Sunday, October 1, 2017

ON DOING FETAL SURGERY OR NOT

After meeting with all the doctors, we were offered fetal surgery. They said we qualified due to her chiari malformation being "severe".

The neurosurgeon did not seem to be too keen on the decision when we met him. He said the decision to do it was ours and whichever we choose, this is the right one.

The MFM did not seem too keen on it either. They said we could meet the team in Houston, get evaluated and then see, but we were warned about the possibilities:

It is dangerous for baby
It is dangerous for mommy
It is not a cure
Recovery is tough
There is higher risk that baby will be born early and this can mean more issues, like breathing for instance.

It was such a hard decision. We see on the forums all those children who had fetal surgery and they are doing so well. Parents say their chiari reversed. Some kids are walking, even running. It is so tempting, but at the same time we are so scared to go through it.

It terrifies me. What if Melody dies? What if she is born too early and she develops other issues?
What if I die? How are we going to handle the recovery far from home? With a husband at school finishing his degree, doing an internship during the summer, and my job? And the animals?

I went home to France for 10 days, and I talked a lot to my mom about it. Explaining I was still unsure about our decision of not doing fetal surgery. I felt guilty somehow. What if because of me, my daughter is deprived of walking or she had issues with her chiari?

But when I read the chances of her being a preemie, it scared me even more. We did not want to add more issues to what she already has. And the kids who did not have fetal surgery are doing well also.

And then, while I was in France, someone posted about a couple who chose to do fetal surgery and the baby passed shortly after. And that was devastating. It could be us. And that is when I became at peace with our decision of not doing fetal surgery.

It can do wonders. And I am sometimes envious of all the families who had the strength to do it. But at the same time, it did not seem right for us.




THE PREGNANCY AND THE DIAGNOSIS

Today is October 1st and in a little over 8 weeks, baby will be with us. Let me tell you about those 30 weeks of pregnancy.

We had an ultrasound at 5 weeks with the reproductive endocrinologist and everything was well in order so he discharged us. Meaning from now on, I will see my OB for my appointments.

We scheduled an appointment at 7 weeks and I had another one at 9 weeks. Here is our little peanut.


At 10 weeks. (OB was nice enough to check me and give me a quick ultrasound just because :)


Everything is going well so far and we are so excited to have a baby.
So we decided it was time to tell everybody. So far, only our close family knows and a few friends. So we made our announcement on social media.


 We had been to the Bluebonnet trail in Texas and had someone take our picture.

Also at 10 weeks, I had a blood test to screen any possible problems like Down Syndrome and Trisomy 18 I think. This screening also gives the gender of the baby.
One week later, the nurse called me, said all my numbers were fine and so baby was fine, and she asked if I wanted to know my baby's gender. Big YESSSS.
I was at my desk at work, and she said, "You are having a GIRL"
I screamed out loud because I was so happy and then I cried.
I was so excited to tell Mike. But I did not want to do it via text or phone, so I (not) so patiently waited til the evening, I stopped by a bakery and Hobby Lobby on my way home, and I gave him this:


 I told him I had found a new bakery and I had bought him a tasty cake, and asked if he wanted to see it. He said yes so I gave him the box, he opened it, looked at the cake, and he said: "cool, thanks baby." And... that was it... My jaw dropped. He had not seen the obvious. I looked at him and I said: "Are you joking??? Look at that cake again!!!"
And he did, and he realized, finally, that we are having a GIRL!!!!

We had a few names lined up for a girl:
Brooklyn
Savannah
Madison.
And also, Melody.

One night, before being pregnant, I dreamed I had a little girl named Melody, and she was in her high chair while I was feeding her. And that baby was talking to me like a grown up and I could not believe I had such a smart little girl.
I had told my dream to my husband and I said that the baby's name was Melody and I liked it. He did too.

So a few minutes after telling him we were having a girl, he came to me in the kitchen, and he said he liked MELODY the best, to which I replied: Then Melody it will be".

