Daniel's diagnosis story - Part 2

I wrote the following journal entry when I was a little over five weeks pregnant, obviously too early for any sort of screening test. I edited this a little for privacy reasons but otherwise it is exactly as written on that date. Some of what I wrote is not person-first language, but I've preserved it as written to keep it as accurate as possible.

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October 18, 2011

Baby Signs

I've kind of hesitated to write about this because I know a number of people reading this don't believe in God, or if they do, they don't believe God can send you signs. But I feel like I need to get it down, so if it ends up happening, other people will know and I won't feel (too) crazy.

I have strange feeling that God is going to give us a special needs baby at some point. I don't know if it'll be this baby. I just want to document some stuff.

A few weeks before we conceived this baby, Joe and I were talking, and I asked him,

"Do you ever feel like God would trust you with a special needs child?" I'd had a weird feeling about it for a few weeks and I wanted to talk to him about it.

A few days after I got the positive test, I was walking Kirby with Lily in the stroller, and we came across another family (mom, two boys of different ages) who were also walking their dog. One of the boys was obviously special needs. He was so sweet though. He asked me about Kirby and about Lily. This is a walk I have taken dozens of times, with and without Kirby/Lily, and I had never met this family before.

Today when I turned on the radio (I usually listen to either EWTN radio or NPR in the car, I'm not into the music on the radio), Mother Angelica's show was on. They were talking about babies who get aborted because of their special needs. I got chills throughout my body when I heard what she was talking about. The show was actually really good.

I have no idea if God is trying to tell me something or not. I realize to some of you I sound a little...crazy. But like I said, I wanted to get this down. If our baby ends up having a disability of some kind, I want to be able to look back and see that God meant it to be that way, and that He has a plan.

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I shared this journal entry with a few very close friends and promptly forgot all about it. Mostly. I thought about it a little at my ~20 week ultrasound, and again at my 34 week ultrasound. I remember the ultrasound technician telling me all about how beautiful his heart was, and thinking to myself, "Well, at least it isn't Down syndrome." I think in my heart I knew my child would have a disability...I knew comparatively little about Ds at that point, but I did know that it could involve heart defects. I had no idea how common it is to have perfect ultrasounds, even screening ultrasounds (which we didn't have) and still end up with a sweet baby with an extra chromosome.

The day after Daniel was born my doula Jenny (who also happens to be a midwife) visited us in the hospital. I was still having fears about Daniel, and was still being reassured by Joe. When Jenny arrived, Joe still had not arrived back at the hospital from an errand home to let Kirby (our dog) out, so we were alone. Jenny held Daniel and checked him over so gently and tenderly. I remember our conversation going a little like this:

J: "He has a simian line on his hand."

E: "Does that mean anything?"

(long pause)

J: "Sometimes. He has such interesting eyes."

(I think at this point I started to panic a little inside because I was starting to realize what I thought was an OCD-like obsession had been validated in some way.)

J: "Has the pediatrician been in to look at him?"

E: "Yes."

I don't remember how our conversation went after this, but Daniel's unique features didn't come up again.

And the pediatrician had been to look at Daniel. The night before, the same day Daniel had been born, the pediatrician had been in to see him, and hadn't said that anything was amiss.

Immediately after Jenny left I googled "simian line." And as soon as I read what I read, I think I knew. I knew that something was different about Daniel, and I knew it couldn't be one of the more life threatening options, because he was nursing so well and doing well otherwise.

As soon as Joe got back, I shared the info with him. I knew the pediatrician would be in again soon and I asked Joe to bring Daniel's simian line to the pediatrician's attention. I felt like I had to get in the shower. So I did, and the pediatrician arrived while I was in there. Joe peeked his head in and asked me to get out. The pediatrician wanted to talk to us.

When I was getting dressed, I thought to myself,

"I will always remember what I was wearing when they told me my son has Down syndrome."

It was a blue nightgown. And that is exactly what happened.

I could tell you a lot about what happened next.

I could tell you in detail how we cried, and how my husband said so many absolutely wonderful things about our son that for the first time in my life I knew what it was like to be so proud of my husband that I thought I might die on the spot for love of him.

I could talk about telling my mom and stepdad that night about the pediatrician's diagnosis, how hard it was to say the words "Down syndrome" for the first time out loud, and how the first words out of my mouth afterward were, "I am so afraid that people won't see how special he is!" And how they lovingly reassured me.

I could tell you about the woman who walked into my stepdad's office the very next day with her husband, wanting to work on financial planning issues concerning her son with Down syndrome.

I could write about the first time I took Daniel to Mass, noticing the responsorial Psalm was Psalm 139, and feeling a rush of love from God, feeling like He was holding us in the palm of His hand.

