Yeah, this is why I never blog or journal..I suck!

What's happened in the last couple of weeks? Sarah's flow is down to .5 and her O2% as low as 21 (room air) but she does sometimes need a little extra support so too soon to tell the cannula goodbye. Her feedings are coompressed to just 45 minutes and she's doing great with the bottle. Jonathan's needed things to slow down a bit and taken some small steps backward but his flow is back down to 1 as of yesterday. His feeds went down to an hour then back to 1.5 hours and then to 2. Guess he has more reflux issues than Sarah (she's on Pepcid and he is on Prilosec). BIG news is that Sarah has been breastfeeding for a week. Just once a day and we are still working on latching on properly though she CAN get a good latch and has gone as long as 10 minutes sucking. Jonathan started yesterday and took to it right away...he loves to suck so I knew my boy would do well! Both are over 4 lbs now...they'll outgrow their preemie clothes soon (sniff, they are so cute). Both are on a three hour schedule now so I spent 3 1/2 hours with each baby and pump for each in their respective rooms. There's a light at the end of the NICU tunnel...we are just 34 days from their due date and they should be home around then....hurray!!!!

Jonathan got a bottle today! A whopping 5 cc of breast milk

He did beautifully with it despite also having his flow lowered to just 1.5 today. I know it's a wee amount, but our NICU takes a very conservative approach in many areas. I am surprised they are moving so quickly with him now. Just two days ago his flow was dropped to 2 and yesterday his feeding tube was changed from transpyloric to gastric (small intestine to stomach). So I was surprised to see two changes today. But he took to the bottle like he'd been nippling his whole (tiny) life. The nurses rate their success at each feeding in 7-8 areas and he did perfectly in all except the shortest, most minor desaturation at the start. Yay Jonathan! Pictures will have to wait - head nurse said no more taking digital camera in and out so I have a disposable in there at present. :/ Sarah is down to a flow of 2 so just a step behind him. :) And my little miss is up to 3 lbs 10 oz now - double her birthweight!!!!! Jonathan has a ways to go as he's 3 lbs 5 oz today but still, is progressing perfectly.

Both babies had lovely days today. I checked out Sarah's apnea record (desats and bradies are recorded here too) and there was not a single entry for the last two days (Jonathan's was with the doctor so could not check). I know we'll never move to the feeders and growers rooms due to Jonathan's MRSA but it's nice to feel like they are not far from being there developmentally.

Oh, and Sarah moved into the other isolation room! Her isolation is more precationary than Jonathan's to keep her from contracting MRSA inadvertently since so many nurses take both babies but she and Jonathan are "next door neighbors" now. :D I think she will love it there as she has great difficulty with the sounds of the NICU. Have to bring another CD player in for my little princess.

Hmm.....todays news. Jonathan is down to a flow of 2 already on his nasal cannula and doing well! Sarah is at 2 1/2 now and she too is doing well. I asked about Jonathan's cyst in his brain...it's exactly the same size and nothing else has changed, so good news there. The high points of the day were Sarah's first tub bath - she cried at first then settled down and seemed to enjoy it, or at least resign herself - and Jonathan smiled for the camera, twice. It's a little blurry but I will treasure these pictures. The LOW point: their primary nurse was at lunch (and I was pumping) when Jonathan's alarm went off. His heart rate was over 200 for at least 10 minutes and it was clear he was moving all over in there and no one did anything. >:( I had to ask a nurse to go in (I could not, or would not be able to go see Sarah at all that afternoon, but was at the point of making the sacrifice for my boy). I asked if she could comfort him and she basically said she was too busy. Then our wonderful nurse Gladys came back and went in and held him till he calmed down....a good 15 minutes. Why did all the nurses ignore his alarms? He's never even gone as high as 180 that I have seen before. It broke my heart. Other than that, it was yet another wonderful day. My babies are loving the high flow nasal cannula life!

Another good day today!

Jonathan's flow is down to 2.5 already and he just keeps high satting (with the occasional minor desat thrown in). They both lovvvve the cannula. I haven't seen either desat below 70 since we switched. Talked to his doctor about what his expected plans are (and Sarah's should follow). They will try to get his flow down to 2 in the next couple of days, then move his feeding tube from intestines to his stomach. Then his feeds will gradually become shorter and shorter till he can tolerate a bolus feeding. Then we try bottle feeding! Around then I will get to start non-nutritive sucking at the breast with Sarah...I had to choose only one baby thanks to the ^%&* MRSA to breastfeed and chose the uncolonized one though really wish I could have chosen Jonathan as he is so much smaller. But I couldn't risk becoming colonized and somehow passing it on to Sarah.

Jonathan and I had two lovely snuggly sessions and Sarah did mostly well but decided both times after a half hour or so that it was time to get back in her bed. That's one huge benefit of Jonathan being in isolation - it's much quieter back there so easier for him to tolerate being out. Poor Sarah - when I got there all I did was open her isolette and put the cover up and she dropped 10+ points and desatted. Covered her and closed it and she immediately came back up. How more clearly could she have said "no thank you mama?"

They are such amazing babies. Both have already turned their head from one side to the other while on their tummy and love their hands (they will get them in their mouths soon)...both have huge, beautiful smiles (for me and for Gladys, their wonderful primary nurse)...and Sarah has also turned her head to track my voice and reached for the camera when I was recording her! Really amazing considering how tiny they were and still 7+ weeks premature. And on Thursday we are half way from birth till our due date. Grow babies grow!!

This has been a rough road but I am so grateful all is going well so far. So very grateful.