Friday kinda sucked too…

Friday was our big follow-up… would be still be at 11cm for daisy, or would things improve? 

The answer…… no answer. I guess things improved… daisy was measuring 8.3 which still means she’s in the danger zone, and sunshine was down to 2.3… which is pretty much danger zone as well. This time, Sunshines dopplers were not looking too good either… they were always a little high, meaning she is struggling to get nourishment from the placenta, but friday they were coming in really high…. “still within range” they said, but at like, the 95th percentile. What made it worse was the ultrasound tech did not seem that experienced, and when she went to confer with the doctor (the one on duty, not our regular doctor) we could overhear and I felt like the doctor bullied her and didn’t really listen to her answers. I didn’t leave feeling too confident, but at least I knew that we have the follow up on tuesday for an echo to test their hearts, plus a regular ultrasound and an appointment with the main doctor. 

As we sloooowely walked back up the hill to the valet parking (did I mention, it costs $30 minimum every time we have to go to one of these appointments because you cannot park in manhattan??— that’s worse than a co-pay, but I digress….) I was letting myself feel OK, and just reminding myself about tuesday. 

As the hubbo went to go pay for the parking, I leaned against a column and waited. When he got back, he asked if I saw the lady with the twins… I didn’t, but they he showed me. Around the bend was a woman sitting in a wheelchair with 2 tiny infants, one in each arm. One was wearing blue and the other in pink so they obviously were not identical. She was waiting for her car and I just looked at her, and I started to cry. It was kinda weird…. I just got so freaked out all of a sudden… The hubbo didn’t notice at first… he was saying how it was so cute, how nice it would be to have two tiny little babies…. for him, it seemed like a “aha” moment that, despite all our initial fears about having 2 more babies, as opposed to the one we expected, two would be awesome and fun and adorable. For me, it was the realization that- at the very least, I would likely never have that moment… when you leave the hospital with your beautiful newborn and feel so proud & special when everyone looks at you. In all likelyhood, our babies would be in the nicu and they likely won’t be released at the same time. And that is best case scenario. My mind just raced with “oh- they got two… they got what they expected and probably didnt have the headaches we are having… what if we don’t have two??

It just sucked. shutterstock_2399973

bad… to worse

yesterday, tuesday, we went for our follow-up ultrasound. because last thursday the levels were reaching close to 9 for daisy, they wanted to monitor closer. Our appointment was for 8 am, and we had an appointment with the main OB- the head of the dept. at 10 am.

We brought The Kid to my in-laws monday night so they could bring her to the babysitter in the AM, since we would be long gone by then, and we were “supposed” to get a good nights sleep at home with her gone…. but my in-laws didn’t come home till midnight (they were on vacation) so we didnt actually get to bed till 12:30.

Anyhoooooo, things aren’t good. Daisy’s levels have jumped up to ELEVEN. ELEVEN! Sunshines seem to be holding steady at 2.9 or so. This has now become a “complicated” case (of course) because it is very unusual for the levels of one baby to go so high without the other baby’s dropping below 2. Officially, I am still considered “borderline” and there is not much to do but keep monitoring. Compounding the issue, which I suppose is good news, is that all other functions for both babies seem to be “within range”… the dopplers, heartbeats, bladders- all appear, overall, normal. Without any secondary issues, I am not even past stage 1, so they don’t do anything. This scares me because I feel like, at least if they do SOMETHING, they will have more control over the potential for stopping neurological disorders. Since they don’t know now how the “off” fluid levels are affecting the babies, we’re just in a no-mans land of “lets hope not at all”… this sucks.

I was put on modified bed rest. They don’t want me going to work anymore (surprised my boss does, considering that I spend half the day lying on the floor) but I am going in today to tie up loose ends, make copies of all my computer work and bring it home so I can get done here what I need to do.

We are going back on friday for another ultrasound. If at that point, the bladders are no longer showing normally (stage 2) they will consider surgery for the following week. Tuesday I have Another ultrasound (I try not to think about the people who clam the frequent ultrasounds are to blame for current high frequencies of autism) and a fetal echo to look at their hearts. Again, if anything shows sign of distress, they will likely prep me for laser surgery. Dr. said it’s a 50% chance I will have the surgery. At 21 weeks, there are only 5 more weeks until I am no longer a candidate. The farther along you are, the higher your risk for complications. In a way, I almost hope they see enough that they decide they should do it, but then, of course, feeling like that is a completely “wrong” way to feel what you should be hoping that everything will be “ok”.

