Almost...

Yesterday morning they had planned to take him off the respirator. We were really excited at the chance to hear his voice again. We haven't heard him since he was first born. It's been over 23 days since my son has been able to cry or coo.

However, Sunday night he started breathing harder even while on the machine for assistance. By Monday morning, all of the progress he made in getting off of the respirator was completely undone in an attempt to keep him stable. Turns out, his chest tube was clogged and he'd built up over 100ml of fluid that were causing pressure problems on his lungs. As soon as they took the fluid off, he started doing much better. They changed the type of drain on the tube to one that was less likely to clot.

Then we had to tackle the him not eating issue. Everytime they've attempted to start feeding him through an NG (through his nose into his stomach) tube, he throws up a few hours later. He hasn't had a bowel movement in over a week. So they tried some laxatives that hadn't worked yet. They decided to give him an oral laxative through his ng tube that is designed to loosen stool and get his system cleaned out. He did really well with the medicine for the first 6 hours, and then started throwing it all up.

X-rays haven't shown any air outside his digestive system and his intestines are making noises as if they are moving things. Some of the laxative they gave him orally did come out the other end, so some material can get through, but not clearing his intestines out regularly could be the big thing keeping him from eating.

He is likely constipated from several of the medications he was on (sedation meds can slow digestion) as well as all of the diuresing (where they remove excess fluid from the body by making him pee alot after surgery) - necessary things for him that could have clogged his bowels up in the process. It's possible that the cystic fibrosis has its ugly hand in this...but I really REALLY want to place the blame on everything else he's needed before I allow myself to believe that CF is already a problem. I want to deal with the heart stuff first and then the CF.

They have contacted the general surgery department here. Today he will have an enema done to see if he has a bowel obstruction (where stool gets hard and stuck in the intestines so other material can't get past). Once we have a better idea what we are dealing with, they'll come up with a plan to fix it and get him moving along. If it is an obstructed bowel it would be a surgical fix.

The other issue (what? there's more?!...yep) is that his chest tube is draining ALOT of fluid. He may have fluid reforming in his belly as well. This is becoming a bigger issue. This could just be because of trauma from his open heart surgery that hasn't healed yet. This could also be because a larger lymphatic drainage tube in his chest was damaged during surgery, and it could require a surgical fix as well.

It's good that we're dealing with these problems now while he has such a wonderful team caring for him here in St. Louis. I'm glad that he has doctors that are considering all factors including CF since I can't face the CF issue just yet.

It's hard to think that we were sooo close to getting to hear him again. I know we really weren't, we just didn't know about the other issues going on...but we keep trying to find little things to hope for, and then they get taken away.

I think my husband and I both have felt like we needed to protect others from what is going on. We needed to put on our brave faces and stay optimistic so we could explain things to friends and family in a way that made it sound like this was part of the process, we were holding up well, and everything was going to be fine.

The truth is that every day here is hell.

Every time we see him cry but can't hear it because of the tube - or he shows us how much pain he is in - or they sedate him again to the point that he won't even squeeze our fingers - or we hear them say that he is 3 weeks old, never fed, intubated basically his whole life - or they tell you your son may get cut on AGAIN...it is all we can do to swallow the sorrow and horror and hold his hand. Tell him this will help him. Tell him we love him and life will be better one day.

Everytime we talk to our daughter on the phone of video conferencing, we remind ourselves that she will forget that we were gone. That she is happy with family, and that even though I tear up everytime I see someone else with their daughter - this is to help our family.

And on a more selfish level - I am struggling to accept that we cannot have more children without risking that they will have CF too. I am struggling with knowing that I could very well have to look at leaving a job that I find fulfilling and that I love. I am struggling to think of how much my husband will have to be away from us to make up my salary. AND..some jerk in the elevator last week asked me when I was due...so my self esteem sucks.

Thank goodness for the social workers who come to make sure our basic needs are met and help us with anything they can. We are thankful for the doctors and the nurses who explain things to us and keep reminding us that this is a slow process. One more hold up. I'd be lost without my family. I will be forever grateful for my grandmother who has shown us so much generiousity and kindness. Matt's family who have helped with anything we've asked. Our friends who have visited, comforted, and donated their time to keeping us sane. And most of all - I am so thankful that I found a partner like my husband who I love so deeply and trust so completely that I know if I could ever make it through something like this, it's because he's at my side.

I have nightmares of rounding doctors diagnosing things and sticking more tubes in my son. I am terrified he will never leave.

The only thing that gets me through each day is an image in my head of Rowan and Evelyn playing in our backyard when Rowan is a toddler and Evelyn, his bossy big sister. An image of this all being behind us and the amount of joy we will find in little things with our family.