A bad day all around!

Not to start this post out on a depressing note, but do you remember me mentioning the 1 lb. 24/25 week baby that was across the room from Payson? I am very sorry to report that this afternoon the baby passed away. This morning when I came in the NICU I immediately knew that the baby was dying...the parents were there, they were baptising the baby, other hospital staff (some I'd never met) were in/out and privacy screens were up. The parents laughed, cried and talked with staff. It was heartbreaking to overhear! About two hours after I walked in I heard them pull off the babies monitors and take him to a room where the parents could hold him while he died. This event made me feel so guilty for being in the room. I really just wanted to hide in a corner and go unnoticed. It was horrible as a stranger to be privy to what was going on in their corner of the room! As I sat there watching this drama unfold; my heart ached, I prayed fervently for all parties involved and was grateful to be able to hold my babies hand!

Even though I do have the above perspective still fresh in my mind I can still say that though Payson is alive he DID NOT have a good day. Every morning we get an email that just tells us what he did in the last 24 hours. It is a great way to keep a record of his weight, progress, feedings, etc. Well, in our email this morning it stated that he had 3 apnea spells so far for the day. Usually, if he has a spell it is at the most one if any at all so you can imagine the flag that went up when we read that. Before I arrived the Doctor had ordered a blood panel and x-ray. The x-ray showed that part of his bowel was distended, but the panel was clear. Then when I arrived the spells became more frequent within 2-3 hours of me arriving he'd had 6-7 spells where his heart rate drops to 50. (This doesn't count the "dips" in which his heart rate drops to 50 then back up to 120/140's a few seconds later). Considering what was going on across the room I figured that maybe he was responding to the heaviness in the room, but as time went on it was apparent that it wasn't that. The dr. ordered another panel, but as she was standing there talking to me about the cause of the drops he performed another episode (at least he isn't like a car that has a symptom then when you take it to the mechanic it mysteriously is better or goes away) and for the first time I saw a worried look come across the dr. face. After he recovered she ordered to have him up on a air cannula. After thinking about what was causing this she decided to stop the human milk fortifier that they have added to my breast milk (this is just added calories to fatten him up) and that they were going prop the G tube up so that air could get out if there was any. As we discussed the blood panels, (all were fairly normal nothing to be concerned with), x-ray and the above "treatments" he had yet another episode so she decided to stop his feedings and start him on antibiotics immediately. Within an hour of the antibiotics dripping into his system he seemed to respond and stabilized. I left shortly afterwards...If only I'd known things were just going to get worse.

Around 8:30 pm I received a phone call, but because I was at my community group I didn't pick it up, but something nagged me to listen to the voicemail. It was the NICU calling to say that they needed to speak to me. I called back and spoke to the night doctor. She informed me that around 6:30 pm he started to have more and more episodes and just wouldn't breathe so she decided ventilate him, but before they could do that they had to give him a sedative b/c every time they'd try to put the air tube down his heart rate would drop. They also put in another IV line besides his central line (that sits in his neck) to start another course of antibiotics. I didn't really hear the rest because I just wanted to get in the car to get to him. Thankfully, when we called Sara, (who was in bed), she was at my house in a matter of 15 minutes so Todd and I could leave to go to the hospital. Thank you, Sara for always being there on the fly...What would I have ever done without you?

When we arrived my heart stopped. My baby was on a ventilator, with tubes, monitors, looking very pale and with no clothes. He looked so helpless just lying there with his head forced in one direction (for the vent), all these lines coming off of him and a plastic catcher on his wee-wee. There are more tubes/lines attached to him then when he had surgery or was first born. It is a scary sight and one that broke my heart. He was having a bad day that is for sure! We spoke to the nurse who went down the list of everything they had done to him since I'd left earlier. Needless, to say they have poked and prodded every inch of his body and violated every orphs he has. While we waited to speak to the doctor the nurse stated that she'd observed when another baby started to cry he seemed to get upset/restless, so they were trying to keep it very quiet on his side of the room. When the baby across the room began to fuss she asked us to talk and touch him so he'd relax until she could calm the other baby down. When we spoke to the doctor she said he looked much better and was more comfortable then he'd been earlier...What?! He looks terrible! That goes to tell me how bad he was! She said he was a very ill baby, but wasn't sure what it was and that they have run a battery of tests on him. She stated that the RSV and H1N1 virus test came back negative...Whew, don't need no swine anything! When asked what she thought it was she stated she was leaning towards a bacterial infection. The tests to determine viral or bacterial infections won't be back for at least 24 hours. If it is bacterial they will most likely have to do a spinal tap and give him a blood transfusion in the next couple of days. She said once it is determined and treatment is given he should be able to come off the vent. within a few days and one by one get rid of the lines and tubes. Wasn't it just last week that I was so proud of Payson for coming off a majority of tubes/lines? How did we get back here so quickly?

Anyways, please pray for him as he fights off whatever it is that is ailing him. This is the last thing he needed! Thank you in advance for those prayers!

Before I forget, please pray for Todd and I. A couple of days ago we thought surgery was the end all/be all for Payson; once he had surgery he'd have a couple of follow up appointments and then we'd walk out of there to live our lives freely. That isn't the case. Nothing has changed, but we just didn't have a full picture/grasp of his condition yet. After the surgery, kids with Payson's condition have a lifelong struggle with heartburn and will periodically have to get stretched. When I say stretched it means that when they are able to operate to put the two esophagus ends together it will create a narrowing in the esophagus (where it was pulled to put the two ends together) that will have to be stretched to help make the esophagus a consistent width, (boy, I hope that makes sense). They do this by sticking a tube down his throat with a balloon on the end and fill the balloon up with air to stretch the esophagus. With this realization Todd and I have some decisions to make. Please pray for us that we make the best possible decision for our little boy.