Baby Hulk ~ Awaiting the Doom and Being Delusionalal

Last Saturday, 12/22 Baby Hulk rolled over, tummy to back. I was in shock. I had to look it up and am still shocked because all I found said 2-3 months for rolling over from tummy to back! He just turned 1 month old on Thursday! Where is the time going!?

 This tiny boy is amazing me all over the place... and that terrifies me. The more good that happens terrifies me for the bad that I feel just has to happen. I am just that kind of person, I am a worrier. It's not just in this situation. I am also terrified a loved one will die. I have never lost ANYONE! My Dad's parents have both passed but they were so old I was more than prepared for it so it wasn't sad. I always just feel like it is only a matter of time before it happens to me. That's how I feel about all of Baby Hulk's accomplishments. It is only a matter of time before one of these tests come back telling me something is wrong. It is only a matter of time before he stops developing any further. So we prove a bunch of people wrong by getting him to breastfeed... what's going to happen? He rolls over earlier than most babies... where is the bad? I know it has to be coming! I can't just enjoy the amazing strides he is making. Every time he impresses me with something new there is that little voice in the back of my head wondering where the inevitable bad will come in.  I hope I get over it because he will have to be tested for things for the rest of his life. I can't go in to every appointment thinking DOOM!!!! Maybe it will become normal... like any other eye exam... bad example.. I am so close to legally blind I am waiting for the doom there as well... Aah! I don't know! I hope I get over my feelings of impending doom.

Another problem with this is: will I accept it if and when it does happen? I am a super stubborn person and in most ways I think that is wonderful. If I weren't this way I would probably still be pumping... or worse I was so exhausted by it after just a week I could totally be feeding Baby Hulk bottles of formula by now. My stubbornness could also hurt me though. I am so stubborn I am not giving up on the chance that Baby Hulk could live a perfectly normal life and never have any kind of problem at all. Like in a seriously delusional kind of way. In my mind he could just look a little different. He will be shorter... but so what! Darling Husband is only 5'6" and I'm 5'2"! He was doomed to be short anyways! And with the advances people are making in medicine in case anything did come up maybe soon they will be able to stop any problems before they even happen! And as for how he does learning wise... honestly, I'm not that smart myself... Well I am but not in a way people can see. If you spoke with me in person I can hardly even form a proper sentence and in middle school I tested learning disabled in math and reading! Although I thought it was bull then and I probably was just too lazy to take whatever test they gave me seriously, I have always been this stubborn I probably saw no benefits in the test and decided making words out of the A B C D multiple choice scantron sheet was more entertaining. Maybe he will just be like me. Smart on the inside, maybe he will make people feel what he is feeling and cry with his writing.  Honestly the only thing I can't come up with a solution for is the fact that most males with down syndrome are sterile. I worry about that. Will he be sad that he can't have children of his own? Would he want children of his own? But it is silly to even be thinking of that!!! It is silly of me to be this delusional in the first place! But I do! I get so crazy with my it could happens. Like the line. Remember when he was born and my midwife showed me the line on his hands? Well the line on my right hand is broken, but the line on my left hand goes all the way across like Baby Hulk's. I keep wondering if it could mean something. When I showed his pediatrician, I can't get the look on her face out of my head. She seemed totally shocked. So then here I am imagining I am some sort of missing piece to the puzzle. Wanting them to do genetic testing on me. Maybe I could DO something! I'm a nutter! A stubborn nutter! It is what I do. I don't let people tell me it can't happen. You don't know that! I like facts and you can't tell me it is a fact that anything bad will happen! I like the FACT that ANYTHING COULD HAPPEN! And the anything I like to think of is the best possible outcome.

How we're doing ~ Baby Hulk

I hadn't expected my post announcing Baby Hulk to get so much attention. Darling Husband has been asking when I am doing my book signing and Stitches has told me not to forget her when I become famous. Darling Husband shared it to his car forums to try and smooth things out with some customers upset with him for being away. I made grown men cry! I think I am most excited by one of those people, who was inspired to become more aware on Down Syndrome and he wants to help! Who knew raising awareness for a cause could be so easy? I hope things get better for Darling Husband at work so his annual car show and meet can continue, it is always a fundraiser and this year we actually have something we can really feel good about. I mean yes he felt good raising money for the Humane Society but this is just so different.