I sent a few scratch off cards to the family, so they could discover the gender.
It will be my parents' first granddaughter as my brother has 2 sons, and my sister has 1 son. Finally some pink!!

And then, the Anatomy scan came.

 DIAGNOSTIC DAY JULY 17th 2017

This day we were not prepared for.

We had an appointment for the anatomy scan. I was 19 weeks and 4 days. Mike came with me and we were both scheduled to admire our little girl and then go back to work showing pics of how beautiful her profile is.

Well, it did not go that way.
The technician checked every organ, we got to admire her little profile, she put it all on a CD and gave us a few pictures of our daughter.




Look at those little legs crossed, just like a lady.

Then the doctor came in, started talking, and talking, and I am not sure what he was saying. He then mentioned "lemon shape" for the skull, and I was wondering why he was saying that. She looked fine. And then he said it:
"Your daughter has Spina Bifida" And I cried immediately. Because i don't know everything about it at this time, but I know it's serious.

The doctor tried to explain a little more, that she would have mobility issues, that the lesion on her back was low. That it does not really affect her brain in the sense that it does not mean intellectual impairment. So he scheduled us to see my OB right after.

Mike was trying to appease me, saying she would be alright, but honestly I did not believe him. I was so devastated. The first thing I was able to say to the doctor before he left the room was:" But I took my vitamins."

Because I had. In fact I took over the counter vitamins before we started trying to conceive. Then I took the prescription prenatals for about 6 months, religiously. Never forgetting. And now I am told that my child has Spina Bifida and I know that it is supposed to be linked with Folic Acid intake and that is one of the reasons you take prenatals when you want to conceive. So why us?

I never took a single medicine during my pregnancy, never ate anything I should not. I don't drink coffee, no alcohol either, no sodas. I was careful eating veggies, and protein and...

But no, it is nothing we did or did not do. It just happened to us. And we feel it is so unfair.

My OB repeated what the MFM said and then he said that even though we could not see it now, we are lucky because some parents get a much worse diagnosis and this is  not the end of the world, and we will realize this in a few days, after we do a bit of research. He also mentioned, for the first time Termination.
He said:" Are you going to be one of those people who terminate the pregnancy?". And I did not even think it was a possibility in Texas at 19 weeks.. He said we had until 24 weeks I believe. So we had some thinking to do.

MOURNING

we drove home. We did not go to work. We could not. We cried all day and did some research online.
We also got in contact to meet with a neurosurgeon so he can explain the situation. And we cried again.
We watched videos online of children with Spina Bifida. I found a group on Babycenter.com for parents of children with Spina Bifida and I started reading their comments, look at pictures. And then I became a member and I posted about our situation. And very quickly we had tons of replies, of parents who go through the same thing.

We cried some more. Because at this point though, before reading all those parents' experiences, I thought we would have to terminate the pregnancy. And that was terrible. I had been feeling my baby move in my womb for a few weeks now. She started at 17 weeks, on July 3rd. And now I have to get rid of her? That was just too much.

My family is telling me this is best for everybody and I can't even imagine having to go through this process.
The next day, I cried some more. All day. Mike went to work.

I read those parents replies to me and I started becoming hopeful. The MFM told us the lesion was low, probably sacral, so S1 to S5. I started being hopeful and we did more and more research and more and more talking to other parents online. We finally started to think that it would be hard but we could do it.


The following Monday we met Dr. W. at Childrens hospital in Dallas and he explained what we had mostly read all week. That it is a snowflake condition and no 2 SB child is alike. He explained all the possibilities, the good ones and the bad ones, the chances of each happening, and his capabilities of "fixing" things. And we liked him a lot.

Dr. W. Scheduled an MRI the very next day. And I made the mistake to talk to the radiologist right after. And she crushed me.

I saw my baby move in my womb on the video, and I saw her Chiari malformation right when I entered the room. I knew it was low, and bad. And that is exactly what she said. She looked at me and she said:"It's bad, it's really bad. And she kept looking at me like I was a desperate case. She asked if we had other children, and I said it was our first. Again, she looked at me like I was that that hopeless case. I went back to work devastated. With no hope, back on the road thinking about Termination being the "right" solution for everybody.

