Day 70 Update

Good Morning Everyone. I hope everyone is ready for Turkey Day tomorrow!

Yesterday we had the pediatrician for Leah and Micah and the treatment team meeting for Golda. Golda's meeting was first, at 11 am. Pepa came with me to St. Mary's so he could feed and watch Leah and Micah while I was in the meeting. He propped the bottles in their carriers and then took them out for burping - luckily the babies were in cooperative moods and it went smoothly. In the meeting I was introduced to Golda's OT (occupational therapist), PT (physical therapist), ST (speech therapist) and pediatrician. The social worker rounded out the team. The OT and PT do the same things in babies this young; they are working on getting her to do regular baby stuff - support her head, push up on her arms, sit up with help, lay on her tummy, stretch out her arms and legs as well as follow objects with her eyes and head. Physically, she is a little delayed, but not "officially" since with her adjusted age she is only two weeks old! But, because of her low weight she doesn't have the muscle mass yet to hold up her head or really push up on her arms, but she is getting there! The speech therapist has been working with her so she keeps her suck reflex - she puts her pacifier in her mouth while she is eating and works on oral stimulation. The pediatrician said she is doing well medically, but isn't fully stable yet. Her G-tube is still looking red but is getting better with the bactroban topical antibiotic (stronger bacitracian). Her ankle wound (from Golda pretending to be a grasshopper) is also looking better now. She is up to 2.06 kg which is finally an improvement (4 lbs. 8.7 oz.) over the 2.03 kg she was hanging out at. The pediatrician is pleased that she has starting gaining again since moving there. They are anticipating that she could medically stabilize in two to three months, as she grows bigger and at that point we can re-visit the idea of her coming home to wait for her surgery. They feel that she will probably be covered only by Medicaid at that point and that they will pay for a nurse to watch her for eight hours over night while we get some sleep and/or tend the other babies. I am not getting my hopes up since it may not happen, and in fact we may choose not to bring her home before the surgery so she can continue to get the care she needs while we continue to give the other babies and Harry the care and attention they need. The good part is that we can do trial runs - over night visits with her at St. Mary's and at home - before making any decisions.

Leah and Micah went to the pediatrician for scheduled vaccinations. I asked to speak to the doctor as well because of a few issues. First, we have all been fighting off coughs and colds and I wanted to make sure they didn't have it before getting the shots. Their throats were fine and their chests were clear so that was good. Next, Leah actually lost a little weight over the last week. She was 8 lbs. 4 oz. but this week she was 7 lbs. 14 oz. and we were concerned. Micah, however, keeps right on gaining regardless of how much he spits up! He is now 10 lb. 4 oz. Additionally, the AR formula was working to keep the food down during burps, but they still spit up and complained often while eating and after. The doctor recommended changing the formula to Alimentum since that is the next one the GI docs will recommend we try.

We got the formula last night so they have been eating it now for five feedings. It definitely comes back up much more than the AR (much more) but they do seem a little more comfortable on this formula. We are going to stick with it at least 48 hours and see how it goes, but oy, this stuff stinks when it makes its return visit!

Harry had his Thanksgiving show on Monday at school. He looked so cute in his pilgrim outfit! I saw him wearing the hat and shirt while he was sitting in his chair waiting to go up to the stage. When it was his class' turn his hat was missing in action. No clue what he did with it! Anyway, he was the last in the line to go up to the stage and I was watching with anticipation to hear him say his lines since I knew he knew them (we practiced almost everyday). Little stinker just stood there looking around and didn't say a word! Luckily they said the lines to the poem and sang a song as a group. He added a half a line at the end of the poem and sang the last line of the song, but that was it. To see him up there he didn't look nervous, but he certainly acted like he had stage fright - imagine! Harry, shy! Who'd've thunk it?!?!?!

I will be going shopping today with some gift cards (thanks) for some baby clothes. I can't believe it, but Leah, Micah and even Golda have all outgrown their preemie clothes and Leah and Micah are starting to outgrow their newborn clothes! It's great that they are growing so nicely, but geez, it's going so fast!

Okay, that's it for now. I have some photos that I want to post, but I will have to do that later. We wish everyone a very happy turkey day! Gobble Gobble!

