Saturday, October 1, 2011

Update on Emma

This week was a bit of a roller coaster. I'm currently seeing the doctors twice a week for NST's. I was going to Maternal Fetal Medicine one day (I would get an ultrasound too) and the other day to my OB dr. Well this Monday's appointment at MFM they found so fluid around Emma's one lung. They called it a Pleural Effusion. The dr. goes on to say if it doesn't get better they may have to deliver Emma early. I didn't get a lot of information once he said that. I just kept saying uh huh and ok. He said lets look at it again on Wednesday. Well of course I have to google things when I get home... DO NOT DO THIS! Definitely mislead me. I of course couldn't sleep well that night so I called MFM the next day to see if I could come in then. They said sure, but the dr. really wanted to see if the fluid changed and I would probably still have to come in on Wednesday. I was fine with that. So Tuesday I went in... they said the fluid looked better. I was surprised because I didn't know if could do that... but they wanted me back the next day to see it again and to also look at her heart again. So Wednesday I'm feeling better... I go to the appointment and the fluid is even less! YES! I was so happy!! I finally got some answers about all the reading I did and felt in a much better place. The fluid could build back up or go away completely. If it gets worse we will most likely be talking an early induction. But for now they have me going to MFM twice weekly now w/ and ultrasound at both appointments. The NICU team at York have already been told about me and Emma, so they are ready if we have to go early. I will try to keep everyone updated as we continue this journey.

On a side note. I would like to pass some information that I read on the message board that I go to frequently. It's a post on how parents prefer to refer to their children w/ Down Syndrome:

We've got a number of new moms and moms who are waiting for their babies. It is so good to have you on the board and we hope we can support you along your journey with your new little ones during this uncertain time.

I thought it might be helpful to give you some information about what language most of us who are parents of children with Down syndrome prefer to hear when referring to our kids. This is something most of you can carry with you if your child has Down syndrome or not. And if you didn't know the way we prefer it until now, please don't feel bad if you wrote something that wasn't the way it is written below - many of us did the same thing until someone told us!

Below are tips for the proper use of language for "Down syndrome". The National Down Syndrome Society and the National Down Syndrome Congress encourages the language below:

Down vs. Down's. NDSS and NDSC use the preferred spelling, Down syndrome, rather than Down's syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s" connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it.

People with Down syndrome should always be referred to as people first. Instead of "a Down syndrome child", it should be "a child with Down syndrome." Also avoid "Down's child" and describing the condition as "Down's, as in, "He has Down's." This seems like a minor distinction, but to me it is like the difference between someone telling you 'you look pretty in that dress' vs. 'that dress looks pretty on you.' One compliments the dress, the other is a compliment to you.

Down syndrome is a condition or a syndrome, not a disease. People with Down syndrome can be perfectly healthy.

People "have" Down syndrome, they do not "suffer from" it and are not "afflicted" by it.

It is clinically acceptable to say "mental retardation," but you may want to use the more socially acceptable"cognitive disability," "cognitive impairment," "intellectual disability", "developmental delay" or "intellectual impairment."

Feel free to ask questions if you'd like additional explanation/reasoning on these points!

Monday, July 25, 2011

Baby Girls Echo Cardiogram at 24 weeks

Well today was the big day for baby girl's echo. I was pretty nervous this morning. I thought for sure they were going to tell me bad news. So we went to the appointment at 1:00. The tech started taking pictures and of course baby girl wasn't in the right position for the best pictures... but she did w/ what she could. She printed me a bunch of pics in 2D then switched on the 3D for me. Baby girl is still skinny but she is sooo cute!

Her knees were touching her nose!
Face shot

So then the Dr. came in and did the same scan again. He checked out the VSD and said it's still there, but he's still not overly concerned with it. We'll just continue to watch it. I asked him to check the kidney that had fluid on it and he said "looks good... if anything it looks better". Then he really started to study the heart. The flow of blood through all the vessels and the heartbeat. Well he heard something new. He said it has nothing to due with the Down Syndrome. Baby girl is having PAC's ( premature atrial contractions) and has borderline of SVT (Supraventricular tachycardia). He had them hook me up for a NST to confirm the PAC's and it did. For now we have to watch this. He wants me back on Wednesday for another NST to see if it's getting better or worse. This can be treated in utero. We'll see what happens on Wednesday. This could be hereditary (from me). I'll update on Wednesday :)

Friday, June 24, 2011

I told Andrew

I told Andrew today about his little sister. I asked him if he knew what Down Syndrome was and he said no. I said well your little sister is going to be born w/ it. I don't think he really grasps it though. I told him she will look a little different. He said like what. I said her eyes might be different and her ears...he said so she'll look like a monster... I said no (laughing a little...words of an 8 yr. old). He said what color will her eyes be... I said I don't know... well he said what will be different about her eyes... I said they will be almond shaped.. I also told him I will want his help, like he does w/ Jake, because she will be a little behind. He said OK. He doesn't really seemed phased by this information. I really didn't think he would be. But he knows and I'll answer any questions that may come up.

