My goodness my little man is determined to make me feel guilty about having days off from him!
As I explained in the last post, after the first day off, we received the news regarding the PVL diagnosis. Given this, I was somewhat hesitant to have any more days off. However, my own health check up was deemed necessary and so a second day off was called for.
I had a great day with the kids and managed to catch up with some good friends. I even saw two whales, slowly making their way north. I had my chiropractic appointment, slowly working through the postural damage caused by bad sitting patterns over the last seven weeks.
Unfortunately, the one appointment I had centred my day off around was cancelled at the last minute. This was my six week post delivery appointment, to give me the all clear to drive and start back at the gym.
So I’ve taken it upon myself to determine that I’m fine to do both. However, I have since been told by a certain gym instructor that he will not let me return until I have a letter from the doctor saying it’s ok…. Perhaps I’ll make one up, stipulating I can return but cannot do sit-ups ever again!
On my day off, Bubble Boy behaved himself. He had all the attention of the nurses and so, of course, loved it. The week before, he had experienced some difficulty in tolerating his feeds, so they had ceased them and were slowly increasing them over the course of the weekend. My tentative phone calls included the now standard questions of, how much milk, has he vomited, has he pooped? His saturation levels had been really settled, so I wasn’t even asking about that anymore.
The day off saw him reach 14mls of milk every 2 hours, with no vomits and very little aspirates (when they pull back on his stomach to see what he has absorbed). So he was doing really well. He had even had 8 hours off the CPAP and fought like a trooper when they put it back on him. So I was feeling confident and relaxed.
Driving back to Sydney had me questioning why I was excited about driving again and it wasn’t long before I was getting very cranky at the traffic and the lack of parking available! I was therefore flustered when I finally got in to see him. I knew I had to express, but wanted to be with him.
First thing he greeted me with was a forceful but small vomit (he coughed and it was very liquidy and consequently hit the side of the crib, right where I was looking!). No problems, I cleaned it up and was ready to prepare him for his weigh and wash. This is when he presented me with his first poo in around 5 days…. Black, sticky and disgusting! So I cleaned as much as I could and lifted him on to the scales. He showed me how much he loved me by getting the poo on my hand – it stained my hand!
He actually put on weight and was taken off CPAP again so we could give him a nice wash. Just after I cleaned his face, the vomits started. Big vomits. Yucky vomits. Vomits that would mean he now needed an X-Ray to see just what was going on in his little stomach. I knew this was a possibility and knew there was a high chance we would need to have further investigations at another hospital. I just thought we had missed out on having to go through that because he had been improving so much.
He had the X-Ray and the doctor had me convinced all was ok, so I left. A phone call from the doctors informed me that all was not ok; that he would in fact need further investigations and that consequently he would be being transferred to Westmead’s Children’s Hospital.
I went back in and had a frustrating conversation with one of the doctors, who I am assured is a genius. I think he is an idiot and said as much to the nurses – who were the only ones to take the time to listen to my questions and concerns and not speak over me like he did every time I tried to say something.
I was petrified. I knew the testing would be harmless and that it was the best thing for him, but I didn’t know if it was the best thing for me. My life has become so much out of my control, that I didn’t want to leave the cocoon that RPA has become for me. I’ve got routine. I’ve got some control. I know the place. I know the nurses. I know how things work. The nurses’ care for him, so much so that a couple did have tears when they informed me he would be transferring. Basically, I was leaving the sheltered life that RPA has become for me over the last seven weeks and I wasn’t handling that very well.
He was transferred early this morning and I finally found my way to the NICU ward. I was shocked that I was able to walk in without first washing my hands. I was shocked that I was able to put my bag next to his crib. I was shocked that he was in an open crib! I was shocked that I was able to stay by his side when the doctors did their rounds. I was shocked!
He was a good boy today. He handled the transfer well, handled his new surroundings with open eyed awe. He blew bubbles and raspberries at the nurse when she tried to change his gastro tube (he went through three in less than 8 hours!). He seemed to find his voice today, gurgling away. He seemed to love that he now had a whole new group of nurses who would dote on him, tell him how gorgeous he is and be by his side to hold his hand.
He had an enema to check if he has a constricted bowel. He was so good and didn’t make a sound and let the nurses move him around like he was a spit roast without complaint. I shed a tear as I watched the proceedings!
He even had time of CPAP and we got a cuddle! He wasn’t de-sating as much and enjoyed poking his tongue out at me. I left him happy and content. I left him knowing the new nurses would look after him. I left him knowing that I can adapt to new surroundings and come out unscathed!
The enema came back clear. He will have further testing on Friday and so we will find out more then. I’m still hopeful to return to the familiar surroundings, sights and sounds of RPA. For now, I’m just happy in the knowledge that he is being cared for.