Happy Holidays!

We just wanted to be sure and thank everyone for all of their love and support over the past year. It has been very difficult, but both boys are finally home and doing well. We have started to make great memories and we treasure every moment!

Cohen is interested in just about everything. He is eating his big boy food- cereal, fruit and veggies. He is 17 pounds 14 ounces and gets bigger daily. He is playing, talking up a storm and craving some of Bryce's attention. He is such a happy baby and smiles and talks all the time.

Bryce had bilateral (inguenial) hernia surgery on December 10th. That bought us another night at Children's... The surgery went well and he never seemed to be in much pain from it. We were very glad to have that finished, another check off the list. He continues to do good. We have a physical therapist coming in every Monday and a developmental interventionist that works with his twice per month. He weighs 10 pounds 6 ounces....

We are so thankful to be where we are today. Given our history, we felt like this time would never come. December is also Twin to Twin Transfusion Syndrome (TTTS) Awareness Month so we wanted to mention that. We hope in the future to give back, but for now we just wanted to bring it to everyone's attention. Don't take anything for granted this holiday season. Squeeze the ones you love extra tight this year. We sure will!

Home Sweet Home

I know that it has been quite some time since we have been able to update everyone on the boys. So much has happened over the past few weeks, we weren't able to keep the blog updated like we had hoped. 

Bryce had got to come home with us on our anniversary, September 29th... We couldn't have asked for a better anniversary gift than that! We spent the first couple of days just the four of us, we had waited months and months to be able to do that. Unfortunately over the next five days Bryce started getting sick. He had a high temperature, wasn't tolerating his feeds and just wasn't himself. I took him to the ER the Sunday after he got home and we found out that he had a staph infection from his last surgery at Children's. That news led to another 3 weeks in the hospital, we were devastated. Matt and I went back to taking turns staying with Bryce and seeing each other for just a few minutes as we switched spots.

Luckily, we were able to bring Bryce back home once the infection cleared... It is just a few days shy of being 2 weeks at home, the whole family... Bryce has done great! He is growing and eating like crazy. He has finally made his way to 8 pounds 10 ounces. He is starting to smile and laugh and play. He has  never had an opportunity to do this before. It has taken time and will continue taking time to show him that we aren't here to hurt him. We are so happy to finally have him with us at  home!

Cohen has been doing great.. He is 15 pounds 3 ounces and eats eats eats. He is starting to be very interested in toys and his surroundings. He is starting to teethe as well... It is so hard to believe that they will be 6 months old in just a few weeks.

Unfortunately we are entering RSV season and with the flu being so bad we have to keep the boys on lock-down. They are getting monthly shots to help their immune system fight off these types of illnesses through April. We can't wait to take them out and let them meet everyone... from family to friends. Of  course, I would love to show them off to absolutely everyone!

Life is starting to come together and we couldn't be happier. We want to be sure and thank everyone for helping us through this tough time. Also thanks to everyone who participated in the benefit for the boys, your support is much appreciated. There is no way we can ever repay or thank everyone enough for all that has been done for us and our two miracles!!! Thank you~

A short video of the boys

Who Dey!

Life has been very hectic. It is so hard to put into words what we go through day in and day out... What Bryce goes through...  He has had a total of 8 surgeries now and we hope that we stay at that number for a while. The last surgery he had was last Friday and so far things seem to be going very good. His shunt is now internalized and his 4 incisions are healing. The hope is that he will take a few more days to recover and continue to work on his feeds. Once he can get his feedings down he can come home. It is so exciting talking about Bryce and coming home in one conversation. We keep hope that all will go well and somehow he come home with us this coming week. If he doesn't we at least know that there is light at the end of this tunnel. He is up to 7 pounds 11 ounces and continues gaining.

Cohen has been doing great... He is really starting to develop a little personality and is starting to be very interested in everything around him. He smiles all the time and has to be talked to when he is awake. Two weeks  ago he was at 10 pounds 2 ounces, but I am sure he is way past that now. He goes back on Tuesday of this coming week for another check up. He has been a real trooper going with Mommy to see brother when Daddy has to work. 

