Added Pics Born Aug 2! Down syndrome :/

LilLee11 · August 2015

Warning - this is LONG! Sorry

We have seriously been through the ringer the last 2 weeks - 2 days before having Cameron we got rear ended. Thankfully we were all fine, just need a new bumper. 2 days later we took the 2 bigs to the water park and yep, my water broke (36 and 3 days). Once we got to the hospital the baby came out FAST - I went from a 6-crowning in 90 seconds. ITS A BOY, yay!!

The first hour after his birth was incredible. I loved on him and he felt like he was meant to be in our family. Then my doctor came in to tell us there are some nurses whispering saying he looks Down syndrome. Crushed. Us. We took the news and cried a little, then I started having worse contractions than what I had during labor. Long story short I had retained placenta, and after trying diff methods I needed a uterine artery embolization. Knock on wood recovery is good so far but I prayed this was the end of this craziness.

Next morning a pedi from our group saw Cameron and said "I'm 95% sure he doesn't have DS but his eyes are slightly upturned, other than that his hips are good, no palm markings, great muscle tone...etc there's a small part of me that thinks a chromosome test should be done" I showed the doctor pictures of my other two kids as newbors bc both of them have the same eyes - they're MY eyes. I have almond shaped eyes. Yes, Cameron's go very slightly up but I was borderline offended bc I just think he looks like my other kids. So we decide to do the blood work...

*As a side note I had the NT scan, I'm 32 and my results were 1 in almost 900. I had multiple growth scans bc I had marginal cord insertion and all the appts/ultra sounds were fine.*

Next day that same pedi came in and said "his swelling has gone down which is good....I think he's looking like a *last name* kid"

RELIEF!!!

So I hold onto that piece of info. We go home and I'm on cloud 9 and a total baby high. Watching my family of 5 I would tear up bc of pure happiness.

A couple days later we have C's first appt and our usual pedi checks him over - no heart murmur, good hips...blah blah blah. No mention of DS so I bring it up. My doctor looks so confused. He looks over Cam again and says "no....he looks great. Motor tone is great, no neck fat pad" blah blah. So I ask him to just call w results.

Next day - our house gets broken into while we are at breakfast. FML. I'll spare you the details on this but just say I kept thinking things come in 3's and dear god please don't let my baby be the third. Oh and use your alarms during the day.

Get a call today (Friday) - bad news, baby has DS. I asked if it was the more rare form "mosaic" bc that can go undetected for years. He said no it's not. I am so confused you guys! Cameron looks perfect, nurses awesome, had zero signs except a very very slight upturn in his eyes. I keep staring at him to find something - maybe the bridge of his nose? But he looks like my other babies looked.

I don't even know why I'm writing this - a part of me wants someone to tell me that the results could be wrong but I don't really think that's possible. Do you get a second opinion? I know we wouldn't change anything and he will hopefully be a high functioning child but the unknowns are so overwhelming to us especially given everything else that's happened. I feel like I'm living in a bad dream though. Cameron is our baby and we will love him with all we have. I just seriously can not wrap my brain around this - I pray his heart is ok. We are seeing a cardiologist as soon as we get a referral. I can't help but kick myself for always saying we are so blessed to have 2 healthy children. My husband hesitated w saying let's try for a third bc "it's a lottery and we have 2 healthy children...." He promises me he has zero regrets but I hate feeling like karma is here because I LOVE Cameron, but this is just crazy to me, even his pediatrician said he was surprised.

Sorry this was such a novel. I have no words but so many words which probably doesn't make sense. I just can't comprehend everything that has happened in the last 2 weeks. I'm trying to hold it together for our other 2 but we definitely need prayers. And maybe a miracle? Thanks for reading

SassetteSmurfling · August 2015

I'm so sorry you're going through this. I can't even imagine what you must be feeling.

I really don't have any advice, but I'll be sending positive thoughts your way!

kjandericka · August 2015

We will be praying for you! It's a lot of information to take in, especially when he isn't showing most of the signs of DS. I have no clue if there is any chance that the results could be wrong but I do know that children with DS can live a perfectly normal life. My friend's little girl has DS and they have never treated her any different than their other children. The do not let her "disability" be an excuse for bad behavior and they have always taught her how to do things on her own. She is an amazing little girl. She reads as well as her classmates, she is very independent and she excels in everything she does. They had a really hard time accepting the diagnosis when she was born (like I'm sure all parents of DS kids or other special needs have) but she has been such an unexpected blessing for their family.