I could talk about a million coincidences, "signs" from God, chance meetings, kind strangers, poems and songs out of the blue. I could tell you about the kindness of the pediatrician in the hospital. I could tell you how not ONE single person who loves us ever said the words "I'm sorry."

I could talk about how I've never felt closer to God in my life than I have since Daniel was born.

But I'm not going to elaborate about any of those things. Some of those things would make wonderful stories, but the story of Daniel having Down syndrome isn't really my story to tell.

It is his. And so far I am feeling so privileged to be a part of Daniel's story.

"For everything created by God is good, and nothing is to be rejected when received with thanksgiving."
1 Timothy 4:4

31 for 21, day 9: Variations on a Theme

As I've been taking photos the last few months, a theme in our household really stood out to me and I thought it might make good material for a more "fun" blog entry. Enjoy!

"I set my rainbow in the clouds to serve as as a sign of my covenant between me and the earth."

-Genesis 9:13

31 for 21, day 8: A Lily Day

Today was another day I tried to make fun for Miss Lily. She has been feeling pretty badly lately due to allergies (yes she is medicated) so she was not in the best of moods today, but I tried to ignore her ornery behavior and just go with it.

This morning we took an hour long walk on a trail near our house. Despite it being 70 degrees I had no desire to babywear, so stroller it was.

Lily was indispensable in regard to keeping Daniel from fussing (he hates the stroller/carseat)!

Afterwards we indulged in our favorite fast food guilty pleasure location, followed by some time in the playscape. :-)

We also made a Target run and I took Lily to her make-up ballet class (she missed on Friday due to her fever Thursday night). I tried to get pictures at ballet but they all turned out awful. All in all, it was a good day and I did get a lot of time in for Daniel's therapies as well, especially during ballet class! I was able to multitask by doing therapy stuff with him and watching her dance at the same time. I also managed to make dinner tonight and do a fair amount of house cleaning! Go me!

Till tomorrow!

31 for 21, day 7: A Family Saturday

Not going to write much, but just sharing that we got to see lots of family yesterday. The only regret I have is not taking pics with more people!

Daniel meeting great-grandma and great-grandpa for the first time!!!

Daniel was sleeping. Lily was silly. 

Daniel and I also got to see our cousins Rob and Andrea yesterday, but I forgot to take pics! It was kind of tiring running around so much yesterday but the time with family is priceless. Hope you all get some time with family this weekend!

The Last Mommy/Lily Date- 31 for 21, day 6

Lily/Mommy dates had to go on hold this week. Last Monday we were still in the hospital for half the day, and today half of our family was under the weather. Lily had a fever last night so we didn't go to a playdate this morning as planned, nor did we go to ballet. And daddy wasn't feeling well either and came home after working a half day! We did go for a walk and make a short Target run, but today was pretty boring, all told.

Last Friday we went to Seaworld!!! So, please enjoy some pics of our visit! Hopefully next week we can start over again and have more fun Mommy/Lily dates to share. :-)

Seaworld has Hallowe'en themed everything now.

This is what Lily does now when we ask her to smile. I have mixed feelings about this...haha!

During the sea lion show.

Otter!!!

Sea lion in a Hulk mask!

Catch you later!

Four Months- 31 for 21 day 5

Thank you all for the wonderful comments on Facebook and emails regarding Daniel's birth story yesterday. It means so much to us!

Daniel was four months old yesterday. I feel like time is going so fast and he is getting so big. He thought so too--yesterday he rolled over from back to tummy for the first time ever! I was totally shocked. Wasn't expecting it for quite some time yet! He did it again this morning so I am thinking it probably wasn't a fluke!

 I spent some time today taking pictures of Daniel wearing some of Joe's baby clothes. I am so glad I decided to do that today because he barley fit in the outfits!! If I had waited one more week it would have been a futile endeavor. At his four month appointment yesterday, he weighed 15 lbs 9 ounces and was 25 and 3/4 inches long. If you are planning on buying clothes for him anytime soon, go 9 months or larger! He's also just about ready to go into size 3 diapers.

Daniel got his second DTaP shot yesterday. The rest of the 4 month shots he will get in a few weeks. Unfortunately we found out that he was rejected for the Synagis vaccine (RSV vaccine). He was not premature and his heart defect is not major, so we didn't qualify. As I've told several people, in my mind that means the insurance company is making a bet that he will not end up in the hospital with pneumonia, so that is why they rejected him. If they're willing to bet on Daniel being healthy, that reassures me a bit. We also got a referral to a pediatric ophthalmologist, so hopefully we will find out more about Daniel's eyes soon! 

