26 weeks gestation!

Day 13, and Jasmine was 26 weeks gestation already!  She was doing so well, she'd managed to come off the humidity and was having feeds of 2ml every hour. 
She was tolerating the feeds, her blood gasses were good, and although she desatted frequently when she was handled, her oxygen levels were still good.  Although I did notice that she didnt desat so much when I was touching her.  Maybe it was Mummy's loving hands....or maybe she just really didnt like having her cares done!!
I was excited at the thought that we might be getting closer to kangaroo cuddles, I watched the other mums around me with envy as they cuddled their bub's close, and longed to be able to experience that muself.
She had her hand and footprints done today!  They are tiny!  4cm long.  But they have grown since her birth.  Its interesting to note that her hands and feet appear quite large in proportion to the rest of her, and for a time I was worried something was wrong with them, but I kept it to myself.
Since her birth, Jazz had been wearing a huge red and white striped beanie to keep her little head warm.  Today Bec gave her a lovely white one that her mum Kerryn knitted.  It fit much better and looked so much nicer.  Her skin is improving daily and is also getting thicker, she has gone from red to a brown colour as her body lays down new skin.  I was sure she was looking bigger and when she tolerated the handling better, would be weighed again.
Her oxygen was 26% this afternoon, still a far cry from where they thought shed be 2 weeks ago!
When I called that night at 10.00, she was still doing really well.  The nurse said they'll  be taking out the long line soon.  Still tolerating feeds, tummy soft, Co2 has come down, oxygen between 25-28 and she had done a huge poo!
It probably seems wierd blogging about poo!  But for a micro prem even the most mundane thing can be a big deal and a major event!  They are born before their little digestive systems are ready and so much care has to be taken to ensure their little bodies are coping.

26 +1
Jazzies blood gasses were up a bit this morning, and she was desatting more too, still great though.  It was going to be a big day for my little poppet - x-ray, blood test, long line comes out, and an echo to see what was happening in regards to the PDA.
It was awful to see her having her blood tests, they had to take blood a lot, not just once a day, and it was taken from her feet.  The first time I saw it, the day after she was born, was heartwrenching, they prick her heel and SQUEEZE.  Imagine squeezing one of those red grapes, that was what it reminded me of, it looked as though her poor little foot would explode.  It hadnt really improved since then.
At 12pm, Jazz had her echo, she coped really well during the scan, and it took a very long time to complete.  She only had one major desat and oxygen was increased to 47%, but decreased to 28% not long after it finished.  The scan showed her PDA was large, 4mm.  Any other time 4mm would seem small, but when you consider Jazzies heart was about the size of a cherry it was massive!   It was also causing her grief, so she had to have it treated.  She'll start on medication to close it once shes finished her course of antibiotics.
One of the neonatologists, Arvand, has a bit of a prediliction for PDA's, its his special little interest.  He's gathering data on how well the meds work and what effects it has, so Jazz will be scanned before, immediately after and then about an hour later, once she has her first dose of the medication.
The course of meds goes for 6 days, then they'll scan her to see if it worked.  If it has, all's well; but if not, she'll have a second course and if it still fails she'll need to have surgery to ligate it.  I was hoping very hard that the meds would work! 
By the time Jazz had her cares as well, she well and truly had her angry face on!!  She tried to kick and punch the nurse, she was furious!
Still tolerating the feeds and according to Arvand, some of Jazzies tummy distention might be due to the PDA.  The PDA shunts blood to and from the lungs and organs.  It can cause a lack of blood and oxygen, or an excess of blood and oxygen to these areas, with the potential to cause serious problems and even death. 
Got another hand print today.

26+2
Jasmines feeds had been increased yesterday to 3ml every hour due to the removal of the long line.  And so far she was tolerating it well!
When I arrived in the morning, I walked in to find her being very naughty!!!  She'd just had her cares and position changed and clearly was miffed about it!  She was having huge desats and her oxygen increased to 100% for a time.  By 12.48pm her o2 was back to 29%
I was there for rounds and spoke to the neonatologist.  He said all her desatting is caused by the PDA and her immature lungs, and of course the infection she has doesnt help matters.  He said she'll finish the anti's on wednesday, have another echo thursday to recheck the PDA, then if still large, she'll begin the meds.  Because she was over 2 weeks old, there would only be a 60% chance the meds would work, so i was crossing my fingers she'd be in that 60%.  I was told the meds can cause problems with the kidneys and intestines, so she would need to be very closely monitored!
Jazz would be weighed later tonight, unfortunately I wouldnt be there for it, but Bec, the nurses, and I all made our guesses as to her weight.  Natalie rang and informed me that I was closest!  I had said 610g, she was 579g!  She'd put on 139g in the past week!!  Big girl!!

