We are so glad Cohen is home and look forward to introducing him to some of his family and friends. However, it is also the beginning of sick season and Cohen cannot afford to get sick. Preemies are at really high risk when it comes to getting sick and it could put him back in the hospital and he could even die. There is a vaccine for RSV and it is really hard to get as it costs $1000 a shot. Cohen will be getting these monthly because he is at such high risk (preemie, chronic lung disease, compromised immune system etc). It is really, really important that he does not get sick this winter. So, as much as we would love to be able to see all of you we have a few rules recommended by our friends in the NICU & Cohen's pediatrician. If you do come over, you will be asked to wash your hands when coming into the house. You will also be asked use hand sanitizer before touching Cohen and to put a blanket over your clothes if you are able to hold him. Obviously, don't come near us if you are sick or have been around someone who is sick!
Please understand that we aren't trying to offend anyone and it's nothing personal :) We just worked so hard to get Cohen healthy enough to come home and would be devastated if he got sick and again or had to go back to the hospital. I will keep posting lots of pictures and videos so you can still get your "Cohen fix" or "an episode of Cohen" as one reader's daughter put it (love that, so cute!). Thankyou for understanding and hopefully in the spring Cohen will get to meet a few more of you. Also, I came across this post on another preemie mom's blog that I thought was a good summary of RSV season.
Sunday, October 16, 2011
Snuggle Time
Updates coming soon...all our stuff is right where we dropped it. The house is a mess already. We are tired. But we don't even care because this is what we have been waiting a long time for. Snuggling is way more fun than anything else anyway.
Friday, October 14, 2011
Contest Winners & First 24 Hours
Well, we have officially been home over 24 hours and are LOVING it. Cohen had a great first night, Danny and I didn't sleep more than 10 minutes combined. We would doze off and then wake up to check on Cohen and make sure he was still breathing, that his oxygen was still connected, etc. Cohen slept in his bassinet right next to our bed and grunted and slept the night away, waking up for all of his feeds except one! He was a pretty tired little fellow yesterday. He slept the entire car ride home, took a bottle, and then slept until 7 in the evening. The Dr said this was normal because that was a BIG day for him, only the second time he has ever been outside the hospital! Honestly, even though I have been tired today, I don't even care.
When I was awake snuggling Cohen last night I just couldn't believe that he was HOME and that he is all OURS!!! Cohen sent Gramma an email about 3 am saying that she was welcome to come over and see him any time. I sent Gramma a text about 5 am saying "Hellllllp" and then she showed up right outside the door! Cohen got some snuggle time in with Gramma and Danny and I got a few hours of sleep. We are SO blessed to have such a great family living close by (almost everybody within 5 minutes!) My sister and Mom had decorated the yard with balloons and a big sign for Cohen when we got home. They had also taken some time to finish decorating in Cohen's room a little and even put up some fall decor around the house. I love it all. It was just perfect to bring Cohen home to. That's the short of it. I have tons more pictures and things that I want to write about to remember this time. We will see if I am up all night and needing something to do or if I am just too busy spending time with my family at home. I just want to remember it all! It has been so great. Thank you so much for all of your prayers. We appreciate them!
And lastly...Cohen weighed 9 lbs 13 oz yesterday when he left the hospital!!! So I think Bridget (9 lbs 14 oz) and Daniel (9 lbs 12 oz) were the closest! Congratulations! You win...the satisfaction of knowing you won :)
{All ready to go...I'm #1}
When I was awake snuggling Cohen last night I just couldn't believe that he was HOME and that he is all OURS!!! Cohen sent Gramma an email about 3 am saying that she was welcome to come over and see him any time. I sent Gramma a text about 5 am saying "Hellllllp" and then she showed up right outside the door! Cohen got some snuggle time in with Gramma and Danny and I got a few hours of sleep. We are SO blessed to have such a great family living close by (almost everybody within 5 minutes!) My sister and Mom had decorated the yard with balloons and a big sign for Cohen when we got home. They had also taken some time to finish decorating in Cohen's room a little and even put up some fall decor around the house. I love it all. It was just perfect to bring Cohen home to. That's the short of it. I have tons more pictures and things that I want to write about to remember this time. We will see if I am up all night and needing something to do or if I am just too busy spending time with my family at home. I just want to remember it all! It has been so great. Thank you so much for all of your prayers. We appreciate them!
