Hi Everybody,
Cohen here...my mom has a really busy weekend trying to get everything done. She is really hoping I get to come home soon so she wants to get as much done as she can. She said something about some people coming over to help her clean the house and my room for me. Mom says she is bringing my car seat down with her tomorrow so she is ready to take me and run when they tell me I get to go. I love all my nurses but I hope I don't have to stay here too much longer. Mom says I have a fun room at home and I want to go see it.
I haven't seen my mom for a few days, she said she went to some place called "work"? I don't think I've ever been there before though. Luckily, my Gramma was nice enough to come down and spend a few days holding me and keeping me company. Gramma helped me Skype Mom because she said she was really missing me.
Those people called nurses came in and poked my foot today to check my labs. They said everything looked good on my new oxygen settings. I am so glad to be off of that pesky high flow. It made me get a lot of water up my nose because the tubing always had water in it from the humidifier. Good news though, since I'm doing well on my breathing I get to start breastfeeding for real tomorrow. None of this dry breast stuff anymore. I have been waiting a really long time to eat like a real baby and I LOVE to eat. I think I get that from my daddy. My nurse weighed me today and I am 8 lbs 6 oz! I think I have already passed some of your guesses of how much I would weigh when I get to go home. I'll do my best to not pass up all of your guesses! Well, it's past my bedtime and I have some chatting to do with my nurses before bed. Talk to you all later,
Cohen
"I prayed for this child, and the Lord has granted me what I asked of Him" 1 Sam 1:27
This verse is one that I read over and over while I was pregnant. This verse will be on a sign in Cohen's room. I was thinking about this verse again and yes, I did pray for this child, and the Lord granted me what I asked of him. Cohen is alive and getting well. But, Carter isn't. I prayed for him too, though. I prayed and prayed and prayed for my boys and I know so many of you did too. However, the Lord didn't grant me what I asked of him. So what does that mean? That I didn't pray hard enough? Or believe enough? I don't think so. If God gave me everything I asked for then I wouldn't need him. If I had my way I wouldn't work, I wouldn't know pain, I never would have had to say goodbye to my child. Even though I like to think I do, I don't always know what is best. And I'm not saying losing Carter is "what was best". I will never think that. I know that this wasn't a mistake. Even though it's hard to fully believe sometimes, I know it's true. To say that it was a mistake would be to say that God makes mistakes. And he doesn't. If he did, then he wouldn't be the all powerful, all knowing God that I believe in. Also, in a strange way, there is freedom in knowing that this wasn't a mistake. It frees me from the "what ifs", what if I would have done this, or wouldn't have done that. It wasn't my choice and nothing that I could have done that would have saved Carter.
It might not make sense to some people. But in my heart, I know these things are true. I know a lot of you probably wonder how I can still believe in a God who let my child die. The fact is, I had a really hard time with this after Carter first died. I was so angry. But then some words of wisdom were spoken to me and I realized that God didn't "take" Carter away from me. He is taking care of him for me though. And it's because of Jesus that I have hope in seeing Carter again some day.
Bad things happen. I wish they didn't, but they do. But it doesn't change who God is to me. And my anger, doubts, questions, and emotions don't change who I am to God. It probably actually makes it clearer to me in a way. Jesus Christ is the same yesterday, today, and forever. The things that happen in this life don't change who God is, he is unchangeable. And I am thankful for it. I'm thankful that he still loves me, even though I have been so angry at him. One thing that struck me the other day is that God knows what it's like to lose a child. He knows what it's like to have his son die. And thank goodness that he allowed that to happen. He could have stopped it. But he didn't. And because His son died, my son can now be with him.
So, I was originally supposed to work Friday but they really needed me Thursday instead so I agreed. I came home with Danny tonight and we are pretty glad we did because the water got turned off at the home while they fix some plumbing problem. It was off all day and was still off when we left this evening.
Speaking of the home, we had a note under our door that we had a package so I went to pick it up and it was a big box of paper plates and plastic silverware! Thanks Auntie Eva! I also got an email saying that someone had dropped off some more stuff for as at our church. So thanks to you too (I haven't picked it up yet, so I'm not sure if you left your name on it or not :) Ask and it will be given to you! I feel like I'm starting to sound like a broken record but we truly are so thankful for all the ways that people have supported us on our journey.
Danny and I had a nice little date today. He wanted fish and chips so we went down to the waterfront Ivar's. We sat outside and ate and then walked down along the water. We stopped at that little arcade and played some skee ball. We wanted to get some pictures in one of those photo booths but we only had $1.75 and they cost $2. So we played skee ball instead and won some tickets and got Cohen a little stuffed shark.
Cohen had a good night on his low flow. He has been keeping his O2 sats up without a problem. Please continue to pray that his lungs heal and grow and that his heart doesn't enlarge any more. If he has okay labs on Friday he will get to start breast/bottle feeding and see how he does. In rounds today the Dr said that ideally Cohen would be taking all of his feeds by breast or bottle with NO tube feedings before he goes home. I said that was a nice theory but if that was the only thing keeping him at the hospital and everything else was fine then we would rather just take him home. I'm fine with a feeding tube, especially if it means we don't have to push him. But, we'll see what happens. Maybe he will surprise us again and take his feedings like a champ.
I tried to get the Dr to give me some kind of a hint as to when they think he would be ready but of course they never really give you a date. I realize that he still has some hurdles to get over, but we are hoping maybe sometime in the next few weeks. The nurses have told me to just "be ready", and I have heard this from other NICU moms as well, that sometimes they just decide that today is the day he can go and that you have to take the baby and run before they change their minds. So, I am excited to have cleaning day so that I will feel a little more ready. I will also bring the carseat in with me next time I head to Seattle just to have it there.
A friend of mine from college has generously offered up her husband to come take some pictures of Cohen and I am SO excited. I feel like we have missed out on a lot of the normal parts of being pregnant and having a baby. We have a wall in our house with some wedding pictures on it and I can't wait to update it with some new pictures!!