Today we spent the last day together (all four of us).. until Bryce comes home that is. The hospital is now under a lock down because of the swine flu. We are no longer able to take Cohen along with us and only Matt and I can visit Bryce... not even grandparents can come anymore. The news would have been upsetting, but we are confident that Bryce will be coming home soon!

The boys got to watch their first Bengals game with Dad.... first of many. We all had our Who Dey gear on until Mr. Cohen had a little accident all over his and we had to change him. 

Thanks to everyone for their continues support and prayers.... 

Sorry it has been a while since we have  been able to update everyone. So much has happened in the past couple of weeks. Cohen has been adjusting to life at home, it seemed at first that he wasn't sure about his new life outside of the hospital. It took a few nights for him to settle in, but he is doing great sleeping for four to five hours  through the night. It has been so nice to have him home, he has finally made us feel like parents. He is up to 8.11 lbs and is close to the growth curve of a regular newborn. Cohen even gets to go back to visit his brother any day. We try not to make too much of a habit out of it.... We don't want to risk getting either of them sick or putting too much on Cohen, but it is hard not to take him so that we can all be together.

Bryce has went through a lot of changes since we last posted an update. His infection that was found in his CSF fluid did not clear, so another operation was formed to externalize the shunt. It was hard for me to think about having a tube come out of his head draining fluid. I pictured something very graphic that you would see in a horror film. Once I was able to see him after the  surgery it wasn't near what I thought it would be. The shunt has to be external until they have fully treated the infection. At that time, the shunt will be replaced and we will hope and pray that his surgeries will be over. This makes surgery number four and number five will soon be on its way. Once the next surgery is over and Bryce has recovered, we will just need to work on feedings  with him... Then we will finally be able to go home. He has  made it up to 6 lbs.... 

Thanks to everyone who continues to follow the boys.... We appreciate all the love and support.

Home Sweet Home

Finally some good news.... COHEN IS HOME!

We were able to bring Cohen home two days ago (August 6th). It felt so good taking him off the monitors and being able to freely move about the room with him. It was very bittersweet, we felt terrible leaving Bryce behind. It made their room seem so lonely. We keep waiting for the day that he will be coming home with us.

The first night it seemed that Cohen didn't care for his new bed. He didn't fall asleep for us until 5am. The nurses had told us what a great sleeper he was at night, we started thinking that maybe they had been lying. The second night was much better, he only got us up a couple of times. He seems to be enjoying home. Our dog Tax has been very interested in this new little thing we brought home. He wants to be right next to Cohen no matter where he is.

Bryce has been doing relatively well. He is still being treated for the infection caused by his first shunt. He is now taking over 30 percent of his feeds through a bottle. It has been so exciting to watch this little guy take more and more by mouth. He is fighting his way home. Bryce will have an MRI on Monday to take a more detailed look at his brain and to make sure the new shunt is operating effectively. He seems to miss his brother, but we are able to take Cohen back with us when we need or want to.

It is hard having one home and not the other, but we are truly closer than what we were before. They are now 40 weeks gestation and 12 weeks old!!!

Thank you to all who have been and continue to support our family.

The ups and downs of a NICU

Were do we begin.... This week was "crazy", Bryce was off of oxygen and feeding from a bottle. We couldn't believe the progress he had made since his shunt was put in.  It was great!!!! But then on Tuesday it looked like his shunt was exposed from the wound from his surgery. That was not good because it meant that an infection was possible. So the doctors said in their opinion that the shunt should be taken out and they should do the surgery over in a new spot. On Wednesday we chose to go ahead with surgery and not risk Bryce getting an infection in his brain.  It was a very difficult decision to make him go through another surgery but it was that or take a chance that an infection could set in.  The surgery went well for the most part, but once Bryce came back up to his room we noticed staple marks all over his body. Once we questioned this we found out that they had used a sterile dressing and purposely stapled it to Bryce's body to create a sterile field. We were understandably upset and very angry that this information was not given to us before the surgery. It was also failed to be mentioned to us after the surgery was over.  Other than that surprise the surgery was a success. Now Bryce just has to start over, get off the ventilator and breath on his own, and eventually start eating from the bottle again. If their was an award for the strongest baby ever, I would give it to Bryce for everything he has went through. He is amazing!!!