Day 67 Update

Good Morning Everyone! I am sitting at Mema's computer typing this morning update. All of our kids spent the night away from home last night, giving Daddy a much needed break. He got some good uninterrupted sleep and will now be able to get some real work done today.

I spent the night at Mema and Pepa's house with Leah and Micah. We set up the pack n play in Harry's room and I slept there with them. It wasn't too bad. I got a little more and better sleep than when I sleep in the living room at home with them and they only woke up Mema (Pepa slept through all their complaints). And they were pretty good too. Only a few ear splitting screams, not the all out freak out we usually get. Now, Mema is finishing up Leah's bottle and Micah is enjoying sitting with Pepa at the computer while I get a few minutes to type an update!

Harry spent the night at the Y last night - they had a Parents' Night Out where kids could come and swim, eat ice cream sundaes, play games and watch movies, then sleep over! In the morning they get breakfast and then get picked up by 10 am. He was very excited about the whole idea. When Jon picked him up this morning he said he had a great time and was quite exhausted! Jon said he felt a little guilty dropping him off at Sunday School because he was so tired he probably wouldn't be able to really participate in anything! I am so relieved that he had such fun during his first night sleeping away from family. Phew!

After we dropped off Harry at the Y, Jon and I went to visit Golda. She is doing well - weighing in at 2.03 kg (4 lbs. 4.76 oz.)!!! She is completely off breast milk now too (which means I have stopped pumping fully now for a week - ouch) and is eating Enfamil Premature 24 formula (the 24 means it has 24 calories per ounce versus 20 for breast milk or regular formula). I guess it's doing good for her since she is finally starting to put the weight on again for the first time since her move.

When we arrived she was crying, but she calmed down when she saw her Daddy. After she finished getting her food, we took her out for a little walk around the building. This time we took the portable suction machine (man, that thing is so noisy we couldn't sneak up on a deaf person with it!) and stayed away for about 45 minutes. We strolled back and forth on the floor, then headed downstairs so Daddy could get a soda. When we went back up we went into the family room and just hung out together. I took her out of her car seat and held her, sitting on my knee, while Daddy played some nursery rhymes on the toy one octave piano. Golda seemed to enjoy listening to it. Then I handed her off to Daddy and she snuggled in. We returned her to her bed and got her all set up and comfy before we headed out (that process took another 20 minutes of course!).

Here is a photo I took of her in her car seat - I couldn't get over how much she looked like Micah!

Speaking of Micah, we weighed him yesterday and that little monster is now 9 lbs. 10 oz.!!! Oy! Not that Leah is any lightweight mind you, she is now 8 lbs. 4 oz. Phew. Holding them for any length of time is starting to become a bit more taxing, lol.

Here is one each of Micah and Leah that I just took with my cell phone so you can compare.


Okay, I'm gonna go now and eat some breakfast! Have a good day and, in case I don't get a chance to post again before Thanksgiving, have a very Happy Turkey Day! Gobble Gobble!

Day 64 Update

Hi Everyone! Sorry for the long delay between postings. I started working again on Monday so that has been taking most of my "free" time. It's actually been kind of nice to be using my brain again for something other than wondering when the last time Leah pooped was! I have also been enjoying my visits with Golda. It's so much nicer to see her in the cheerful room instead of the NICU.


When I visited Golda yesterday, I took her "out" for a walk around the hospital. She was able to be off her suction for a half hour so we were relatively free. I put her in her car seat in the single car seat stroller (thanks to Scott and Sharon for the hand-me-down - I guess you were right Sharon - we did need a single, too!) and off we went. First we went to visit David, but he was in a meeting, so we went down the hall to visit the lovely ladies who helped us during the admissions process. They were happy to meet Golda and very appreciative of our small thank you of Sugar Bun cookies. We went for a little circuit between the two elevators and then back to Golda's room. The entire time she was all wide-eyed looking around at everything! It was a lot of fun to finally get to walk her around and expose her to new things.

Here is little Golda is her huge car seat. That's her ducky pacifier in front of her, she has her oxygen sensor on her wrist and her suction collection vial on her side, but doesn't she look so comfortable!??!

