Also a reminder: Although Jett is in an open cot and is so much bigger now you MUST remember that he was born very premature. Please don't come and see us if you have had or have a cold, runny nose, sore throat, fever, infection or cold sore. These viruses can have damaging or fatal outcomes for the babies. If you do visit us at some stage, PLEASE DO NOT TOUCH JETT. I know it's tempting, he is very very cute, but the ONLY people that have permission to touch Jett apart from the medical team is Jade and Myself..
Now to catch up on the last 3 days.....
Jett
Wednesday, Day 70
Jett has still been having blood stained secretions so the Drs ordered formal bloods to check his coagulation factors and his liver function. I wasn't aware they would need to take blood from an artery, so I gave permission over the phone to do it without me there. (I thought it would be from a heel prick) Silly me. I got to the hospital shortly after and his left leg was all swollen and bruised. I was told a registrar had attempted it.. I was so fucking angry. It was my understanding that Jett is CONSULTANT ONLY when trying to get blood and venous access.. Plus I was angry at myself because I wasn't there for him while they were doing it :(..
Anyway, later that day the consultant came to do it. I was made aware that he didn't want me present while he was doing it, as he said it makes it harder for him when parents watch.. I explained that I wouldn't watch I was simply there to be there for my son, hold his hand and give him EBM so it took some convincing, but he let me stay if I promised to turn away and not watch him.. I was happy to not watch I just wanted to comfort Jett as much as I could. I'm glad I did stay, as it took Dr C 2 attempts to get the blood. Jett was madly sucking on his dummy and gripping my finger so tight.. My poor baby.. In the end they couldn't test for the coagulation as the blood clotted.. (Ironic lol) The liver function test came back and it was elevated. That is due to the TPN. They will just monitor it.. Dr C is still undecided whether he wants to get more bloods, but they gave Jett a vitamin K injection just in case there are problems with him clotting.
Later that night I got a cuddle. I love cuddles with my boy.. I never ever want to let him go! He was asleep when I was holding him, but so very alert later on that night! I can't believe how different he looks dressed and in an open cot!! I even managed to get a nice pic of him with his eyes open, which is a miracle, normally he frowns because he hates the bright light..
Her are some pics of him in his new open cot!
Thursday, Day 71 10wks old today!
OMG look at my baby!!!!Today was such a milestone! With a bit of creativity with a pair of scissors, we managed to dress Jett in his own clothes! I only had to cut out one arm for his central line and when the pic is taken from the right you can't even notice lol.. He looks very very cute!!! He was washed and weighed yesterday, he is now weighing in at 2666gms! He is getting so big. I wish I could take him home.. If only he'd been born now..
His oxygen requirement was higher today at 40% and his carbon dioxide was high at 85. He is compensating with his PH level, but still, it's very high. He is still having very very thick blood stained secretions. Dr C is still undecided whether or not he wants to do repeat bloods for coagulation. I don't think much else happened, I am just in awe of my beautiful baby who looks so much like a full termer. It's so hard to believe he's so sick..
Friday, Day 72
Well today Dr C decided that since Jett is almost 36wks adjusted, it's time the parameters of his oxygen saturations were changed. Previously, the machine would alarm if his sats went below 83 or higher than 94.. Now apparently because he is much older his sats should be sitting in the high 90's always.. Now his machine alarms if his oxygen sats go below 88..
This is really annoying and a bit depressing because he doesn't always saturate that high.. This means 2 things.. 1 his alarm goes off all the time, and 2 his oxygen requirement is higher. Oxygen is a drug, and it has it's risks. I really wanted to get his oxygen requirement down, if possible to 21% which is room air, now that seems another goal that wont be met in the near future :( Today his oxygen requirement is sitting at 42% :(
It is a very stark reminder that although my baby looks full term, is big and alert (not to mention GORGEOUS!!) he is still a very very sick baby. I was advised today by the nurse that it is almost definite he will remain ventilated until after his next surgery.. That's a long time to be ventilated and his little lungs are getting more and more damaged :(.. It's also possible he could require a tracheostomy if his ventilation is going to be long term..(It's possible, not definite and his Dr would decide if this is necessary)
This journey has already been long and it's going to be even longer.. I was also reminded that there is a possibility Jett wont come home at all... I know that. I know there are still many hurdles to overcome. I know he may not come home, but it is so fucking hard to believe when you look at him. He's gorgeous! He's so alert now, so big. It's so hard to not pick him up. It's so hard to imaging that he is so sick because he looks like any normal newborn baby. (just with tubes).. So today I came out of my little world of denial for a minute but I still have hope that I will bring my Lil Jett Plane home... One day next year..
Abby, hugs for a such a demanding journey for both you and Jett. It is so hard to believe that he is so sick as he is just gorgeous and he is such a strong boy and growing so well. I can't believe his head circ and weight after just 10 weeks. I would love to come visit again, but we've been pretty much sick since I saw you last. So no visit for us. But as ever, you and Jett are in my thoughts. Stay strong. You both are awesome.
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