Due thanks

All right, a few thank yous to send out:

Aunt Kathy - Thank you SO much for the beautiful blankets for the girls. I already laid Eve down on hers so she could have some lay flat time today. She was quite comfortable. Lily will become acquainted with hers tomorrow we hope! I gave Eve the larger one with more colors. Funny I chose to give the smaller girl the larger blanket! Lily will get the yellow and white one. They are so very soft and I look forward to winter when we can snuggle together with them! The bears and the outfits are cute too. I love yellow, maybe you remembered that when you bought them!?

Aunt Eileen - My gosh, the girls are really going to get that big!? It's so funny to think that, but they definitely will and we'll definitely need your gift! It's nice that someone bought things that are bigger because we have loads of preemie and newborn clothes, but few beyond that and the girls are only growing bigger by the day!

Aunt Kris - Thanks for the pediatrician suggestion. AND, if you can help us get Enfamil for Lily that would be SO helpful!

Grandma L. - Thank you very much for the $50. We will put it to good use on something for the girls. There are many things we still need for them, and we appreciate your help in getting them! I'll try to remember what we buy with it so I can tell you what it was!

Jessica - We might have said it already, but we'll say it again! Thanks for the swings and the crib sheets. Eve actually loves that swing, she'll just lay in it for hours without fussing. We don't really turn it on yet, but some day... And we'll see what Lily does in hers hopefully tomorrow. And we are going to dress both girls in those little orange checkered dress/onesies tomorrow when we bring Lily home. All theclothes you bought are SO adorable! I love dressing Eve in them and soon Lily too.

Missy or Andrea - I don't know which one of you gave us the infant carriers. The "pocketbook" like pouch thingy is the BEST thing in the world! Eve is so cuddled that she doesn't fuss in that and she can even be wide awake! She's a bit small for it, but we manage. And three people yesterday asked me where we got it! I couldn't tell them...I didn't know where you got it. While I can't remember who gave us that, I can thank you MIssy for the stuff of Henry's that you gave us and for the other things you sent up. We have already used some of Henry's stuff for Eve. Oh and, I think it was you Andrea who gave us the bath stuff? (If not, I'm sorry to the one who did...) Eve liked her bath the other night and looked cute in her bath towel...I'll try to put up the picture.

Grandma M. - Even though you don't get on here, I have to say thank you for all the clothing that you have bought the girls. They will get lots of use out of it. And a thanks in advance for the changing tables, even though we haven't picked them out or bought them yet! We really appreciate all the help you've given us with buying OUR food while we try to afford buying what we need and thank you and Grandpa Pete for the help with the furnace...and the sheetrock, and the cars in the past, and everything else!

Mara - We would be lost without those carseats and the stroller, so thank you for them! The stroller took a bit of figuring out, but it is very handy to not have to unstap Eve (and soon Lily) from the carseat and go back and forth between the two things. It would have taken twice as long. We'll have to do the extra bases thing too, because those are a pain in the butt to put in the cars!

We are looking to have a real shower at some point, but we haven't really picked a day I don't think. If we do figure it out, we'll be sure to send out invitations. And as soon as we get the girls home, with no monitors or ANYTHING we'll make up birth announcements. I think they'd be more pleasant than the hospital pictures!

Again, if I forgot anyone, I'm sorry. But THANK YOU too! OH and we appreciated all the cards, I showed them to Eve. She slept through it, but I'm sure she appreciates them too!

Persuasion

I spoke with the discharge nurse practitioner yesterday, and because I am ready and willing to spend the necessary time feeding Lily, they are willing to discharge her tomorrow morning. Provided she doesn't slow down and do anything silly for the rest of today. She got a blood transfusion yesterday afternoon, and I was a BIT disturbed because the only vein they could get an IV in was in her head and that is something no one wants to see. But I stayed when theytook it out and it really didn't seem to bother her at all, except the tape coming off the hair... And she seems to have perked up! Olga said this morning Lily took her 80 mL bottle in 17 minutes! I was like, you go girl! Her hermatacrin was 26, which was too low to let her try to get her red blood count up herself. Hence the transfusion. I could have told them she needed it, just based on her color, demeanor and her oxygen saturation. Now I have to go up and see what it's like feeding her while she is awake. I'm hoping she doesn't choke or gag when she is awake! And we have her first pediatrician appointment set up for Friday morning. So, hopefully tomorrow morning, we'll be walking out the doors of the hospital with two babies on a stroller! lily is HUGE compared to Eve, just in her tummy size. But Mom and Dad said, and showed me pictures, that I too had a large tummy. And both Lily and I had/have digestive problems! So it might be something "hereditary" that is affecting her. Regardless of her size, she's still our little baby and we can't wait to get her home and hold her for hours! We need to spoil her a bit too and get loads of pictures like we do with Eve. I will have to spend some time tonight adding pictures to the photo album. I have some more of the two of them together and some more cute ones of Eve at home. Getting a bath, in her swing, half naked because of the heat...

