NOT 50 Shades of Grey....

Day 5 of the 31 for 21 Challenge.....

When James and I conceived Brinley, it was total excitement. Ok, I just re-read that...you may think that the moment was total excitement but I was referring to tinkling on the stick, that was total excitement. The conceiving part was decent. ;)
Anyways, it was a long and rough pregnancy, I was put on bed rest, we had to live with my parents for six weeks and home care visited every other day. There were many trips to the hospital and morning sickness, well day sickness for almost the entire pregnancy. When we were induced at 37 weeks, we decided that we probably wouldn't have another baby. It was too scary being pregnant with Brinley and to be honest, pregnancy isn't fun. Pregnancy does something to me mentally and psychologically. I ended up in the hospital one night because I was having a panic attack that I just couldn't get under control. I don't freak out. I don't cry. I don't go all crazy. I don't want to die. I just feel hopeless and helpless and my mind is sad. I think I get so overwhelmed at the unknown. I am a planner and I make decisions and control my decisions and I'm in charge of my life. Being pregnant, you lose the control. You can't control what is happening to your body. You can't control whether or not you will have a healthy baby. You can't control the outcome. You can't control anything and I think this sends me into a panic.

One crazy night in December, I guess we were feeling randy and spicy.....I guess. We were careless, or maybe carefree or just not thinking or using good judgement. I'm not too sure. We couldn't blame it on alcohol because I know we were sober. I won't get into every detail as this is not an excerpt from 50 Shades of Grey but we did it! No whips, no chains, no red room, no kinky lingerie, no music, no candles, no back massage, no sweet talking....man, I think it might be time to spice things up a bit. :)
Anyways, after the joyous minute of loving, I was calculating in my head when I would be ovulating, just to make sure that we wouldn't be having a baby in nine months. Hmmm.....
I said to James that I think I was on day 17 and that would be the start of ovulation. He said that we would be fine and not to worry. I think he was in denial.
Towards the end of December, I was crampy and actually felt the implantation stage when it was happening one night. I thought I was just having cramps.
The next day, I took the test and it was positive.
I peed on the stick and immediately I saw two lines.
I walked into the kitchen and said "HOLY SHIT!"
James looked at the stick and said "HOLY SHIT!"
Ok, I'll get my 600 hours in at work, at that time I was working once a week at Rowan House, a shelter for abused women and children. (I will go back to teaching when the girls are in school). I would then go on maternity leave again and it'll all be ok. I've done this pregnancy thing once before so I know what to expect. Maybe it'll be a good thing that Brinley has a sibling.
I stopped working at Rowan House because I was sick for months. I felt awful. I am not feeling sorry for myself, just stating that I felt like crap. I kept telling myself that this was supposed to happen. We got pregnant not long after the whole Newtown, Connecticut shootings occurred and baby was due on my Nanny's birthday. It was all good. It was meant to be.

Jump a couple of months.....while waiting for the Trisomy 21 results, I went into a panic one night in the middle of the night. Here we go again. I called my sister, she tried to calm me down, I called Health Link and spoke with a nurse and she tried to calm me down. I decided to go in to emergency and talk to somebody. Again, I had no control over the results and no control over the health of this baby. It was a long night. Again, I am calm and collected because I know that when I am in a state of panic, I know that everything is ok and that I am safe. It's difficult to explain.

My point....things happen for a reason. We conceived Adele for a reason. We were chosen for a reason. I want my girls to wake up Christmas morning and run down the stairs together, excited to see what Santa left them. I want them to hide their teeth under their pillows and share in the excitement the following day after the tooth fairy leaves a small amount of money under their pillow. I want them to walk home together from school and talk about their day. I want them to argue and make up. I want them to love each other and be there for each other, always. I want them to be the best they can be and learn from each other. I want them to respect each other and teach others about respect. I want them to make a positive difference in this world.