Will it be difficult? Probably, at least for a little while, but there are so many great resources and support programs out there.

You got this! Good luck and please keep us updated on your precious little boy!

bpwife&mama · August 2015

Oh my, that's a lot to handle let alone healing from delivery yourself. But I think you hit the nail on the head. He's your baby and you will love him no matter what. I know I would feel the same if I were in your shoes too, but you sound like a wonderful mom and family and you will get through this.

Perfect Sonnet · August 2015

What a whirlwind. I am sorry you have to deal with all of that. Good luck!

jlsweets · August 2015

So sorry you have been through so much these past couple weeks. I couldn't imagine the stress and also trying to hold it together for your other children. I'll keep you all in my thoughts and prayers.

tarheelgirl8 · August 2015

I'm so sorry that all of this is happening to you. Any one of those things alone would create a lot of stress, and I can't even imagine what it would be like for all of it at once. I am praying for you and your family.

I don't know if the tests could be wrong or not. What I do know from your post is that you are an amazing mom who loves all her children very much. Regardless of whether or not Cameron has DS, he is incredibly blessed to have you as his mom!

The only advice I would offer is that if you're feeling stressed and overwhelmed (which anyone in your position would), it might be a good idea for you or you and your DH to go talk to a professional--a counselor, or religious leader for example. It might help you work through all of the different emotions I'm sure you're feeling right now. It's really important that you take time to care for yourself and your emotional health right now too. I'll be thinking about you.

emmacake08 · August 2015

Sorry you've been through so much, I can't even imagine. I remember on my last birth board one of the moms found out her LO had DS and reached out. A mom with an older child with DS wrote something that struck a chord. She said that it's like going on a trip to Spain, and ending up in France. It isn't what you expected, but once you're there it's wonderful and different and great too. You were meant to have your LO and he was meant to have you be his mom. He will be adored and thrive no matter what because he has his whole family. I see the fact that he has 2 older siblings as such a blessing that he'll grow up with them and they'll learn from him and vice versa. Keep on adoring that sweet baby.
I don't ever think it's a bad idea to get a second opinion, especially from someone who is an expert at this. Good luck and I'm sure you'll do amazing!

jesselayne8 · August 2015

Huge hugs(()). Hope you get good news from cardiology! You will be amazing as his mother.

Kwest1007 · August 2015

@kjandericka .. I think you have great advice! DS babies are all different and as you mentioned, some excel beyond what's expected! I would say it seems very positive that he's doing so well and doesn't have a lot of the classic signs or early complications!! I would def make sure to follow up with all the specialists recommended just in case. He sounds like a beautiful little boy and sounds like you have a beautiful and loving family! My thoughts are with you all!

drummondst · August 2015

We'll be with you every step of the way mama xo

laylababe3 · August 2015

Wow, I'm so so sorry you've had such a rough few weeks! I think it's a good idea to get a second opinion, if nothing but for peace of mind. I know that no matter what the outcome, Cameron has an amazing mom and family as a support system! Thoughts and prayers that Cameron continues to be a healthy little squishy and everything goes well at the cardiologist appointment.

cseley321 · August 2015

Thoughts and prayers for you. I know this must be hard but I'd definitely take him to a specialist for a second opinion as well as for guidance. You sound like a wonderful mother and you will be amazing with him regardless of the diagnosis.

toccoaparker · August 2015

I'm sorry I don't have any advice, I just want to let you know my heart goes out to you and I'm am so sorry for this truly awful week you've had & all you are going through. I will keep you in my t&p!!

taylorharber1108 · August 2015

Thinkin and praying for your family and good news with the cardiologist!

kettlekitten · August 2015

Oh wow, that's too much to all happen at once!! Sorry to hear you've been through all this in a short space of time - one of those things would have been enough to make me freak out!

I don't see the harm in asking for a second opinion? It's possibly going to determine how you manage your child's future so you want to be certain as to what you're dealing with. Mistakes can be made with medical tests. It sounds like you are a devoted mother and little Cameron couldn't have been born into a better family. I would definitely follow a PPs advice and seek out counselling of some sort to help you work through what you've been told (along with everything else).

