Back again

After a blissful 36 hours of being home, we decided it was a little too boring and that we missed the excitement of the hospital (not). The real story is that we came in for our non stress test yesterday morning (I still can't get over the irony of the name) and found that baby B's heart rate was dropping at times throughout the test. Fortunately he always recovered but it was enough for them to re-admit us and keep a closer eye on things.

We went through all the scary things all over again, signed consents for emergency c-section if baby B didn't turn things around, talked to the docs and nurses about prognosis, watched the monitors vigilantly all night as if we could "will" him to to keep his heart rate up. Somehow being back again makes things that much more real, with the realization that things are more and more likely to happen much sooner than any of us would like. I'd be lying if I said my faith wasn't being tested right now. Like any parent, I want so much more for my boys, and at the top of that list is not to have them have to fight so hard already or have so many challenges coming into this world. They deserve so much more, what could possibly be the purpose of having them struggle so much and so soon? I know these are questions I am not supposed to be able to answer and thankfully these moments are fleeting.

But today is a new day and I am more conscious of all our blessings. I know that its not up to us to always understand the road that we are on, we just have to trust that we are taking this journey for a reason. And I am repeatedly reminded that we are not walking this road alone. We have been given so many gifts during this time. One incredible one is the fact that I have a dear friend who has also been admitted to the same unit on bed rest, trying to keep her little one in a few weeks longer too. What are the chances of that? She has been a huge support and obviously we know exactly what the other is going through, feelings, and fears and even though we hate that the other has to be going through this, we are so appreciative that we can call on eachother in a time like this. One of these days, we'll be boring our sons with the stories of "back when".

As always, we are so grateful to all of our family and friends for their constant love and support. The calls, visits to help pass the time or just offer a hug and hold our hand are all priceless. We've even had old friends that we've lost touch with over the years come back into our life, as well as new friends in the shape of labor and delivery nurses who have spent so much extra time giving us much needed reassurance, and even visits from the NICU (neo-natal intensive care unit) doctors sharing positive stories and experiences and giving us hope. We keep all of these close to our hearts and will continue this road the only way it is possible; one minute, one hour, one day at a time.

HOME!!!!!

We are HOME!!!! I was released just after 6pm lastnight. The boys dopplers are still very concerning, but at least they have not gotten worse. The only intervention they can do is to deliver them and everyone agrees unless something else changes, they are still better off hanging out with mom for right now. I can't say the doctors are ever really incredibly positive, even though things haven't gotten worse, its far from ideal but I think even they have been surprised about how well the boys have performed on their non-stress tests, bio physical profiles. On one of the tests, its a score out of a possible 10 and they both scored an A+ meaning right now, as far as anyone can tell, they are handling the challenges well. Obviously the concern is are they going to end up working too hard and go into distress so they will continue to watch them closely.

The doctors said they would LOVE if things remain stable enough to make it to 32 weeks before we have to deliver them but said 29 weeks is our next goal and benchmark (that's just really two weeks away) and my little guys are such fighters already, I think we can definitely make it!!!!

I definitely believe all the prayers and good thoughts being sent our way are truly working!!! My blood pressures have decreased, going from 150's/90's all week to yesterday all day more like 120's/130's over mid 70's without medication!!! I've been taught how to check my blood sugars four times a day and seeing how things go with that as well but even that looks to be going very well and the doctors hope to "liberalize" my diet restrictions if things continue to improve. They obviously don't want me to lose weight at this time and I really need to convince them that the breads, pastas and cakes that they took away are really the best kind of medicine for times like these :)

With everything above, the doctors did feel comfortable to release me to home on "modified" bed rest. Basically means I should be sitting most of the time, but I am allowed to do the stairs a couple times of day, and even walk very short distances. I have to go back Saturday morning and then about every other day next week for follow up tests for the boys but to be home is priceless!!!!!!!

It is ironic that the hospital is the place you go when you are ill and need care but its hardly a place where anyone can rest. I am more exhausted from being there and being poked and prodded every two hours around the clock, that coming home and having an uninterrupted block of time to actually rest is heaven sent. I don't know how others manage hospital bed rest for weeks, even months on end.

Thank you for all the love and support being sent our way and for our boys, we feel incredibly blessed to have such a huge and growing support system surrounding all of us. And ofcourse I couldn't imagine having to walk this road with anyone else other than my husband who has been my rock and already such an amazing Daddy!!!!

Here we are at 26 weeks,
were all growing fast now!!!

The Hospital

Where to begin? We went for our routine doppler/ultrasound appointment yesterday morning and it turned out to be anything from routine. The good news first: the boys are still growing!!!! Baby A logged in at 1 pound, 3 oz and his brother a whopping 1 pound, 5 oz. We were just relieved to hear that they are still getting bigger in there, even if slowly. They look amazing on the ultrasound, still so active and busy (still have to get hubby to find some time to upload some pics of them to share our pride and joy).