I have received many messages from old and new friends telling me that they admire my strength and courage. I am not always strong. I am not always courageous. I am not always smiling. I am not always a good wife. I am not always the best person that I can be. I don't always say the right things. I don't always have patience. I don't always feel good about myself. I don't always feel confident in my abilities as a mother. I struggle too. I've cried and wondered if I have the ability to raise a child with special needs. It's tough.

All I know right now is that when I see these two girls look at each other, I have never seen a love that is so strong. They make eye contact and hold it and I feel that they are telling each other that they will always be there for each other. They have a special bond.

A sister is a gift to the heart, a friend to the spirit, a golden thread to the meaning of life.
~ Isadora James.

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. You can vote once every 24 hours. Just a click! :)

 If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 20, I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)

Beautiful!

Day 4 of the 31 for 21 Challenge

Today's blog is all about how beautiful Down syndrome is and the bond and love that two sisters have for each other. <3

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

LOVE

 

 

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. You can vote once every 24 hours. Just a click! :)

 If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 20, I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)

 

 

 

 

 



 

 

 

 

 

 

 

 

 

LOVE from FLORIDA!

Day 3 of 31 for 21 Challenge.....

 

Another hospital picture....Adele loves her sister!

 

 

Since I started the blog, I have met so many amazing people. Allison is one of my new friends from Florida. She is beautiful inside and out and one of the sweetest ladies I know. Things happen for a reason. People come into your life for a reason. I am so thankful that that Allison has come into my life! I keep telling her to start writing a blog! She would be awesome! She sent me this email and I decided to use it as my blog today......

 

 

PJ top...fancy shoes and no pants!

 

 

I think of you and Adele often.  I was sooo sad and heart broken to hear about your friend who lost her precious daughter.  I cried and cried when I read your post.  I cannot imagine losing my Maxwell.  He was a surprise and yes we struggled with it (and somedays still struggle) but I wouldn't change him for the world, I love him with my entire soul, so much so that it hurts at times!  My heart goes out to her and her entire family... she has been in my prayers.  I also pray for Miss beautiful Adele that she EATS!! and gets off that oxygen and grows stronger and stronger everyday!  Max wasn't and still isnt the best eater when it comes to taking his bottle, although he is a breastfed baby he only takes it with the bottle because he didnt latch well and his suck wasnt strong enough.  So I feel your pain.  Even to this day there are times when getting him to take his bottle is painful.  He still only takes about 4 ounces but sometimes he will only take 2 ounces.  I am like Max.. seriouisly you are almost 6 months old... it is time to start chugging these bottles.  Not sure if that will ever happen.

 

I also saw that you are going to get her 2 month shots... good luck.  (since Adele is your second maybe you have gotten used to it) I cried awful when he had to get his shots.  Poor thing. I wanted to ask you why you guys decided to get the RSV shots.  We went over it with our pediatrician, cadiololgist and Max's pulmonologist but bc his holes are closing they didnt think it was necessary.  Does Adele have a hole?  I think you said something about an ASD.  Max had an ASD and PDA at birth... but it seems like they have closed up.  We get confirmation in December.  Our Cardiologist is amazing and has had many babies with Down syndrome and felt that we didnt have to go for the shots.  That made me happy but also scared bc I know he is at risk for RSV and he can be a definite hospital trip if he got it.  My nephew got RSV and it was scary for him and he is typical.  The shots in the States are not covered by most insurances and cost $1,200 PER SHOT!  I was crazy but we were going to get it done if he needed it.

 

Brinley's baby that she feeds and burps!

 

 

I was sad to hear about your trip to town that was devastated by the flood.  We've been through two hurricanes and although they were CAT 2 the devastation was awful.  I can't imagine what it must feel like for you. 

