Thursday, July 7, 2011

Catching up on the past 11 days...

The night of the boys birth was an exhausting one in every sense of the word. The twins were immediately taken into the NICU to begin hooking them up to all the machines and I was taken into recovery. Still sleep deprived and on many drugs, I don't remember much of the rest of the night. I could not see my babies yet until I was off my anesthesia and able to walk around, not to mention I still hadn't showered since swimming in Whiskeytown Lake and that was a must before seeing my boys.

Matt was able to go in and see the boys at around 9pm that night. He was scared to see them and I was scared for him. Neither of us knew what to expect... We both expected to see very sickly looking babies that could fit into the palm of our hand. It seemed as though going to see them just made the whole experience so real. But they needed us and we needed to be brave for them. He stayed in there with the boys for about 2 hours getting all sorts of information from the NICU nurses about what would be happening over the next few days. When Matt came back he had our babies footprints and pictures to show me. I was surprised at how developed they were. They were much bigger than we expected, even at only about 2lb each. Now, I couldn't wait to go see them! However, I was still stuck in bed.

Matt and I were both very exhausted. He decided to come home to attempt a good night sleep and I would do the same. However, neither of us were successful. Matt just couldn't sleep and I woke up in the middle of the night nauseous and very overheated, despite the 65 degree setting in my room. hormones!!!

We made it through the night and into the next day. We enjoyed a few visitors and I was finally able to be taken off my IVs and take a shower. However, I had to take pain medication and was given Norco. I had the choice of 1 or 2 and the first time I decided to take 2, even though I hate the idea of taking them at all. The 2 Norco made me rather loopy and I hated it! There was no way I was going to meet my boys for the first time while I was so loopy. I waited a bit for them to wear off. Finally, in the early evening I got to meet my boys along with my Mom. It's an interesting feeling to meet your babies for the first time and not be able to hold or comfort them. I, of course, immediately fell in love with them.

I spent an hour or so just going from one isolette (bed) to another and talking with the nurses and Neonatologist about the machines my boys were on and what sorts of things they were looking out for.

That night, on much less drugs and able to process what had happened over the past 48 hours, I finally was able to just sit down and have a good cry. I sure needed it! It all became so real at that point and I hated that my precious little boys had to go through this ordeal and I was and still am so worried about them and their stress levels and health. I know these next few months are going to be hard!

Our first goal was to get both boys off the ventilators. Since the ventilator tubes go into their lungs it is very intrusive and thus has a high risk of infection, stress and also a pneumothorax (air in the cavity around the lungs). As of today, Trevyn is off of the ventilator and on an ncpap machine which supplements his breaths. So far he is doing fairly well with that. Dax is still on the ventilator and we are waiting for his blood gases (CO2 mainly) to normalize as they were high last night and also for the MAP (mean airway pressure) settings to be low for longer periods of time with him still remaining stable. Basically, the ventilator pumps pressure into his lungs to keep his alveoli (air sacs in lungs) from collapsing. As of this afternoon, his MAP was set at 9 and we want it at 7 for an extended period of time before he gets to come off the ventilator. We're hoping soon!

Another concern in the first few days is Patent ductus arteriosus (PDA). Basically, a fully mature heart has a left and right side. One side pumps blood only to the lungs and the other side pumps oxygenated blood to the body. However, when a baby is in the womb they do not need the blood to go to their lungs because the oxygen is provided by the placenta. Therefore, babies in the womb have an extra duct that connects the left and right side that allows blood to forgo being pumped through the lungs. For full term babies, this duct almost always closes upon birth. However, with preemies it sometimes does not close properly leading to medicine (which has side effects) and if the medicine doesn't work, surgery. When they were born, Dax had a small PDA and Trev's was a bit larger. As of an echocardiogram that was done about 4-5 days ago, Dax's PDA was completely closed and Trev's had gotten significantly smaller. Yay! It is expected that Trev's will and likely already has closed. There is always a chance for the PDA to reopen after it has closed, but it is a very good sign in the right direction!

The boys get blood draws often to check their blood gas levels among other things. A few nights after they were born, Matt and I were spending some time in the NICU with them and I lookover and Dax's skin had gotten extremely pale. The nurse noticed it too. She was concerned about it but not panicking. So, I tried not to panic as well, but it terrified me! When the neonatologist had a moment away from another baby, she pointed it out to her. The Dr. said that he probably needed a blooded transfusion and I started crying. i hated that my 2-3 day old baby was needing a blood transfusion. It's a pretty common thing to need a blood transfusion for a baby so small since they are not good yet at making new blood cells and the smallest amount of blood drawn is a lot to them. I spoke with the Dr. the next day who told me she calculated and they had only drawn 3/4oz. since the twins were born about 3 days prior. Later in the night it was determined that Trev needed a transfusion as well. Apparently there are specific donors for babies and every time a preemie needs blood, they get it from the same donor. No blood banks in the redding area are set up to receive blood for babies so it was driven up from Sacramento and they had it by morning. And Daxton's color was much more normal!

Approximately 2 days after they were born they needed to be given Sodium Acetate which is an electrolyte. This was the only kind they could be given without affecting the other salts in their system. Unfortunately, there is currently a national shortage of Sodium Acetate and the hospital they are at did not have any. Sodium Acetate is not some fancy high tech medical solution. In fact most people who have taken a chemistry class with a lab have likely used it in some experiment and there are actually directions for how to make it online. Of course, we needed medical grade and I couldn't just brew up a batch.

The first step was to start calling other hospitals and pharmacies to try and obtain some. The boys Dr. spent hours that day trying to track some down. A lot of places had it in small quantities and would not give it up for my boys because of the shortage. by early evening it was looking like the only option would be to transfer my boys from Mercy Medical in Redding to UC Davis medical in Sacramento. They would need to be transferred by plane or helicopter due to their fragile state. So, basically, we almost had to move my boys, who are very easily stressed out, on a helicopter, a 2.5 hour drive from where we live just for a stupid salt. Really America?? We are a place that can build some of the most high tech weaponry for war but we can't provide enough salt? Unbelievable.

Just as the Dr. was getting ready to begin the transport process, Enloe Medical Center came through for us and sent all the Sodium acetate they had in stock for my boys. Thank you so much Enloe!

As I mentioned in the birth story, there was an infection that led to preterm labor. In a case like this it is important to find out exactly what the bacteria was that caused the infection so it can be treated properly. Typically it is determined within a day or two, but now we are 11 days since the boys birth and we still do not know. Therefore we are not even 100% sure we are treating it right. Frustrating! There is also a chance, depending on what the bacteria is when we find out that Dax will need a spinal tap to make sure that the infection did not get into his spinal cord. Positive thoughts that we do not need to put him through that!

Dax has his eyes open and Trev's have just started opening as of yesterday. It is so precious to see them try and look around (though they don't really have vision yet). They are perfectly beautiful little boys and I simply cannot wait to be able to take them home. Only 2-3 more months! : (

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