The next day I met Dr. W. who put my mind at ease. He said her lesion was higher: L3 to S5 like the radiologist told me, but he also said that the chiari is low yes. But it really does not mean anything. He said it can be low and big and have no symptoms, and sometimes it is minor and symptoms are numerous. He said there is no way to tell in advance. He mentioned some symptoms, such as breathing, sleep apnea, gagging, ... . He said sometimes He can do a decompression and it can help, sometimes it wont. Some kids need a breathing tube for a little while, some need a feeding tube, but all should be temporary. Big chiari symptoms are rare. But it happens.

I called my husband, I told him what he said and we had hope again.
We decided to keep our baby and we decided we were not changing our mind anymore. That was it.

I bought dinner on my way home with a piece of cake for each of us. I told him we were having a baby and that IS IT. And we finally could be at peace with our decision.

Today, we are 30 weeks pregnant. And we are still preparing and reading a lot about the possibilities. We try to be as educated and as ready as we can be.

We have visited the NICU, we have a date for the C-section. And Melody will be brought to this world on November 30th 2017. At 39 weeks exactly.

We know it is going to be a rough road but it is what it is. Like Mike said, we don't have children. This will be our new normal.

Here is Melody at 28 weeks 4 days.















Tuesday, March 7, 2017

The Road to Conception

IUI Cycle Number 1

This is my very first post and also the reason why I decided to create a blog.
Mike and I have been married for 4 years now and we have been trying to conceive for 11 months with no success.

We went to see a fertility clinic back in September, to check that everything was fine, and all tests came back ok. The doctor told us to keep trying until February, and if still not pregnant,to see him again to discuss about the next step.

Here we are, it is early March, and still no BFP (Big Fat Positive) on the pregnancy test. After consulting again, the doctor said that we have 2 options: Laparoscopy for me, because I had appendicitis when I was 10 so there may be some scar tissue in my tubes, though we saw nothing during the HSG.

Second choice is trying IUI for a couple of times, before laparoscopy.
Well, we chose IUI because laparoscopy does not sound too much fun.

So here is how it goes:

My cycle started Saturday (March 4th) and so I had to call as early as possible to schedule a first sonogram within the first 5 days of my cycle.

We had that appointment today and they checked my uterus, ovaries and the follicles produced. Doctor said so far so good, lining looks great, follicles also. We ordered treatment for the IUI procedure, and so tomorrow, I  should get a lovely package at my door full of goodies.

We will have gonal injections, and ovidrelle.
Gonal injections will be injected by Dear Husband Himself because let's be honest here, that girl is no trooper and needles are no friends of mine. He will have to inject me 3 times on my belly. We will start the first Friday evening, then second one Sunday evening, and last one Tuesday evening.

Before that, starting tomorrow (Wednesday March 8), I will take Clomid pills,1 a day for 5 days. After those 3 gonal shots, on Wedneday March 15th, I will go back for a second sonogram and they will check the growth of my follicles. If they are long enough, they will give me the last shot (ovidrelle) to trigger ovulation, and I will go back Thursday or Friday for the insemination.

Here you go, you have the whole schedule of my wombs' adventures.

I will of course update along the way on the next sonogram, and IUI procedure.

So far, so good, nothing crazy yet... until them needles show up tomorrow:D, then I can't guarantee my sanity.

So Baby Number 1, HERE WE GO!

Here is the schedule of the treatment, in case you will go through the same experience and are as curious as I was.




Alright, Today is Thursday March 9th, and here is a little update:

Received the goodies yesterday at my door, like the pharmacy had said.


So Gonal injections (in a pen), ovidrelle injection (in a pen), progesterone suppositories, and a mini trash can for the needles. Also some rubbing alcohol pads and sponges.

Yesterday was also the first day for taking Clomid. 4 more to go.