(Oh and Aunt Kris, I did speak with the pediatrician and he is the one who told me to tell the hospital we are ready and willing to spend time on feeding her, we are comfortable with feeding her and we will get her weighed every week to make sure she is gaining. The discharge nurse semed to feel that was adequate.)

One hospital we'll never return to...

I got extremely angry and upset with Albany Med this morning. We told the nurse to tell the residents that we DID NOT want Lily to have another feeding tube put in. We wanted to speak with the weekday attending physician about our plans and Lily's care. WELL, the (&^hole went and signed an order and called me and said, I decided it was necessary and we're doing it. I screamed at her. Lily had had a tube in for the past week (7 weeks actually) and they never once used it to "give her a break" from bottle feedings because she took too long to drink them. NEVER ONCE. Yet when we specifically ask that a tube not be placed, they THEN say, well she's been taking too long and needs it. Bull. She had not been doing ANYHING differently than she had been the whole week so there was no reason they couldn't wait until we spoke with the doctors. I still want her out of there by the week end. But I think it is going to be a HUGE fight. Tomorrow Lily is being "changed" over to the intermediate nursery attending and nurse practitioner. I am calling first thing in the morning to request a care conference and discharge plan. Lily gained 150 grams this week, and while they ideally want her to gain 200, she gained and that is the point. She has consitently been in the 25th percentile for weight and that is what the nutritionist wants to see. She told me today she is pleased with Lily's progress considering all the parameters. And since I have exhibited time and time again that I CAN and DO know how to feed Lily and quicker than many nurses, I fully believe she would do better here. And Eric agrees. We are so angry with Albany Med that we are spitting nails. I told the resident last night, I want Lily out of your hospital and I want her out this week. The feeding tube was the last straw. I called back and DEMANDED that if they placed it, they DAMN WELL Better use it. They have, since I was so very angry and spoke to anyone and everyone. Lily takes bottles a little slow, so she burns more calories doing it. That is the hold-up right now. But she is by no means unhealthy and the more then insert and take out feeding tubes, the greater her oral aversion is becoming. And that is going to make it worlds harder to get her feeding well!

If anyone has any suggestions on what we can do to persuade the hospital she is better off at home, let me know! I said we'd have a home health aide come visit, or do weekly pediatrician weight checks, or both. I said I'd keep in contact with the hospital's nutritionist and she could continue to chart Lily's growth so that if something seems off, we would be able to act on it. But honestly, Eve is doing WORLDs better now and we think Lily deserves the chance to come home and thrive too. The nurses can't always devote the time and effort needed to feed her. They have three other babies bottle feeding at the same time and need to crank them out. That doesn't benefit Lily. Tomorrow I am hoping this new attending is more receptive to letting us deal with Lily's feeding issues at home. The nurse practitioner seemed somewhat receptive today, though she hadn't officially taken over Lily's case and therefore didn't have the information. But she did say I had given her an excellent report to work off of and she was pleased that I was so proactive and obviously able to take care of my baby. I'm taking that as a good sign. Pray that Lily gets all the damn rest she needs with this stupid tube and that they let her out of that prison by the week end.

Put up your dukes

It's time to fight. Lily has taken 24 hours worth of feeds entirely by bottle and I was told that if she did that she could have the feeding tube removed. They are hedging again and saying, but if she doesn't take enough one time we'll put it back. I am going to speak to the doctors tomorrow and tell them we want a discharge plan and we want it to include her coming home this week. Enough is enough. She is out of heat, passed her hearing screen, will pass her development I'm sure, and all she needs to do is eat enough. She gained 3 ounces lasst night. So if she loses a little tonight or tomorrow, I'm SURE she isn't going to be "failing to thrive." The kid is the same age as Eve, who is "in perfect health" according to the pediatrician, so I don't see how Lily could be considered UNDERweight for her age! They are just making her conform to a formula of how much she needs to take and contradicted themselves hwen they consistantly say that every child is different. If every one is different, WHY do you force them to conform to a formula? If Lily is gaining enough, perhaps not EVERY night, but most every night, why not send her home? Eve is thriving and taking the bottles much better than ever now that she is home. So we think Lily will benefit from the consistancy in the feeding styles and the ability to be held more often.
But, as I said, it will be putting up our dukes and TELLING them, we know she is still volatile with her feedings, but if we are sure she is eating the same amount in 24 hours, perhaps not on a strict strict schedule, what difference does it make? She gets the calories and the volume, why does it matter if she does it every 2-3 hours versus every 4. Unless they have a very good reason, which I don't think they do, they have to listen to us. We know her well. She needs to be out of there, with no more tubes being placed, so she can get over her oral aversions. And I know they want to do more blood work tomorrow, and that will set her back more because she needs to continue making red blood cells and the more blood work they do, the lower that number tends to get because babies make those cells slower. Anyway, I guess I'll have to let you know how the arguments go. Lily is by no means "failing to thrive" and i say, enough is enough. If they refuse to let her go this week, they're are going to learn the meaning of angry mother...