Some of you have contacted me saying you can't help clean this weekend but have offered to come help another day. I will probably see how much we get done Saturday and then if we need to I may plan another cleaning day. My schedule is pretty up in the air right now so I won't know until later what day that would be so I will keep you updated. Thank you to everyone who offered and is coming to help. I am excited to have a clean house for Cohen to come home too, it's been awhile!
That was kind of all over the place, but welcome to our lives...I left my camera at the hospital so no new pictures today :( A few of you commented on the thermometer in the corner of one of the pictures in the last post...Remember this picture? Pretty cool huh!?
I drove down to Seattle this morning, dropped our stuff off at the home, swang by the hospital, and then drove the car to U-village and dropped it off...again. Hopefully third times a charm and it will get fixed this time! I stopped by the hospital real quick to see Cohen before I dropped the car off because I just missed my boy. I got up to the NICU and saw that the results from Cohen's echo yesterday were on the front of his chart. So I peeked and saw that it said that the right side of his heart is now moderately enlarged, which is worse than it was. The Drs were hoping that it would be smaller, so needless to say I was upset and was sure that when the pulmonologist came they would say that they were just going to keep him on the high flow and wait and see what happened. I went and dropped the car off and on my walk back I just had all these questions and thoughts running through my mind. I was worrying and worrying, thinking that I would never get to take my baby home.
When I got back to the hospital Cohen was in his swing but woke up when he heard my voice. So I held him and took a good nap. The pulmonologist, Dr W (that's a lot shorter then writing "pulmonologist" 700 times), came about 4:30. We also had a medical student, a resident, the senior resident, and his nurse in the room to see what he would say. He came in and listened to Cohen's lungs and watched his work of breathing. Cohen does have what are called retractions when he breathes. If you watch his tummy you can see that he kind of has a "pulling" when he breathes down by his lower ribs. I don't really know how to explain it other than that. After he assessed him, he decided to take off his oxygen completely just to see what happened. Cohen did GREAT! He had no oxygen on for about an hour and he never dropped his O2 sats below 90%!! Dr W said most chronic lung babies like him will live at about 70-80% on room air (no extra oxygen on). Cohen even took a big poop with no oxygen on and still didn't drop his sats :) I think he must have wanted to impress his crowd. Anyway, he did really well and so Dr W felt comfortable not only taking him off high flow but changing him to low flow! So Cohen is now on .25L at 100%, which is a level that he could go home at...YAY! They will leave him there to see how he does and check a blood gas Friday to make sure he is still doing okay.
When I asked Dr W about Cohen's heart he said he would be interested hear a cardiologists input on whether the enlargement of the right side of Cohen's heart (RVH) is caused by the lung disease or by his PDA. It really could be either and I have no idea how they would tell, but it's something I may bring up in rounds tomorrow to see what they say. Dr W said that it's not great that Cohen's heart is enlarged, but it's kind of similar to Cohen having chronic lung disease. It does show them that he is still a "fragile" baby. However, at this point there is nothing that they would do to treat it. It's something that will hopefully not get worse and that as his lungs get better (if that's what is causing it) that his heart will get better with time. He will follow up with a cardiologist and a pulmonologist when after he goes home.
{Cohen could barely keep his eyes open after all the action}
I had also heard that the pulmonologists can be a little stingy with feedings. They often want the babies to kind of be "backed off" on their feedings. The UW doctors had suggested doing drip feeds at night where he just gets his food continuously so he doesn't have to wake up and be hungry or get a big bolus of food and have to digest it. This would let him rest a little more and conserve some energy. BUT Cohen gets to keep doing what he's doing and then if he does okay with his new oxygen rate then he will get to advance feedings a little. Right now they just want to see how he does with the lower oxygen before they change too many things.
The UW Drs also had been throwing around the idea of steroids to decrease lung inflammation or adding another diuretic to get rid of any extra fluid and make it easier for his heart/lungs. However, Dr W thought Cohen was doing well enough to not need either of those! Yay!
This morning I was just preparing myself to be disappointed with Dr W's visit and we were actually very pleasantly surprised! It's nice to have a fresh pair of eyes see the situation. And also, Cohen isn't a preemie anymore, he's a big boy. Dr W works at Children's and sees chronic lung babies all the time where as the NICU is used to little tiny babies. It was just nice to have a new perspective and someone willing to try something new and see what happened. I was SO SO SO happy to have him down to a level of oxygen that he can potentially go home on. I was practically skipping out of the hospital. I immediately called my mom because I had texted her when I found out that Cohen's echo looked worse. When she heard that she called my brother and a few of her friends asking them to pray. And they must have, because this day turned out way better than I had anticipated. I don't think I could have handled anymore lack of progress or bad news. We are incredibly thankful for all the care Cohen has gotten at UW and how far he has come, but we are so ready to see him not struggling and to be getting better. It's hard to watch your baby struggle and be sick. We know he will do well when he gets home and we just can't WAIT to get him there. I am feeling a little more optimistic that that may happen sooner than his 4th birthday.
Whew, I know that was long and the bottom line is: we are excited! Prayers have been answered! Please pray that Cohen does well on the new rate and that his heart doesn't get any larger. And for patience for us :)
I had my first day back to work today and it was actually good! I was pretty nervous on my way in just because I had no idea what to expect or if I would remember how to do my job. I did mostly remember what to do, although I did try and get ice out of the blanket warmer. There were lots of hugs and "good to have you back"s which is just what I needed. Thanks guys! I guess they had been printing out some pictures from the blog and had them up on the bulletin board. It was really nice to be Jana, RN. A good change of pace from Jana, exhausted mommy of an angel baby and a NICU baby. Of course I am still those things, but it was just nice to be able to step outside of my own little world I've been in and help someone else for a little while.
Cohen has his pulmonologist consult tomorrow so please pray that we will be able to ask questions and get some good answers as to "what's next" for Cohen. I realized today that a lot of people don't quite understand what is going on with Cohen's lungs and that he has chronic lung disease and is trying to grow new lungs. Honestly, I don't understand it all either and that's something I am hoping to get a little more information on tomorrow. I have pieces of what I think is going on with his lungs but I'm not sure I understand the big picture. So that's something I hope to get a better understanding of. The pulmonologist is supposed to be there around 4:00 pm so I will head down in the morning to see my little chub who I miss like crazy!