{My boys sleeping AT HOME!!!!}
And lastly...Cohen weighed 9 lbs 13 oz yesterday when he left the hospital!!! So I think Bridget (9 lbs 14 oz) and Daniel (9 lbs 12 oz) were the closest! Congratulations! You win...the satisfaction of knowing you won :)
Thursday, October 13, 2011
Gramma Here
Gramma here. Jana suggested a guest blog:
This could and maybe should be a book! I will try to keep it short. This may be all over the place, but I have so many thoughts and emotions tonight, as Jana and I chat back and forth about Cohen coming home, putting him in the CAR and LEAVING Seattle after so many long and emotional months.
I can NOT believe I am writing this BUT in 12 hours Cohen, Jana and Danny will be coming home! It has been a long 5 months for the whole family. Their siblings who miss and love them so much. Their niece and nephews who miss them. We have tried to help them were we could, and support them in their journey.
This could and maybe should be a book! I will try to keep it short. This may be all over the place, but I have so many thoughts and emotions tonight, as Jana and I chat back and forth about Cohen coming home, putting him in the CAR and LEAVING Seattle after so many long and emotional months.
I can NOT believe I am writing this BUT in 12 hours Cohen, Jana and Danny will be coming home! It has been a long 5 months for the whole family. Their siblings who miss and love them so much. Their niece and nephews who miss them. We have tried to help them were we could, and support them in their journey.
Carter:
We are missing our Carter so much. The more we grow to love Cohen, we are aware of the deep loss in our family circle. We will never have a dinner, BBQ, camping trip where we do not miss Carter and long for the time when we can again hold him in our arms.
When Jana found out she was having twins, we said, don’t worry, we will help. When she worried about preemies and being at the UW we said, don’t worry, we will get a condo there or move down if we have to. When she went to the UW on bed rest our long road journey began. Trying to not leave her alone. Danny would leave for work and I would hit the road at 4 am, so we only had to leave her alone and hour. When he was heading down, I would head home. Then the call on June 5, “Mom, are you coming?” Of course, our bags were packed and we hit the road. When we got there and Danny met us in the hall and said “baby B didn’t make it”. The world stood still. We were all in shock. I was so thankful to have Karen drive down with me and on the long drive back home as the sun came up. We were rushed right in to see Cohen. Tiny Cohen, who could wear my wedding ring on his wrist. Then we went in to see Jana, holding Carter. Beautiful perfect Carter. It’s so hard to be the mom and try to keep it together for my daughter. I can never heal this hurt. Kiss it and make it better. Give the right advice. I can just hold her and cry when she cries. Making burial arrangements for a grandchild, NOT supposed to happen. I have never experienced such pain. God had other plans for our family. I know with all my heart He makes no mistakes and loves us so much, but this does not lessen the pain. No amount of food, ice water or cupcakes can take Jana's pain away. It feels helpless at times. I watched Jana fight day after day for the boys. The pain, having so much fluid in her she could not eat of breathe, pain from bed rest, ambulance rides to children's, Forcing herself to eat so the boys would grow big. All the endless ultrasounds, and monitoring. Not sleeping for days. I always say I want to grow up to be half the woman she is! I will never forget the ultrasounds of the last week before the boys were born, Cohen was trying to head out and Carter was always lying against Cohen with his head on Cohen's heart. I know that God is in control. His plan is perfect. Jana and Danny have done more on the parent front the most of us will ever face. I pray that God will continue to bless these dear children of ours.
“the Lord will keep you from all harm-he will watch over your life; the Lord will watch over your coming and going both now and forevermore.” Psalm 121: 7-8
Cohen:
You are coming HOME! I was holding my breath today while we waited for the Dr to check his eyes. We have waited and planned and shopped and had showers and cleaned and now the day is here! I could not hold back. I started crying and could not stop. Jana asked 3 times if I would be ok. It was such happiness and relief, I guess. I cried down the smelly elevators and in line to pay for parking and went to the home and called Warren, Karen and Christine. I could not catch my breath! Cohen, such a strong little fellow. So many days he battled. Now the nurses say how sick he was, and I just don’t think we realized HOW sick. The nurse said yesterday he has so many things that should be problems and they just aren’t! Because of his prematurity he should have “hernias down to his knees”. He doesn't have one! After so long on the ventilator they can have oral aversion, where they don’t suck or eat. He loves his food! and is taking several full feeds by bottle each day. Today I called the nurse over, and said “is he sucking, swallowing and breathing all at once?” (usually it is suck suck breathe breathe) and she said “he sure is!” he is learning quickly. His hearing is fine, kidneys, brain bleed gone. We know his very life is a miracle and each step of the way has been a miracle. He turns his head and follows Jana and Danny's voices. He looks into Jana's face with that baby look in his eyes that just says “I LOVE YOU MORE THAN ANYTHING MOM!” It has been many tears, joys and meeting some of the finest people EVER in the NICU. Those nurses are angels here on earth. We had so many exceptional people who cared for Cohen and Jana and whoever needed it that day.