In all honesty I think I made the post more for me. If you read my posts before you know, well despite the fact that my original posts were The Lovely Lie, it starts with being honest, because you have to be honest at least with yourself and by making my honesty public it made it impossible to go back on. Everyone knows the truth now there is no way I can deny it to myself anymore. I think I've gone through all the stages of grief, except anger... I don't think I've been angry... you will have to ask Darling Husband. I hadn't even cried since my last post. It was a very therapeutic post for me. After I hit publish it was like a huge weight had been lifted. I think I just needed to get it out. I can even read it now without crying! I was basically sobbing every time I went over it while writing it and now it's nothing.

So you caught that did you? I hadn't cried since I made my post...
Well I hadn't until last Thursday night. Lumpy and Mr. Grey had a Christmas program for their preschool. We met outside the classroom at 6:10pm to drop the kids off. As we stood at the door waiting for them to let our kids in, other parents and children were arriving. And then another family arrived. Their youngest, the cutest little girl, she ran right up to the door passing everyone else waiting in a line down the hallway, looking adorable in her fancy shoes and tights and pretty red Christmas dress, blonde hair a little bit of a bouncing curl at the ends and the eyes, the slightly smaller, angled, almond shaped eyes. Those eyes that I knew. And she was so cute and happy and excited to be there! I looked down at my sweet baby in my arms and then I cried. In the hall with all those other parents. And of course Dear Husband saw her and immediately looked to me, he knows me too well and unfortunately he had to go be his darling self and sweep me up in a hug in front of everyone, just in case they hadn't noticed I was crying to begin with, I'm sure they did then! Quick! Get a hold of yourself!

It was then I realised I did want to talk to someone. I kept looking at the little girl's mom, desperately wanting to talk to her, wondering how you start a conversation like that. "Why hello there, I notice your daughter is rocking an extra chromosome! What a coincidence! My son has 21 as well!"? How do you even do that!? Well I don't know if Baby Hulk is just that cute or if one of the boys' teachers put her up to it but after the boys' performance she came over and spoke to me. All night people had been coming up to me asking about my tiny baby so I had gotten used to it although I must say when she came up to me I was soooo excited! She told me seeing my tiny baby made her want another. Her tiny baby is 3 already, "you may have seen her running around here somewhere, she is the one... we call it her 'special sparkle' she has Down Syndrome." She seemed surprised when I told her my tiny baby also has that "special sparkle" she looked at him like she was trying to see it. It was nice to have someone ask all the right questions without having to explain anything. One of the first things she said was "How is his heart?" Her daughter, Tsunami, (I didn't even have to give her that name, it was already her nickname) had to have open heart surgery when she was, I believe she said, 4 months old.   I can't imagine that! That was the first thing she asked, "how is his heart?" But Baby Hulk's heart is fine. We will have to keep checking but so far, it is fine. Tsunami is now just like any other 3 year old! She got her nickname the same way Baby Hulk got his, she is just a little girl, she climbs on tables and swings from chandeliers. If I hadn't been late registering Lumpy for preschool he would have been in the morning class with her. She goes to preschool just like he does, same age same class just a normal little girl. It felt really good to talk to someone who was just a little ahead of me knowing what I am going through.

One of Mommy Tsunami's questions for me as if I was pumping. Well I was then but I am happy to say a week later I am not! Baby Hulk is nursing all on his own now! I'm still watching him like a hawk and counting dirty diapers like a mad woman (I have an app for it and everything!) but he is looking good! I was almost in denial again because he is just such a baby to me. He sleeps more than my other boys did but he is just a sweet baby boy to me! Then I saw a Down Syndrome boy at Target the other day and started to worry again. I'm not sure how old he was, he had a little facial hair, he could of been anywhere from 15 to early 20s but the way he was hunched over in the Hot Wheels aisle totally absorbed in the toys, it reminded me of how Mr. Grey would behave. To be fair I think that behavior could go all the way up to like 12 but it still made me nervous. I find myself making all kinds of excuses though. His mom called to him to come on and she spoke to him as though he were a small child and the whole family reeked of cigarettes. That was when I decided maybe with a different family this boy could have done better. I mean, studies have shown that children exposed to second hand smoke get sick more often, more asthma and coughing... people with Down are already more at risk for respiratory infections! Cigarettes are also known to cause cognitive problems in children! People shouldn't smoke around children anyways! Even before Baby Hulk I was extremely bothered by 3rd hand smoke. I didn't care if you weren't smoking at that moment, if you smelled like cigarettes at all I didn't want you touching my babies! The nicotine is still there. I just can't fathom smoking myself and having my Down baby! Why make things harder for him? So then in my moment of denying that Baby Hulk could ever be like that, I continue on in this fantasy world, I bet he was formula fed as a baby... they probably didn't keep up with his physical therapy... did they take all the help they were offered and do everything they could for him? All because they smelled like cigarettes and he wasn't where I wanted my son to be developmentally at that age. I want the best for Baby Hulk just as I want it for Mr. Grey and Lumpy.