Also, I went to see my therapist before work (I only worked half a shift) and on my way in I found a $20 bill on the ground! It made me pretty happy, although I felt a little guilty, but I don't think anyone was going to come back in the pouring rain for it. I feel like God was saying "See I'm still taking care of you and providing for you. Even in ways you don't expect". So on my way home from work I stopped at the Green Barn and got some apples, pears, and peaches to go with our dinner and some scones from the Lynden Dutch Bakery for dessert. Oh, and I forgot to mention that when I got in my car this morning I found the cutest pair of pink/purple knitted slippers on my seat. I am secretly (not so secret anymore I guess) an old lady at heart. Those of you that know me well know this already :) I knew it was going to be a good day between the slippers and the $20 bill.
Sorry, no pictures today but there will be tomorrow I'm sure! Speaking of pictures...I really want to get "newborn" pictures of Cohen. I really regret not getting maternity pictures so I don't want to miss getting pictures of Cohen at this stage of his life too. I know I take a million, but I want some nice ones that also incorporate a little of Carter too somehow. Any ideas? Do photographers make hospital calls??
I got a call from Cohen's attending Dr while we were at home. Cohen's last blood gas was about the same as his last one. Not better, not worse. So, since they decided not to wean his oxygen they have actually turned him up since he isn't going to be coming off the high flow. He got another dose of Lasix (the diuretic) because his weight was up quite a bit so they think he might be retaining some fluid. They threw out the idea of giving him another steroid burst to see if that would just kind of give him the extra push he needs to require less support and get off the high flow cannula. Before we were told that the pulmonologists from Children's wouldn't come see Cohen until right before he went home. However, now they think (and I agree) that it would better to get them involved now and see if together they can help Cohen make a little more progress. He is kind of getting to this "stuck" phase where he isn't getting worse but he isn't getting better. The pulmonologist will be here Tuesday to see Cohen and hopefully they can come up with a plan.
{I'm so hungry I could eat my whole arm!}
Cohen is getting to be a real "newborn"! He got to sit in a big boy swing (his first time was 9/22) and he loved it. He just sat there looking around with his big wide eyes.
Cohen has been a busy boy today. He got weighed and then got a bath. Danny went to the Husky game with his friend Ryan while my friend Kim was here visiting.
{Pep talk with mom before bath time}
{Tuckered out...Dad dressed him in his football onesie for game day}
Back when the boys were born, one of my close friends' family sent us these little boxing gloves. One pair for Carter's fight and one pair for Cohen's fight. I LOVE them! Almost everybody that comes in comments on his little boxing gloves. They have been hanging in Cohen's room for quite some time so we decided to put them on him today. We didn't actually put them on him, just put them in the sleeves of his onesie.
This morning I made pancakes. It might seem like an uneventful thing to most of you, but for me, it was a pretty big deal. I got out of bed and made my own meal. And then I cried. I cried because I imagined having my boys in the kitchen with me while I made pancakes for them. Then I realized that that would never happen. They will never be running around my feet together playing as I try and make breakfast. Of course Cohen will be causing a ruckus I'm sure (someday) but we will never have "the twins". I won't set up two high chairs with two sippy cups.
From the kitchen I went to the computer chair and stared out the window for awhile. It was a rainy day today and I'm not going to lie, I like the rain. It seemed to suit my mood today anyway. As I was staring out the window at the rain falling on our patio I saw a football sitting outside. And again I thought about how I will never see both of my boys outside playing football with their dad. They won't wrestle each other on the lawn. I won't know if one was faster than the other. Or if one was better at throwing and one at catching the football. These may seem like insignificant things to most of you, but when it's something you will never know about your child, then it becomes a big deal.
Grief is a weird thing. Some days it seems almost unbearable, like I just can't find the strength to keep going. And some days it seems a little farther off and I allow myself to focus on other things. Sometimes it sneaks up and catches me off guard and I walk down the street crying. Or get out of the shower sobbing. Or lay in bed awake and think of the twins we should have had. I think about my baby boy that I will never get to see grow up with his brother. We are mourning for Carter and we are also dealing with the loss of "our twins" and that a part of us, especially Cohen, is missing. I have come into contact with people that have lost a baby or babies. I can't imagine losing both of my boys and I am so, so thankful that we have Cohen. I think this whole experience has made me realize how special babies are and that they truly are gifts from God. I know that I would have loved my boys no matter what, but now I think that I love them so much more because I know how precious their lives are (were?).
One thing that also kind of surprised me about this whole journey is how open I feel like I've been. Before all of this I was not a share your feelings kind of person. I kept a lot of things inside. And now, I feel like I want to share the things going on because it helps me process and maybe it will help someone else too whether someone experiences something similar themselves or if it is through a loved one. Maybe it will help someone know how to help the friends or family grieve. Maybe it will help them know that the feelings we have are normal. Or even to help to know what to say or not to say. I don't know, I just hope that maybe somehow God for good in some way.
Cohen had his ROP check today and his eyes are still the same. It's good that they have been stable for the last few checks (he gets them every 2 weeks) but they are hoping his eyes will start to look better instead of just staying the same. Cohen will get a blood gas in the morning to see if they can wean his oxygen.
The plan is that next Friday Cohen will get another echo and then once the results of that are back, the pulmonologists from Children's will come see Cohen and hopefully help make a good plan to get this boy out of here safely! They will also get a chest xray just because he hasn't had one in awhile and they want to see what his lungs look like. So please pray that his heart will look better and not more enlarged and also that his lungs will continue to grow so that he can get weaned on his oxygen.
Cohen weighs 7 lbs 6 oz at his last weigh in. He has graduated from his newborn diapers up to a folded over size 1 diaper. I can't believe how big he is getting! He is starting to stay awake for longer periods of time. He has also been picking up his head and turning it over when he lays on his tummy. I think that he is starting to think about rolling over. When he is on his back he rolls over onto his side but then gets stuck. I am just so proud of him and how far he has come! We can't wait to get him home.
