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.

So...BOTH babies were put on nasal cannula today! Sarah's doing well (was as low as 27% oxygen today) and Jonathan is doing beautifully (as low as 23% - and room air is 21%!). So nice to see their hair and noses! Sarah had spent time on the cannula and also vent so I'd seen hers, but Jonathan's I'd seen for maybe 2 minutes since he was born. They still desat and brady from time to time but no worse than on CPAP and maybe a little bit better.

Today Miss Sarah was lying in her tummy and turned her head to the other side by herself. AND while on her back turned her head to track my voice. Jonathan's just discovered his hands, which Sarah did a few days ago...I cannot believe my amazing wonder babies!

Both babies had peeps go down today!!

Sarah's peep is down to 3 and Jonathan's to 2. And oxygen requirements for both staying around 28-29%. I am so grateful - high flow cannula is hopefully around the corner. They will be happy to lose those masks/prongs. They still desat and brady from time to time but are doing better at maintaining saturation overall. They seem so happy now that they are properly swaddled. Feeds are up to 7.5 and 8 cc/hr respectively. Yes, it really does take weeks to get to 1.5 tsp/formula on a continuous basis per hour!

My day was a massive, endless brain fart, forgetting things...ohhh....4 times through the day, from snappies to my purse and from breast pump kit to cell phone. I went back to the hospital to get my phone and went in to peek in on Jonathan (could not see Sarah as I'd not bathed/changed since I'd last been there and had MRSA cooties) and he was lying there quietly wide awake. I could not resist the offer to hold him but forgot to ask for his pacie so ended up trying my finger. He knew it wasn't what he was used to and it could not have tasted great (since I had gloves on) but he settled down and went to sleep. It was heaven holding him with no sense of needing to get on to the next thing like when I am there during the day. I do wish I could have seen my Little Miss Spider but will spend more time with her tomorrow. She pooped her first outfit today! lol the things we celebrate in the NICU.

Time for one last pumping then bed...

We are back on breast milk again!!

We got a fridge this afternoon...hurray!! I wish I had known - would have brought some milk from home to be sure they'd have enough to last with what I pumped at the hospital. So they'll have a couple more formula feeds before I get there tomorrow then we should be on 100% breast milk from there on out. I am a happy mama.

Jonathan's able to maintain temperature now so in clothes too! He seemed to really love it...had a great day today - relatively stable. I rocked him today instead of kangaroo, which was a nice change. I think though that his paci wears him out because he sucks pretty hard on it when I hold him, and he desats at about the 30 minute mark after doing great till then. It's been a consistent pattern for several days. So paci time will have to be maybe 15-20 minutes only. His peep kept dropping to two and he did well regardless, with oxygen averaging maybe 29%. I got some great pics of him tonight showing his many moods.

Sarah had a good day too...her peep also would not stay up and she still did well with similar oxygen as her brother. Her feeds are up to 7 cc/hr now. And she's in REAL preemie diapers...the little ones (Pampers P-XS) claim to fit up to 4 lbs but she is so short for her weight that at 3 lbs 6 oz, she is just about out of them. She's starting to get vocal enough that she can be heard with her isolette shut. I do hate for her to cry but am glad she can cry more loudly now. On the ventilator, she could not make a sound.

They've come so far...will post pics from when they were tiny - he was 2 days and she was 5 days. Hard to believe it's only been 6 weeks since they were born when they've changed so much.

The big news today...Jonathan's peep (CPAP pressure) is down to 3!! We'll be on nasal cannula yet. Sarah's still at 4 but having a hard time maintaining peep - it went as low as 1 earlier and she still maintained oxygen saturation above 90%. Sarah did not do well out of her isolette today but we did have a lovely visit at her 4:00 hands on - she was very alert and smiling. Jonathan and I hung out in faux kangaroo for an hour...he spent almost the whole time sucking his paci but I think must start breathing shallowly after 20 minutes or so - will have to remember to give him a break before he desats. He's such a sweet boy...I wish I could give him kisses.

Other good news - we get our fridge Monday. Thank you thank you thank you God. My babies can start on breast milk again!

Good day today with the wee ones

Sarah is 1450 grams and her nurse said she could wear clothes!! I'd brought some in, knowing we were close to getting to wear them, but had not imagined it would be today. My princess is so cute! She found her hand today and stared and stared at it then put it to her face and slid it toward her mouth, trying to figure out how to get her fingers in her mouth. Not too shabby for a 31.5 week preemie. She had a great day other than one brady while I was there - did a great job maintaining her oxygen saturation even though her peep kept slipping.

