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.
(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.)
Pru, I laughed and cried at your story. Science has come a long way, and Down's babies can be very high functioning. With the amount of love you and Darling Husband as well as big brothers and the rest of your family are showering little Hulk with, he can't help but thrive. I'm a long time friend of Kathyn, AKA Buttons, and I love following the stories of the Hot Toddies of Washington. Best of luck to you and your wonderful family.
ReplyDeleteThanks for your comment Billie. I haven't even gotten to go meet Baby Hulk yet with all the germs we've got between Miss O and me for the past few days! But this week, I'm going to cook them dinner and meet that cute, sweet, perfect baby!
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