Will it ever end?

Lily's girth went up again. From 31 to 32.5. In 4 hours. And she didn't take her midnight feed all by bottle so it's back to the stupid, damn feeding tube and I will tell you guys, I can't stop crying because at this rate she is never coming home and I can't take it anymore. Please pray hard because this is devastating and the worst time in my entire life and I just want that baby home so badly that I can't think about anything else. I really thought we were close and every time we get close, something happens and we slide back. The docs think the increased girth is gas. But they don't know and as long as it continues to happen, she can't come home. She is pooping, so it isn't that. I told them no more breast milk. We tried it again and look what happened. I'm trying to keep the faith, but this is so unfair right now. I can't even enjoy Eve because I want Lily home so badly that I think about nothing else. And I can't stand the fact she has had a feeding tube or suction tube down her throat from day one. That's 7 weeks as of Monday. I keep asking God to just make her well and get her home. I'm still waiting.

A "quickie"

Eve is doing AWESOME at home. She is now taking 80 mL at some of her feeds, which is great because she'll bulk up fast doing that! She had her first well-baby appointment yesterday with Dr. Rabadi and he said she looks in perfect health! We have to go back on the 23rd for her second hepatitis B vaccination shot, which won't make her a happy camper, but hey, it has to be done! Lily is still in hospital, but they moved her to intermediate yesterday and the kidney/bladder dye test that she had to have to see if there was an reflux from her bladder back to her kidneys came back normal, and that is awesome news. I have to find out if they plan to end her antibiotics because of the normal test, they had her on them prophalactically in case of infection down there. She has been upped to a minimum of 80 mL every 4 hours, which is a lot and we are worried she won't be able to keep taking them. So far today she has been taking the 80 mL by bottle, but Nadia worried she might tire and have to have another feeding tube put in. (She pulled hers out last night sooo....) BUT hopefully she won't need another one, will keep up the eating, will come out of heat and will go home. We are still cautiously optimistic.

And now we are off to the hospital to see her. We won't make the 4 p.m. feed, but we hope to make the 8 p.m. and POSSIBLY, depending on us, the midnight feeding. It will all depend on out level of tiredness...

Long time no news

We had a rough couple of weeks over here, but I've finally found time to get on and tell you the jist of what has happened. First off, last time I wrote Lily looked like she was up and coming and would be moving to intermediate soon. Well, the next day she was back to square one with a tummy that measured 33 cm. The night before she was 29.5. So they completely put a stop to her feeds and did a bunch of x-rays and determined she had air in her tummy and intestines and that was why her tummy was huge. They called in a pediatric surgeon who was CONVINCED she had something called Hirschsprung's Disease, which is where the ganglion cells in the colon do not exist and therefore the colon cannot expand and contract like usual. The treatment: To remove the affected portion of colon. And the surgeon at Albany said he was CERTAIN that was what she had, though he had been wrong in the past, and that he felt it affected a large portion of her colon. So he said he would make a two-inch incision in her tummy and remove the affected portion and create an ostomy for her to poop into a bag and then at 6 months old go back in and reconnect the rest of her up so she could poop like normal. The first step, however, was to do a rectal biopsy to determine if she had Hirschsprung's. We waited three full days to hear those results and in the meantime I contacted Yale New-Haven Hospital because if she had HD we were going to move her there to give her a chance at laparascopic vs. laparotomy or Open Incision surgery. Yale's surgeon, however, highly doubted Lily had HD and lo and behold, SHE DIDN'T. She had normal ganglion cells in both layers of her colon. And the next day, she started pooping without her suppositories and it began to normalize in color since then.



Now she is up to 77 mL ever 4 hours of formula, since I'm convinced she blew up like a balloon because of gas. I've been so gasy and so had Eve and that could be the breast milk. Lily's PICC line was removed the other day and we are sooooo hoping that she comes home soon. Like within a week. They were due next Wednesday the 11th so if she does, it is right around when they tell you to expect them home.



And speaking of home, EVE IS HOME. She came home on Monday and she is doing awesome. She takes about 60-70 mL every three to four hours and she is on breast milk with a little formula additive to bulk her up. Lily is 6.5 pounds and Eve is about 6 pounds now. They are both doing great. Hopefully within the week we will have a full house and a complete family after over 6 weeks of back and forth to the hospital. Keep up the prayers though, we need to get these girls through these early days and Eric and I need to keep our sanity. And now....the girls that you've all been waiting to see together: