An update on where our little girls are at, for those who have been following the story to date!
I left the last post about the girls on 22 Sept, which was the day Stacey and I left the hospital. I hope you had a chance to watch the videos - its a weird thing, the first moment that a mum holds her child is almost never captured on video unless you are filming the whole birth (and we never had that as part of the plan!). In our case, the doctor told us we could hold them, and my first reaction was "just a sec, I'll grab my video!" - its one of the few advantages of having your kids in the NICU from birth. I'm sure the girls and mum will love revisiting that short couple of minutes for years.
Anyway, we moved back that day and began a twice-daily ritual of heading in to visit the girls. They began making progress. The girls responded well to the treatment for their PDAs, and after a few days the doctor was prepared to declare that resolved. They were breathing better and better, and towards the end of week 2 he took them both off CPAP completely, so they were breathing on their own. They also continued to increase the quantity of milk that the babies were being tube-fed, starting at 1mL every two hours, and increasing by 1mL every six feeds for as long as they could tolerate it.
There was one piece of not-so-good news early in the week. Both girls had brain scans on Tuesday last week (25 Sept) and were discovered to have Grade 1 Intraventricular Hemorrhages, or bleeding on the brain. The doctors expect it to heal itself and could well have been due to their treatment for the PDAs, so accordingly told Stace and I that we shouldn't be overly concerned about it. Of course, we find it very difficult to be so rational. We do trust the doctors at Raffles (they have been excellent to date, and with recent media reports from Australia I feel very lucky to have them on our team) but it is impossible as new parents not to have sleepless nights on this rollercoaster. Their next brain scan will be on this coming Tuesday and we are hopeful no evidence of hemorrhaging will be found.
Once the babies got to full feeds for their size (13 mLs every two hours) they removed the central lines. From that point the girls were only tethered by the ECGs, which they will continue to keep as long as they are in NICU. Thankfully, they seemed to get through the experience of having a central line without any infection which was our major concern.
We started to relax - the good news was starting to be more regular. I'm happy to say that for Georgia at least that has continued to be the case. The main focus with her is to put on weight. She is now at 1.37kg (up from 1.33kg at birth), breathing on her own and generally behaving! The doctors have now added a little supplement to her milk in the form of medium chain triglyceride (MCT) oil, which is designed to help them with a few more calories. She is now taking 17 mLs every two hours and everyone is pleased with her progress.
Tess hasn't faired as well and seems to be progressing a little slower. She was the first born and her lungs were less developed from the start, so although it is worrying it shouldn't be surprising. We thought the HMD had cleared up for both babies, but late last week her oxygen levels began to flag. After watching her for some time, the doctors put her back onto the CPAP to support her, so that she expended less energy on trying to breathe and more on developing the muscles that will help her breathe independently. As of today, she is still on CPAP - they tried rotating her off however she hasn't been able to hold her own just yet. We are hoping that another day or so should do it.
Tessa will also have a blood transfusion over the next day or so, because her haemoglobin count is low. It appears that she hasn't been able to replace the small quantities of blood that the doctors have been taking for tests (very small amounts incidentally - only 3 mL or so at a time - but she didn't have much to begin with) and so they are going to give her a little extra. Apparently such prem babies have on average three or four transfusions - to date Georgia has avoided the need, probably because there were less tests done on her at the beginning. Tessa is at 1.33kg (up from 1.25kg at birth) and is now also getting the MCT oil as supplement.
So a couple targets at least for this week - we want to get through the brain scans on Tuesday with green lights, and we would love to see Tess finished with CPAP once and for all. That particular device is a miracle in itself and we are all forever indebted to its inventors, but as soon as I see it turned off I will be celebrating a small win ...