Scary Babies

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What would A Surprising Joy be without a big surprise?

We are thrilled to be welcoming our third child to our little family this March! Much like her older sister, this little girl is already enjoying surprising mommy & daddy. While unexpected, she is very much wanted and we cannot wait to meet her!

Pregnancy is a weird experience. I suppose it is magical and amazing but mostly, I find it strange. Each pregnancy has been different, however there is a consistent theme in mine…fear of the ultrasounds.

Depending on who you speak with, some parents will tell you that once they had a child with special needs, they were too scared to have more children. Others state that they never gave it any thought and some say they would proceed but in a half terrified state. I fall somewhere in between category  two & three. We wanted more than one child and Lily, being our first, and having Down syndrome really did not deter us much from having additional children. What it did do, was create an innate fear within us when it was time for the anatomy scan ultrasound.

During my pregnancy with Oz, we opted out of any prenatal testing, just as we had with Lily. Prenatal testing takes on a whole new meaning once you already have a child with Down syndrome. There is a cloud of conflicting emotions. Some, all of your friends would understand but others, you keep to yourself partly because you aren’t sure what to make of them yourself and partly because the thought of being judged by others makes you want to vomit. (And you are already nauseous enough as it is!).

How should I feel about finding out my next child is “normal”? What if I am happy? Would that be wrong? Would that be an insult to Lily?

What if I don’t want to have another child with special needs and want to pray for a “normal” child? Am I a terrible mother?

Now, if you have followed our journey thus far, you will know that we would never terminate our child because of a disability. So even with these thoughts above, that never crossed our mind. But all those other thoughts, did. And they were hard to hear and even harder to reconcile.

I did my best to ignore them and managed to enjoy being pregnant last time (aside from the physical discomfort).  Oz was born happy & healthy & no major problems.

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Now I am in my final pregnancy. Knowing this will be my last baby I carry on the inside (we will be fostering later), definitely creates a different experience all together. But those thoughts…those thoughts are there…once buried, they have resurfaced and I dared to explore them.

The biggest difference in this pregnancy is that I decided to have a prenatal test done. This test would clue us in on any abnormal chromosomal activity. So effectively, we would know when I was barely 10 weeks if there was a chromosomal abnormality present. (As a big bonus, we also would learn the gender of our baby!) Every pregnancy is scary so I decided to shed some light on some of the fear so that I could begin to let go and revel in this one.

While waiting for the results, I began to face the thoughts that had made me feel like a monster before and were threatening to again.

“Am I a bad mother for praying for the results to come back normal?”

Of course not. No parent wants their child to have a disability that would impede their health or impact their quality of life. I have stated this before but we are so very lucky that Lily does not have any health problems as of yet. But her medical future is still a scary one for us.

“Am I somehow de-valuing or insulting Lily by not wanting to have another child with special needs?”

I guess that would depend on how you look at this question. Since we chose to have Lily regardless and would make that choice over and over again for all our children, my answer is no. For the same reason as stated above, I want my children to have all the opportunity and ease of life as possible. Knowing the uncertainties and the potential health problems and seeing first hand what a disability can do to your child’s spirit some days, of course I would never wish that on a child. I don’t wish that on Lily. I would remove any disability from my children if I could, and I am not going to feel bad for thinking that way.

Our results came back negative for any overt chromosome abnormalities. I was flooded with relief, quickly followed by the heaviness of guilt. No matter what I had reasoned, it is obvious that these thoughts had imbedded in me self-doubt. I was so insecure about how to feel that I wasn’t sure how to let my friends know, either. Should I use exclamation points and smiley faces? Should I just state it as a fact void of emotion? Turns, out that it really didn’t matter. This was my private battle, not anyone elses. Or so I thought…

I have had  amazing opportunities to meet with and speak to hundreds of parents that either have a child with special needs or have one on the way.  I have been blessed that many of these parents have shared their fears along with their joys with me. And I learned that I am most certainly not the only one with these intruding and uncomfortable thoughts. I am also not the only one who has felt alone and insecure about sharing these thoughts with anyone else. To all of us parents that have went on and had other children since our little one with special needs, I get you and I know you get me. Thank you for that.

Now we still have that big, scary anatomy scan coming up in a couple of weeks. I have chosen to not care anymore. Those thoughts will come and go and eventually will fade back into the recesses of my mind where I prefer them to reside anyway. Soon we will welcome our little girl. She will meet her big sister and big brother and all will be right with our little world, no matter who she is and who she will become. ❤

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Lily Luet

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Oz Jameson

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Baby Girl

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How I met Lily Luet

James and I tried for 7 months to have our baby. This is our journey:

 We finally got up the nerve to actually have unprotected sex, we were totally convinced that what our parents always said was true- you will get pregnant if you don’t use protection! Well imagine our disappointment when that is not what happened. Our parents LIED! (lol, okay I ‘m over it now). Anyway, I finally got irritated and went to have a fertility test done where the flush out your fallopian tubes. Here’s where our incredible story really begins.

During this exam the tech kept asking me all kinds of bizarre questions like, “Do you have 2 cervixes?” or my favorite “Have you ever been told you might be unusual?” I lay there on the table spread eagle with a balloon inside me wondering what the hell does all that mean?! As it turns out, yes you can but I didn’t. I received the phone call from my doctor the next day. She told me I had a rare birth defect called a unicornuate uterus. Basically I have only half of my reproductive parts. She gave me a 50% chance of ever conceiving and less than that of being able to carry a baby to term. Then she told me to get an ultrasound done to test my kidneys because I may only have one. (Nice doc huh?) Oh, and then to have a nice day. (I am not kidding). I won’t bore anyone with all the medical stuff here but the final result is this: I have 2 ovaries, 2 tubes (but only one works) and a banana shaped uterus, which means it is smaller than a normal one. This is very rare but not a lot of research has been reported on it. Oh and I have both my kidneys phew!

So we signed up to see a reproductive endocrinologist April 14, 2011. There we learned a lot of insightful and scary information that as it turns out we did not need because little did we know we were already pregnant! (On our own, I might add).

I was waiting for my period to show so I could move forward with some additional fertility testing when it did not show. This was April 21, 2011. I was working at the zoo in Utah and I knew something was up. I dared to hope but waned my excitement. When I got home I was irritated, I texted James to bring home a pregnancy test because I didn’t want to go back out (I was tired and cranky). He comes home but empty-handed (he never got my text because his phone died). Here is where I turned into a different person (literally because I am a very calm person normally and this woman was crazy). I will spare the details but I ended up slapping my husband across the face and then crying in my closet. This is where you all will adore my husband: He said (right after I hit him) “That is interesting; I am going to the store now to get you that test.” LOL!!!!! Oh my God he is awesome.

We tested and saw 2 pink lines right away then sat down and had a discussion about pregnancy hormones!

Since I was considered high risk we began seeing a maternal fetal doctor and had a sleuth of visits and ultrasounds. Each ultrasound was both the worst moment and the best moment (remember I was told I would probably miscarry at anytime). We made it to the 12 week mark and while my fellow baby bumpers were celebrating relief, I was growing more terrified. I was in this and terrified that as my baby grew, I would not be able to carry her any longer. Losing her now would have murdered my spirit. At our 16 week ultrasound, we found out we were having a little girl (omg, yay!!!) and then we found out there was something wrong with her….a lot of somethings. They found 6 soft markers that indicated down syndrome including a possible heart defect. The very same day we found out we were having a daughter; we were given the option to terminate her. (yeah). We went home (declined the genetic counselor because she was just awful) and did a little research on DS. We grieved for the baby we thought we were having. We called our family and friends and told them the news and to prepare for a child with DS to enter their world. (We never once thought about termination). We declined the amnio because I couldn’t decide about it and James did not want to risk it. By the way at 20 weeks, all of her soft markers were gone except they couldn’t see her nasal bone.

A nasal bone, such a small thing, yet such a huge deal. Don’t take your noses for granted! 😉 (My mother thought that meant Lulu did not have a nose! Tee hee, I still laugh about that today.

Speed through the rest of my pregnancy which although was very normal, I felt was somewhat stolen from me. Too much information can be a curse; I wanted to be blissfully ignorant.

At 34 weeks my doctor thought Lulu may be starting to experience IUGR and we may need to induce me early. We took it week by week. By now I have quit my career, moved my business and my family all the way back home to Oklahoma! I went in for a NST on Friday, December 2, 2011 and didn’t come home until 5 days later.