Wishing you all the best, please keep us updated!

bhargrave88 · August 2015

I wish I had advice or words of comfort.. Something.

I don't.

I'm so sorry, hugs mama! You are already doing exactly as you should do. You love him, you are persuing your gut instincts now, rather than running, and you are strong. It's a lot to take in, but you seem to be doing everything as I would do.

My first girl has autism. It's so hard to accept at first, but luckily my husband refused to let me wallow and we got her EI, and she is now finally talking just a little bit

it's hard not to wallow and wonder "if I did this differently would they be normal?" At first, but you already realized what took me a few weeks to realize : that we love them either way!

I'm so worried my second will have autism or something else wrong as well.. But there's nothing we can really do about that. Hang in there mama; we have you when you need support!

MissusTexas · August 2015

Oh my, that is too much for someone to go through in such a short time! I'm so sorry!

I don't have any advice but I am a firm believer that God chose you to be Cameron's parents for a reason, nothing to do with karma. Cameron just needs someone to love and protect him, and you are an old pro at being that someone for your other kids so the requirements here are the same... You will be great! Big hugs to you!

Saratiff · August 2015

So sorry you are going through this! I truly believe all things happen for a reason. I have the honor of having the most beautiful Down syndrome child in my life who has really changed how I see the world. I pray for you and your family as you find out more information and I recommended reading the book called Just Kate by Noelle Alix. It's fantastic.

Boslove · August 2015

As many of the other moms have stated, sorry your going through ALL of this. You are strong and seem to have a wonderful support system. I would encourage a second opinion just to make sure, seeing that none of the other indicators are there. Good Luck with everything

hitcj4687 · August 2015

You know, having a child with a disability is certainly not "bad karma". They are so beautiful and so unique. My sister has one of the rarest disabilities ever, called Cornelia de Lange syndrome. I wouldn't think of swapping her for a "normal child" in a heart beat. It's okay to be scared, but don't be heart broken because your child has downs. Having Down syndrome does not mean he will live an unhappy life and not be able to do the same things as other kids. He can play baseball. He can go to prom. He can get married for gods sake. I am not trying to be mean, but this is what I do for a living. I take care of people with disabilities and when you do what I do, you see them in this brand new light. You don't feel the urge to stare at them or feel bad for them anymore. They're happy with how they are because it's WHO they are. And you will see, Down syndrome is so common and not nearly the worst thing that could happen. Perhaps it will teach you to love and protect in a new way and will show you a world of surprises when Cameron says his first words when the doctors told you he would never talk (not saying he won't talk, but they told us my sister Emma would never communicate and now she talks like crazy and does so well.) be prepared for more work, but he is your son. And he is here. And he is alive. And healthy! Be thankful you have him. Focus on that and not the fact that he's a little different

malonc2 · August 2015

Sending thoughts and prayers your way. That is a lot to go through all at once. Try to enjoy your beautiful family right now

CarelessDiva89 · August 2015

I'm sure this a lot to digest but you have a beautiful baby no matter what. I truly believe all things happen for a reason & he must be one lucky boy to have you as a mama! T&ps that you get all the answers and peace of mind that you need on this new journey.

acgonzalez22 · August 2015

That is an emotional rollercoaster that I am very sorry you are on. Take one day at a time. Prayers to you! He sounds perfect.

raelynch87 · August 2015

I don't have any advice just wanted to let you know that I'm sorry this is happening. You're obviously a great mom and all your children are so lucky to have you.

deviduke412 · August 2015

I can't offer any advice, but I can offer my prayers to you and your family as you wait for answers and guidance.

CaliforniaDream87 · August 2015

So many prayers for you and your family!!! Please please get a second opinion. Seems so strange that there is so much confusion here.

((Hugs)).

4foxsake · August 2015

I'm sorry that you are dealing with so much right now. I think you should ask for a second test given everything you've said. Wishing the best for you and your sweet family.