While we were in the hospital, the pediatrician there upped Daniel's dose of Zantac (reflux medicine) to the maximum dose and we haven't had as much "abnormal movement" (what we thought was seizures) as the pediatrician described it. So the pretty much confirms that what he had was severe reflux. Thank you to everyone who was praying for us over the weekend and those who continue to pray for baby Daniel as he grows and matures. We so appreciate your thoughts and prayers! We certainly felt them over the weekend.

Daniel has been doing so much better at keeping his head up lately, but he is still not super proficient. The technical term for this is "head lag" but we are working with both an OT and PT now, so I am confident he will catch up soon. Other than that he has a little bit of weakness in his shoulders,  but otherwise is still on track for baby milestones. As you can see he is a happy little dude and I have been getting him to laugh really well lately. His laugh sounds more like a manly chuckle than a giggle, it is pretty hilarious!!

Hopefully I will get to write more tomorrow! Love to you all.

Daniel's Birth Story--31 for 21, day 4

As promised, I am sharing Daniel's birth story today! It is kind of an emotional thing to share so we'd appreciate any comments and support. A few things you should know:

• I tried to keep it "audience friendly" but I also don't really leave anything out. So if you are super squeamish this might not be the read for you. If you're used to reading birth stories this is definitely on the milder side.
• Daniel was not diagnosed with Down syndrome the day he was born. So that is not included in this story! I will share part 2 of the story on the 21rst. 
• I realize I'm not doing so great at this blogging every day thing. I'm just letting go and letting it happen if it happens! 

Enjoy!

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Daniel's Birth Story 

I knew the evening of June 9th, 2012 that I would be having my baby boy the next day. The contractions had a certain quality that I can’t really describe. I had thought I was in labor at least twice before--false alarms. But these cramps were different. Deeper. I slept fitfully, all alone in the bed, while Joe slept with a similarly fitfully-sleeping Lily in the next room.

Morning came early on the 10th. It was around 5:00am that I woke for the day and knew that my son would be coming soon. I texted Jenny (my doula) and let her know that today was the day! I woke Joe and Lily up as well. I remember very little about this time. I do remember sucking down one of those squeezable apple sauce snacks and forcing myself to drink some water. I took a shower. I’m sure I also threw some last-minute items into my hospital bag. 

I remember the car ride the best. I remember Lily telling me, “It’s okay to scream, Mommy.” For the record, I wasn’t screaming! Just moaning loudly. My contractions were coming pretty close together…less than four minutes, and were lasting at least a minute. Joe joked about not making it to the hospital on time, but I wasn’t worried. 

If I remember correctly we arrived at the hospital around 6:30am. I waited out a few contractions, hunched over the car in the drop-off area at the entrance to Labor and Delivery. I was not going to go in without giving my sweet daughter a hug and proper goodbye. It was the last time I’d see her as my only child. As I entered the hospital, I remember seeing my sister-in-law Jess (she was there to watch Lily), and saying something like “It hurts!” while rushing past, trying to get to registration as quickly as possible. 

The lady at registration didn’t seem that excited to be there. I tried joking with her- “I don’t know how you do this job…women in labor are so cranky aren’t we?”- but she didn’t even crack a smile. I was directed to the triage area where I was forced to sign some forms in between contractions. I signed that I understood the risks of both vaginal and cesarean delivery, etc etc. It made me smile. What was I going to do--not sign? The baby was going to come no matter what. 

A nurse led me to a curtained area and asked me to put a hospital gown on. A few minutes later, she came back around the curtain and checked me. 7cm! I was pretty surprised. So far, the pain hadn’t been that bad, and I was almost done!

I honestly don’t remember how I got to the delivery room. I assume I was wheeled there on the bed, but I could have walked. I honestly don’t know. The magic of labor-land! I do remember being glad to see Jenny and Joe. My friend Karen arrived at some point too. She had graciously offered to take birth photos.

A hep-lock was inserted into my arm and a fetal monitor strapped to my belly. The nurse had to see the baby’s heart rate do something specific in response to my contractions before I would be allowed to move around. There was only one problem: I really had to pee. Like, bad. I kept telling Jenny that I really had to pee. It was the only thing I could think about. Laying down the way I was forced to while the nurse got heart rates from the baby was making the feeling much worse. I continued to moan through contractions and demand to be allowed to get up to pee. Jenny was wonderful and kept telling me that I was doing a great job. I love her!