I know this is unfair to say, but I didn’t ask for this… I’m not one of those people that prayed every time I went to the OB that they would say “congratulations! It’s twins!” and I’d be so excited and skip home to tell my  hubby. When they told us it was twins, we were both like “oh, no, you must be mistaken…. that’s not us…. we’re not those people”…. but now that I am here, in love with these babies and forced to go through this, I can’t help but feel a little …. annoyed? not sure that’s the right word… I do feel blessed, and I now can’t wait for my 2 healthy, beautiful baby girls to get here… just in the back of my mind, the part that stores away all the bad thoughts, I’m a little bit pissed.

Will keep you updated to Fridays ultrasound.

Thanks for reading.

late update

not my belly

not my belly

So, sorry I took a while to follow up. Thursday kinda sucked. Our regular ultrasound lady, who is really nice and personable and makes me feel good when things like dopplers look good, was not there. And in her place was this major  attitude attached to a ultrasound technician.

I truly dont know why she was such a beyotch, Seriously, I waited almost 1.5 hours to be seen and she was just all attitude. Didn’t wanna get the doctor, made me feel like a nuisance even asking…

But more importantly, the fluid levels were off again… down to 2.5-3 for sunshine and up to 8-9 for daisy. (and she wanted to know why I wanted to talk o the doctor??? hello???)

But, both bladders looked good. dopplers looked good, growth rates looked good, heart rates looked good, and they remeasured. looks like a 11% size difference and both babies are moving a lot (sunshine, a lot considering how low her levels are….)

We have oour regular OB appointment tomorrow so they set us up to get this weeks ultrasound before we meet the OB.

Other than that, I have been feeling like crap. My belly is HUGE. I’m still working 4 days a week (day off is Dr. day) but it’s wearing me down. sitting at my desk is hell. Sitting here concentrating is even harder. Our family is going to have to learn to survive on a lot less because I will be outta work for a while. I still dont know what my boss plans to do. Last baby he continued to give me 1/2 my salary for 3 months and occasionally asked me to complete some work. I asked him today what he plans to do this time and he said “I don’t know”.    I’ve worked here long enough to know that he’s just gonna do what he feels like he’s in the mood to do. It’s not a great “policy”but hopefully it’ll work out.

I need a break. I’ve been lying on the floor of my office. That is so not cool.

Not pretty

Not pretty

waiting…

Its thursday. Hubby got a blackberry
Were waiting at the hospital for my ultrasound but our regular tech is out today. They told us to expect to wait over an hour. I’m nOt happy. The kid is GonnA be picked up from daycare by my sis. I hope she is in a good mood…

Another Week goes By….

Today was our follow up ultrasound, and things are looking good- even a little better than last week. Sunshine’s fluid levels are measuring between 3 and 4 and Daisy’s are somewhere around 8, maybe a little lower.

They also spent some extra time showing us the umbilical doppler, which shows the bloodflow direction into each baby. It’s not a great`thing when they see a reverse flow… and they didn’t see it.

I guess it’s gonna be fingers crossed every week for the next 10-15 weeks until these beautiful little girls get here!!

… also, I had another lightheaded episode while on the table getting the US. She had to stop and I sat up and drank half a bottle of water to stop myself from feeling like I had to faint. The doctor said it’s likely normal, based on the weight of 2 babies and perhaps if I have low blood pressure. She said to eat potato chips or high sodium foods to keep the blood flowing, and not puddling in my legs. I hope it’s that simple….

Now it’s time to go watch Project Runway!!! Make it work!

*Jul 30 - 00:05*

Incident at Port Authority

For the last few days, I have been feeling particularly good. I have been lighter on my feet and my back is hurting less. Despite the fact that every morning I step on the scale to a number 1 digit higher than it was the day before, I was still feeling good. Even folded laundry.
Anyhoooo- that was short lived. Today I felt like crap. I spent an extra long day at work feeling extra heavy and brain dead. Finally, 5:30, I told my boss I really had to go.
I walk 2 blocks to Port Authority from my office. Recently I have been doing it reeeeeaaaaalllllyy slooooowly. I thought I was walking slowely before my vacation but I realized while strolling on the boardwalk that I was practically running. So now, I envision myself walking on the boardwalk as I trudge down the congested manhattan streets to my office. I think it might also be good for my stress level, but I digress.

