Day 20 Jazz hit 27 weeks gestation, she was still doing well, but her oxygen went up overnight due to her Co2 levels increasing to 81. By morning though, Co2 and oxygen were both lower. Her oxygen today was between 30-40%, especially during cares and tube suctioning of course. Her tummy girth is 20.2cm, but soft and stable. Measuring her girth had become a routine part of Jazzies cares. She was still on 1ml per hour feeds and had her second dose of indomethicin. So far her kidneys are fine and urine output is good.
Paul and I visited at 4pm. She had Janelle looking after her, who also had her last night. I dont think I could cope with the late/early shifts these nurses do, some days when you go in, it seems they havent even been home!!!
Janelle said Jazz had a brilliant night last night and this evening. She said she was doing some work at the front desk and every time she looked up to the far corner where jazz lived all she could see were tiny legs going everywhere!! She's hoping Jazz will actually get some sleep tonight! Shes been on her back all day, which is certainly not her preference!! So Janelle will put her onto her belly, so she should be much more settled.
27+1
The first thing I noticed when I arrived today was that the whizbang ventilator was gone and the old drager was in its place. The current neonatologist (they rotate) was Flora. I asked where the whizbang ventilator had gone and was told that at around 4am it had stopped working. They had to neopuff her while they got her off the broken one and onto the drager. Her heartrate plummeted and they had to do chest compressions on her. I got weepy again, its a frightening thing to hear that the machine keeping your child alive broke and almost took her with it! Flora assured me that she was ok and no serious damage had been done to Jazz, but you still worry, how can they be sure.
Aside from all of that, she was still doing well, my god she's tough! Her tummy girth had reduced from 20.5cm-19cm and was still nice and soft, and her oxygen was between 30-40%
She spent the day on her belly, she loves it on her belly, looking very relaxed and occasionally crossing and uncrossing her ankles. I was feeling a bit sad and weepy for the day. I was hit with that element of guilt that you try to avoid as much as possible. But after her near tragedy this morning I was feeling that I had let her down. My body was supposed to protect and nurture her and it had failed her, I didnt know how or why it had, but it had nontheless. She shouldve still been tucked up safe, cosy and warm in her little haven, but instead she was placed in a box and subjected to so many traumas. I sat and watched her in her artificial womb feeling utterly helpless. The only small comfort I could offer when she was being poked, prodded and pricked was to hold her tiny hand and tell her how much she was loved. Although some days even that caused more harm than good due to her desatting. Most days she was fine with me touching her, but some days you needed to touch as little as possible. Being only able to hold a hand or a foot is extremely hard, every cell in your body is screaming out to actually hold, and caress and cuddle your child; to stroke them and soothe them with gentle kisses and a soft voice, only touching a hand or foot actally leaves you feeling more empty and wating to hold them so much more.
When I called at 9 that evening, I was told she had been a good girl. Up and down a bit with the desats, Co2 at 53, coping with food, oxygen 40% and tummy nice and soft.
Tomorrow would be a better day
27+2
I arrived in time for her weigh today. Her Nurse, Yue Lang (Im sure ive spelled that wrong!!) let me give Jazz a quick kiss on the head before she went back in her box! She had put on 71g and was now 668g!!! And that was only with 1ml EBM and no fortifier!! After she was weighed it was time to change her bedding. Yue Lang told me to put my hands in the isoette held out flat, palms up...I had no idea whereshe was going with this, but I complied of course. She picked Jazzy up and laid her in my hands!!! Oh my GOD!! Unless youve been through this you have no comprehension of the emotions that course through your system when you have that first precious hold!! It was incredible and I was weeping, snorting and snuffling the whole time!!! She was 22 days old. While I was holding her, her oxygen was high and she had no desats, I reckon had I been monitored my heart rate wouldve been through the roof and I wouldve been desatting all over the place!! I got one of the nurses to grab my phone and take a photo for me. As soon as the bedding was changed and her little nest fixed up, my precious hold was over, it didnt last long enough.
Aside from when I was holding her, she had been desatting quite a lot and her oxygen was between 30-48%. Yue Lang had her on her back and swaddled, hoping the swaddling would comfort her, but she just kept desatting til she got her own way and was placed onto her tummy. Thats when she settled.
She had her 4th dose of indomethicin and was still coping well.
9pm update- Doing well, doesnt like lying on her back, tummy ok-19.9cm and good urine output.
27+3
Jasmine was pretty much the same today as yesterday, still desatting, and cant stand being on her back. So most of the day she was on her tummy. Oxygen 48%, tummy 20.5cm
She had been sleepy for the last couple of days so I figured she was nearly due for another blood transfusion.
27+4
Another day much the same as the previous ones, which was great! She spent most of the day on her side and hated it!! But she needed a break from her tummy, her little knees were getting sore from too much time on her tummy and it could also hurt her hips, so she just had to suck it up! Today was her last dose of indomethicin, tomorrow we'd find out if it worked. The neonatologist said he could still hear a murmur and told another doctor he thought it was soft to moderate, wasnt sure what that meant, but hoped it was a good sign!! The neonatologist said she would probably need the second course. She had her blood transfusion today, they said aside from perking her up, it could also help improve the desating. She was weighed this afternoon and lost 5g, bugger! Still coping with feeds.
Went to see her at 11pm, she'd had her echo at 3.45. We'd have to wait for the official report, but unofficially, it was small to moderate....much better than large!!
27+5
In at 10am for nappy change. Little bugger poo'd on me as soon as I started wiping her bum. Put her legs down so she could finish in peace, washed my hands, then proceeded to finish the job.......as soon as I lifted her legs she got me again!!!
Still desating, oxygenbetween 40-50%, and still no official report on the PDA, but the results of her latest cerebral scan was no abnormalities detected!! woohoo! Shes doing so well!!!
27+6
Paul and I went in this afternoon. Jazzies nurse got my hopes up saying I could have a kangaroo cuddle, but unfortunately Jazz got a bit cold so I was shot down in flames.
The nurse and I changed Jazzies bedding, while Paul had his first isolette hold. Her feeds were increased to 4ml per hour, she should definately pork up now!! Still desatting a fair bit, but that seems par for the course.
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