Leah and Micah have been doing okay. They are growing nicely in spite of their reflux. Unfortunately they aren't eating as quickly as they had been after we first switched their formula, but they are still doing better than before. The spitting up has picked up again, too. Oh well, at least we got a little repreive. They have a gastroenterologist appointment the first week of December so we will find out more then. They also have an appointment at the high risk clinic at LIJ North Shore that week. The clinic evaluates them for the various preemie issues like developmental delays, eye problems, etc. And Micah has a urologist appointment that week too. Sheesh! For such little people they have a lot of doctor visits!

Harry got his first report card. He is doing very well academically, now if he can just learn to keep his mouth shut and stop being so obnoxious, he will do great. Argh. We have our parent teacher conference today so we will discuss it with his teacher and get her perspective. Harry has been growing like crazy lately. I cannot believe how big he is getting! Most of his size 5 clothes are getting too snug and his size 6's are fitting nicely - just a month ago though they were large on him. His new sneakers are a size 2 1/2 and 3 and they fit nicely too. Argh again! I told him to cut it out - he's not allowed to grow anymore! He just laughed at me.

Okay, back to work now!

Day 59 Update

Good Morning! Things are finally settling down here a bit. Leah and Micah are doing much better now with their reflux. We have them on twice daily doses of Zantac and they are eating Enfamil AR (anti-reflux, it has rice starch in it to thicken it). The Zantac is starting to do its job - keeping down the acid. Although they still have some acid reflux with most feedings, the Enfamil AR is doing it's job and keeping the food down so there is much less spitting up. That means more content babies after each feeding and during each feeding there is less fighting with them to get them to keep eating. Last night we switched them to Level 2 nipples on their bottles and that really did the trick - feedings went from 45 minutes to an hour with each of them to 15 and 20 minutes with each of them!! And today, I propped their bottles so they could both eat at the same time, and so the one not being burped could keep eating, and they were both finished eating and burping in 25 minutes! I was sooo excited! We even had time to dance to some music together before they fell back asleep! Imagine, getting to enjoy the babies! What a concept. And all of this combined with their new four hour feeding schedules means that we can actually plan to do things now and get some things done in the house too.

This is a very good thing since I am scheduled to start working again from home on Monday. I can't believe how fast the time has gone! Thankfully, my boss and I agreed before I even went on leave that I wouldn't return to the lab until January. It would have been incredibly difficult to leave now. We are going to start looking for some help - ideally someone to come in from 7 am until Noon every day so we can both get some uninterrupted work done. Most ideal would be someone we know, so if there are any volunteers out there, wink wink, let us know, wink wink!

Harry has been having some more difficulty with the whole sharing of the attention business - especially since his share has decreased from all of it to one fourth of it. He has been acting up at school and is now paying the price for that kind of attention, but we spoke to him about it and are trying to find some more alone time with each of us for him. Yesterday, just Mommy and Harry went shopping and out to dinner together, then to visit Golda. He was very, very happy.

I realized that some people can't access Picasaweb from wherever they most frequently check their email so here are a couple of the photos I posted of the whole family, and a couple of new ones too.

Day 57 Update

Hi Everyone! I am completely exhausted so this will be brief.

Deena helped me bring Leah and Micah to the ophthalmologist today. Thankfully, he said everything looks fine with their eyes - no signs of retinopathy of prematurity - and since they are officially full-term now, they are free and clear. We have to come back when they are a year old since they are at risk for other eye conditions, but that's not too big a deal.

After the eye doctor, we went to see Dorothy and surprise her with her great grandchildren. She was very happy with the surprise and proud to show them off to everyone. She even held both of them for a while.


We then came back home, ate some lunch, did Harry's homework and headed out to see Golda - all of us! I cannot begin to tell you how great it felt to have all of my kids in one room for the first time! Jon and I were quite happy - and a little overwhelmed. Like when I was holding Golda and Jon was feeding Leah and Micah started crying. Hmm, now what??? Luckily Mema was there and took care of him, but it certainly made us think about how much harder (and noisier) it will be when we do have all of them home, alone. Not that it won't be great to have them here, but wow, it's gonna be hard! Harry got a little over zealous, both because he was excited by having all his babies together and because he was jealous by the attention they received. It is definitely something we are trying to work on, but it's not too easy to give him the attention he wants and take care of two and three other babies. Also, from all the excitement Golda got a little over-wrought as well and we calmed her down and left so she could get some rest. Poor thing - her bed was invaded by two other babies and she didn't know what to do!