So today, I get to Port Authority and go up the escalator to my bus platform. As I hit the top of the platform I got a heat rush that made the whole room spin. This has happened before, when I was getting an ultrasound, and the hubby brought me a cup of water, they lowered the rooms AC and I was fine. But here I was, at Port Authority, with No water in my bag, no hubby to help me, and I was pretty sure I was going to pass out. I freaked out. Besides no water and no familiar faces and a spinning room, there was also only an escalator going up. I had no idea how to get down to where they had water. I went into crazy-woman mode. The next man that came off the escalator I practically fell onto. “Help” I said “I need water”…. his initial reaction was to ignore me, thinking I was asking for money… I said “I just need water- I’m pregnant- I’m gonna faint”… and I sat on the floor… a woman came off the escalator and asked me if I was OK… she even offered me her water, but i found an orange in my purse and started peeling it. Another man and woman stopped to see if I was OK, and the other guy came back with a huge bottle of water which I drank half of in one gulp…..
It was so embarrassing. As I started to stop shaking and sweating, I was really embarrassed, even though all the people were so nice and helpful… I really would have passed out. I offered to pay the guy for the water but he didn’t let me. It was really bad.
Eventually a woman I know from the bus stop came up and the bus arrived and I got on it, sitting next to the woman I kinda know.
That better not happen again. I know I should never leave the house without water, but I also can’t handle the weight of carrying too much stuff… I am going to start getting a ride in. No more bus.
Tomorrow is my follow up ultrasound. Fingers crossed, all will be good.
Thanks for reading.
xox

back at work

shutterstock_34028695…and getting here is getting really hard. My belly is getting really big and the commute is really, really wearing me down.

My boss has actually offered to pay for a cab twice a day to get me here… it’s $55 each way. for that money, I’m thinking the hubbo should just drive me. I’m gonna be on bedrest soon… and I am interviewing new artists tomorrow. Boss is really nervous about me not being here for, what, 6 months?? Thank god I trust that he wants me here enough. having to hire people to “replace” me, while not actually having them replace me is challenging.

Having ongoing nightmares (even while awake) about neurological damage to the girls. This is not a fun pregnancy.

….holding steady…

So, I’m back down at the vacation spot after the appointment yesterday. It was sooo nice to see The Kid again. they said she was such a pleasure- so well bahaved and happy. Of course, after she saw me and the hubbo, we got the initial big smiles and “mommy mommy” and then she started to get all clingy and whiny. Why do kids do that? They know they have to behave for  everyone but their mommas a pappas.

But anyway, The appointment was as good as we were hoping. Besides the fact that we had to wait 45 minutes to be seen, the ultrasound tech was  great and reassuring. She remembered us personally and this time we got to meet the main doctor, who is the director of the whole prenatal unit and she was so warm and personable and knowlegeable. Pretty much, all of our measurement are holding about steady. Sunshine (our donor) has fluid levels about 3cm. Its low, and she clearly looks a little enclosed near the wall, but 3 cm is still above stage 1. Daisy, our recepient, is measuring fuid levels between 7.9 (according to the dr.) and 8.3 (according to the tech… these numbers are not carved in stone…)… anything over 8 can be concerning, but it has to balance off with the lower number being below 2. Sunshines bladder was entirely visible which was reassuring, and although the dopplers were a bit abnormal, they were not off the charts and still kept us away from a formal diagnosis.

This dr. suggested that it could potentially stay this way throught he pregnancy, never developing into TTTS, and could just be “uneven placental distribution” that is providing more to one baby than the other, but essentially, each is getting enough, and not too much of what she needs.

With regards to Cerebral Palsy and other neurological disorders, she told us that a lot of it is an unknown. It seems, like the research my sister sent to m, that if one baby dies the others risk jumps significantly, and very early delivery increases risk, and if TTTS is severe, it increases it. Then again, just being pregnant with twins puts you at an increased risk. Identical twins is an even bigger risk, and  mono/di twins is more risk… so it’s just a numbers game.

As of now, we’re just focussing on the news that things are holding steady and crossing our fingers that they stay that way (or, even better, balance even more!!)

