Tuesday, June 23, 2009

To Be Saved For Later...

Dear Dashell,
Sometime far in the future you may (or may not) be interested in the details of this post. My pregnancy with you was unusual, to say the least, and someday, maybe when you are getting ready to have children of your own, these details might be something that you would like to know.

Since I started this blog when you were already eight months old the specifics of my pregnancy with you are only in my memory, and let's just say that t
ime has a wonderful way of smoothing the ripples on the pond of life. So in order make sure that it is documented in some way, I am going to write it all down now and then let it dissolve away and be pleasantly replaced by all the new memories that we are making together.

A Bumpy Beginning...
Some couples are lucky enough to create new life with just the two of them. Quietly (maybe; it's a choice of course), privately. But in our case, we needed a whole team of people and a lovely little petrie dish. (You see, by reproductive standards, I was quite ancient when we conceived you at 40 3/4 years old.) You, my lovely little boy, happened on our second try (with medical intervention). Our first IVF cycle was a total bust because I got a terrible infection from the egg retrieval and during my two week wait (the time from when the embryos were transferred back into me until the time when the clinic does a pregnancy test) I had a very, very high fever and my body basically baked those embryos to a crisp. Since I ended up with you, I couldn't be happier. But at the time, I was devastated. I had pinned all my hopes on this one IVF. We had three lovely little embryos (one 8 cell, one 6 cell, and one 4 cell) every one of them had a little fragmentation (not a great thing) but all in all they were not too shabby looking. So, your dad and I were feeling pretty positive, but as I mentioned: no dice.

Fast forward to our second IVF. I was put on different protocol, Micro-Flare Lupron. This was good because it happened over a shorter period of time, which meant your old mom had to jab herself with far fewer needles (say 50-60 instead of 100 or more). But our outcome was a little different... when you do a 3 day transfer for IVF the ideal embryo has at least 8 cells and no fragmentation. For this round we ended up with one 6 cell (we think this might have been you) and two 4 cells, all with lots of fragmentation.

I want to pause here and say one thing before I continue... Dashell, I love you so much and you are the child I always wanted. I never, ever, ever could have asked for (or wanted) a more perfect, beautiful child.

Obviously, I'm about to say something bad, so let's just dive in shall we?

Well, the way they tell you how many and what quality embryos you have is like this: you are lying there, on a table, with your pants off, hopped up on a ridiculous amount of hormones (if you have a wife or a girlfriend, think about her crazy emotional level of PMS and times it by at least 100,000) so you are super emotional and you are thinking "Oh, I wonder how many wonderful little 8 celled embryos I have this time?" And the doctor comes in and shows you a picture of three embryos that look like they are so covered in sand that you cannot even tell how many cells they each have (and you know that this is not all what they should look like). Then she explains that although she knows that you wished for 8 cells you have one 6 cell and two 4 cells and they are far poorer quality than the last round, but at least you have something to transfer and she has seen miracles happen. Miracles?!! Suddenly I'm hoping for a miracle?!

I have to say I kind of melted down. I'm not proud of it. But it's the truth. I asked if we could just freeze these embryos (yes, I asked if I could just throw you on ice!) and move on to another cycle (since I was so very, very old, and feeling desperate, and running out of time). But the doctor and your dad talked me off the ledge and we ended up transferring you (and the other two) into me where, much to the surprise of everyone, you thrived. You have always been a little fighter. A pure bundle of energy right from the beginning.

In fact my hormone levels were so high (much higher than even the levels of my acupuncturist who was carrying twins at the time) that for quite a while everyone thought that there were at least two of you. Much to your daddy's relief, we eventually discovered that it was just you in there. But, given my hormone levels, we realized that you were already quite the little overachiever! (Your dad and I like to think that you are so strong because you were conceived on the anniversary of our first kiss. You are a true love child.)

This is one of the first pictures I have of you...

You were 9 weeks old. We were in heaven for about 3 more weeks.