Okay, I need to go collapse into bed now. I have posted some photos from today's family meeting. Enjoy! http://picasaweb.google.com/WindyNYC/FirstMeeting#

Day 56 Update

Hi Everyone! Wow, it's been an exhausting day! We are back at home now and getting ready for bed. Golda is all settled in at St. Mary's in her new crib. I cannot believe how tiny she looks in that big crib! But the whole setting is so much more cheerful and vibrant I know she will love it. Her heart rate was high when we got her there - a sure sign she was excited. Everyone at Schneider Children's Hospital was very helpful in getting Golda ready to go. Unbelievably the social worker there was actually taking all the credit for getting her into St. Mary's and making this happen! I didn't care who got the credit as long as she was there - and besides it was everyone's doing that made this happen. I have been speaking non-stop to two women in admitting at St. Mary's who have worked their butts off to get her in there, and they have been in conversations with the people in finance there; David has been asking about it frequently, keeping Golda at the top of everyone's to do list; the social workers from LIJ have been calling both St. Mary's and the insurance company; and I have been calling everyone at the insurance company I could as well as all the people at St. Mary's and LIJ to really impress upon everyone how important this was to us and facilitating the interactions between all parties. Completely exhausting, but absolutely worth it now that she is there.

Golda is in the orange room of the nursery and has a window crib. She is by far the tiniest in her room and, I think, the only one without a trach. She has a cheerful mobile on her crib and an aquarium toy to watch as well. We are going to bring her some toys and blankets tomorrow. She will be evaluated by physical therapy, occupational therapy and speech (feeding) therapy over the next few days and then they will set up a meeting for us with all of Golda's service providers to discuss their treatment plans. The main goal is to fatten her up and keep her on track to meet all of her developmental milestones.

Leah and Micah spent the day with Mema and Pepa, and Harrison when he got out of school, but in the future they can come visit their little sister as long as the unit isn't closed to kids (when there is an outbreak of a particularly nasty bug in the winter months). That, to me, is one of the best parts of Golda being at St. Mary's - our family can spend time together as a family.

Okay, I am completely wiped out. It's 9:20 pm and astoundingly, I am going to go pump, and then go to bed! Jon will handle the 10 pm and 2 am feedings (oh, yeah, we have put them on a four hour schedule today and so far so good). Tomorrow we have opthalmology appointments for Leah and Micah. Good night! Oh, and here are some photos of today's adventures: http://picasaweb.google.com/WindyNYC/GoldaSBigDay?authkey=0mBlwosCo3M#

Day 56 Brief Update

Hi Everyone! Just a really brief update: We are rushing around getting ready to head over to the hospital so we can sign Golda out for her transfer to St. Mary's!!!! She is finally all set and it's really happening! I will post more when I can, but I just wanted to share that as soon as I could.

Day 55 Update

Hi Everyone! Things have been finally happening! We found out that Golda has a bed at St. Mary's, but they were still waiting for an authorization code for the admission from the insurance company and they were still trying to get someone on the phone to negotiate their rate. The facility is in-network but they have to re-negotiate the rates due to factors beyond our knowledge and so we are stuck in the middle - St. Mary's doesn't want to take Golda until they know how much they will be paid and the insurance company doesn't want to negotiate. It's beyond frustrating to say the least! I can understand St. Mary's point of view - once they take her they might be stuck taking a lower rate that can set a precedent, but at the same time I really want my baby to move already and get out of that NICU. ARGH!!! LIJ was working on the assumption that everything would be settled today and set up a transfer for tomorrow, but they had to cancel it at the last minute because it was not in fact settled yet. Hopefully it will be tomorrow and she can then be transferred either tomorrow afternoon or Thursday morning.

I went to visit our little Golda yesterday and found her really alert again. Her weight was 1765 g (3 lbs. 14.25 oz.). Today we had the pediatrician for Leah and Micah. They received their Syngergis shots and got a general checkup. According to their scale, Leah is now 6 lbs. 9 oz. and 19 inches long. She is measuring -5th percentile! Micah is 8 lbs. 10 oz. and 20 inches long and is measuring -5th percentile for length, but 3rd percentile for weight! Leah got a clean bill of health as did Micah, although the doctor recommended a urology consult for him. He checked out the testicular hydrocoele and saw a darker area that isn't completely consistent with that diagnosis. He said he didn't think it was anything too serious, but a consult wouldn't be a bad idea. He also recommended a gastroenterology consult for their reflux. Additionally, we are going to give the Enfamil AR formula a try. We used the Carnation Good Start AR with Harry, but we can't seem to find it this time around. So, hopefully it will make a difference for these little ones. Oh, and the best part was that he said we could try to move them to a four hour eating schedule instead of a three hour one!!! Woo Hoo. Let's hope they adjust soon so we can maybe get some rest and get some stuff done during the days.