This is getting really long….sorry to those still reading….anyone??? Bueller…….;)

At the ultrasound I could tell something was wrong ( we were getting really good at this now). They sent me straight to my doctor’s office but wouldn’t tell me what was wrong. I knew she wasn’t moving but they kept looking at her heart on the screen and I could hear it beating. My doctor was in surgery and so we had to wait but all his nurses greeted us at the door (not a good sign). We chose to wait in the hallway and I literally slumped to the floor, holding my belly and pleading for her to be okay. My husband called his mother and asked her to pray for us. Finally we are sitting before the doctor; I am functioning on pure terror now and can hardly keep it together. He starts out reading the ultrasound report and everything sounds fine. I couldn’t contain myself any longer and I blurted out, “What the hell is wrong with my daughter now?!” He laughed and said, “Nothing.” He said she wasn’t moving very much and wasn’t practicing her breathing like they would have liked to see. He then said, I think it’s time to have this baby. What are your plans this weekend? (lol, oh the humorous things I could’ve said here). He admitted me right away for a night of observation and would induce the following morning.

Here comes the dramatic action part……

I get into my room, get my attractive hospital gown on and get hooked up to the monitors. I settle in my new bed and text some people on what is happening. James left to take our dog to my mom’s house for the night and I began thinking about what it will be like to give birth. (I was going to have a natural, drug-free experience and then hold my daughter skin to skin and breast feed right away!)

I was admitted at 4pm and my daughter was born via emergency caesarean at 5:17pm (amazing how easy it is to remember the exact time you had your baby, huh?)

As soon as my husband left, the nurse came in and said, “huh, do feel any contractions?” I said no just a bit of cramping. She said well the babys’ heart beat keeps dropping when you have a contraction. We will keep a close eye on you two. 5 minutes later, my doctor comes in in scrubs (yes scrubs) and says call your husband you are going to be parents right now. (Oh the curse words I could use here to explain my emotions…) He said you are in labor with contractions coming every 2-3 minutes and Lulu’s heart doesn’t like it. She will not survive labor so we have to perform an emergency c-section (I am not about to attempt to spell that out again). My husband was across town in 5 o’clock traffic trying like mad to get to me. I went into what I can only see now must have been a state of shock. I began shaking uncontrollably. They wheeled me into the OR (that’s how you know it’s an emergency- no option to walk) There were people EVERYWHERE. I was watching everyone while waiting on the anesthesiologist (my team of doctors, because I was so special ;), the attendants and the NICU team (I was 36 weeks along) and a pediatric cardiologist. The spinal went fine considering I was shaking off the table. On a side note…..the operating table was the skinniest table I have ever seen in my life- I was sure I was going to fall off of it!

So I told whoever would listen that I did not want my arms strapped down or I would panic ( I had heard they do that with c-sections) and my drug dr (not gonna spell that out again either) was very nice and said I won’t do anything you don’t want. Lo and behold I ended up panicking anyway because as the spinal took effect and I couldn’t move lower half my shaking got worse and I thought I was gonna explode. It was at this time I tried to sit up and I told everyone in the room that I was leaving. I told them that this was happening too fast and I needed time to think. (Oh yes I did). I was met with the strangest looks and my nurse told me, “You are okay and you’re going to meet your daughter now.” My very nice drug dr. told me as soon as she was born he could give me a mild sedative for my anxiety, I told him no. It was also at this time I remember my doctor yelling, “Is James here? Bring him in here NOW!” By the grace of God (and I really do mean that) my husband made it, barely. He came in grabbed my hand, took one look at me and said to my drug dr, is she okay? I don’t remember what he said. Two seconds and a lot of tugging later my daughter was born into this world. I will never ever forget the look on my husband’s face as he peered over the curtain and saw her. Tears sprung to my eyes and I fell in love with my husband all over again. Then I noticed there was no sound, at all in the room. I didn’t get to see my daughter at that time, I told James to go to her and I laid there listening and praying. Finally I hear a tiny little whimper. (That is a sound I will never forget). James returned with our daughter and showed her to me briefly (she was amazing with wide open eyes, so tiny) and I wondered, is this my baby? (okay so I was a little disconnected) Then the neonatologist came over ( he loomed over me so I remember him as a floating head) and said “Your baby is okay, her blood was flowing the wrong way so we are taking her to the NICU and she looks like a downs baby to me.” ( I will say here that this doctor and I ended up having a great relationship despite our introduction!) I looked at the drug dr and said, “Okay I will take that sedative now.”

I will wrap here…you all know the ending anyway. She spent 11 days in the NICU but that story would have to be a sequel as this one is way too long as it is. To this day I still feel that both my pregnancy and my birth was stolen from me but it is hard to dwell on that when I have a beautiful baby girl that got to make all by ourselves!

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