The CVS Test...
Because of my advanced age at the time of your conception, we opted to have a CVS test at 11 weeks to find out if you had any generic abnormalities. When you get a CVS test, they take a small piece of the placenta and test it for the same generic abnormalities that they test for with an Amnio. The results usually take a few weeks to come in, so you can ask for early results (these come back in about a week). So of course, I asked for the early results because we had been keeping our pregnancy a secret and wanted to share our joy (and your sex) with the soon to be grandparents over the upcoming Thanksgiving holiday.

Here is a picture of you taken right before the test was done...

See those little round knobs? Those are your arms and legs!

Well a week later the results came in and they went something like this...

"Is this Gwynn?"


"Can you talk now?"


"Well, we just got in the results from your CVS and they are not looking too good. In fact we have never seen anything like this before. There are two extra genetic markers in every cell. Many times we see one extra marker in every cell. Sometimes we see two here and there. But with you there are two in every cell. We can't seem to figure out which gene they are from, but we have a team of specialists working on it."

(Pulling to side of road) "So what does this mean??"

"Well usually this is not a good sign. Chances are that this is not compatible with life."

Not compatible with life.


"Yes, I'm afraid so. You might want to start thinking about..."

I cried.

And cried.

I went into a depression. I stopped taking my vitamins (so if you ever feel that you are a few IQ points shy of where you should be, you can blame me.)

And then on Thanksgiving Day I got another call...

"We let the cell culture grow. Mosaic. And the two extra genetic markers are no longer there."


"We sometimes see this. We might have just gotten a bad piece of the placenta. There is a very good chance that your baby is ok."


"But we would like you to see one of our doctors who is a specialist in pre-natal abnormalities and to have an amnio."

"Sure. OK."

Hooooly crap! was all I could think. This might work out. But I have to say I was extremely nervous for the next several weeks. I wasn't sure that I should let myself believe that this could be ok.

The Amnio...
At 17 weeks we had an Amnio and it was relatively uneventful (other then the fact that my future happiness was tied to the results!)

And what a relief it was when everything came back ok. (They told me that I was not allowed to get the early results for this test, after what happened with the CVS!)

It actually took a couple weeks for it to sink in that you were ok and everything was fine. I finally let myself relax (a little). Over Christmas we started letting people know that we were pregnant. It felt so good to say those words.

I was still holding my breath, waiting for our 20 week scan. This was the big one. And we were looking forward to having it with our pre-natal skeletal specialist and hearing her give you a clean bill of health as well.

Well, unfortunately she couldn't make it that day. So we saw someone else much more junior. But he pronounced you perfect. And gave us this picture of you...

A couple weeks later (when you were just 25 weeks old) I finally felt confident enough, that everything was going to be ok, that your father and I went out to the store a brought some clothes and nursery items for you. It was a blast. It felt freeing and wonderful. We embraced you and the wonderful baby you were going to be.

26 Weeks...
But this lovely, happy period was not to last. The very next week, while working late at the office, I discovered I was bleeding. A lot. I freaked out. I called your dad. He called the doctor. The doctor called me (while I was speeding down the freeway.) She told me that I was probably having contractions and I should go to the hospital.

Well she was right. I was having contractions. Not really what you want at 26 weeks. Although if I had gone into full-blown labor at that point, you might have survived, but there would have also been a very good chance that you might have had many health problems for the rest of your life. So I happily let the nursing staff pump me full of terbutaline (to keep the contractions under control) while the doctors tried to figure out why this was happening in the first place.

Eventually I had an ultrasound and they concluded that I had a lot of extra amniotic fluid. You, my dear, had an extra-large swimming pool (and I didn't even know it), but they didn't know why.

Here is a picture they took of you...

When I asked the nurse, "Doesn't it look like he has a funny little overbite?" Little did I know, this picture would lead us down a crazy, crazy path.

But first a detour...

While in the hospital, I caught the Australian Flu. An awful variety of the flu that was going around that year, where basically you cough and cough until you just want to die. I was coughing so violently and for such long periods that the doctor put me on a cough supressant with codine (to knock me out) because she was afraid that I would cough so hard that my water would break. So after being in the hospital for a week, I was in bed for two weeks with this nutty flu. Coughing so hard my ears and eyes hurt. Finally, just when I thought I was going to pass out from the exhaustion of coughing, it passed.