So many people tell me how strong I am and how they don't know if they could ever be so strong. I saw this quote somewhere and I guess I think it's true. "You never know how strong you are until being strong is the only choice you have". What other choice do I have? There are many times when I don't want this to be my life. I never imagined that at 26 years old I would know what it's like to lose a child and to have gone through having a NICU baby too. Lots of times I'm not strong. I have many weak moments, hours, and even days. There are days I don't want to get out of bed. But, I don't have a choice but to pull myself up and keep going. There are times when I allow myself to fall apart. I don't feel like staying there is a choice that I have. I have a husband and a son that need me.
I wish that I did have more time to grieve Carter. So far we haven't really had a lot of time to do that. Life keeps moving and I just feel like we haven't had time to slow down and really mourn our loss. I want to grieve Carter. I feel like it's important because he is so important to us. When I asked for book suggestions, some of you mentioned going to a GriefShare group. There is a group in Lynden so I am going to try and start going to that. I think it will be good for me to have an actual time to set aside for grieving. I don't want this to offend anyone or say something that isn't true...but I feel like parents who were pregnant with one child and lost that child are in a different situation. They lose their baby and they go home and start their new normal and the grieving process. I don't feel like that has been the case for us. While we lost our baby, we also still have a baby that needs us. A lot of our energy has gone to what Cohen has been going through and I feel like whatever is left over goes to grieving. I know it's not right, but it's our reality right now. Carter is never far from our minds and there is some grieving and processing that goes on in the midst of everything else. I've never been in this situation before and I don't know what the "right" way is to do things (or if there is one). I think we are just doing what we have to do survive and keep going. I think going to GriefShare will be a good to make time to be with other people who know what it's like to lose a loved one and to process some of the feelings and emotions we are going through. Anyway, that's my little ramble for tonight.
I had a long talk with Cohen's attending Dr this morning. Usually they send the residents in to chat but they answer a lot of my questions with "I'll have to talk to someone with more experience in that area"...ok fine, just get me that Dr in the first place! No, really, they are usually all very kind but it gets old to get a new resident every 2 weeks and I know they are learning. But, after you've been stuck in the hospital for a long time it just wears me out.
Anyway, Cohen had another good blood gas this morning but they decided not to wean him. As I've mentioned before, because of his heart they really just want to take it slow. The point where he is at now with his heart and lungs the Dr said she has seen babies go either way. Sometimes if they get pushed too fast it can get their heart in trouble which can make them really sick. She has also seen babies who get pushed and do fine. They just don't want to take any chances at this point. He will probably get another echo in a few weeks rather than his one a month that he usually gets.
{No pants Monday}
Cohen gets another blood gas on Thursday and if it's good then they will probably wean him. If his blood gas is good, they may also change his feedings to bolus feeds. So instead of having it on the pump to go in over an hour, they will just put it in the syringe to gravity which usually takes about half an hour. They will see how he responds to this -- whether his respiratory rate goes up, or he gets reflux, or needs higher amounts of oxygen. He will be watched for those things to see if the bolus feeds are too much work for him or if he tolerates it okay. If they switch him to bolus feeds he will probably also be changed to continuous drip feeds at night. So instead of getting a big amount of food all at once he will get it continually like he used to. This will let him rest at night and hopefully get some good sleep without waking up to be hungry and then digesting a big bolus of food.
In other news, I think I am going to go back to work next week! I know, seems kinda crazy. Some of you know this, but I work at a surgery center as a pre and post op nurse. I was working full time but recently quit and am now per diem which means I get to say days that I am available and then if they need me those days I work. Since Cohen is going to be in the hospital a few more weeks I am going to work maybe 1 or 2 days next week just to kind of get back in to some kind of "normal" activity in my life. I have gone back and forth about this decision quite a bit. Obviously it will be hard since Cohen is still in the hospital, but also when he first comes home I probably won't be able to (or want to!) leave him for awhile. So I feel like now is actually a good time to kind of get my feet wet again in that area. There has been hardly anything normal about the last 4 months of my life and I feel like this is something that will help me kind of keep moving forward. It's something that I can control and it kind of puts me back into the real world.
{Caught in the act}
Thank you to everyone who offered to help clean...I am trying to figure out which day(s) work best for people. I am still accepting help if anyone wants to! :)
It's been a few days since I've done a Cohen update. There isn't too many new things going on because they are moving verrrrry slowly with all of his changes. I went in on Friday and he was getting his echo done and was just sound asleep through the whole thing. His echo showed that he still has a moderate PDA, the size hasn't changed at all. The right side of Cohen's heart is mild to moderately enlarged. At his last echo it was only mild, but the Drs said it may be slightly bigger or it may just be a matter of who is reading the ultrasound. Because of his lung disease, his heart has to work harder to pump blood to his lungs and that's what makes the right side of his heart enlarge. The worry is that if it gets too big it will just poop out and he could go into heart failure. We have been told that he isn't to that point yet, but that it is something they will continue to watch closely, and they would like to see the heart decreasing in size instead of possibly increasing.
Right now Cohen is on 2L of high flow oxygen at about 30-40%. He is getting his blood gases every Monday and Thursday and then they decide if he can get weaned. They are weaning him down really slowly because of his heart. They don't want him to go down on his oxygen too quickly and then get in trouble and have to go back up.
So that's where we are at. We obviously want what is best for Cohen, but it's also frustrating to just not be able to take him home. Cohen is 15 weeks old today. He is 7 lbs 3 oz and growing.
Everybody always asks what they can do to help and honestly, I'm not very good at accepting help. I've always been an "I'll just do it myself" kind of girl. I know we need help...but some of the things that would be nice or things we need just seem kind of weird to ask for...like paper plates and utensils for the home since sometimes there aren't enough dishes and it's just easier...or dinner...or a ride home from the hospital because I used to walk but it gets dark so early now...or someone to help me make birth/coming home announcements...or if you have asked me to be somewhere/do something at a certain time or place please remind me multiple times...