After the pediatrician we went to pick up the formula from Babies R Us, then the Mema from the train and headed out to see Golda for Sibling visiting day. Harry was very happy to finally get to see Golda again. We have a photo they took for us of Mema holding Golda and Harry. I will try to scan it soon. Golda was doing well today. She is now eating 36 ml of milk and weighs 1813 g (3 lbs. 15.96 oz), just shy of 4 lbs!!!

Okay, I just posted some random shots for your enjoyment. http://picasaweb.google.com/WindyNYC/RandomShots#

I will update again when I know what's happening with Golda's transfer!

Day 53 Update

Good Morning! Wow, I can't believe it's still morning and I am sitting here, especially this morning!

Last night we decided that Harry was really really bored and feeling like a second class citizen and needed some big boy time out so we took him to the Fun Zone on Route 110. He was very happy with the whole idea as you can imagine. First we stopped at the hospital to visit Golda. I went up while the rest of the crew waited in the minivan. Jon fed the babies while they waited - well mostly just Leah since Micah couldn't bring himself to eat a cold bottle and spit out immediately most of what he was offered!

My visit to Golda was really great. It was the first time that I have seen her so alert and content, although apparently Jon often sees her this way. She was pissed off when I first got there and disturbed her sleep by picking her up, but then she calmed down and just laid there looking at me and all around while I was having a conversation with one of the nurses. She was completely calm and content. It was really nice to see. Then when I put her back down she started crying so I unwrapped her to make sure no wires or tubes were pulling and she calmed right back down. The best part was seeing her laying there in her clothes, eyes fully open, looking around and waving her arms and legs like Leah does all the time! As I said, I haven't gotten to see this side of her since she usually just passes out in my arms and I was kind of confused when the doctors and administrators said they would be doing different therapies with her when she went to the intermediate care facilities. I couldn't' figure out how they would wake her up let alone get her to focus on anything since I never really saw her looking that cognizant before. Now that I have seen it, I am doubly glad that things are falling into place for her to go to St. Mary's since I realize how much she really does need to be out of there.

Anyway, on to her stats. Yesterday Golda weighed 1771 g (3 lbs. 14.47 oz.) and today she dropped a little to 1765 g (3 lbs. 14.25 oz.). She is still eating 35 ml of milk and otherwise doing very well. Her g-tube site looks so much better - there is only a little pinkness left.

Okay, so after the hospital we headed out to Fun Zone and had Nathan's first. Harry gobbled down his corn dogs and fries and wanted to head over to the rides before Jon and I had even finished our hot dogs! We finished up, changed babies and headed to the rides. The way the pricing scheme worked out, if Harry rode 8 rides it was cheaper to do the pay one price, so we decided to get that. At first he didn't realize that was what he had and was only picking his favorite rides and only once. Then I explained that his bracelet meant he could go on as many rides as he wanted. He looked at me and said "oh", then proceeded to ride the "roller coaster" three times in a row! By the time we finished up the night we were afraid he was going to fall asleep on a ride! He and Daddy played Bowlingo (a smaller version of bowling) then we got babies changed and headed home. Harry was asleep before we hit the highway! He was disappointed that he didn't get to play more games, but we explained that we would do this again when we thought he needed big brother time and that this was because he was such a good big brother for letting the babies always go first (for dinner and attention) that this was a thank you to him for it. He was okay with it then and started planning the next big brother night already!