But by that time we had missed the all important 28 week scan and couldn't get in until 30 weeks to see what our specialist had to say about the cause of the extra fluid. (In the meantime, my OB told me that sometimes women have extra fluid and no one can find a reason for it, so don't worry.)

While we waited (and for the rest of pregnancy) I had to hook myself up to machines twice a day and monitor my contractions. Sometimes if I was having too many. I had to drink a bunch of water and then rest for an hour and monitor again. This could go on for several hours. So some nights, I got very little sleep because instead of sleeping I was testing and testing and testing.

The 30 Weeks Scan...
We finally made it in to see our specialist and as she deftly swirled her magic ultrasound wand over my belly she explained, to her doctor-in-training, that there was always a reason for extra fluid. (An opinion very much at odds with my OB's!) Sometimes it's the stomach (not processing the amniotic fluid correctly), sometimes it's the brain (not telling the baby to continue to swallow the fluid), sometimes it's the mouth (not able to swallow the fluid) and sometimes... oh, what is that???!

Yes, Dashell, this is the photo that launched a thousand discussions and a million consultations.

This is your right femur. That lovely S-curve that you see is not supposed to be there. And on this ultrasound (and on every, single ultrasound there after) it measured short. Shorter than your left femur.

The doctor began to panic. I could feel her panic. It was palatable. Not really what you expect from a high level specialist.

She was suddenly measuring this and measuring that. The wand was everywhere. She was pretty much freaking out. (I think because this should have been caught at the 20 week scan.) And I have to say it was beginning to make me a little scared.

Finally she took a bunch of pictures and left the room. For a veeeeeeery long time. When she came back, she announced that after consulting with many other specialists that they thought that you probably have Femoral Focal Hypoplasia with Unusual Facies Syndrome. But that a short jaw and a short femur can also be markers for other more devastating syndromes and that we should continue to come back and have your development checked (and get a second opinion if we wanted to.) She also said that your jaw might be so short that you might choke on your tongue when you are born so we will need to have a neonatologist present at your birth so that they can intubate you immediately if necessary.

I held it together during the rest of the appointment as she continued to talk about what may or may not be going on with you. But once I left the office, and was safely in my car, I sobbed. I cried for you. I cried and cried. I cried for weeks and weeks.

We had more ultrasounds.

Here are a few more pictures of your femur... (they never got another clear picture or measurement of your jaw, you uncooperative rascal!)

Your father and I went to many specialists to discuss your case. To try to understand better what might be going on with you.

Another Diagnosis...
We had a fetal MRI done to see if we could get a better look at your femur. And wouldn't you know it, the only thing that we couldn't see was your right femur. You decided to do a little jig with your right leg (and only your right leg, you little stinker!) during the exact time we were having our MRI done.

But we did get a new piece of information: you had Borderline Ventriculomegaly. Which basically meant that your lateral cerebral ventricles were dilated beyond what is considered to be normal. This could be a marker for greater, more profound abnormalities... or not. No one knew. We would just have to wait and see.

Wait and see, if you when you were born, you had other facial abnormalities which might be markers for other genetic disorders (which weren't screened for during the Amnio). Wait and see if you hit your milestones. Wait and see if you had learning disabilities.

Again I cried. For you. And selfishly, for me.

As your due date got closer and closer people would ask me if I was excited. I wasn't. I'm sorry. That sounds horrible. But it's the truth. I wasn't.

Inside me, you were this beautiful squirmy baby. And I just didn't know what we would be facing once you were born. (I admit it. I was a coward.)

Your Birth Day...
Well your due date got closer and closer, and the day before your were due I woke up and felt fluid leaking down my leg. And then it stopped. And then about 30 minutes later it happened again. And then it stopped. And then, there it was again. And, being the practical person that I am, I put on a pad and went about doing some work while getting ready to go to the office.

Finally I mentioned it to your father and being the sensible person that he is, he told me to call the doctor. The nurse, at my OB's office, told me that I should go to the hospital and to have them check and see if I was leaking amniotic fluid. But my new washer and dryer were showing up that morning so asked if I could wait until they arrived before heading out. She, resolutely, said... "No".