I think my biggest thing right now is that we need to do a big house cleaning before Cohen comes home. We need to de-fur the house from Russell and also clean it from 4+ months of neglect! Cohen's breathing is one of his biggest issues and also he has no immune system so I want the house to be sparkly clean. If you are around Lynden and it's something you would be interested in helping with, I'm thinking of having a cleaning day Oct 1 (Saturday) or maybe Oct 6 (Thurs) or maybe both! Also, we want to get our carpets cleaned so if anyone has access to a carpet cleaner that would be helpful too.
So, there you go! I'm asking for help. If you are interested you can email me at jana.rinehart@gmail.com or if you have my phone # you can text/call me. Thanks in advance!
Karen and Mrs. Smith (she is going to scold me for still calling her that...) threw me a "Due Date Party" on Sunday Sept 11. We got to celebrate Cohen and how far he has come and also remember Carter. We brought the Build-A-Bears we had made for the boys when I was pregnant. I also brought the pictures of Carter that the NILMDTS photographer took. I was happy that there were 2 "It's a boy" balloons too. We got lots of fun presents and also some thoughtful gifts for Carter too. It was a perfect day and it was nice to have something to look forward to.
{Mrs. Smith - Gramma 2, me, Karen, Mom, and Christine}
{The Girls}
{Playing smell the melted candy bar in the diaper and guess what it is}
It's here! And, overall...I think the days leading up to it were worse. Thank you to everyone who was thinking of us today and for letting me know that you were! I couldn't sleep last night so I called Cohen at midnight and had his nurse hold the phone up to his ear so I could tell him Happy Due Date.
Cohen is 102 days old. We spent our day snuggling, listening to lullabies on pandora, reading stories, skyping with one of my very good friends who lives in Wisconsin, and comparing footprints from the day he was born and today. I am amazed at how far this little boy has come.
Remember this little boy who weighed 1 lb 8 oz? The little boy who could wear his Gramma's wedding ring on his arm...Whose blood pressure cuff was the size of a bandaid...Whose preemie diapers had to be folded in half...Who had some kind of IV line in 3 out of 4 limbs...
Can you believe that little boy is now this big boy?
Well, it's almost here. Tomorrow is my due date. As with the rest of our journey, it comes with a lot of mixed feelings. Cohen will be 102 days old, which is almost unbelieveable. Tomorrow is the day that all of our hopes and dreams should have come through. We would have welcomed our two healthy baby boys into the world. We would have counted their fingers and toes and held them next to each other so we could see if they really did look alike. We would have had our family there to share in our joy. We would have passed the boys around so everybody could ooh and ahh over them. We would have put them in their matching "wombmates" onesies. We would have heard them cry when they were born. There would have been tears of joy. The day your children are born is supposed to be one of the happiest days of your life.
Honestly, the night the boys were born was one of the hardest days of my life. We were so afraid. And our worst fears came true. Our hearts were very heavy and full of pain as we said hello and goodbye to Carter and worried about whether Cohen would make it through the night. There were lots and lots of tears, tears of pain and sorrow. I didn't even know it was possible to hurt so much
I haven't talked about the night the boys were born very much. It's just too...fresh? Painful? Private? Heartbreaking? Blurry? I'm not quite sure. I didn't get to see either of my boys immediately after they were born. They were both whisked away to a separate room where they each had a team of people working on them. I didn't see them, I didn't hear them cry, I had no idea what was going on with them.
After about 20 minutes I remember a face coming in and peering at me as I lay on the operating room table and telling me that they had been working on Carter and it didn't look like he was going to make it. We haven't talked much about what happened with Carter that night until recently. There are things that I just haven't thought to ask until now. I think my mind couldn't take dealing with any more emotions until recently. In some ways, I think I was spared some trauma in not having to see them working on Carter. Danny says it is the worst thing he has ever seen in his life. He says that he is glad that I didn't have to see it. That he doesn't know if it would have made things easier or harder for me.
I never got to see my son alive. I didn't get to hold him or be with him when he died. I desperately wish I could have been there for him. It breaks my heart that I didn't get to be with him as he passed from this life into the next.
I think one of the most difficult things about losing a child is losing dreams. We had so many hopes and dreams for our boys. When I lost my Gramma almost 4 years ago, I was devastated. But, I was able to celebrate the memories that I had with her. She lived a good life and I am so thankful for the time I got to spend with her. When a baby dies, especially shortly after birth or before they are born, there just aren't those memories to hold onto. My memories of Carter consist of 5 months of pregnancy, the day of, and the day following his birth. All I have left of my son is a notebook of his pictures and a small box filled with little things from the night he was born. His hand and footprints. A few tiny hairs from his head. A little shirt that they put on him. The tape measure they used to measure his length and his head.
I remember someone bringing Carter to me and putting him in my arms just as they were about to wheel me from the OR to my room. I remember sobbing. I didn't care who was watching or what was going on. All I knew was that I had lost my son. I didn't even know it was possible to feel so much pain or to cry so hard. It felt like my heart was being torn out of my chest. It felt like an awful dream that I would have given anything to wake up from. As I looked at my perfect, tiny baby boy I was sure he was just sleeping. He looked like he was taking a nap and that at any moment he would wake up. We stroked his fingers, admired his toes, and looked at his scant amount of hair. He never woke up. I would have given anything in the world to see my baby wiggle his fingers, open his eyes, yawn and stretch or to hear him cry. Parents aren't supposed to outlive their children. Losing a baby sucks.
Having a baby is wonderful. Having a miracle baby who has fought through tons of terrible things makes him even more special. Cohen makes me smile. When I hold him, I just can't believe how much I love him. I love his fluffy hair when I brush it. I love the dimple on his right cheek. I love that he always smiles at the appropriate times as if he knows exactly what we are talking about. I love when his daddy falls asleep holding him. I love his chubby hands and feet. I love his kissy lips face that he makes. I love that he is a fighter. I love that he is a twin and that we get to tell him about his brother. I love both of his chins. I love him so, so much and I hope we can be the parents that he deserves.