Wednesday, June 22, 2011

Before we knew

This baby was our "oopsie baby". I took a pregnancy test on March 22nd and it was positive right away. I was happy as I have been w/ all our children. I called the dr. to set up our first appointment for the first glimpse of our new baby. That was scheduled for April 11th. We saw the baby for the first time, heart beating away, and they gave us a due date of November 14th, 2011.

Baby's 1st picture

They also gave us all the information for all the testing you can have done. She mentioned the First Trimester Screening. I had not had this done w/ my other two, but thought what the heck...I'll get to see the baby again on an ultrasound. So we scheduled that for May 2nd.

I never thought I'd get a call from Maternal Fetal Medicine, that my baby had a 3% chance of having Down Syndrome. Just that phone call had me hysterical. I called Tim bawling. After I talked to him and my sister and my bff Sara, they all assured me that these test are often wrong, there's not a likely chance that "I was the 1". I mean after all I knew in my heart my baby was fine, right? Well we met w/ the genetic counselor, who pretty much just went over the results of the First Trimester Screening, told me we had a 3% chance of having a baby w/ Down Syndrome and what our options were. We could have the CVS test (Chorionic Villus Sampling) done which would need done right away, we could wait until I was 16 weeks along and have the amnio, or do nothing and just wait and see. Well I needed to know right away. I was 13 weeks 4 days and had to have the CVS before I was 14 weeks. So they got me in later that day to have this procedure done, where they put a needle through my stomach and take a sample of the placenta.

Picture they took before the procedure started

Now I had to wait a week to 2 weeks for the results... but again I "knew" everything was fine! I kept calling (because they said I could, lol) and they didn't have the results yet...But on May 24th, I got the call... the call you never expect to get. The genetic counselor said, "Lindsay, it's not the news you were expecting, your baby has Down Syndrome", I was in shock. All I said was "ok". And then I asked what the sex of the baby was and she said "it's a girl", I said "of course". I lost it. I think I cried uncontrollably for most of that day. My sister and Sara came over and we talked about it, made me feel a little better, but it all didn't seem real. The counselor wanted us to come in and discuss the results, so Tim and I went in later that afternoon. They first told us that this was not our fault, there was nothing we did to make this happen, or nothing we could have done to prevent this. Of course we were give all the statistics and what our options were w/ my pregnancy. I was still in a fog. We had so much to think about. Would we keep the baby, what does this mean for our family, what financial hardships will this bring on, what about our other 2 "healthy" children, and a lot of other things. We decided to wait to make "that" decision about our baby girl until later. I couldn't with all the life in me terminate a pregnancy. Emotions were everywhere. I'm not a big "GOD" person, but I kept asking him for direction. To tell me what I was supposed to do with this information. Did I know about this now so I could terminate or prepare. I wanted a sign! But I knew the answer was in my heart the whole time. We didn't plan for this pregnancy, it was given to us for a reason. I was chosen to bring this special girl into this world.

The next step was the "big" ultrasound, where they could see if she had any other "markers" for down syndrome. But in the mean time I started reading. Mostly blogs and message boards, because these are real people that are living w/ children w/ down syndrome. I needed to know what my state offered for help. I found most of the information I needed and I've really accepted that we are having a very special little girl. She will be a baby, a toddler, an adolescent, a teen, an adult. She will do most of what my other children have done, just might take her a little longer to get there... and I'm a pretty determined person, so I will help her get there! She will still look like us, act like us and be as much a part of our family as Andrew and Jake are. She will go to preschool, elementary school, middle school, high school, and if she wants college... There are so many opportunities out there for her it's amazing. Maybe more than for Andrew and Jake. I've really started to get excited to meet our little girl. I'm still scared of the unknown, but I don't know what is in the future for any of us, so I can't let that keep me from living my life.

 We had our "Big" ultrasound on June 17th. We were nervous of what they were going to tell us. Some things they were looking for are heart defects. Children w/ down syndrome have a 40-60% chance of having one. They would look for blockages in the bowel, kidney problems, shortened bones, cyst on the brain and several other things. So what did they find... well she does have a hole in her heart, a VSD (ventricular septal defect ), and some fluid on her left kidney. The doctor didn't seem overly concerned w/ these findings and said we'll watch them. But he kept saying "this baby looks good". She had no other "markers".

We will go back on July 25th to have an Echo cardiogram of her heart and will be able to better see the hole and how big it is. For now I am happy. I don't want people to be sad for us. I'm past the sad part of this diagnosis. I want to move on to the fun part of being pregnant. I'm feeling her kick, we're picking baby names, and I've started a collection of pink things. I want people to educate themselves on what down syndrome is and I hope they will and will want to be a part of my daughters life and love her for who she is, not judge her for having that extra chromosome and looking a little different.

Here are a couple things I've read along the way that have kept me encouraged:

This is called Welcome to Holland, love the perspective it gave me. And the way I've figured it, I've been to Italy twice, so why not check out what Hollands like :) has been a great resource too.

There are more that I will update with later. I need to find them again, lol...

Stay tuned for updates :)