Last night though with all the messed up feedings the babies were all out of sorts. Jon took the early shift so I could get some sleep, but the babies were very crabby. I got up for the 3 am feeding and took them out to the living room after their bottles. They didn't stop moaning and groaning so I kept them out there, trying to give Jon a chance to get some uninterrupted sleep (his eyes have become permanently bloodshot these days). Micah slept in the bassinet and Leah in my arms while we dozed on the couch. It's amazing how quickly three hours go by when it takes and hour and a half to feed them and you sleep through most of it! Jon and Harry woke up around 7:30 am and came out to find us in the living room. Jon took over the end of Leah's feeding and I went to crash for bit while Jon finished up and got Harry ready for Sunday School. Micah let me know when they had left and I went out to calm him. Jon returned soon after, made me some breakfast and then fed Micah. I fed Leah when I had finished eating and Jon left shortly after to go on a much needed shopping trip to Costco. Micah chose that time to completely fountain most of his bottle - straight out of the bassinet and over to get me sitting on the couch! While I tended to him, Leah spit up too. Such fun! After changing them, cleaning up and trying out different spots for them to rest I wound up swaddling them and putting them in their bed in our bedroom. Finally some quiet! I loaded the dishwasher with bottles, then sat down to pump and write this. Well, so much for getting to this in the morning - it's now one o'clock and Micah has eaten again! Jon is back and will feed Leah now. And I wonder why we get seem to get out of the house before noon!!!

Okay, enough complaining. I am off to take a much (much, much) needed shower, then attempt to make it out of the house. Oh, I almost forgot, I spoke to the surgeon on Friday and he said that he is going to order a "button" for Golda (it's a device that sits flush against her skin for feeding instead of the g-tube which sticks straight out) on Monday or Tuesday. I asked what the actual name of the "button" is and the medical fellow gave me material on two kinds, but didn't know which would be used - the mic-key or the bard (see www.mic-key.com if you want to see what it looks like). I will let you know which one it is when I find out! The button will make life much better for Golda since she will then be able to lay on her tummy and wear regular clothes and eventually, to learn to crawl. Okay, okay, now I am really off to the shower!

Day 51 Update

Hi Everyone! Some interesting happenings in the last 24 hours. I spoke to many people involved with Golda's placement yesterday and things were looking very bleak for her to be going to St. Mary's, from insurance coverage, to bed availability, to transport coverage and medicaid coverage, nothing seemed to be going in our favor. This morning though someone from the finance office at St. Mary's called and said that they finally got clearance from medicaid that they would cover what needed to be covered beyond the insurance benefits and ... there is a bed!!! I was overjoyed of course! A few minutes later though the head of business development (the woman who is in charge of all matters business with respect to Golda's transfer) called and explained what's happening to me. It seems that the hurdle of medicaid coverage has been surmounted, but they are still negotiating with our insurance company. I asked if this would put the bed in jeopardy and she said there isn't one available yet - it should be open next week. This works out well since that gives them time to finish negotiations quickly to get her in. Fingers crossed that all goes well and she will be moved to Bayside next week! I can't tell you how relieved we are feeling - like a weight has been partially lifted.

So, Jon went to visit Golda last night. She was wide awake and interacted with him. She weighs 1750 g (3 lbs 13.72 oz.). She got her Synergis shot today in preparation for the move next week. I called the pediatricians and they said that Leah and Micah can get theirs at their scheduled appointment on the 11th and still be on the same vaccination schedule with Golda so we will not have to make another visit for that.

Leah and Micah are still growing nicely, but their reflux is frustrating. They seem to be doing a little better in terms of more feedings without issues, but there are still some really bad feedings - complete with poor eating, grunting, groaning, squirming and topped off with baby milk fountains. And even when they eat well and don't spit up too much, they spend the next half hour to an hour crying off and on while burping up bits of milk. We feel badly for them since they seem to be so uncomfortable.

Harry is doing well. We have put in our request for the best time for our very first parent-teacher conference at his school. That will be in a couple of weeks. I asked Harry whether we would hear more good or bad and he said more bad! We told him that will probably not be the case, but if he thought so he should really work on that. We will see when we go. So weird to be on the other side of these conferences!

That's about it for now. More later!