Unfortunately, the dopplers looked worse for Baby B this time. Not only is it showing some absent flow, but also reversal of flow at times which I can't say I'm anywhere near an expert at any of this but its clear this is not good. The doctor is worried about the potential that this will cause undue stress on Baby B. Also routine blood pressure reveals my pressure is also raising (no idea why ofcourse) but all of this has them erring on the side of caution and sent me to the hospital for extra monitoring.

The boys are getting regular fetal monitoring as well as non-stress tests and so far are passing with flying colors. Their heart rates remain strong, they are active and not showing any distress at this point in their current environment. As tiny as they are, they are soooo strong and making mommy and daddy so proud.

I am currently on bed rest here, and only allowed "bathroom privileges"---its as exciting as it sounds folks, ha,ha. and as long as we were here, they went ahead and did their routine tests on me and found out I have gestational diabetes as well. Which means bed all day, bad TV and nooo junk food to chase it all down but still all manageable and likely very temporary. They continue to watch my blood pressures which remain moderately high and are checking blood work daily for any other signs of pre-eclampsia. I would ask what else could happen but I really don't want to know.

Right now we are focusing on all the positives, boys are still growing, looking strong. I have had both of my steroid shots now to help develop their lungs just in case things make a turn for the worse and they find that they have to deliver them very soon. I take comfort in the ever amazing circle of friends and family that continue to surround and support us; including the new friends we've made already at the hospital who we are finding incredibly attentive and reassuring, and I am as at peace as I can be that I am in the right place, in every context.

I used to worry when I learned we were having twins, how big would I get exactly? Now all I can think of is I hope I get REALLY HUGE. Keep baking boys~!!

Week 25

We survived another appointment! Today was our weekly doppler test for the boys, and what we thought would be another growth scan. It was explained that it has not been a full 14 days since our last growth scan (it had only been 12 days and several hours) and apparently anything before exactly 14 days later can throw things way off kilter...Ok well maybe in retrospect it was better that we get a week where we don't learn and obsess about their size.

The doctor said that this week the doppler was "high". We thought this was a positive thing but later in the conversation found out that this is not so. Apparently things still aren't great with blood flow to the placenta, but the doctor said it looks stable at least so we are just hoping that this trend continues. Basically we've kind of given up thinking we might hear anything good at these appointments, just hope to hear no new bad things....

The thing he said that really shook me up the most was that reaching that 500 gram weight was a critcal period where the options for delivering them were realistically out on the table. Again we were a little out of sync, thinking that he must be referring maybe to when they would be about two pounds in weight and since we know the boys are not near that, didn't feel like it was anything we had to even worry about yet........ Except I later put the conversion into the computer and was shocked to learn that 500 grams is actually just barely over one pound. ONE POUND......which is a pretty good estimate of where we think the boys are about now, even though it won't be documented until next Monday's growth scan. The thought that they might need to even consider delivering them soon, at such a tiny size is overwhelming. Obviously there is nothing decided yet, I know he is just trying to prepare us for all kinds of possibilities and keeping them in the womb when it is not optimal for them is not great, but ofcourse taking them out extremely premature is terrifying as well.

So we continue to live from week to week at this point and I have a feeling it will remain like that for some time. The doctor suggested we will likely start coming in twice weekly for dopplers and ultrasounds now to keep a closer eye on things and that decisions could be made fairly quickly if it appears the dopplers are getting worse or the boys keep falling off the growth curve.

Obviously no one has a crystal ball so its really hard to predict when things might happen. I'm hoping we can still hold out awhile. A long while would be good...You know until the basement is finished being renovated, the nursey is complete, more money saved, and the house is organized and immaculate...probably looking at 6 more months, a year maybe tops--thats not too much to ask, right?

Keep cooking boys. Here we are at 25 weeks:

another doppler

We had another doppler and ultrasound this week and one of the high risk doctors came in to finish the testing and talk with us. (We rotate through the practice and see a different doctor each time). This doctor was actually not "doom and gloom" which is good because truthfully, I started to wonder if that was a personality trait all doctors in this field had to possess. She stated that the doppler on Baby A looked good actually, nothing out of the ordinary that she could see (we like boring and not out of the ordinary these days--lets pray for more of those). Baby B does have some intermittent restricted flow to the placenta which basically means alot of the time it looks like he is getting blood flow but there are other times where he is not. I'm not quite sure the percentage of this. Some questions I honestly don't think to ask in those moments and others I know I am just afraid to.