26+3      
Jazzie had a pretty good day today.  Her oxygen was around 30%....slowly creeping up, but still great!  She was still desatting, but not as bad as yesterday.  She was awake and wriggling alot!!! And she was now on 3ml and 4ml feeds alternating each hour.
The day was pretty quiet, which was great.  I spent the day talking to her, doing her cares, giving her reiki, having coffee, and of course expressing!
That night, Paul and I went back in.  Shes a funny thing.  Paul put his hand on her head which she was ok with, but when he started stroking her nose and forhead she chucked a huge wobbly, put her furious face on and started crying.  Its strange seeing them cry.  You can tell theyre crying from their expression and body language, but because the ventilator tube means air doesnt escape and go past the vocal chords its completely silent!
Paul got to do his first temperature check on her tonight.

26+4
I got a phone update at 9am.  till alternatin 3 and 4ml hourly and tolerating it well.  Still lots of desatting, oxygen between 30-38%, other than that she was doing great.
When I got in to her at 12, they asked me if they could put her onto a state of the art respirator.  This respirator was used in the UK and had just been trialled in QLD, and they wanted to try it on Jazz.  I said yes, nothing but the best for my little poppet!!  Once she was hooked up to it, a man from the manufacturers had to stay by her bedside all day to teach the nurses to use it properly.
She was almost looking chubby today!  They weighed her in preparation for her PDA medsand she had put on 18g in 2 days, and now weighed 597g!  Although she was still desatting a lot, she was still doing it less with the new respirator than  she was with the old drager one.   She still wriggles and squirms waaaaay too much and splints, which is when she holds her breath , upsetting the respirator, sending it into a tizzy during which it beeps loudly at you and screams (in words written on the screen) BREATH NOT DETECTED!!! Scares the shit out of you at first! 
Rang at 10.00 that evening to see how her afternoon/evening had been.  She was doing really well on the new machine, not desatting as much as she had.  She'd had another echo done at 3pm, and the PDA hadnt changed at all.  They said theyd be taking more blood overnight and get a baseline of urine electrolytes so they can accurately monitor her kidneys and urine output when she begins the indomethicin tomorrow.  She was tolerating the feeds well still and had a big poo!  Her oxygen was on 38% but usually goes down to 30% overnight, which her nurse Janelle said was great considering the size of her PDA!

26+5
Overnight some settings needed to be altered on her ventilator.  When she was having her cares she was having big desats and braddies.  Her Co2 went up earlier, but had come down today.  She had a chest and tummy xray and a repeat blood test.  Her feeds were cut backto 1ml per hour because the medication can cause stomach distention.  When I spoke to the neonatologist, he said the xray showed a loopy bowel, which could be wind or poo, but that she needed an ultrasound to check it.  Due to the loopy bowel, the meds may not start until tomorrow.
I was there when Jasmine had her ventilator tapes changed  and the ventilator tube repositioned today!  That magical moment when I saw my daughters face for the first time!!  The tapes are huge on her face so its very different seeing her face without them, she's beautiful!!  Once again, I got weepy, she was 18 days old and this was the first time I had truly seen her face!
That night at 6pm, I called for my update.  She was having big desats because she was being repositioned and was having her bum changed. Jade said her tummy looks bigger than when she had her yesterday, but it measures smaller and its soft.  Paul and I went in tonight and she was behaving herself for Janelle.

26+6
Janelle broke her overnight!!  She had major brads and desats!! I changed her and took her temp....she didnt desat for me.....mummy's girl!  On 28-30% oxygen.  She had another xray and tummy scan and handled it really well.  And her Co2 was the lowest its been in a while so she's starting the indomethicin this afternoon.
Storm, Kai and Paige came to visit.  They hadnt been able to come in until now due to catching viruses!!  They loved her and couldnt believe how small she was!  It was love at first sight.  Storm nearly cried.  Kai told every stanger he met in the foyer all about his micro premmie sister upstairs and Paige just couldnt stop talking about her!!
Jazz started the indomethicin at 1.35pm.  Scanned immediately after, she tried to kick Arvands hand, when she couldnt, she decided she'd hold onto the scanner probe and do the scan with him.  There was no change in the PDA yet, but Arvand said she had a strong heart!  An hour later she was scanned again, I had gone on a break and came back to find Arvand scanning her and a nurse pinning her arms down.  It seems she had decided that as she had helped him before, she clearly knew exactly what she was doing and tried to take over!!  This scan showed that her PDA had narrowed by 1mm!  Arvand said its not that common to see narrowing so soon, so he hopes its a good sign.  She was extremely alert and active when I left this evening.
9pm I got my nighttime update and Jazz was still doing good, oxygen had to go up with her cares again, that seemed to be becoming standard.  Her feeds may be stopped as her tummy is once again distended and her bowel is loopy.