Stitches has been worried I am going to go off and make new friends with the other parents of Down Syndrome children and leave my old friends behind. I was fighting the thought of becoming one of those parents in a support group but after talking to Mommy Tsunami I think maybe I do need it... but I still need my friends! I need my nerdy friends who play dress up and have brightly coloured hair and watch Korean dramas and Doctor Who and Lady Porn! We wrote an embarrassingly trashy historical romance together! THESE are my friends! Just because my son has DS it doesn't mean that my entire life will become DS. As I explained to Stitches. They would be my occupational friends. She has her friends she has made while working at the farmers' market with her London Peach business. They are not her life. Down Syndrome will not become my life either, it is just be a part of it.

 If you are interested in learning more about Down Syndrome and what you can do check out the National Down Syndrome Society.

Welcoming Baby Hulk and a Whole Different Kind of Surprise

How do you start a birth story? Do I just start from the beginning? The 3am I woke up went to the bathroom, got back in bed and realised I was leaking amniotic fluid? Do I start with a 'Once upon a time'? I hadn't planned on writing something like this. I figured a Pregnancy in One Dress post on my regular Monday. A picture of me in my dress (with shapewear of course) holding the new baby but things changed. In a big way. Having a new baby is one of those things that changes your life forever but this new life is just a little tiny cute ball of different.

I'm one of those ridiculous people who refuse the drugs. No epidurals for this girl. No thank you! Sure labour hurts like crap but the idea of a giant needle in my spine scares me more. Besides I was doing pretty good. I made it to 7cm totally quiet, not a peep out of me. Well if you forget the part at 5cm when I decided to get things moving by walking around. I stood up and immediately had to make a speedy waddle to the bathroom... I made it to the trash can outside the bathroom and promptly barfed. Aside from that incident I smiled, talked updated Facebook.

When I had a contraction I just sat on my ball put my hands on my head and basically imagined myself melting... don't know why but it helps, I guess because the alternative is being tense which worsens the pain. Darling Husband rubbed my back, everything was fine.

Then the 7cm... I wanted them to check me. I was getting tired of how irregular my contractions were and I wanted to know how much longer I had. 7cm... but I was ready!!! I wanted to stop hurting. I wanted my baby already! Would it be a Hulk or a She Hulk!? I was just ready to be done! 7cm and I swear that nurse tried to kill me when she checked me! All of a sudden the contractions were unbearable! Still not screaming or yelling but there was quite a bit of moaning coming from me and I needed to push! Nope! They wouldn't let me! Finally after I begged and begged my midwife decided to check and as she got down there she said "Oh! I think I see hair!" So then it was on! 3 pushes later and baby was out!

Baby Hulk had a penis! Boy number 3 for me! Boy number 3 looked different... Not in the way Lumpy looked different from Mr Grey. He just looked different...

His eyes, I knew those eyes but no one else said anything so I just decided, he will look more like his brothers once he stops being all puffy and new. We cuddled for a while. He nursed for a couple of minutes and then the pediatric nurse came in and I gave him up so he could be weighed measured and bathed. At 37 weeks Baby Hulk weighed 6lbs, 5.9oz. 6oz less than his big full term brother, Mr Grey, and almost a whole lb more than his big brother, Lumpy, also born at 37 weeks! What a big boy! Only... he is a whole inch shorter than Lumpy at 18" long.

 Darling Husband mentioned then that Lumpy had low blood sugar problems when he was born so they decided to check Baby Hulk's. It was sooooo low, his body temp was also too low so they decided to skip the bath and we would go to the special care nursery.

 And then my midwife said something that made my heart drop. She pointed out his eyes. The same eyes, that I noticed don't look like his brothers. Then she pointed out lines on his hands. She told us these features were features they see in babies with Down's syndrome.