The good news is that both babies hearts, kidneys, bladders and amniotic fluid are all still looking good. And they are sooooo active, it took them at least an hour just to do the scans because they wouldn't sit still :). She said those were all good signs and there are no visible suggestions that they are in any kind of distress.

She's careful to say we are no where near out of the woods by any means (just in case we are idiots, but in her defense, she doesn't know us yet). However she did say that if all of the above stayed stable AND they keep showing growth, we could hopefully get some more mileage out of this pregnancy.

It came up again about possibly doing an amnio to see if there are possible genetic issues on top of everything else that might be contributing to their issues. It would only give information, not a way to improve anything for them and potentially one more thing to worry over and stress about. its also a risk that it would put me into preterm labor so for many reasons, we are not interested in doing this. I don't think my spirit could take learning one more challenge they may face, at least not right now. I know that I will handle whatever God gives us at the end of this road but I'd rather learn about that when they are here and in my arms. I know I have to stay positive and strong for their sake, they are counting on me!

We will continue weekly dopplers and ultrasounds to closely monitor all of the above and every other week growth scans and if anything started to deteriorate we need to talk seriously of delivering them to give them the best chance, even though we know severe prematurity lends itself more complications. She said they are considered "viable" right now even though it would be far from ideal and that having them "cook" every day, every week longer gives them a better shot. She said to keep in mind that it is not just size of the babies but their gestational age that helps predict their outcome so we will keep praying for every day, every week that we can get.

More ultrasounds

It wasn't that long ago that we looked forward to all the frequent ultrasounds, we felt lucky that we could see our little guys so often but unfortunately that is getting weighed down now with mounting concerns.

Just two weeks after learning and beginning to adjust to the fact that we would have a child with some special needs, we learned that the doctors are becoming increasingly concerned about the boys size. The one thing that we had feared from the beginning (twin to twin transfusion) has NOT happened but instead there is a concern that neither boy is growing at the rate that they would expect and hope for.

At first, Mark and I were able to minimize their concerns, afterall the doctors seemed to be extra negative about everything thats "not perfect" when to us, no matter what the challenges, our sons are already perfect in our eyes. We just thought there's two of them in there, and hey, we are not giants by any means either so its okay if they are a little on the small size.

Now several ultrasounds later it has been confirmed that the placenta is not functioning properly and this is causing growth issues with the boys. They are now a full two and a half weeks behind their gestational age and the fear is that this might be a trend. I think the medical term is IUGR (intrauterine growth restriction).

We've transferred to the high risk pregnancy center last week and my hope was to hear some option, something that could be done to help improve the situation. Certainly they must have seen this before and with medical science being what it is, there would be something to try. Even with twin to twin transfusion, which we had learned about and feared from the beginning of our pregnancy, there are several procedures that can be done to immprove outcomes so......I was devastated to hear that there is really nothing that can be done to improve problems with the placenta, no magic medicine to improve blood flow, no procedure, no infusion of nutrients of some kind.

I can't tell you how tired we are of hearing there's nothing to do but "wait and see". They say there is no way of knowing if the placenta will improve on its own or deteriorate further. Shockingly the doctor stated if we were further along in the pregnancy, he would recommend delivering them now to give them a more optimal environment to grow---but ofcourse they are just barely a pound each right now so thats not a viable option. More and more I find I am dreading the once anticipated weekly ultrasounds because I am so afraid of what they will find or see next with my sweet baby boys.

Its amazing to me that just a few short weeks ago all I was worried about was if I had what it took to be a good mom to a child who would have extra health issues, extra challenges and all the ways our life might change. Now that seems so benign. I feel like I can do ANYTHING if just given the chance to be the mother of these children. The thought of not having them in our lives at the end of this road is unbearable.

I am trying so hard to stay positive, it doesn't sound like it here I know but I truly am, some moments are just harder than others. I sing to them, and talk to them often, tell them how much we love them and ask them to do their best to grow big and strong. I ofcourse pray and ask everyone that we talk to (or write to) to please pray for our boys too. I even force myself to eat just a little more each meal, extra snacks, because even though the experts say it won't have a direct impact, I think to myself, what if it helps just a little bit, I mean they can't know everything, right?

I relish every single time I feel movement and think it is their way of telling me "we are ok mom, don't worry." I know all I can do right now is let God work His miracle and just keep praying for the courage and strength to see my boys through whatever comes.

Welcome to Holland

This gave me hope and inspiration after just learning our son would be born with spina bifida:


Welcome to Holland
By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

The Big ultrasound (Spina Bifida Diagnosis)

Looking back at Week 18:

So we have felt "lucky" to have had multiple ultrasounds to see our little guys. The reason for the more frequent ones is due to the fact that they are sharing a placenta so they are at higher risk of not sharing so well, so they keep a closer eye for what is considered the higher risk time. Mark and I haven't complained, it has been giving us lots of chances to watch them develop and grow.