Miz_Liz · August 2015

I completely agree with others who have said to follow up with the specialist and get a 2nd opinion. My heart aches for you and your family that you are going through this stress right now and that you don't have all of the answers yet. I can't even imagine how difficult that must be for you but I pray you have some answers soon so that you can start to be able to wrap your heads around everything. I am also sorry you have had so much other BS happen to you in what should be one of the happiest times of your life (like the home break in). No one deserves to deal with that and I am sure it feels like you're being tested! Keep that positive outlook though, it is very clear from your post that your baby is EXTREMELY lucky to have been born into such an amazing family regardless of the outcome. It is very clear that you are loving parents who will give your child the amazing life that he deserves no matter what. I am sending thoughts and prayers and creepy internet hugs your way - keep us posted!

breezymeema7 · August 2015

I understand the complete surprise and heartbreak of receiving news about your child. You go through a blissful pregnancy, you have a beautiful baby, and then bam, your world changes in an instant. It's scary. My heart hurts for you right now. I do, however, believe with all my heart that God has a very special will and purpose for you, Cameron, and your family. Please know that you will all be in my prayers and that we (Aug 15) as a community are here to support you however you need.

SashaDenn25 · August 2015

Hey momma..i dont have much advice, but hugs for you and I will pray for baby Cameron, he will be so special no matter what and is so lucky to have such a concerned mother. Keep updates on cardiologist and possibly second opinions!! Stay strong mom, he needs you to fight for him.

Kimk1616 · August 2015

I think I would have crumbled already with any one of these things happening, but all of them at the same time? You are a strong woman and wonderful mother, that is certain. I have no advice for you but I will be thinking of you, your family and that sweet little boy. I hope things start looking up for you very soon and you get the answers you need.

Meanwhile, I'm not going to complain about not sleeping for the last 4 weeks, that's nothing compared to what you're going through.

sushilove15 · August 2015

I just want you to know that you and Cameron are in my thoughts and prayers!

hclzmm14 · August 2015

I just wanted to say I am so sorry for all that you are going through. Your kids are so lucky to have a mom as strong and loving as you are! You will get through this and I know you and your family will thrive. I will be thinking about you, and I hope you keep us updated and always feel like you can get support here.

carleym93 · August 2015

My goodness, you are one tough mama. So very sorry you are going through all of this. That is a lot to ve dealing with at once. I will be praying for peace and clarity for you and your family. Cameron is so blessed to have such a wonderful family. & if you're willing to share, we would love to see cute squishy newborn photos of your sweet baby boy!

deleted22152218 · August 2015

Can't imagine the stress you're going through on top of the postpartum hormone flip flop you must already be feeling. Hopefully you get the answers you are looking for. Keep us updated! You wouldn't have been given this challenge if you weren't cut out for it. You are in my thoughts!

LilLee11 · August 2015

You have no idea how much it means to read all of your thoughts, advice, opinions, and prayers. Lord knows we need prayers! I cried reading each comment and even though my tears are a mixture of sad and confused tears I also have ones that make me feel comforted knowing we have so many people (including you all!) praying. We've only told our parents. I honestly don't know how to tell friends and other family members. I don't want them to look at Cameron and not see the beautiful little 2 week old that we see. I don't want pity from them or "I don't know how you do it" comments bc I don't deserve to be put on a pedestal like that. There are really no words right now but I know the ones we hear will be said with good intentions. I don't even know what to say right now!

Anyways, please know that I appreciate you all!!! And I truly mean that. From helping me figure out what to name this little guy to helping me through this whirlwind of emotion, I appreciate each and every one of you.

Here are some pics
1. Our oldest meeting Cameron
2. Day we got home
3. After bath time

4. And a random

meg95995 · August 2015

Congratulations, first and foremost on your beautiful baby boy!

My sweet nephew has DS and is amazing. Btw, the story is called Welcome to Holland. I highly recommend getting hooked up with a support group of Mommas and joining a buddy walk. Your son is gorgeous!

MouseMama817 · August 2015

What a beautiful family!! I also wanted to add my thoughts and prayers for you guys. I can't imagine dealing with all the extra stresses (home break in, car accident) that you're going through on top of being so newly postpartum, on top of what's going on with little Cameron. You are definitely a tough woman for sure! I hope things get clearer and you have some explanations soon so you can begin to move forward.

laylababe3 · August 2015

Adorable Pics!!! Love the shirts the kids are wearing..

lethanne · August 2015

Your pictures are beautiful! Cameron is adorable and so is your family! Big hugs and my thoughts and prayers are with you. Im sure this is all a tremendous amount of information to take in. You will get through this and be an even stronger person and mother for it. He will bring so much joy and happiness into your lives and I think you are an incredible mother, so be kind to yourself!

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