And, finally, yesterday was also a great day (NOT) dealing with the doctor's office and insurance. So today, I have to call the doctor's office back because insurance is requesting a Medical Necessity Letter from him. (I am just making it short because we all have to deal with Administration fun).

On the phone, the lady from the insurance goes: " Yes ma'am, you see, we need that letter because we do not know why you are doing IUI".
WHAAAATTT??????

And I had to hung up before losing it, because, well, I thought this was obvious. I mean, I want to do IUI because I always dreamed of having my husband give me injections in my stomach. And then, having the doctor insert a catheter inside my womb and introduce a needle full of my husband's semen seems dreamy to me. Doesn't it?

Glorious!

Saturday, March 11th 2017

Yesterday was time for the first shot of Gonal into my stomach.

We took the pen out of the fridge 30 minutes before injecting and did it at 6.15pm.

It was honestly nothing at all.




We even tried to make it a little funny :)

Sunday March 19th 2017 UPDATE

Let me tell you how the rest of the iui process went.

On Wednesday the 15th was scheduled my second sonogram to check my lining and and the follicles. However, on Tuesday I took an ovulation test and the line was quite dark so I called the office and they asked me to come to check everything. I was reassured that I had not ovulated yet and the follicles were still growing. I had to take the last Gonal injection that evening like planned. My follicles were 11 mm on the right side and 16 and 15 I believe on the left side.

So Wednesday the 15th I went to the last sonogram and it's amazing how the follicles had grown so much compared to the day before.
Right side was 16mm I believe, and on the left side I had 18mm and 20mm, and the lining was perfect (7.4mm and the day before was 7mm).

They did another blood test, and also gave me the very last shot of all to trigger ovulation. I made an appointment for Thursday morning for the actual IUI.

We dropped off the specimen at 9am, were a little worried it would not be enough (FYI, the cup is pretty big), and then they told us to come pick it up around 10 and IUI was at 10.15am.

We sat in the room waiting for the doctor and wondering if the semen was good, and doctor came in congratulating husband saying he did "a fantastic job" and that the count was great and everything looked good.
If you are wondering, after the wash, he said he was injecting the equivalent of a teaspoon and we had 26.06 million. ( The minimum must be over 9 million).

Doctor inserted a very thin catheter, which felt exactly like a pap smear, just like the nurse had told me the day before, to my big relief, and he injected everything. I led down for 10 minutes, got dressed and off to Denny's for brunch we went.

As you can see, I decided to take it easy and I took the day off from work, away from the craziness. After that we came home watched TV for the most part, until we BD in the evening like the doctor suggested, and then again on Friday.

And now we wait.... for 2 weeks, til I go for the blood test. Until then,  I have to insert progesterone suppositories every night.

Oh, and last but not least, I got awesome girlfriends who had a bouquet of flowers delivered at my door to brighten my day :)






2 Week Wait Update (April 3rd 2017)


On Saturday the 25th, for some reason I got the feeling that I was pregnant. Not too many symptoms but nonetheless I kinda knew. I was only 9 dpo.
I woke up in the middle of the night from Saturday to Sunday and could not go back to sleep. I was in a euphoria, convinced I was pregnant and would not calm down.
Of course, on Sunday morning I took a test and there was the faintest line.
No need to tell you about my excitement here even though I was a little anxious it was still due to the trigger shot.


Monday morning, I took another one and the line got slightly darker:


I also had symptoms such as bloating and slight cramping, and feeling queasy,or uncomfortable after eating. I just knew it.

I went to the clinic on Thursday morning for my blood test, and they called me at 2.30 pm with the GOOD NEWS, and said that the baby is due on December 7th.

I told Mike on Thursday evening (he had no clue til then since I told him we were going to the clinic for the blood test on April 1st).

And here is how I told him:



A good friend of mine, who is quite the artist had prepared this. How cute is that???


Today, I go again to the clinic to check that my Beta has increased. I am 4 weeks and 4 days, and according to my app, the baby is the size of a poppy seed :)