 

I have to tell you... You are one of the STRONGEST people I know.  You always sound so uplifted and positive.  It is amazing and you are an inspiration.  I had a meltdown the other day because I was meeting new moms that have babies and children with Ds.  I met one mom that has a little girl that is 3 1/2 and she just started walking... I looked at her and wondered if Max would have some of her characteristics when he got older... and I had a total meltdown.  Thankfully my mom was with me.  I just kept saying... it is so hard to come to the realization that for the rest of his life he will be seen as different and have obstacles thrown his way.  I want to take it all away.  I want to make it all better for him.  I know I cannot and I know this is his path, we well as ours and all I can do is love that baby boy with every fiber of my being (which I do of course) and tell him and make sure he always knows how loved and supported he will forever and always be.  Then I also have to be so thankful that I get to hold my baby boy every day and rock him to bed every night and that was taken from your friend. 

 

Loves hats and shoes!

 

 

I hope we someday get to meet my dear friend... I really hope we always stay in touch.  I think I am going to start some ground work on my blog this weekend.  Thanks to you.  I keep meaning to share your blog of my facebook... but my memory is like a gold fish and I get on facebook while I pump (every 4 hours).  You think I couldremember.  LOL

 

Kiss your girls for me!  (is that weird or odd that I would love them and kiss them up if I had the chance?)  Tell Adele that she has prayer warriors and that I pray for her and your family.  She gets stronger everyday and I can see that in your pictures. 

 

Sending our love from down south....

 

All the best my dear friend... until next time.  Keep smiling and blogging and what an inspiration you are!

 

xoxo-Allison

 

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. You can vote once every 24 hours. Just a click! :)

 

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 20, I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)

 

 

JUST EAT!!!!!

Day 2 of the 31 for 21 Challenge...... 

So precious <3

Well, we are getting to know Adele more and more each day and how she works. She has a cranky period that starts at around 8:00pm and goes until 10:00pm or sometimes later. She needs to be held and loved. She would sleep through the whole night if we let her and it's tempting but we wake her up....well, we try to wake her up. She is such a sleepy little girl which has turned into another setback lately. Her feedings have been painful. Very painful. I would gladly take suggestions but my guess is, we have tried it! If we feed her when she's super sleepy, more then likely, it's coming right back up. Trying to rinse formula out of a burp cloth is also painful, it's gross and sticky and stinky. I understand that it's not about me, but burp cloth laundry has increased dramatically.
We have an appointment this Friday with the pediatrician, I sure hope that her weight gain has been steady. She was 8 pounds 8 ounces at the PLC, which is up 3 pounds 4 ounces since birth. I think that's pretty good. I hope it's good enough. I seriously don't want to go back to the NG tube. I would be upset.
She also has her shots tomorrow evening. I know that at 2 months, it's 3 shots. It stresses me out but I need to get used to it as she will be getting RSV shots every month.

Always need to be close :)

I have to be honest though, I think that we have been lucky with her when it comes to her health. So many babies with Ds have cardiac issues as well as digestive problems. I am thankful that right now, her heart is doing great. :) Fingers crossed.

I've been looking into music therapy for Adele and for Brinley. I truly believe that it aides with brain development, speech, anxiety and memory. I am looking forward to hearing back from the places that I have contacted. I would love to have somebody come to the home and spend some time on a regular basis with the girls.

When do we start speech? Occupational therapy and physical therapy? I was thinking that this should be starting soon. Thought I'd ask friends first then contact the Developmental Centre.