 We were taken to the special care nursery and my sweet new tiny baby was put in a bed to warm him and hooked up to an IV to get his blood sugar up. They wanted to try and give him some formula but his breathing was fast and he had low muscle tone, they were worried he would choke. I couldn't believe they were trying to tell me he had low muscle tone! We don't call him Baby Hulk for no reason! That kid beat the crap out of me the whole pregnancy! Things were a bit of a blur then. I think I was so floored by the possibility my baby might have Down's syndrome that I just can't really remember what else went on that night. They drew blood to send to Seattle for testing. The Doctor said it would be 24-48 hours. I sat in an uncomfortable chair in horrible pain from having just had that baby in a daze. I couldn't believe this was even happening! I'm 27! We don't have any family history! Where did this even come from!? I thought of the Down's Syndrome kids I always see out in groups in places. I didn't want that. I don't want my child to be like that, I want him to be with everyone else, not like that... I don't want him to be in the group of old people with Down's Syndrome who hang out in the food court at Target. I kept trying to tell myself not to think about that. Those things are years from now. Right now I have a brand new baby and he might not even have it... But I knew he did. I saw it right away and just kept hoping it was his puffy newborn face. I really knew nothing about Down's Syndrome. They look different, they have tiny eyes and flat faces and a big tongue. They don't learn at the same speed as everyone else. That was all I knew... but then they wanted to check my baby's heart... Why? Well that was the first I learned about health risks.  I was basically in shock. I didn't cry, I didn't react. I nodded when people talked to me but I wasn't hearing anything being said. I remember being mad at a nurse because she kept talking to us about formula and I didn't care! I just wanted them to make him better and for the puffiness to go away and prove everyone wrong, but I knew. I really don't remember much more about that first day. I talked to my sister and she called Momma Pru who showed up at some time. I finally had to go back to my room. I was lightheaded from the pain of sitting up. I don't remember if she had seen Baby Hulk yet or not. I just remember when I finally cried she was there. She climbed into my tiny hospital bed with me, she and rubbed my back until I fell asleep, I guess I only slept for about 5 minutes but I felt better when I woke up. We went back to the nursery to Darling Husband and Baby Hulk. While I was gone they drew blood to test him for Down's and did an ultrasound of his heart which thankfully was perfectly normal. I finally got to hold him again but not for long. Because of his poor muscle tone he couldn't hold his head up right to keep his airways open. He couldn't breathe.

 The doctor told us 24 hours for the results of the blood work to come back. We chose his name but I didn't want to share it with anyone. It was a new name, a new baby and I didn't know him. I couldn't hold him and get to know him. I felt like all I had was his name. I wanted to at least get to know his name. It was all I had and it was mine. Some tiny piece of this I had control over.

That night I sent Darling Husband home to stay with the boys. I wanted to try to keep things as normal as possible for them. Momma Pru stayed with me. I fell right to sleep when I got into bed. About 30 minutes later I woke up and felt so entirely alone. It was then that I realised I had been cuddling my giant belly every night. This night my belly wasn't there for me to cuddle. I should have my sweet perfect baby in that bed with me to cuddle. I was alone. No baby bump and no baby. I was sobbing so hard I woke up Momma Pru. I didn't care that he probably had Down's. I just wanted my baby. I needed my baby. This wasn't supposed to be happening like this!

The next morning as soon as I saw him the tears started flowing. He was in a room of his own, in a box. This clear box. A little incubator thing. He was all tiny and sleeping in his box, breathing tube on his face, an IV in his tiny hand.

 The doctor in the SCN that day came in and asked if anyone had talked to me about how long they expected him to have to stay. "A while" she said... What kind of answer is a while? I would understand if I had asked her but she asked me! He shouldn't be in here. I wanted to just put him back inside me where he was safe. He can kick me in the ribs forever, I just wanted him to be safe and healthy and there for me to hold.

The next few days all oozed together. I think it was Sunday that I was discharged to the SCN also the morning I woke up with a sore throat. I was so afraid I wouldn't get to see Baby Hulk again but after Darling Husband talked to them I was allowed in with a mask. They put him in a special room so we could room in with him. They were decorated for Christmas and one of the decorations right outside our door was a sign that just happened to point to our room that said "Reindeer Barn." Darling Husband pointed it out and our favorite nurse got a real kick out of that. She forever referred to our room as the reindeer barn after that and laughed every time she said it. There were 2 nurses we just loved. One of them was who you went to if he wouldn't eat. The other nurses would just give up but she would not take no for an answer. She also encouraged me to try breastfeeding. She was the only one. Every time I brought it up with anyone else, tried to ask them what I could do to get him off the bottle and onto me they would just tell me not to worry about that. "We just need to worry about getting him to put on weight right now."

She encouraged me to nurse for 5-10 minutes before switching to the bottle.  The reindeer barn nurse was just nice. She talked to us about things other than sick babies. She was a welcome distraction from what was going on and she turned off the monitors when they were acting up so we didn't develop PTSD from all the beeping.

