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!!!