Follow-up appointment tomorrow…

This was supposed to be a vacation week. The hubbys parents have an annual tradition of renting a large house for a long weekend once a year for all their kids and grandkids when the one son who lives in another country is here on vacation. This year they rented it for a whole week instead, and that week was this week.
It was really nice to be away (it’s a 2.5 hour drive) and relax on the beach with all the other kids and grandkids. It helped that there were so many other people to help with the Kid, and lots of entertainment.
But then, I had to come back home. I knew I was going to be coming home because I have a dr appointment tomorrow, but I came home yesterday though, so I could go to work today. I’ve been stressed about the work I feel I’m going to miss, so I have been trying to put in extra time… which is probably a stupid idea…. but anyway…
So, I left the kid with the hubby and the rest of the family and hitched a ride back with my bro-in-law. Went to work today, and hubby drove home tonight so we could go to the dr. together tomorrow. We left the kid with my in-laws which is a nice little mini-break for us. We’ll be driving back to our vacation spot tomorrow night after the appointment to join the family for the rest of the weekend.

—-
About the appointment… I’ve been nervous. spent a lot of time thinking about the side effects- Cerebral Palsy and all other types of potential neuroligical disorders. I’ll be honest, the thought of raising a child that has to deal with that, and the thought of spending my life dealing with that is almost more than I am able to handle. The truth is, If I knew that possibility was likely, I would probably terminate. It’s horrible and scary and makes my cry my heart out in the shower, but it’s how I feel. The fact is though, there is no way to know if that is the case. I’ve done tons of reasearch of CP and TTTS and it seems- though this is simplifying it a lot, that the largest probability of CP / neuroligical disorders stem from either A- death of one of the babies that triggers a neurological effect in the other, or B- very premature birth with complications. It also seems that with severe TTTS, the “triggers” that would kick in upon the death of one, could still be activated in limited doses…
This syndrome is so unusual and only more recently able to be studied to a large extent, that so many of the studies are limited in their scopes, and their findings are often just theories, not necessarily fact. My sister is actually doing her fellowship in pediatric cardiology in one of the main childrens hospitals in the country that performs the laser surgery. She does rounds, spending time working in each unit of the hospital and ironically, this coming week, will be working with the area that deals with this. Today she even got the preliminary reports about a woman she is supposed to meet next week who is currently pregnant with TTTS twins. She had the surgery at 18 weeks for severe TTTS. It is now 5 weeks later and my sister said the reports are staggering with regards to the turnaround this woman has shown. While my sister and I have not always gotten along so famously, it is nice to have her be so capable of helping me deal with this and provide me with studies, reports and information I would otherwise not have access to. 

back to my main thoought—- The idea of terminating out of fear of a % number number is repulsive to me, and I don’t know if living with that unknown would be a worse fate. It’s just really a horrible situation. I keep having to remind myself that- as of now, this moment- Thank god, it’s not a decision that I even have to face. I am feeling confident about tomorrow (not a good sign- damn susperstitiousness) and will just take it day by day and week by week.

I have been feeling the babies moving a bit… more daisy- the recepient, than sunshine, my donor… if in fact, they are still in relatively the same spots they were at the last ultrasound… 

Just gonna try to get a good night sleep and not have nightmares like I did last night.

Heres is to tomorrows uneventful Dr. Appointment!! 

Will let you know…

Side effects

Now that I am feeling better about the “what-if’s” should the TTTS ever escalate and we have too act on it, I have found myself worrying about the side effects this disease can leave with it’s tiny victims. Besides developmental delays, blindness, kidney or renal failure, it can also leave them with major neurological damage or Cerebral Palsy. I don’t know much about these conditions, but I know they’re not good. The doctor, when explaining the situation to us, is required to inform us of any options we have and potential outcomes. When he got to the part about the option to terminate the pregnancy for fear of any of these conditions, it never occurred to me that that would be the path we choose. We love these babies and if they need us to fight for them, we will.
I just hope and pray this does not progress in the wrong direction… these are decisions I never in my life want to have to make. I have a lot of questions for the doctor regarding when these conditions would show up and how they would present themselves while I am still pregnant (if at all) and if earlier laser surgery or response can lower these odds. he did tell us that addressing the TTTS with laser vs. amnio significantly lowers the risk of neurological disorders, and besides for everything else, that was a major reason for our decision that, should we need it, laser is probably the right decision for us.

We have a niece who has some disabilities and while she all love her and this she is an amazing, loving beautiful child, I don’t know if I have what it takes to raise a child with major problems.