We finally got the results from his chromosomal blood test. The pediatric doctor in the SCN came in and suddenly I was hoping so hard she would tell us he didn't have it. All the time leading up to this I had people telling me he didn't look like he had Down's to them.

Then I would find myself looking in the mirror thinking he just looked like me. I have small eyes, the line on my left hand goes all the way across, my pinky is slightly curved. There are lots of people on Momma Pru's side of the family who were born with low muscle tone... I had gone from knowing the second I looked into his eyes, before anyone said a word, that he had it and suddenly I was trying so hard to make it not true. The doctor told us they looked at 4 different cells and each one had an extra chromosome. He had tested positive for Trisomy 21, he had Down's Syndrome. Here I was thinking I was so prepared for this. I loved him. No matter what she told me nothing would change the way I felt. I still loved him but the way I felt did change. Now I felt nothing. She kept talking and I felt nothing. I wasn't even there. I couldn't even see clearly it was like the room lost saturation and clarity and I just sat in a daze.

I stayed with him that night. Darling Husband went home to stay with the boys again. I hardly got any sleep. He ate every 3 hours. I woke up. I fed him, I pumped more milk I cleaned the bottles and pump stuff and then slept for about an hour and a half before it was time to do it all again. The next night I made Darling Husband stay with him and I went home with the boys. That night Baby Hulk had his first carseat test. He failed it but I was just happy they were thinking he could go home so soon. That it wasn't "a while." I wanted to take him home, be with my family, sleep in my own bed. I stayed the next night they did anther carseat test and he passed. The next morning they told me if he ate 50ml for his next 2 feedings he could come home.

Darling Husband came back to the hospital and we packed up. A doctor came in and went over discharge with us and we packed up our new baby and drove home. I was terrified the whole way. Thinking his lips were turning blue worried he couldn't hold his head up enough in his seat to breathe. This was it. No more monitors to tell me if something was wrong. It was all up to me and I was terrified. It shouldn't be like this. He should just be a baby coming home from the hospital, brand new and exciting. I had a new baby home, he has two big brothers who love him, they will never treat him like he is different, he will just be their brother.

As the evening went on I started to lose myself again. Like when the pediatrician confirmed his Down's. I started feeling even more overwhelmed. I thought about how I had jokingly told friends I was just going to have to breastfeed until he was in his teens to keep him healthy. I thought about how just pumping milk for 6 months was going to be hard and I took a bath and cried. That night I could hardly even get my hour and a half of sleep between feedings. It would get too quiet and I would worry he had stopped breathing. I kept waking up and putting my hand on his chest, feeling his face to see if it was still warm and I was so scared it wouldn't be.

Yesterday he had his first doctor's appointment. The nurse entering in all his info asked if I was feeling anxious or depressed. I laughed at her and said, "Well yes! He has Down's syndrome. We had no idea." I knew Darling Husband was worried about me and wanted me to mention it. Why deny it when I'm laying it all out on here for anyone to read. The pediatrician came in. We talked to her about breastfeeding and she gave me ideas of what I could do. Finally someone who would help. I felt good. Then we got home. My older sister was there. I was happy to see her but then it was suddenly that time again. Around dinner time like the night before and suddenly I was feeling overwhelmed again. No one but Darling Husband knew this even happened. But my sister was there and I desperately wanted to take a bath and cry again.

I have a great support system of friends and family. Momma Pru stayed with the boys for me during this. I think Stitches has basically felt everything I feel along with me, and Buttons even though she is sick has wanted to help so bad. She brought my Mom and the boys dinner one night since she was too sick to visit me in the hospital. My best friend since 5th grade has been virtually holding my hand all the way from NC through this. She is a NICU nurse herself and has her own sick babies to worry about but she still couldn't stop checking her phone all weekend at work worrying about me. I wish she was here. I am in a group on Facebook of women who were all expecting and due in December. They were the first people I told and they have comforted me a lot through this. 

Today Baby Hulk is a week old.  I am still struggling with coming to terms with what my life is going to become. I have appointments to make, with genetic counselors and eye doctors and physical therapists, a sonogram to schedule to check him for hip dysplasia. I have to register him... like a pet... or a car... apparently you do that when your child has an extra chromosome. I know everything will be okay but this week, during the day I am loving my beautiful new baby boy who is perfect in every way, but at night I am still mourning the life I thought I would have.

 
 (Afterthought: I usually go through blogs and fix things randomly, as I see my mistakes but my incorrect Down's Syndromes I am leaving on purpose since this whole thing has been a learning process.)