Cohen is 101 days old today! I can't believe it. This morning I came in and found out that he had a huge blowout just for me. There was poop all up his back and all over his clothes. He earned himself a bath! What a way to greet your mother at 8:00 am! Especially since she had to get up early and take the car back to the shop to see if it can get all the way fixed and then walk to the hospital from u-village. In sweatpants and with my hair a little wild. If you have seen my "morning hair" you know what I'm talking about. Oh well. At least this time I wasn't walking down the street crying.
{This was last weekend, but still exciting! Auntie Christine's first hold}
We have been talking with the Drs quite a bit about the "what's next" for Cohen. Obviously we are getting antsy to bring him home but that doesn't seem to be realistic for right now. The Drs said it will probably be another 4-6 weeks. Sigh. I am trying not to focus on the fact that that means another 4-6 weeks at the home, another 4-6 weeks away from Danny. Another 4-6 weeks of driving back and forth. Another 4-6 weeks of eating out. Blech. We will probably start to ask a few more of you if we can come over for dinner! :)
{Grampa's first hold}
Cohen has another echo on Friday which will help them know a little more. If the right side of his heart is looking smaller that would be a good thing and would mean his heart wasn't having to work quite as hard to pump blood into his stiff lungs. They will also check to see how his PDA looks. It is unlikely at this point that they would do anything to fix it if it was still there. If his heart looks bigger at all then that may be something they would consult a cardiologist at Children's about. We are praying that the right side of his heart is getting smaller and having to work less!
Cohen will have another head ultrasound sometime before he goes home just to check. It isn't a huge concern because the brain bleed he had was a low grade one and was resolving, so they don't anticipate that it would be getting worse or anything. The Dr said that neurologically Cohen "has a very bright future".
Cohen's main issues right now are his lungs and his feedings. Which go together in a way. Because Cohen is at his due date and still requiring a fair amount of support, the Drs here at UW will consult with the pulmonologists (lung Drs) at Children's. He will be followed up by a pulmonologist when he goes home so it may actually be nice to get them involved now. We were told today that Cohen will go home on oxygen (which we were already anticipating) and that he will probably be on it for up to a year.
As far as his feedings, Cohen is growing so well that they are now only weighing him every other day! Today his weight was 6 lbs 14 oz. Those of you who guessed 10 lbs (that's my guess) for when he goes home will be pretty close, I think. He still gets to practice breastfeeding after I pump so that he still thinks he is getting to eat. One of the big thing to keep in your prayers is that Cohen doesn't develop an oral aversion. This can happen to babies who are on feeding tubes long term. Since Cohen is getting fed through a tube, he doesn't get the true experience of eating and sometimes after a while they can decide they don't want to try anymore and aren't interested in eating. So, we are trying to give him positive oral experiences. He gets to suck on his binky or be at the breast when he is getting his tube feedings. We put little drops of milk on his binky or in his mouth so he still gets to taste it.
I have a lot of things floating around in my head today as my due date is tomorrow. There will be more than one post today as this is kind of how I process things. I also have pictures from my Due Date Party I had this weekend that I want to put up! Cohen looks very grown up today, but in my haste to get the car in this morning I forgot the camera so I will try to put up more pictures later. I know that's really what people come here for :)
As some of you know, we took Danny's car in for its "checkup" and we were told we needed new tires. Shortly after that, our other car decided to act up. We decided to put off the tires until we figured out what was wrong with the other car. On my Mad Day, I had emailed our pastor's wife and was telling her a little of what was going on. She sent me an email back saying they had a brand new pair of tires in their garage. Turns out, she dropped off the tires, they got put on our car and we are good as new! I am so, so thankful for the ways that God has been providing for us. Just as we are thinking that there is no possible way we can get new tires and pay to fix our other car, a pair of tires shows up! It really is a huge load off of our shoulders to have that taken care of. Now to get our other car fixed for real...
Shortly after we had the boys, my aunt set up a "Kimmel Fund" and sent out a letter to our family and friends. She took care of everything and we didn't know the "who" or "what" of any of it until recently, we only knew that our bank account wasn't getting as empty as it should have been. She kept track of all of it and sent it to us and we could look if we wanted or it could just always remain anonymous. I really wanted to be able to thank the people who have helped us and so we peeked. Now I kind of wish I hadn't because there is no way we will ever be able to thank you all enough. We were absolutely blown away by the kindness and generosity of the people around us. Danny and I had to fight back some tears because we just had no idea. So, thankyou Auntie Cubby for organizing and taking care of the the Kimmel Fund and thank you to everyone who gave financially. It truly has been such a blessing to us and has helped to lighten our load.
We have also been supported in SO many other ways. Our church family has taken excellent care of us, mowing our lawn, feeding Danny, visiting, and praying constantly for our family. We are so thankful for you guys! There have been many, many others who have also blessed us...leaving food in the freezer, coming to visit, giving us books, sending emails, texts, cards, and letters. It all means so much to us!
One other thing that really touches my heart is when people have told me that they have gone to see Carter's grave, or I go visit there and see little flowers left there for him. I usually don't know who they are from but it just makes me smile when I know there are other people remembering and visiting our little boy.
Thank you to everyone for giving of yourselves, your time, prayers, finances, and for loving and caring for us. I know have said this before, but we truly believe that this incredibly difficult time would have been that much harder without all of the love and support we have been shown. I am a little behind on my thank you cards, but please don't think that it doesn't mean we aren't thankful. I don't think we will ever be able to fully express our gratitude for everything that has been done for us. In the midst of both our pain and joy, we know that God has really been taking care of us and blessing us in a huge way through our family, friends, and even strangers!
Football season has started and I have mixed feelings about it. Actually, I don't have mixed feelings. I have a strong dislike of football. But, Danny enjoys it and I'm sure someday Cohen will too. The only thing I enjoy about football season is that we usually get to watch the games with family and friends and that there are usually good snacks.
I have quite a few things on my mind so this might be a little random...