Dashy, one thing you should know about me is that I'm a little, oh shall we say... headstrong. So instead of going to hospital I waited another 20 minutes for my new appliances to show up (they were beautiful!) and then another 35 minutes for them to be installed and then your father and I drove (casually) to the hospital.

By this time the dripping fluid had stopped and, wanting to be a tidy girl, I went to the bathroom when we got there, and cleaned up a bit and threw out my pad. Little did I know that the only way they can tell if you are leaking amniotic fluid is by swabbing some of it and seeing if the little litmus paper changes color. Of course when you're a tidy girl, who has stopped leaking, there is nothing to test. So they told me the result was inconclusive and to go about my day.

That night your dad (thinking that there was no way that you would ever come on your exact due date) went out for some drinks with one of his friends. While he was gone I started to get these little pains. Nothing too bad. But they started to get stronger and stronger.

Your dad came home and "fell asleep" (or passed out, which ever you prefer). I didn't want to bother him, so each time one of the pains would come I would go out in the hall and curse up a storm and dig my nails into the carpet and then come back to bed and watch TV.

Eventually I was in so much pain, I woke your dad up and asked his opinion as to what I should do. You see, the doctor had told me to call her when my contractions were 2 minutes apart. But my contractions were 4-7 minutes apart but 2 minutes long (which is absolutely not normal according to Dr. Google). And they hurt so bad that I could hardly stand it.

At 3:30 in morning your father called a doula that we had met with once. (I know, kind of rude, but he was desperate for advice.) She told him that I should just relax. Have a glass of wine. Take a hot bath. I told him she was a TOTAL CRAZY PERSON and I was IN PAIN and that was not going to help.

At 4am I called my doctor's office and got the doctor on call (not my doctor). The conversation went something like this...

"I am having contractions. They are 4 minutes apart and are lasting about 2 minutes each."

"They are 2 minutes apart?"

They are 4 minutes apart and are lasting about 2 minutes each."

"They are 4 minutes long?"

They are 4 minutes apart and about 2 minutes long."

"Hmmm... well you are definitely having some kind of labor. I would suggest that you come by the office today."

"I have an appointment scheduled for 1:30pm."

"I would definitely keep that."

"Ok. Thank you." (you crazy old man!) "Goodbye."

Thirty minutes later I had red liquid running down my leg. My contractions hurt even more and I insisted that your father take me to the hospital NOW regardless of what the doctor and the doula were saying.

When we got to the hospital it was determined that I was in very active labor and they gave me some lovely drugs for the pain. Ooooh those drugs were good. They said that they would take the edge off and they sure did!!

They told me that if everything continued going forward, as it was, your should be arriving around 3:30pm. Yay!

Unfortunately, as with everything with else during this pregnancy, things didn't go exactly as planned. My contractions started lasting 2 1/2 minutes a piece and then 4 minutes a piece and your heart rate started dropping through every contraction. Suddenly six nurses would be swarming my room and asking me to turn this way and turn that way hoping to bring your heart rate back up. And then finally I had a contraction that just would not end, and your heart rate was dropping and dropping and dropping, and they had to give me a drug to stop my body from squeezing you to death.

Since, at this point, I was no long contracting the only thing we could do was to have an emergency C-section, because my water had broken and they were worried about infection.

So at 12:59pm you were born. They had given me a lot of drugs and I was pretty out of it. (I announced several times that I was smelling peanuts.) I kept asking your dad if your ears were ok (I had read somewhere that ear placement was a marker for some genetic disorders) and he kept reassuring me that you were perfect.

Over the next 5 days the hospital ran various tests on you just to make sure that you were fine. We had another karyotype. Absolutely a-ok. Your ventricles were checked. Perfectly within range. And you were X-rayed. Your jaw was fine. (In fact, sometimes I like to think that you shove your lower jaw out so much because your heard us talking about it a lot when I was pregnant with you, and you just like showing all of us that your jaw is a perfect size.)