High River

I haven't driven around too many areas in High River since the flood, but yesterday I was downtown and checked out some of the stores. Everything was closed. Some businesses are re-building and some just don't have the energy or the money to start up again. I also heard that 32 homes in one of the communities, will all be knocked down. Those homes were deemed inhabitable since the flood. They are filled with memories and keepsakes. I couldn't imagine not having the opportunity to go back into my home to retrieve my belongings. How do you cope? How do you start over? There is a small community that has been set up just south of High River for those who have been displaced. This is home. It's a bunch of portable type trailers all set up in a row, filled with families. Makes me sad every time I drive by. It's not home.
I guess they get to live there rent free for 90 days then they need to start paying. I think that it's reasonable as long as the rent isn't too much. Must be so tough on them right now.
I'm wondering if there will be an increase in anxiety and depression throughout High River? I truly hope that services will be set up to assist those in need. This is something that will resonate with many for a lifetime.
Adele, Brinley and myself, were given quilts as a gift from local quilters and quilters in Ponoka. It was so kind and generous and heartwarming. One of the families receiving quilts lost their daughter in the flood. She was trying to save somebody and in turn lost her own life. Made me sad. There was no water then seconds later, cars and homes were washed away.
I know that I've talked about the flood quite a bit, but I need to. One of my friends drove through High River recently and she told me that it upset her so much that she had to leave and go home. Homes are crumbling to the ground, there is mud and dust everywhere, businesses are closed, some are set up in trailers throughout the community. It's quiet and eerie sometimes. It's sad.
I know that we will re-build and in a few years, things will be back to normal, but right now, it's difficult for so many. I pray for the elderly and I pray for those who are not being covered by insurance. It's so confusing that we all pay insurance every month, then a disaster happens and they don't help, they run away with your money and refuse your claim. I sure hope that those companies end up without any clients. Shame on you!

You can't wake me up!!

I think I forgot to mention that our smart little peanut rolled over at one month and three weeks. She went from her belly to her back. I was floored. We were so excited. Just another milestone accomplished. It's funny because some people see Ds as a disability, but right now, I see it as the complete opposite. I know that I will get frustrated when some milestones are met later then a child without Ds, but for now, I get excited at the smallest steps. We do this with Brinley too. We celebrate any milestones. I still think it's crazy that one small, tiny, little sperm, swimmer, tadpole thing, swims and finds one egg and calls it home, then nine months later, you have this being, a real live human, with 10 fingers and 10 toes and ears and a nose! :) It's crazy!

Time to go play with a toddler and hopefully feed a baby.
Have a wonderful Wednesday...is it Wednesday? I think it's Wednesday. :)
xo

A couple pictures from our photo shoot :)

Modern Nest Photography

 

 

 

 

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. You can vote once every 24 hours. Just a click! :)

 

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 20, I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)

31 for 21 Challenge! :)

31 for 21 Challenge

 

Are you ready?

By now I think most people know all about the challenge, what "31 for 21" stands for, what the challenge is, what to do etc.

For the new bloggers & readers out there here is a quick summary:

- Trisomy 21 is 3 copies of the 21st chromosome (ie Down syndrome).
- October is National Down Syndrome Awareness Month
- There are 31 days is October
- Blog every day in Oct (31) to raise awareness of Down syndrome (T21)
- So ... 31 for 21 Blog Challenge

 A couple of guidelines:
- You don't have to blog about Down syndrome every day; just blog every day about whatever you want
- You should mention, at least once, that you are participating in "31 for 21"
- You don't have to be a parent, or grandparent, of someone with Down syndrome to participate
- Grab the button and post somewhere on your blog or in a blog post
- Sign Mr Linky so other bloggers can see all the participants
- Meet new bloggers (there were about 170 last year!)
- If you tweet, use #31for21

Go over to Big Blueberry Eyes and sign up!!

Randoms......

A few randoms for the day......

You may have noticed that I have three sponsors on the blog; Paperlili, Modern Nest Photography and Tutu Sweet Designs. All three of these ladies are dear friends with amazing businesses. Paperlili and Tutu Sweet Designs can be ordered online, all adorable clothes for girls and some for boys! Two great businesses. Modern Nest Photography is based out of Calgary but Amy is willing to travel to exotic islands, at the expense of the client, of course. :)
Check out their links. You will love all three ladies. :)