1) We got the car back from the shop. Sort of. They said there was a part on the transmission that was warped so they replaced it, put the car back together, and took it out for a test drive. It was still making the same noise. They wanted to keep the car and take the transmission apart again to figure out what was wrong. I said no thankyou, we need the car. The guy was really nice and I don't think he was trying to pull anything over on us. He said the car was safe to drive but that he didn't want to give it back to us not completely fixed. I told him our situation and that we just couldn't be without a car anymore (it had been there a week). So, he wants Danny to bring the car back in the next time he is down so that they can finish fixing it. Danny and I were talking about which car he was going to drive down today and I asked him which he would rather have...his tire blow up or his transmission to fall out on the freeway. Such is our life these days! Sometimes all we can do is laugh because if we didn't we would fall apart and walk down the sidewalk crying (again)
2) Thankyou for your comments and emails about book suggestions. I am looking forward to picking some to read.
{Mom shoved me in my dino jammies yesterday but they were too small! Must be all the cake pops I've been eating...}
3) The contest to guess Cohen's "going home" weight is still going! There really is no prize, but it's fun
4) A Cohen update: He had a good blood gas this morning but the Drs are going to leave him on the 3L high flow through the weekend just to really let him rest and concentrate on growing his lungs.
Anyway, his respiratory rate has been lower than it was and he seems to be breathing a little easier. He has been sleeping quite a bit and having a lot of "quiet" days which we hope means he is using his energy for growing! The nutritionist gave us a graph of his growth and he finally has a nice upward trend. He is finally on the chart! I'm not exactly sure how to read it, she explained it to me, but I forget what it means. I think it means he has finally crossed over the 10th percentile of babies born at his current gestation (39 weeks). I could be off on that, but I think that's what she told me. Some things tend to go in one ear and fall out the other side...
He had another ROP (eye) check yesterday and his eyes are still the same. They haven't gotten worse but they haven't really improved either. He gets another check in 2 weeks and hopefully his eyes will be improving. He also is due for another echo to look at his heart next week. We are hoping that the right side of his heart isn't getting any larger because of the work of pushing blood to his stiff lungs. Maybe it will even be improving and getting smaller.
Cohen's Drs and nurses have said that he probably won't be home for another few weeks to a month. We are planning on him coming home on oxygen and possibly a feeding tube. The way it seems to be looking right now is that if we want him home sooner then he will come home on a feeding tube. He may be able to breastfeed some, but because of his lungs and how much energy it takes for him to nurse or take a bottle, it might be easier to not push him on the feeding and just continue to do some tube feeding. Probably it would be us letting him either nurse or bottle feed as much as he could and then giving him the rest in his tube. But, he still has a little while so who knows what can happen between now and then! We just can't wait to get him home!
5) I think that God really speaks to me through music. I think I first heard this song when I was in college and it makes me cry every time. Especially now that I know Carter is with Jesus...the "fly to Jesus" part makes be bawl because I imagine my little baby flying to be with Jesus.
6)This last week has been hard for me and I think part of it is that I am nearing my due date. 3+ months after our boys were born my due date is finally coming. It's bittersweet. I am so, so thankful for my little miracle baby. Even on the worst of days, when I hold Cohen, it seems like I can keep going. I can take one more step. My due date is a little bitter because it's the day that I should have been welcoming both of my boys into this world. We should have been waiting with anticipation instead of fear. This is not at all how I imagined it would have gone. But, it did. I can't change it. I am trying to rest in the knowledge that this is all still in God's control. It is incredibly amazing to me that God truly does knit babies together in their mothers' wombs. I think that this is just one of the things that really confirms to me that God is real. That he carefully creates each baby, over time, and that even when they are born so early, they are still perfect little beings.
So, after my horrible, no good, very bad day yesterday I decided it's time for something different. The Drs are saying that Cohen may be home in a few weeks to a month (obviously they can't give us an exact date and time...it just depends on Cohen). As you know, he is growing like a weed. Today he weighs 6 lbs 5 oz. I keep telling the nurses he is going to be 10 lbs by the time he goes home! So, I thought it would be fun to have a little contest. Put in your best guess as to how much Cohen will weigh when he goes home! Whoever is closest wins....an autograph from Cohen?
And, just for reference:
June 5 - 1 lb 8oz, 13 inches
July 5 - 1 lb 15 oz
August 5 - 3 lbs 3 oz, 15 inches
Sept 5 - 6 lbs, 18 inches
So go ahead! Guess how much this little pudge will be when he finally gets to go home!
{Passed out after he finished practicing nursing yesterday}
I'm mad that our car is still in the shop. I'm mad that it is going to cost an arm and a leg to fix it. I'm mad that we can't quite seem to catch a break. I'm mad that I don't get to be with my husband. I'm mad that I've been living away from home for 4 months. I'm mad that my baby is still weeks away from coming home. I'm mad that I see so many other people that are either pregnant or pushing their happy little babies around in their strollers. I'm mad that they probably don't realize how lucky they are. I want to push my baby in a stroller. I want to push both of my babies in a stroller. I'm mad that I can't just get away and turn off my brain for a week or even a day. I'm mad that I feel like I have nothing left to give to my family. I'm mad that I'm mad.
I'm pretty exhausted tonight. The car is still in the shop. Danny doesn't get to come down until Friday. We wore Cohen out yesterday. Grampa and Auntie Christine got to hold him and Auntie Karen took lots of pictures of him for his birthday. We put him back in his crib and left about 3 yesterday afternoon and when I called to check on him last night he was still asleep. This little chub weighed in at 6 lbs and measured 18 inches long for his 3 month birthday. Does anyone have any suggestions for books on grief/loss? I would love some suggestions if anyone has any.
We can't believe you are 3 months old!! In some ways it feels like you should only be 3 weeks old and in some ways it feels like you should be 3 years old! You are 3 months old and technically, you still haven't reached your due date! When we look back at pictures of your little 1 lb 8 oz self, it's hard to remember that you were ever that small. Small enough to wear your Gramma's wedding ring on your arm. You are our very special miracle.
We are so, so proud of you. We have never known anyone else who has fought as hard as you through so much. I think in a lot of ways we never knew how sick you were until afterwards. We knew you were sick, but we didn't fully comprehend it. But God did. He knew how sick you were and he sent us so many people who prayed and prayed for our family. You are a very loved little boy.
We don't know why this all happened to you and your brother, but we know that you boys have a purpose in this life. You were given to your Mom and Dad for a reason. You and Carter have already taught us so much. We know that you are making a difference in this world already. We can't wait to see what you will do in your life!
We hope you know how much you mean to us and how incredibly grateful we are for you. You and Carter were the best surprise we could have ever asked for. You caused a lot of trouble from the minute we found out about you, but you were both so worth it. We truly believe that God has some big plans for your life. We hope that you always trust in the Lord. Your life hasn't been easy so far, and you will continue to have trials and hard times in your life. Those are the times that you learn the most about yourself and about the God who made you, cares for you, and gave his life for you.
As your Mom and Dad there are so many things that we want for you, things we want you to experience. There are so many things we want to to teach you. We want you to know about your family. About your twin brother. Your Daddy will of course want to teach you about baseball and football. We will make mistakes, so please be patient with us. But most importantly, we want you to know about Jesus. We want you to know that there is someone who loves you more than we ever can. He created you and cares about you. He knows how many hairs are on your head (and if you take after your Mommy, you know that's a lot!) He knows everything that you have and will think, say and do. He loves you no matter what. Of course you will make mistakes, but nothing you ever do will separate you from his love. You are ours and you are His. Forever. We love you so much and we are so thankful for you.
I can't believe it has been 3 months since you entered and left this world. 92 days since we held you in our arms and said hello and goodbye to you. Three months since we counted your perfect fingers and toes and wrapped you up in a little blanket. We showed you off to our family and the nurses took your handprints and footprints. We talked about how you had your daddy's feet and hands. We laughed and we cried. We are so proud of you sweet little boy. You fought hard. You and Cohen are your Dad and Mom's greatest joys in life. You boys have taught us so much about each other, life, and God. Our lives will never be the same again. For reasons we may never know until we meet the Lord, you didn't get to stay with us. We miss you so, so much. We talk about you often. The other day I was sitting and rocking Cohen and I was thinking about how much you looked like him. Just as I was thinking that, Gramma said it out loud. And as I was agreeing, Cohen got this big smile on his face. Like he knew it too. I bet you two were playing together in his dreams. I sure hope so. We can't wait to tell him all about you.
Your life was short, but you have already made an impact in peoples lives. Especially your Mom and Dad's. You are a very loved little boy. We hope your story is one that can continue to change people's lives. Through you we have learned that God is God no matter what and he is always in control. Through you we have learned that this place is indeed only our temporary home. Your little life has made us long for our eternal life. It has made us so thankful that we have an eternal life to look forward to. It has made us so grateful that we serve a God who has died in our place so that we can live forever with Him (and you!) God has already used you in some big ways, little man.
Our hearts were completely broken that you didn't get to stay with us. But, we know that you are with Jesus and I know that if we asked if you wanted to come back, you wouldn't. I like to imagine you rocking in the arms of Jesus or your Great Gramma (hopefully they take turns!). I like to think about you playing with the angels and dancing on the streets of gold in heaven. Danny thinks you are probably playing a very tiny harp as the angels sing. Although we of course wish you were here with us, we can't imagine you in a better place. We are so thankful that you get to be with Jesus until we can see you again. We love you and miss you so much. You will always be our baby boy and a twin brother to Cohen.
Danny and I had a nice night away. We stayed at our friends cabin in North Bend for a night. It was a nice relaxing time playing games and watching movies. Danny and I had been planning to go on a hike but settled for resting and watching Avatar instead. It's been good for us to get away from the hospital together here and there. We of course miss Cohen, but I think for our sanity it's a good thing. The cabin had a Christmas tree up in it (year round) and it made me so happy. For those of you who know me well, you know I LOVE Christmas so I was pretty excited to see that tree :)
We are back at the hospital now and I am watching my boys sleep. Danny holding Cohen in the recliner chair, both boys snoozing away. Cohen had another blood gas this morning and his CO2 was even higher. So, back on the high flow he went. He is back on 3L high flow nasal cannula. Not what we wanted, but what is best for him. Generally, babies on high flow aren't allowed to breastfeed at all, but our nurse put in a request to the Drs while we were gone since Cohen loves to practice eating. So they made an exception and he gets to practice on a "dry breast", so I pump and then let him nurse but he doesn't really get anything, it's just so he can keep practicing. Two steps forward, one step back. This is life in a NICU. I am trying not to let myself get discouraged. I am trying to keep reminding myself of how far Cohen has come. His Drs explained it saying that Cohen has gained weight nicely and his body has grown but now his lungs need to catch up. We are hoping he will just need a few days on the high flow and that he will be back off of it soon. We are getting quite anxious to bring our little man home and be together as a family, but we also know that we need to do what is best for him.
{Naptime with Dad}
I have a lot on my mind right now. I have had a few cases of the "what ifs". While I let myself wonder about some of the things that happened, I try not to dwell on all of the what ifs. I can't change anything that happens and it wasn't in my control. One of the big things that I have been learning during our experience is that although it's nice that I have plans, they are not always God's plans. Sometimes I think that my plans are better, but then I remember that I am not in charge. I find some reassurance in the fact that there is someone greater than me, who knows better than me, who acts in my best interests. Who does have plans for our lives. I think that God has some pretty special plans for the lives of both of our boys. They have a pretty unique story that I hope can be used in some big ways. We don't know the meaning of all of that we have been through, but I am trying to rest in the knowledge that God has it all in his control.
{Tiger Bum}
Danny and I were talking tonight about the things that happened the night the boys were born. I was crying and telling him how much I missed Carter. And he said "I will never ask you not to miss him. Because we will always miss him." It was just so nice to hear someone say that I never have to stop missing my baby. Sometimes I feel like there is this pressure to move on and that I start feeling better about it. I dont. And I don't think I will ever be "over" losing Carter. Life will go on and it might get a little bit easier, but I will never stop missing him.