Finally the baby did what he was supposed to do, and I was allowed to pee. I asked Joe to come into the bathroom with me. I actually remember praying out loud, “Jesus, please just let me pee!” on the toilet. I am sure if anyone heard me they had a little giggle, but I didn’t care. I did finally pee a little bit. As soon as I peed, the contractions started coming hard and fast. They hurt really bad and I could start to feel myself losing emotional control of the situation. Intellectually I knew that I was very close to delivering my baby,  but I physically could not move. I think I said something like, “I can’t do this anymore!” and Jenny came rushing into the bathroom. Yep, I said the classic thing women say when the baby is almost there! 

Jenny urged me to get back into the hospital bed, but there was just no way. I couldn’t move my legs if my life depended on it. Joe told me later that Jenny said, “Elicia, don’t make me do this!”, but I don’t remember anyone saying anything. All of the sudden, I knew I was pushing! I don’t think I even pushed more than two times, and there he was in Jenny’s hands, screaming his head off. 7:50 am, less than three hours after I woke up that morning. I think that was when the OB, who had been paged to come to the room at least twice before, walked into the room. 

God only knows what he was thinking, but the OB did not look happy. I was instructed to walk back to the bed, while Jenny held my son, still attached to me by his cord. I duck walked to the bed, splashing blood all over the floor. It wasn’t my most graceful moment. Thank you, Karen, for not capturing that forever on film! 

Our son’s cord was quickly cut (by Joe) and he was handed to me. I stared at him. He was beautiful! But something nagged at me. I do remember asking Jenny, “Does his face look normal?” She reassured me, but everything was in such an uproar at the time that I am positive she did not get a good look at him.

The doctor didn’t even introduce himself before asking me to slide down the bed so he could inspect things. He did lots of uncomfortable things which I won’t go into here (not uncommon or unnecessary things, he just did them not very nicely or gently), but my first and only post-birth experience with an obstetrician (I should note he was NOT my regular OB, who happened to be out of town visiting a sick relative when Daniel was born) was pretty horrific.

The doctor was upset that my son’s birth had gone the way it did...that Jenny had ended up catching the baby in the bathroom. Mad at the nurse, mad at me, and mad at Jenny. I think Jenny was even berated by a nurse in the hallway, though I do think she tried to shield me from as much of the drama as possible. She said goodbye quickly and left the hospital to help diffuse the situation. 

After Jenny left our female relatives came into the delivery room to meet the baby. Lily, my mom, my mother-in-law June, and later my sister-in-law Jess all came to meet our precious boy. I didn’t let any men in the delivery room other than Joe! Lily was pretty set on the name Daniel for him towards the end of my pregnancy, so when she met him that day we made it official. Daniel Foster Conroy. Named after both Joe’s and my grandfathers. Karen took some beautiful pictures. I know at some point Karen left because she hadn’t slept well that night (she was also pregnant at the time!) and wanted to get home and rest.

It took a little while to get Daniel latched on, but he finally did and nursed well for quite some time. Eventually he did have to go to the nursery for his bath and to be checked over and observed. Everyone left, I think to have breakfast or to see Daniel in the nursery or something, and I was left alone in the delivery room while they started trying to get me ready to go onto the mother and baby unit upstairs. The head nurse came in and interviewed me about the “incident” (Daniel being caught by non medical personnel), I think just to make sure we wouldn’t sue them. I was fine with it obviously, so the discussion went well. 

Eventually I was transferred upstairs to our room, and we got to see Daniel for a short time. At this point I took several pictures of him to post to Facebook. I remember picking the one where his face looked the least “weird.” It makes me a bit embarrassed to even think back on that now. I love his face. I think that was my first real indication that something might be really different about him, if I had to cull pictures of a cute baby for public consumption. He wasn’t with us long before he was brought back to the nursery for observation because he was unable to maintain his temperature, even skin to skin. 

I remember asking Joe several times that day if he thought Daniel looked different in any way. Joe even asked me, “You don’t think he has Down syndrome or something, do you?” 

I said no. 

If you know me at all, you know I am kind of a hypochondriac and that I have dealt with anxiety issues. I worry about everything health-related. I knew I was starting to obsess about Daniel’s features and I was really trying to remain calm about it. I was worried that nothing was wrong with him, but that I would continue to obsess and that it would turn into yet another thing I obsess about. I don’t think I honestly thought anything was different about Daniel at that point. I thought something was wrong with me.

(end of part 1)

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Enjoy some of the wonderful photos Karen took of Daniel's birthday!! The song in the background is "Psalm 139" by Danielle Rose. I encourage you to make it full screen if you can.

My bones are not hidden from you,

When I was being made in secret,

fashioned in the depths of the earth.

Your eyes saw me unformed;

in your book all are written down;

my days were shaped, before one came to be.

-Psalm 139: 15-16