As for our other stinker, Cohen was supposed to come home today. This makes the fourth or fifth time that he was supposed to come home and hasn't. He just had other plans and didn't want to leave his brother during such a difficult time.  (We will see how long that compassion will  last once they get older and Bryce steals one of his toys.) Since Cohen had another spell on Tuesday morning it pushed his date for coming home to Monday.  He continues to eat, and eat. He is now over 7 lbs. and has a hard time fitting into some outfits that used to swallow him up a month ago.  

Thanks for the support and continued prayers.

Above are pictures of the boys: Bryce chillin', Cohen in his bouncy seat, Bryce taking his first bottle, and Cohen getting a bath.

We wanted to  be sure and update everyone on the great progress that has been made over the past week. 

Bryce was able to come off the ventilator the Sunday after his surgery (last week).... and on Monday he was completely off oxygen. We never dreamed he would do so good so fast. We were finally able to see his upper lip!  The surgery has made Bryce like a whole new baby. He seems much more content and alert. We are still waiting for his wound to heal, but the surgeons are hopeful that it will heal and the shunt will not be affected. We aren't quite "out of the woods" yet, but it does look promising. Yesterday Bryce also took his very first bottle, filled with 5 mLs. He took it like a champ and was waiting for more. We are able to do this twice a day and will hopefully keep raising the volume. He still gets the rest of his feeds through his feeding tube. Bryce is at 4 pounds 13 ounces

Cohen has decided that he doesn't want to come home without his brother. Each time we are close to taking him home he has a little heart rate  drop which starts his 5 day ticker again. (He has to go 5 straight days episode free.) We call him our Chunky Monkey.. He loves to eat and eat he does. He takes anywhere from 70 to 90 mLs every 3 to 4 hours. He is 6 pounds 9 ounces and is gaining daily.

Pictures soon to come...

Thanks for the continues prayers and support!!

Big Changes

We have  been through a lot of changes over the past few days. The boys received their 2 month immunizations. It is hard to believe they are 2 months old! They have come so far.

On Wednesday we found out that Cohen was expected to go home on that Friday and that  Bryce would be having his surgery on  Monday. We were very surprised to say the least. However, after their vaccinations, Cohen started to have a few episodes. He wasn't taking much of his bottle feeds and had a lot of heart rate drops. Luckily, he made it through without needing oxygen and recovered from the spell in about 48 hours. He did buy himself a few more days in the hospital though. He is now expected to make the big trip home on Monday or Tuesday.

We also had a surprise with Bryce. Instead of waiting until Monday he ended up having surgery on Friday. We were very nervous but knew it was time for Bryce to have his shunt. The surgery started at about 3pm and we weren't able to see him until 6:30pm. After meeting with the surgeon we found out that the shunt placement went very well. There was an issue  with a  special dressing that they had  to use during surgery. Once they removed it there was some skin on Bryce's scalp that was pulled off. The skin is over a part of the shunt which causes a very high risk. The doctors are watching him very closely to make sure  infection doesn't set in and they have called the plastic surgeons in to watch the area. We are hoping that the skin will heal and the shunt will not be affected. If infection would set in there is a possibility  that Bryce will have to have another surgery. We have been very frustrated to put it lightly. He has been through so much already. Bryce remains on the ventilator but will hopefully be able to come back off of it by tomorrow (once the sedation has worn off). 

We owe so many people a thank you (and more). We appreciate the continued support and prayers!