I will miss: Going to the hospital at 7 am and holding Cohen and watching the sun come up from his window, while telling him all about his family. Cohen passing gas so loud the nurses thought it was me. Coffee at the Trinity Market. If you are ever on Roosevelt in the U district, don’t miss it! This kept me going many days when I thought I just can’t do this, I want to run away, I want to sleep a few days. Watching really stupid TV with Jana.
I will NOT miss: The “home”, the smelly water, parking tickets, parking meters, parking validation, parking garages, People coughing and sneezing in the elevators! Smelly elevators, traffic, rush hour (which is all day in the city) fast food in any form. Not knowing where I am when I wake up,
Don’t get me wrong, we are so thankful for the care at the UW. The finest in the world! Just a season of life I am happy to be moving on from . I am so thankful and proud of my kids, who have helped, given, sacrificed and given again. They are truly a blessing.
I am so happy tonight to be home, knowing that Cohen will be in his home with his beautiful, strong, loving parents tomorrow!
Welcome Home, little buddy!!
When Jana found out she was having twins, we said, don’t worry, we will help. When she worried about preemies and being at the UW we said, don’t worry, we will get a condo there or move down if we have to. When she went to the UW on bed rest our long road journey began. Trying to not leave her alone. Danny would leave for work and I would hit the road at 4 am, so we only had to leave her alone and hour. When he was heading down, I would head home. Then the call on June 5, “Mom, are you coming?” Of course, our bags were packed and we hit the road. When we got there and Danny met us in the hall and said “baby B didn’t make it”. The world stood still. We were all in shock. I was so thankful to have Karen drive down with me and on the long drive back home as the sun came up. We were rushed right in to see Cohen. Tiny Cohen, who could wear my wedding ring on his wrist. Then we went in to see Jana, holding Carter. Beautiful perfect Carter. It’s so hard to be the mom and try to keep it together for my daughter. I can never heal this hurt. Kiss it and make it better. Give the right advice. I can just hold her and cry when she cries. Making burial arrangements for a grandchild, NOT supposed to happen. I have never experienced such pain. God had other plans for our family. I know with all my heart He makes no mistakes and loves us so much, but this does not lessen the pain. No amount of food, ice water or cupcakes can take Jana's pain away. It feels helpless at times. I watched Jana fight day after day for the boys. The pain, having so much fluid in her she could not eat of breathe, pain from bed rest, ambulance rides to children's, Forcing herself to eat so the boys would grow big. All the endless ultrasounds, and monitoring. Not sleeping for days. I always say I want to grow up to be half the woman she is! I will never forget the ultrasounds of the last week before the boys were born, Cohen was trying to head out and Carter was always lying against Cohen with his head on Cohen's heart. I know that God is in control. His plan is perfect. Jana and Danny have done more on the parent front the most of us will ever face. I pray that God will continue to bless these dear children of ours.
“the Lord will keep you from all harm-he will watch over your life; the Lord will watch over your coming and going both now and forevermore.” Psalm 121: 7-8
Cohen:
You are coming HOME! I was holding my breath today while we waited for the Dr to check his eyes. We have waited and planned and shopped and had showers and cleaned and now the day is here! I could not hold back. I started crying and could not stop. Jana asked 3 times if I would be ok. It was such happiness and relief, I guess. I cried down the smelly elevators and in line to pay for parking and went to the home and called Warren, Karen and Christine. I could not catch my breath! Cohen, such a strong little fellow. So many days he battled. Now the nurses say how sick he was, and I just don’t think we realized HOW sick. The nurse said yesterday he has so many things that should be problems and they just aren’t! Because of his prematurity he should have “hernias down to his knees”. He doesn't have one! After so long on the ventilator they can have oral aversion, where they don’t suck or eat. He loves his food! and is taking several full feeds by bottle each day. Today I called the nurse over, and said “is he sucking, swallowing and breathing all at once?” (usually it is suck suck breathe breathe) and she said “he sure is!” he is learning quickly. His hearing is fine, kidneys, brain bleed gone. We know his very life is a miracle and each step of the way has been a miracle. He turns his head and follows Jana and Danny's voices. He looks into Jana's face with that baby look in his eyes that just says “I LOVE YOU MORE THAN ANYTHING MOM!” It has been many tears, joys and meeting some of the finest people EVER in the NICU. Those nurses are angels here on earth. We had so many exceptional people who cared for Cohen and Jana and whoever needed it that day.