And here's the deal with your right femur: it has a thickness in one area. The radiologist said that if you were not a newborn he would have sworn that you had broken it. So the 2d to 3d interpretation that the ultrasound does made it look like a bend when in fact it just has a bump.

We still don't know if you will have any problems. Everyday I feel like I am holding my breath waiting for the other shoe to fall. Right now I am nervous, because when you start really walking we will know for sure if everything is ok (or not) with your leg. Everyday you take 4 or 5 steps here, 5 or 6 steps there and I'm always looking at the backs of your knees. Scrutinizing whether or not the bend in your right knee looks higher than the bend in your left. (Many times it does, and it scares me.)

Everyday that you wake up is a miracle to me. Every milestone you hit makes me cry with joy. I was so scared Dashy. Not that you wouldn't be perfect but that your life might be so hard that you might never forgive me for having you. I love you so much. And I worry about you and your happiness everyday.

Which brings me to my next topic... (Yes, there's more. I know this is an epic post.)

Not a day goes by that I don't think about the fact that when you are my age, your father and I will be in our 80's (if we are even still around.) I worry that we will leave you while you still need us. I know that out here in California we don't have any family close by. I know that you are not growing up around your cousins. And without any siblings, I am worry that once we go, you will feel adrift.

That said, your father and I decided to try, just one time, to give you a sibling. To give you that one person you would know all your life. To give you that one person who would truly understand what you were thinking when you roll your eyes at us.

We went through another cycle of IVF and
a couple weeks before your birthday we found out that only one embryo had fertilized this time. Just one. And by the second day, after the retrieval, it was only 2 cells (most are 4 by this point). So, hoping to give it a chance at survival, the doctor put it inside me early and we waited to see what would happen. It was my one little hope.

And guess what?? It worked!
The day after your birthday I found out I was pregnant. I was very happy and... very scared. (Because you, my darling, are a handful right now. But we had to do it now, because by January my chances of getting pregnant are almost zero.)

But this baby's hormone levels are not as spectacular as yours. They doubled fine at first but now they have started slowing down. At 6 weeks 2 days there was still no heartbeat and so we thought it was over.

They asked me to comeback at 7 weeks to confirm that my pregnancy had ended. So I did, and I couldn't believe what I was seeing. The baby had grown and... there was a heartbeat. This baby is a fighter just like you, but unfortunately it's heart isn't strong like yours. It is slow and erratic. The doctor told me that he had never seen this kind of thing turn around into a successful pregnancy. He believes that this baby has profound chromosomal abnormalities incompatible with life. (There are those words again.)

So, now, I am waiting my baby to die. Our baby to die. The sibling that I so wished for... for you.

I am really, really sad. No one should ever have to wait for a baby to die.

I wanted to give you a brother or a sister. Someday you might ask me why you don't have one. I just want you to know, we tried.

We tried... and we had you, Dashell. The beautiful, beautiful ray of sunshine in my life. And everyday you are true source of joy.

Many days, lately, I might be sad, but then you do something like you did the other night (when you discovered my belly button for the first time and you laughed so hard and so long that you had tears streaming down your face and you gave yourself the hiccups!!) and happiness comes rushing back and a smile easily breaks across my face.

I love you Dashy. I am sorry that you might never have a sibling, but I want you to know that you are truly loved, and cherished. I wish for you many, many friends and as much happiness as the world has to offer.

I love you so much my beautiful, perfect, sparkling little boy.


Erin Drez said...

Wow, I'm speachless. I know this must be so hard for you and I understand your wanting to give Dash a sibling, but as I've learned in my life - parents play the most important role in our lives and Dashell has 2 wonderful parents who love him to the moon and back. He is blessed and I know he feels it!!
We lost a child too and I know how hard it is. You will be in my thoughts and prayers.

Diana said...

Gwynn, I don't know what to say. I so badly wish I were home right now. I need to hug you. Selfishly, I need to put my arms around you and shed tears with you. This hurts me to the core and I know that the pain I feel is so very insignificant to what you and Dave are feeling right now. This is a beautiful post for Dashy someday. You have put your heart out there for all to see and we are grieving with you. I love you and Dave and Dash so very much and will be praying for you through this difficult time.