Movin' on Up

The boys are now 8 weeks old and now have a new room to call home. On Monday they got moved to a private room which we love just as much as they do. The boys are now sharing a bed again. The room is quiet and there is a window so the boys are getting a little sunshine.  Now they just need Weezie to keep it clean!

Bryce is now up to 4lbs. 3ounces and the docs have him on a high calorie diet (mom's milk plus extra calories) so he will just keep catching up to Cohen. Bryce might be having his surgery next week on Monday or Tuesday. We are nervous but hopeful that the shunt will help Bryce make his way home soon. 

As for Cohen, he weighs 5lbs. 8 ounces and is tube free (no oxygen or feeding tube).  He now feeds just from a bottle and could be going home in a week or so. I think he likes it at the hospital with his brother because he will act up every so often. 

Thanks again for the prayers and support!

Happy 4th of July

Over the past week Cohen had bloody stools and was put on antibiotics as a precaution. Sometimes bloody stools can  be related to a breakdown of the intestinal wall. Luckily Cohen's x-rays have looked pretty good and just show abnormal gas patterns (like his daddy). He hasn't been able to eat over the past week and has done a pretty good job holding his temper. He should be able to restart feeds tomorrow which will make him much happier. Cohen has also reached 5 pounds; another milestone!

Bryce will be off his antibiotics in 4 more days, ending the two week treatment. Hopefully once both boys are off the meds and doing well they can start to co-bed once again. Bryce started taste through a nipple the past  two days. Both days he did very well taking one whole mL each time. Each day we will  be able to work with him and see what he can tolerate. Big steps for such a little guy. He is at 3 pounds 12 ounces. Once he hits 2 kilos, roughly 4.5 pounds, he will be ready for his second surgery (the shunt placement). We are very nervous, but excited about this. We want what is best for Bryce and what is going to help him. 

We added another slideshow. We put the boys together long enough for a little photo shoot on the 4th of July. Let's just say they weren't very happy... I don't think we have male models on our hands.

Thanks again for the continued love, support and food that has been sent. We appreciate all the prayers!!!

6 weeks and counting...

             

Over the past week, Bryce got an infection and took a few steps back. We don't know what kind of infection or exactly how he got it. He is on antibiotics and it seems to  be making him feel much better. He had to be separated from his brother because he was unable to hold his temperature. They are now in two different beds, but still next to one another.  He has had a good couple of days. He has also broke the 3 pound mark!!!

Cohen is doing great as well. He has started taking some of his feeds from a bottle. He has gotten as much as 15 mL's and has been able to tolerate it and want some more. We don't want to push him too much, but it is hard not to. He is waking up for feeds and letting everyone in the room know if it is the slightest bit past feeding time. He is an eater for sure. He is around  4 and a half pounds.

We want to take time out to thank all of the nurses at Good Sam. You were great to our family! We will not forget you. Thanks to everyone for the continued love and support.  Above is a video of the boys...

"Reunited and It feels so good"

  

Being pesty finally pays off - The boys are back together again and it happened just in time for Father's Day. Matt was able to hold both the boys which is the one gift that he was hoping for. Another great surprise happened today. The boys were able to move to the same crib. Bryce wasn't very sure about it at first (as you can see from the picture).  It is great to see them both at the same time, no more running back and forth from one to the other. 

Overall the boys have been doing good. Bryce has been weening down  on his oxygen levels and has had few heart rate drops. He is now at 2 pounds 14 ounces. Cohen is doing about the same, his feeds are given to him over a one hour period instead of two. Once he can take his feeds all at one time he will begin bottle feeding. He continues to have more episodes with heart rate drops, but hopefully those will be ending soon  with maturity. Cohen is now at 4 pounds 2 ounces. 

Bryce will have an MRI of his brain on Thursday and we have a Care Conference on Friday to discuss Bryce and what his future may look like. We remain hopeful- he is very appropriate for his age.

Thanks again to everyone for their prayers! It seems that they are being answered.

