Friday, April 25, 2008

The roller coaster continues...

So, Sebastian was put on all sorts of medications and machines. He was put on a drug to keep him paralyzed so that he couldn't move and fight the machines. He'd had several blood transfusions as well, since he wasn't yet producing his own red blood cells. He was under the bili lights for jaundice.  He was at the highest settings on most stuff, up to 100% oxygen, as high as the nitric oxide would allow. All we could hope for was that they could start weaning medications. As Sebastian's blood pressure stabilized, they started to wean the two meds for that. Dopamine and dubatamine. They also began weaning the nitric oxide. I remember the doctor telling us that the nitric oxide was very expensive and a fairly new option. They were still doing blood tests almost every hour. 

By day 6, the steps forward were huge, the two blood pressure drugs were done, as was the oscillating ventilator and the nitric oxide. And, he was put into an isolette (incubator) for the first time. Things were really looking up. And then he turned a week old.

Day 7 was one of the worst days. I have to start by saying I was supposed to get together with a couple friends that day, so we stayed home in the morning to await their call. We never heard from them, and when we called them, there was no answer. I was a bit upset, but shrugged it off. We called over to the hospital to get an update. Calling the hospital was pretty common practice. We called every night when I got up to pump. We had the unit's card sitting by the phone so we could always check in on our little man. Well, the nurse said to hold on. This was not good. Then, the surgeon came on the phone. Sebastian had a code blue. He stopped breathing etc, and they had to go the route of CPR etc. It was not good. The cause of this was a bowel perforation. Likely, this perforation had always been there, but he was so sick before they didn't know, but as he started to improve, it became apparent, and wham, code blue. They performed emergency surgery and inserted drains into his abdomen. I was so glad we hadn't gone to the hospital in the morning because I don't know how I would have handled being there for such a scary time!!

Well, after the code blue, Sebastian was put back on the oscillating ventilator and back on the nitric oxide. He didn't have to return to the blood pressure meds though, and the doctor said that he was in better shape than he had been 4 days earlier. The brain scans still looked fine, so that was good too. Now, had Sebastian been born a few years earlier, and had a bowel perforation, likely nothing would have been done to save him. Babies like this would be left to move on to a more peaceful place. I'm so glad that times have changed and treatments improved because Sebastian has come so far and knowing that only a few years has made such a difference is huge. The advances that have been made are huge!!

Next up they began weaning the milrinone. This was a medication to help the heart. It was a slow process and was weaned over the course of about 2 weeks. 

It was around this time that Jeremy started getting hassled by his boss to get back to work. Initially, he was told to take as much time as he needed, but after a week, he was being hassled to get back to work. It was unsettling to be worrying about that when the bigger concern of the day was whether or not Sebastian would be alive to see the next day or not. His heart was still an issue and we didn't know if they'd need to do surgery yet, and if they had to do surgery, how he would cope with it. So needless to say, the added stress of Jeremy's boss certainly didn't help matters. 

April 7th was an important day. The doctor told us that we were no longer worried about day by day. That was nice to hear. We also learned on this day that Sebastian's PDA had closed itself off. This, in itself was a miracle. Normally, if it hadn't closed by now, it would take medication or surgery to get it closed off. Neither of those two options were ideal for Sebastian, so the mystery close suited us just fine. After this, the next big hurdle would be to start feeding him. 

They inserted a double pick line. Did more transfusions and started the caffeine drip. Sebastian was truly a Starbucks baby (the caffeine helps keep these little preemies breathing properly). 

On Sunday, April 9th, Sebastian was a bit unsettled, so they took him off the ventilator and he adjusted well to this. It was so quiet without the ventilator on. Sebastian had oxygen via nasal prongs. They were trying to avoid CPAP as this forces air in to the tummy as well and that would do no good for the bowel perforation that was trying to heal.  So, we had to hope that the oxygen would be enough. With Sebastian off the ventilator, it was finally time for us to hold our child for the first time....but more on that next time...

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