Week 18 was a well anticipated one, we were so anxious to find out the gender of our babies and to start planning things in our minds, and our home. We had had a couple scares before this, some bleeding that started at about 11 weeks but luckily stopped as suddenly as it started and some thyroid management issues of my own but other than that, the pregnancy has been pretty uneventful.

So the "big" ultrasound proved to be a "big" understatement. We had no idea how much that day would change our lives and literally pull the ground out from under us for a bit. We learned that one of our babies definitely looked like a boy (and assumed the other one obviously was as well) but they were spending way more time on the ultrasound than usual. You know when you start thinking "is everything ok?" and you get that "oh no" in your gut before you really know something is wrong, you just feel it? and then you try to say you're just being paranoid....but unfortunately we weren't. They discovered that day our "baby B" had Spina Bifida.

The doctor came in the room and went on to explain that this meant an area on the baby's spine did not form fully, which should happen very early, by the 28th day of pregnancy. For our baby, he says the spine was open at the top of the lumbar vertebrae, at L1, and most likely meant that he will be paralyzed from at least the waist down and would require surgery as soon as he was born. He went on to give us a lot of "possible" scenarios, all of them extremely negative and leading us to believe our child would have a poor quality of life and at the same time telling us the damage to his spine was already done, and there was nothing that could be done to improve his outcome. (they are doing experimental surgery in the womb currently for cases like this in several cities but we are not candidates since we are having twins.)

I STILL struggle talking about the "options" we were given over and over during this and subsequent appointments. We were told repeatedly that our son (now named Alex) would have a very poor quality of life but that we could always "try again." I only mention this because I've since learned how common this experience is. I had my faith to cling to and a husband who whole heartily felt the same way as me, but without these, I could see how someone could have chosen a different path, given all the "experts" predictions. My heart absolutely breaks just thinking of this. 


Needless to say we left that appointment in a state of shock, and overwhelming grief took hold of us for awhile. We needed the time to mourn for our sons losses, the challenges that would lay before him and wondered if we would find the strength to become the special parents that this child deserved. Selfishly, I hate to admit we even questioned how this would alter our own future plans and as awful as that feels to acknowledge, I've since learned this is all very normal.

During this time, I devoted every spare minute to researching more about Spina Bifida, and found several incredibly supportive sites of people who had already taken this journey, or like me were just beginning. There I was blessed with both a wealth of information AND support and I credit these sites and people (in addition to our amazing friends and family) to helping me get through a very difficult time. Sites like babycenter.com--(search for spina bifida kids), and spinabifidaconnection.com, and numerous links from there to personal blogs which ultimately has inspired me to write my own.

I have to also say during this time, I have done a lot of soul searching and praying and do have a strong faith. I believe that everything happens for a reason, even if we can't possibly understand it at the time. And this is certainly not any type of lesson I wanted Mark and I or my son to have to learn but that is out of our hands. I do believe that in the midst of our suffering, God has put special people in our lives. I have "met" and learned a great deal from reading others personal stories/blogs. I could turn to them any time day or night when I was struggling and it helped me to feel less alone.

It is in part why I felt compelled to write our own journey. Maybe it will be a sort of a lifeline for someone, the way others were for me. Its also helpful just to have an outlet, a "purpose" of some sort while we anxiously await for our boys to arrive. And lastly, I was unable to find many stories that included twins and I worry about how I will manage the needs of two babies at the same time, with one likely needing hospitalizations, numerous appointments, etc. I hope that as I stumble down this road, just maybe I will learn some things that I can pass on to others who are behind me.


A glimpse three years later: What I've learned now: The "experts" are only the "experts" at DIAGNOSING Spina Bifida. They are most assuredly NOT the experts at loving or raising a child with SB or even TREATING someone who already has SB. 


What they know is only from a textbook and too often an outdated one. No, raising a child with SB or any other disability is not a walk in the park. There are some extra worries, extra medical appointments, and many times some procedures, and equipment along the way. But the picture that was painted for us is soooooo drastically different than our reality and while there are no guarantees for any of us, From dozens of families I've talked to on line, our experience with SB is pretty typical.


Please feel free to message me if you've just learned of this diagnosis and want to know more from a Momma who is living day to day with this!!!!! I promise you while none of us would wish a diagnosis for our children, it is NOT the nightmare that is painted!


Just to illustrate that: here is a picture of my boys. You wouldn't know which one happens to have SB. They are both extremely happy and loving and absolute blessings in our life. Yes one of them happens to use "wheels" as he affectionately calls them to move around fast but otherwise they are so much more alike than they are different.