32 Weeks Gestation Today - 4 Weeks Old Tomorrow

Cohen

                                                                                                           Bryce

A lot has happened over the past few days. Thursday we were told that Bryce would be having surgery on Friday morning. That news  came with mixed emotions, we wanted something done to help Bryce and at the same time it was very scary. Our little baby, just over 2 pounds, would be having brain surgery. A reservoir was placed under a thin layer of skin on Bryce's head. This would help the doctors drain fluid from his brain as needed. The surgery was a success and improvements are expected. The doctors remain hopeful that Bryce will be able to get back to growing. His feeds were  restarted and he has had few heart-rate drops. He has been very alert and still smiles after all he has been through. He is simply amazing.

Cohen is also doing great. He has been able to go from the enclosed bed to a "big boy bed" (an open crib). He continues to maintain his body temperature which is another big step. This is also exciting for Mom and Dad because we can hold him any time we want. We aren't limited to once a day. Cohen has really started to develop a little personality. He knows just when to cry and just when to smile. He has the widest, most curious eyes.

We are still fighting the battle and trying to get the  boys together. So far our insurance company has denied our request to have Cohen transported to Children's so that he is with his brother. The doctors at Good Sam have been trying to help us, but so far with no success. We can appeal the request but they have 30 days to look into the request. They will not expedite the appeal since it isn't "medically necessary." 

For now, we continue going from hospital to hospital hoping that we don't miss anything with the boys. We appreciate all the love and support from everyone.

A Rainy Day for the Croleys

Yesterday we had good news and bad news all in one shot.  First we found out that Bryce was being moved to Children's Hospital. There they could evaluate his head and possibly do surgery and place a reservoir on his skull to remove fluid from his brain. This was the good news because we wanted to see something done for Bryce. Then the bad news came that our insurance as of now would not cover the trip or stay for Cohen at Children's Hospital. So now we have one of our boys at Good Sam and the other at Children's.   

As for the boys, Cohen is 3 pounds 6 ounces and Bryce is 2 pounds 5.5 ounces. They did put Bryce back on a ventilator this past weekend but he seems to enjoy the extra help.  On a lighter note, Cohen got his first bath, it was so relaxing that he pooped in it. Bryce got his first outfit put on him and I think he enjoys being in the nude a little better. 

Thanks for the support and continued prayers.

Cohen and Bryce were born on May 17,2009 at 11:30 in the morning. Cohen Matthew came into this world weighing 2.12 lbs. and Bryce Anthony at 1.15 lbs. It wasn't a very intimate experience, the small room was filled with doctors and nurses. As soon as the boys arrived they had three people each working on them. Shortly after they were rushed off to the NICU with Dad following behind. 

The first few days were very touch and go. The boys were both on ventilators unable to breathe on their own. Bryce became very ill and wasn't responding to any of the treatments. The doctor came to my room and asked that Matt and I come down to the NICU. We were losing Bryce and she told us that we should have him baptized right away. We rushed to the NICU and sat with Bryce for hours comforting him with our touch and voices. Our families rushed to the hospital to be there as well. That morning things started to turn around and he started responding to the treatments that had not worked earlier in the night. He had made it... the doctor told us the next day that she truly believed he only made it because we were there with him during that time. After that night it was found that Bryce had bleeding on both sides of his brain. It is a Grade 4 bleed and the long term effects are questionable. That news was very hard to take, we just hoped and prayed that Bryce wasn't in any kind of pain. After making it through that night we saw how strong he was and that he wasn't going anywhere.

Recently the boys have been doing pretty good... They are on oxygen and Mommy's milk (with some added calories). The milk is given through feeding tubes that go straight to their stomachs. They are slowly gaining weight (Cohen- 3.3 lbs; Bryce 2.4 lbs.) and have really started to develop little personalities. They both have big curious eyes and smile ear to ear.  Bryce continues to have weekly head scans and has had a spinal tap to drain the fluid from around his brain. His head circumference has went down and the ventricles in his brain are less dilated at this time.

Thanks for the continued support and prayers.