Day 50 Update

Hi Everyone! Thanks to Grandma Deena, who is on Baby Duty now, I have a few free minutes and can actually sit down and do something! I have already cleaned out Harry's closet so he doesn't pull out clothes that are too small on him anymore and now I can turn my attention to the neglected blog :)

Let's see, since I last posted Golda has been increasing her weight nicely. Tuesday she weighed 1669 g (3 lbs. 10.87 oz.), Wednesday 1672 g (3 lbs. 10.97 oz.) and today she is 1698 g (3 lbs. 11.89 oz.)! She is still eating 35 ml of milk, which is a full feed for her and she is tolerating it nicely. Very encouraging is that while she is "eating" she really goes to town on her pacifier, sucking for all she is worth. It figures that she would be the one that could probably nurse successfully! Oh well.

She is now the same weight Leah was when she came home. And since she is doing so well, I guess that is why they are starting to push us to make a decision about when and where to move her. They have a bed available at Blythedale and can move her today or Monday. We have requested that she not be moved today and that we revisit this on Monday. The doctor agreed and so we are hoping for something to happen at St. Mary's so we don't have to move her to Blythedale.

Golda has received her Hepatitis B vaccine and will be getting her Synergis vaccine soon. We are trying to hold it off as long as possible so we can get all three of them to have it on the same day - that will make life easier throughout the winter and early Spring.

Leah and Micah are doing okay. They have been on their Zantac now for three days and while it does seem to be helping, they are still having feedings where they fountain whatever they have eaten all over the place. And there are still times an hour after feedings where they make nasty faces and then vomit up large amounts of milk. I have to call the doctor tomorrow to update him on how it seems to be working so we will see what he says.

We weighed them this morning and you won't believe it! Micah is now 8 pounds even and Leah is 6 lbs. 8 oz!!! They have both more than doubled their birth weights in seven weeks! The good thing is that Golda is on course to do the same if you correct for the two weeks she wasn't eating. Micah is looking so big these days! He has the baby fat creases on his arms and legs now, which is so nice to see. Leah is getting there - you can see where her creases will form, but she hasn't packed on enough weight for them to be real baby fat yet. It will be nice when she does since she still tends to get too cold when she isn't fully covered up, while Micah can hold his temperature a little longer. They are both starting to really pay attention to the world around them and are showing some interest in toys - trying on occasion to reach for them. Both have been able to hold up their heads and turn them while on their tummies for a few weeks now and Micah is starting to try to hold his head up when you hold him in a sitting position, but that noggin is so huge that he can only do it for a minute at most! Leah tries, but she isn't big enough yet to really get it.

Last night Pepa thought he would give Harry a treat and take him out for dinner. Harry picked Burger King and off they went. Well, it turns out that the Burger King near us has Kids Night every Wednesday. They have painting, coloring, balloons and a whole bunch of other stuff too. Poor Pepa. Harry has now declared that Wednesday nights will be dinner at Burger King with Pepa!!! You know what they say - No good deed goes unpunished!

Okay, that's it for now. I hope everyone is doing well - drop us an email when you have a chance - or even post a comment :) Oh, and Jon has promised to have the Birth Announcements ready for mailing by Sunday night, so hopefully, if his printer cooperates, you should have them in your mailboxes by Wednesday!

Day 47 Update

Good Morning. Sorry about the missed posting yesterday. We actually left the house so that means there was no time for anything else of course!

Saturday, I called the pediatrician and got one of the other docs in the practice. She wasn't comfortable calling in a prescription on Zantac for babies so young and little and wanted us to wait it out over the weekend and she would see if she could get us an emergency appointment with a pediatric gastroenterologist today. She also wanted us to try switching them to a soy formula to see if that made any difference. It made a difference alright - it's a lighter formula so it was easier for them to spit it up! I called again this morning to speak to the doctor we saw on Thursday and he agreed right away to call the prescription in to the pharmacy. I picked it up on my way back from visiting Golda and we have started it!

Golda is doing well. She got her last dose of antibiotic today and they took out her IV. I have been asking about when she will get her Synergis shot (the RSV vaccine) and her hepatitis B vaccine and they finally told me today that she can have them and they will discuss it tomorrow at rounds. She had a repeat CBC today and it showed that her white blood cell count is back down to normal. Phew. It also showed that her hematocrit (proportion of red blood cells) was borderline low. They are going to watch it before deciding to give her another blood transfusion. The interesting part here is that the intermediate facility cannot do blood transfusions so she may have to stay a little longer until they determine that she is hematologically stable as well! We will see what happens.


I have actually gotten to see Golda two days in a row. I went yesterday with Auntie and Auntie was so excited because she got to hold her!

