JETT - (Yesterday, day 27)
This post will be all over the shop as I try to recall all the events as accurately as possible...
Yesterday was day 27 and what an awful day.. It started when I called the nursery at 4am. I was told he had been unsettled and had to be bagged. His oxygen was increased to 65%, but he was settled at time of call.. My next phone call 2hrs later also brought scary news, his carbon dioxide was in the 90's so his rate and pressures on his ventilation had to be increased. His rate went to 60 and his pressure (PIP) was increased to 24. I was at the hospital soon after. He had to have a drip put in and an arterial line again.. It was so hard watching all these things happening to my son. He's so tiny, so fragile..
The nurses also did blood cultures as they suspected infection. He had a chest xray which showed an enlarged heart and patches of lung collapse :(.. He was given antibiotics just in case, and also lasix as he was becoming very puffy. Jett also had an echo, as they were a little bit concerned about the duct in his heart..(all I heard about that is it's still moderate, so they are not treating it at this stage)
His HB was low (90) so was also given a blood transfusion.
It is looking like Jett will need steroids to get off the ventilation, but that can't be started until infection is definitely ruled out..
Then at 8pm I was up having dinner and got a phone call advising me they were doing an abdominal x ray as Jett had started aspirating bile and his tummy was more distended.. The x ray showed air, and the repeat one 2hrs later showed the same. Good sign, not much had changed but still very scary.. Feeds had been stopped earlier to give his body a break and have not been restarted as yet..
Jett also slowed down with his weeing, so we were told he may need a catheter! Luckily though, he picked up and it wasn't needed.
During all this, I was a wreck, terrified he had an infection, and really scared as I watched the ventilator keep him alive.. Where he had previously been triggering breaths, yesterday he wasn't at all.. Very very scary..
It seemed like yesterday his whole body was giving out, heart, lungs, bowel, possible infections... It was the 1st time since his birth I thought he may not make it. :(
Today (Day 28)
Today he is a bit better. He pooed 3 times overnight which was a good sign his gut was starting to work. His blood cultures are still negative which is a great sign and although his rate on his vent has stayed the same, his carbon dioxide was only 55.9 on his last gas so his PIP has come down to 21 and his oxygen is sitting around 36%..
Dr D is still concerned about the distention and air in his tummy. He had a repeat x ray and they have decided to take him for contrast imaging. It is being organised for today,he will be transported to another floor. Although I wish it didn't need to be done, it is a good sign that Dr D thinks he is stable enough for him to be transported.. I'm waiting for the call while I am writing this, so I will be there with him.. The other good news is it doesn't look like his bowel is perforated, so no reason for surgery..
He is still extremely puffy, so had more lasix this morning.. He is looking unwell, his face so swollen he can barely open his eyes. This is so scary..
MUMMY
I am feeling a bit better today. Yesterday was spent in tears. It was so scary and knowing my Son is going through all this is just so hard. It is such an unfair world.. My baby is suffering so much. He is such a brave boy though, and I try to be there with him as much as I can.. I feel so guilty that my body couldn't carry him to term..
I felt so sick yesterday I could barely eat and although I was pumping every 2hrs I was getting hardly anything. Today is better though thank god. Although he isn't feeding, I can't lose this supply..
I was really scared he had NEC which is a condition in prems. It's basically where parts of the bowel die and Can be accompanied by an infection. Bubs can die very quickly and in all honesty yesterday was the 1st time I really thought he may not survive. It was the scariest thought, and at the same time I felt guilty for even thinking it.. I have had so much faith in this baby during my pregnancy and during the last few weeks, to even lose that faith for a second felt awful..
We have lots of people praying for him though, as well as some very special Angels watching over him and it must be working because he is better today.. Not out of the woods, he is still a very sick little baby, but he appears to be improving, if only a little bit..
Mummy has her faith back, and knows my brave boy can do this.. We can do this.. Jett will be coming home..
I am currently waiting for the call to go with him for the contrast imaging.. Oh and I changed my 1st pooey nappy today!! Great news he is pooing but he still needs the contrast imaging :( Keep that gut working little man! We need him to be stable so we can have cuddles again!!
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