Jonathan's hematocrit was very low so he got 20 cc of blood today over the course of 3 hours, I realize it doesn't sound like so much, but they used to only get 8-10 cc at a time. My boy is growing! He started losing saturation as we faux kangarooed and was threatened with a return to his isolette. I decided to rub his back...and he loved it! He was able to maintain high saturation beautifully and when I stopped a couple of times and he fussed, as soon as I started again, he settled. Between that, kangarooing, and a loud paci sucking session, he was one content baby. Pic is of him getting his bath Saturday - did not get a good one today.

Yes, watch me blog!

Today my wee ones are 5 weeks and 3 days old. I promise to eventually go back and fill in all the blanks in their lives so far, and how I came to deliver at barely 26 weeks.

The big milestone today - Sarah lost her picc line! She's getting all her feeds continuously via transpyloric feeding tube, and also went up to 24 calorie formula. When she reaches 1500 grams in a few days, she will get to start wearing all her preemie clothes, so am excited about that too. During her 12 pm hands-on care, she smiled and smiled at me nd was alert for a good 10 minutes. It is absolutely heart-melting. Who would think a baby still 9 weeks premature would smile socially? Her nurse Gladys saw it and did agree they were real smiles. Still cannot manage to get a picture of her smiling, mostly because it's too hard to drag myself away long enough to get the camera. Her other accomplishment was to somehow maneuver herself over the side of her nest - she was sleeping between it and the isolette wall at her 4 pm hands-on! And she is showing her temper again - she is one feisty little girl! She doesn't get sad - she gets MAD. We had a lovely time rocking today...she kept her oxygen saturation the whole time.

Jonathan had another up and down, bradying (bradycardia, where the heartrate free falls from the mid 100s to as low as the 60s) kinda day. He has a hard time finding his happy place, and his blood oxygen goes from too high to too low in as little as a minute. I am worried his PDA has opened up further...requested a visit from the cardiologist tomorrow, so hopefully they'll get an echo scheduled soon to assess. He also apparently did some isolette exploring today - his nurse told me she found him with his head against the front of the isolette! He had almost no alert time during our time together, but we did get to spend over an hour doing our faux kangaroo care (since my poor boy contracted MRSA, we can have no skin to skin contact, so real kangarooing is out of the question, sadly). His weight is still way behind Sarah's - he will likely start 27 calorie formula tomorrow to give him a boost.

Operation Pump and Dump is drawing to a close...one more day! Then Tuesday and Wednesday I can freeze my milk, and Thursday the babies can start getting it fresh. Yay!!! Fresh even if refrigerated has significantly more antioxidants than frozen, so this makes me happy. They've got to be off CPAP before they can begin bottle feeding, and hopefully they will allow Sarah to at least begin non-nutritive sucking at the breast then so she can start getting an idea of what they are for. Jonathan though...I will almost assuredly not get to breastfeed till he comes home. :( I hate that we must be punished for something that was out of our control.

Uh...yeah. I had great plans to blog here

Suffice it to say, I had my babies 14 weeks early on 7/16. Sarah and Jonathan are beautiful babies and I truly do feel like God blessed the broken road. Maybe I'll actually start blogging here again so I can remember the details of each day.

So here I am in Albuquerque, one day post transfer

We transferred three blasts yesterday. Transfer went well...I was relaxed, no cramping after. The only problem was my bladder was too full and I had to partially empty it THREE times to get it to the right fullness. Yes, that was not fun. I do hope that after all I have gone through, that this is the magic cycle. Amazingly though, if it's not, I am the top person on the waiting list at another clinic! I just found out today. They are knee deep in an egg vitrification study so I am waiting till things settle a bit and they will send the profiles to me. I feel so very fortunate.

It's too soon to have an inkling as to whether this cycle works but I do feel a bit crampish so we'll see. I will likely pee on a stick in the morning. Yes, I have no self-control. I have loved the last couple of days...it's so peaceful to be in this little hotel room with no responsibility other than giving myself the occasional shot...I could live in here forever if someone would make Trader Joe's runs for me.

Saturday it's back to the grind with the foster animals but my sweetie Preacher (aka Caspian) is getting adopted next week so I'll be down to one normal kitty (Milky Way) and one with diabetes (Oliver Twist). When normal kitty goes, I will be fostering another diabetic baby! When I had a kitty with heart disease, it was easy enough to add a second and I think it will be the same with diabetics. Am debating about fostering a very sweet cocker spaniel who is obese with heart disease. It's funny at this point...my animals tend to all be special needs regardless of whether I seek them out or not.