Yesterday, Golda weighed 1622 g (3 lbs. 9.21 oz.) and today she weighed 1658 g (3 lbs. 10.48 oz.)! I went to see her again today because I had an appointment at the medicaid office at LIJ. Babies that are born weighing under 1 kilogram and / or are in the NICU for at least 30 days are automatically eligible for medicaid. I had to bring in paperwork so they could file the application for us. Then I visited with a supervisor for the social workers since I am not happy with our social worker. Aside from lying to me about the possibility of St. Mary's she hasn't been the friendliest or most helpful of people. This woman was much more helpful and is going to look into the treatment plan the doctors are going by now so we can have some idea of when Golda will actually be ready for a transfer. After that stop I went by the Child Health Plus desk to inquire about it and got some information. Next I went to the admitting office and gave them our new insurance cards, or rather cards, since six people do not fit on one card! They went over all our information with me and gave me a booklet on hospital services and policies complete with the state's patient bill of rights. That was what I have been wanting so we can figure out our recourse if they want to transfer Golda before we are ready. I topped off the day at LIJ with my visit with Golda. Her g-tube site is looking much better and she was sleeping calmy, very soundly once I was holding her.

Anyway, I am going to sign off for now since I am quite pooped after all my running around. Remember, tomorrow is election day - don't forget to vote!!! Obama '08!

Oh, and I posted some photos of Harry's school parade. You can see our little train engineer parading around. Enjoy! http://picasaweb.google.com/WindyNYC/PS232HalloweenParade2008#

Day 45 Update

Hi Everyone. I was too exhausted to post yesterday. Jon was trying to make his quota at work and had to be at the computer as much as possible so I was handling all the feedings solo. Jon took over last night at midnight, giving me much needed sleep, although he is still running on fumes... and caffeine.

I took Leah and Micah to the pediatrician on Thursday (with help from Linda, thanks Linda!) to discuss their possible reflux. I merely described their symptoms and he watched them lay there and spit up repeatedly while he examined them and he started explaining what reflux was and why they had it. Needless to say, I stopped him and said I knew all about from myself and from Harry. We agreed that we would try adding cereal to their bottles for three days and if that didn't work then he would call in a prescription for Zantac for them both. The good part is that they both have gained weight nicely so the reflux isn't affecting that thankfully - of course, that's because we are taking an hour and a half to feed the two of them. Micah weighed in at 7 lbs. 15 oz. and Leah at 5 lbs. 14 oz. We couldn't believe how much they had gained - two pounds for Leah in the 20 days since her last visit!

He also checked Micah's circumcision and said it looked fine, but his left testicle was swollen! Apparently Micah has a congenital testicular hydrocoele - in English, he has fluid filling the sac surrounding that testicle. It usually resolves without any intervention within the first year or two of life and doesn't cause any pain or problems, but is merely something to keep an eye on and make sure it doesn't change or worsen. Also, we need to keep an eye on the area just above and to the side of his penis to make sure it doesn't show swelling because that could indicate that this problem is a hernia and not a hydrocoele (although the doctor doesn't think that is the case).

In spite of the plan, I called the doctors' office this morning to ask them to abort the cereal trial and call in the Zantac now. Both babies had really bad nights complete with copious spitting up and writhing in pain. I am waiting for them to call back.

Golda is doing well. Her g-tube site is looking better and less red so they are continuing the antibiotics for a full 7 day course. After today she has one full day then one day with two doses. While it stinks that she needs to remain on them for so long, in a way it works to our advantage - there aren't any beds yet in St. Mary's and she can't be transferred while they are still resolving this issue so it buys us some much needed time.

Golda is now up to 35 ml of milk each feeding and is tolerating it well. The day before yesterday she lost a little weight and was down to 1588 g ( 3 lbs. 8.01 oz.) but she gained most back last night and weighed 1601 g (3 lbs. 8.47 oz.). I went to visit her last night and found her wide awake and looking all around. Her face is looking more full and cuter now too. I was sorry I didn't take my mom's camera from the car. Oh well, next time.

Harry had lots of fun trick or treating with Mema. He almost filled his pumpkin! The funny part is that he doesn't really like candy so it will sit there until we decide to throw it away (or eat it).

That's about it for now. Have a good weekend!