I will miss: Going to the hospital at 7 am and holding Cohen and watching the sun come up from his window, while telling him all about his family. Cohen passing gas so loud the nurses thought it was me. Coffee at the Trinity Market. If you are ever on Roosevelt in the U district, don’t miss it! This kept me going many days when I thought I just can’t do this, I want to run away, I want to sleep a few days. Watching really stupid TV with Jana.
I will NOT miss: The “home”, the smelly water, parking tickets, parking meters, parking validation, parking garages, People coughing and sneezing in the elevators! Smelly elevators, traffic, rush hour (which is all day in the city) fast food in any form. Not knowing where I am when I wake up,
Don’t get me wrong, we are so thankful for the care at the UW. The finest in the world! Just a season of life I am happy to be moving on from . I am so thankful and proud of my kids, who have helped, given, sacrificed and given again. They are truly a blessing.
I am so happy tonight to be home, knowing that Cohen will be in his home with his beautiful, strong, loving parents tomorrow!
Welcome Home, little buddy!!
Some of my favorites:
NICU nurses DO rule!
WHO are YOU and WHAT have you done with my mother!!!
Little man likes to help with the bottle
AND NICU nurses are COUG fans!!
The smiles on this day were a blessing. SO happy to be "free" with their baby!
Wednesday, October 12, 2011
Surgery....
...is NOT needed at this point!!! YAY! We do have to come back to Seattle next week for a follow up with Cohen's eye Dr, but his eyes haven't gotten any worse. So, COHEN GETS TO GO HOME!!!! We are so excited, and I'm not sure it has hit us all the way yet. I have been feeling a little off since yesterday so I am at the home taking a little rest and hoping that this is just stress and not the flu or something. But thank you all so much for all your prayers. We are beyond thrilled to be taking Cohen home tomorrow!!!!!!!
Tuesday, October 11, 2011
Free Cohen!
Tomorrow is the big day...we find out if Cohen gets to go home or if he needs eye surgery. His eye Dr usually comes around 3 in the afternoon. Stay tuned...please pray that he doesn't need surgery and that he gets to come HOME Thursday!
Monday, October 10, 2011
Superman
I feel like I just always have so many thoughts floating around in my head. If I leave them in there they just keep floating and keep me awake at night so sometimes I just need to get them out. Cohen is still making great progress on his list. He really only has his ROP check on Wednesday and that's it! I have been feeling rather anxious this week. I think it's the combination of the fact that we could be bringing Cohen home on Thursday or he could be having surgery Thursday. Both scare me. Cohen having surgery is scary for me because it's surgery and because he would have to be intubated again and that terrifies me. I just don't know if I could handle seeing him like that again. And bringing Cohen home scares me. Are we really ready to take care of him and give him the kind of care that he needs? What if we can't do it? What if I'm not a good mom? I feel like I am already so tired and when I get him home there isn't going to be any more nurses to take care of him, especially at night.
Cohen celebrated his 4 month birthday on Sunday! Some days I can't believe he is 4 months old and some days it seems like it's been about a year since he was born. Here are a few things about Cohen at 4 months old (3 weeks adjusted age)
- He has started taking some full feeds by bottle (about 80 mL)
- He is a night owl. His nurses often tell me that he was awake most of the night (this needs to change ASAP!)
- He is such a sweet boy. He hardly ever cries and if he does it's usually just a little whimper
- He wore his first 0-3 month onesie today! It was his Superman onesie. We bought a Superman and a Batman onesie when we found out that the twins were boys. I can't believe how big he is getting
- He weighed 9 lbs 7 oz on his 4 month birthday. Anybody getting close in the contest? I'm thinking probably about 10 lbs if he goes home Thursday
- He grunts ALL the time and has terrible gas (he is really going to appreciate that little fact some day)
- His current favorite books are: Goodnight Moon, Peter Rabbit, The Going to Bed Book, & Perfect Piggies
Speaking of Peter Rabbit, when Danny and I went in to pick out Carter's head stone, they gave us a little book of pictures to look through for what we wanted on it. We both saw the same little Peter Rabbit picture right away. Peter Rabbit was one of the first books that Gramma R brought to Cohen in the NICU. Danny read it to him almost every night. So, when we saw that little Peter Rabbit picture, we knew we wanted it on Carter's marker as a way to kind of connect the boys. As for Carter's head stone, we really are glad that it finally came in. I know yesterday's post sounded a little...angry, upset, sad. And I was and still am. I hate that my son has to have a headstone and that we have to go visit him in a cemetary. But we really do like the way that it turned out. I love that they were able to put his actual little handprints on it. Thank you again to those of you who go and visit his grave and leave flowers. It always warms my heart when I know someone has been there to say hi and remember my baby.
These last few days have been pretty emotional for me. I have mentioned before that there is a set of twins in the same room as Cohen. I'm not sure if I talked about how they closed Cohen's regular room for cleaning so Cohen was moved into another room and isn't in his "private suite" anymore. So, now it's harder for me to get away and hide, especially when the twins' parents come in. I feel like I am kind of able to handle it when the mom isn't there, but when she is, it just is really hard for me. It's hard for me not to be angry at her. I know it isn't fair to her and she hasn't done anything wrong. But she has both of her babies and I don't. I had to leave the hospital today because I just couldn't take it. And then I was frustrated because I wanted to be with Cohen because he gives me so much hope and comfort, but he was in the exact place that I didn't want to be. Also, as we move towards bringing Cohen home we are SO excited. But there's also a part of me that just keeps thinking about how we should have been bringing both our boys home. There should have been 2 carseat tests, and two bags of baby clothes, and we should still have two cribs set up. I think it's really hitting me hard this week that we don't get to bring both our boys home and start our life of having twins. I have a feeling it's going to continue to be a pretty difficult week. But, there will also be joy in the fact that we will (hopefully) be bringing Cohen home SOON!
{Even Superman needs a nap}
Cohen celebrated his 4 month birthday on Sunday! Some days I can't believe he is 4 months old and some days it seems like it's been about a year since he was born. Here are a few things about Cohen at 4 months old (3 weeks adjusted age)
- He has started taking some full feeds by bottle (about 80 mL)
- He is a night owl. His nurses often tell me that he was awake most of the night (this needs to change ASAP!)
- He is such a sweet boy. He hardly ever cries and if he does it's usually just a little whimper
- He wore his first 0-3 month onesie today! It was his Superman onesie. We bought a Superman and a Batman onesie when we found out that the twins were boys. I can't believe how big he is getting
- He weighed 9 lbs 7 oz on his 4 month birthday. Anybody getting close in the contest? I'm thinking probably about 10 lbs if he goes home Thursday
- He grunts ALL the time and has terrible gas (he is really going to appreciate that little fact some day)
- His current favorite books are: Goodnight Moon, Peter Rabbit, The Going to Bed Book, & Perfect Piggies
Speaking of Peter Rabbit, when Danny and I went in to pick out Carter's head stone, they gave us a little book of pictures to look through for what we wanted on it. We both saw the same little Peter Rabbit picture right away. Peter Rabbit was one of the first books that Gramma R brought to Cohen in the NICU. Danny read it to him almost every night. So, when we saw that little Peter Rabbit picture, we knew we wanted it on Carter's marker as a way to kind of connect the boys. As for Carter's head stone, we really are glad that it finally came in. I know yesterday's post sounded a little...angry, upset, sad. And I was and still am. I hate that my son has to have a headstone and that we have to go visit him in a cemetary. But we really do like the way that it turned out. I love that they were able to put his actual little handprints on it. Thank you again to those of you who go and visit his grave and leave flowers. It always warms my heart when I know someone has been there to say hi and remember my baby.
These last few days have been pretty emotional for me. I have mentioned before that there is a set of twins in the same room as Cohen. I'm not sure if I talked about how they closed Cohen's regular room for cleaning so Cohen was moved into another room and isn't in his "private suite" anymore. So, now it's harder for me to get away and hide, especially when the twins' parents come in. I feel like I am kind of able to handle it when the mom isn't there, but when she is, it just is really hard for me. It's hard for me not to be angry at her. I know it isn't fair to her and she hasn't done anything wrong. But she has both of her babies and I don't. I had to leave the hospital today because I just couldn't take it. And then I was frustrated because I wanted to be with Cohen because he gives me so much hope and comfort, but he was in the exact place that I didn't want to be. Also, as we move towards bringing Cohen home we are SO excited. But there's also a part of me that just keeps thinking about how we should have been bringing both our boys home. There should have been 2 carseat tests, and two bags of baby clothes, and we should still have two cribs set up. I think it's really hitting me hard this week that we don't get to bring both our boys home and start our life of having twins. I have a feeling it's going to continue to be a pretty difficult week. But, there will also be joy in the fact that we will (hopefully) be bringing Cohen home SOON!
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