostly all covered up with his tubes and things so it is hard to see him and get any good pictures. He is also under the blue lights for his bilirubin levels, which is also pretty common in preemies. But here are his little toes again. He likes to stretch his legs and wiggle his arms around, just like we always saw on the ultrasounds (and in my stomach!). He has the longest fingers and toes that he must have gotten from his daddy!

Tuesday, June 7, 2011

Cohen

Jana and I sat through rounds to hear what was going on with Cohen this morning and we found out that they are worried about his kidneys and lungs.  We knew it was going to be a long road for him but we didn't know how hard this would all be.  He hasn't peed very much and they know that his kidney's were damaged from the twin-to-twin transfusion.  We just hope that they haven't been damaged too much.  The nurse that's watching him told us that he peed a little bit for the first time last night, but it was a very small amount and not enough to make them feel better about it.  We hope and pray that there's plenty more pee to come.

There's also concern about his lungs.  He was just so early that his lungs didn't get a chance to fully develop and the ventilator is still needed to provide him with enough oxygen, but it's also damaging his lung tissue.  They moved him onto his other side and are going to x-ray his lungs again at noon.  If the damage is still there or its even worse they will be forced to put a different type of breathing machine in him.

We don't know exactly what all of this means, but the thing we do know is that both of these things need to improve quickly or Cohen isn't going to stand much of a chance.  Keep praying for Cohen because that's all we can do.  Thanks.

Monday, June 6, 2011

Carter Garen & Cohen James

Carter Garen (Baby B) and Cohen James (Baby A) were born yesterday at 10:35 and 10:36 pm. Carter gave this world his best try but his little body just wasn't meant for it and he is now resting in the arms of Jesus. He weighed 2 lbs and was perfect in every way.  Cohen is 1 lb 8 oz and is in the NICU where the doctors and nurses can keep a close eye on how he's doing.  The doctors have said so far that he is doing good for a baby of his gestational age, so we hope and pray that will continue but we know he has a very long journey ahead of him. We appreciate your consideration of our privacy at this time as we go through this time of grief and also celebration of a new, fragile little life.  Thankyou for all of your continued thoughts and prayers, there are just no words to describe the feelings and emotions we are going through right now. If you need to get a hold of us we are asking that you go through Jana's mom (Carol) to make things a little easier for us. Thank you again and please keep our precious boy in your prayers.



Thursday, June 2, 2011

25 Weeks

Well, we did make it to 25 weeks although not quite the quiet day we were hoping for! They hooked me up to the monitors for my NST and Baby B wasn't having as much variability as they would have liked, meaning his heart rate was just staying pretty steady where they like to see them have little increases in their heart rates. He also had a few times where his heart rate actually went down so they were a little concerned. They hooked me up again in the afternoon and saw about the same thing, not much variability but some slow downs of Baby B's heart rate. So, I have earned myself overnight monitoring so that they can see if this just happened a few times or if this is a consistent thing. They are also worried about me gaining back all that fluid again which could be affecting Baby B's heart. I think they will do another ultrasound in the morning to check baby fluids and may also do a biophysical profile to check on the well being of the babies. I don't plan on getting very much sleep tonight since I will be on the monitors and they come in usually at least every hour to readjust and put the babies back on since they usually move around. Hopefully I can get at least a few little naps in though. And also, there are currently five sets of twins on the floor right now!!

Wednesday, June 1, 2011

All Done!

Amnioreduction is done! The Drs came in early this morning and did my ultrasound and then decided since they were both available that they would just do it right then. It wasn't as bad as I thought, the worst part was them putting the numbing medicine in my stomach and then they just use a little straw to get the fluid out....they took out 2.5 liters!!!!! Ugh, no wonder I have been so uncomfortable! I feel way better already and they said the babies were looking better afterward too. In usual fashion, the babies were jumping around and waving throughout the entire thing (they use an ultrasound so they know where they are going). Baby B was even trying to play with the little straw they were using to take the fluid out with. They put me on the fetal monitor for about an hour afterwards and they said the babies heartrates continued to look good. I also got my second steroid shot this morning. They want them in for at least 48 hours which would be 10:30 am tomorrow (hopefully longer!)
The plan for now is just to lay low and hope I don't go into labor, which is kind of the same plan as before. I have been taken off the Ibuprofen because it can cause the baby fluids to decrease and Baby A is already low so they don't want me to take it anymore. They will keep a close eye on me today, although they do expect me to possibly have more contractions just because they upset my uterus by poking it with a big needle. I didn't sleep very well last night so I'm hoping I may even get a nap in today! So, everything went well and as usual, we just keep praying for a quiet rest of the day!