LOVE

Adele is now back home after spending a few days in the hospital. She seems to be doing fairly well but still has goopy eyes and a bit of a cough. She is also tired. She needs to keep up on her feedings or the NG will have to go back in....I don't want that to happen.
Most parents love this age and enjoy all of the snuggles, me, on the other hand, can't wait for her to get bigger and stronger. This weaker muscle tone really affects her breathing and it freaks me out. It's funny because she is such a strong little girl, but she is floppy, almost rag doll like. Things are so different with Adele then what they were with Brinley. It's all new to us. Brinley didn't like to snuggle much but Adele loves to be cuddled. Brinley never spat up, Adele has had some pretty big regurgitations. Brinley could be fed in any position, Adele needs to be on her side and paced. Brinley woke up every 4 hours or so to be fed, Adele needs to be woken up for her feedings. Brinley obviously didn't have oxygen and Adele does, which is a total pain in the ass but we also love it. I'm looking forward to the day when we have no tubes and we can carry our baby around without worrying about lugging around machines. Adele has an appointment at the Respiratory Clinic on October 22nd with Dr. Noseworthy....HA! HA! HA!! That name kills me! How appropriate.
This just made me think of some other names.....my sister had back surgery years ago and the doctor's names were Dr. Dewer and Dr. Harder! HA! HA! Dewer Harder!!
One of the allergy doctors in Calgary, Doctor Doctor and a gynecologist in Calgary, Dr. Handslip! I can't get enough!!!! I met a girl in Ottawa once and her name was Rumen Rye! HA! HA! HA!!
Ok, enough of that! I'm so childish!

Going to the park!

Next thought....I have a friend in Phoenix, whose daughter has been bullied for years. She is a beautiful girl, bright, athletic and a kind and sweet person. She truly is the girl who everybody would love and respect, but there is this group of mean girls, who won't leave her alone. They are relentless and have been for years. I don't know how she copes. I worry about her every day. The other night, the group of mean girls put toilet paper all of their property, tampons and maxi pads were thrown all over the driveway and grass as well as other silly items. My friend called the police. She is done.
My concern....bullying is starting at such a young age. I've seen it in preschool. In preschool, it starts with "I don't like you. I don't want to play with you. You're dumb."
To us, this may not mean a lot, but to a young child, it means too much.
One of my friends has three beautiful children, all sweet and beautiful. When her oldest was in kindergarten, one of the 'popular' girls was celebrating her birthday. The mom invited all the girls in the class except for my friend's daughter. When the mom came by the school to gather the children for the party, she told them all to line up and then said "EXCEPT FOR C!" Are you freakin kidding me? She actually said this out loud in front of all the moms and children. A couple of the moms decided to pull their daughters out of the party in support of my friend. I would have been one of those moms, plus I would have had a word with the cool mom in the hooker boots with the perfect body and fake boobs and botoxed face and ugly personality. When my dear friend told me this, I was livid.

I love going on the slide!

This brings me to my point.....kids learn from those around them. Your behaviour at home is what your child sees as right and how they should treat others. If your home is filled with fighting and swearing and bullying, your child WILL take this to school and repeat the actions. They are, a lot of the time a direct reflection of mom and dad. I am also a firm believer that letting your children watch R rated movies, play violent video games and when you allow them to make the rules, because you would rather be their friend instead of the parent, you are setting yourself up for failure. Your child will mimic what they see....I don't care if you tell them that it's wrong before you put the movie in or let them play that video game. You are telling them that it is ok. Be mindful of your words and actions at home. Be a good role model. Be a parent.
We will all make mistakes, god knows, I will, but I am going to try my hardest to be the best mom that I can be. There will be rules, there will be consequences, but the consequences will fit and relate to the poor behaviour. Smacking your children after they have smacked their sibling is telling them what exactly? Don't hit but I will hit you for hitting your sibling. Hmmmm.....
I know that parenting is difficult and I know that mine are still young and not full of hormones and attitude, but I brought these precious girls into the world and it is my job to be the best parent that I can be and it is my responsibility and duty to keep them safe, fed, educated and loved.
I know that some of you probably don't approve with everything I just wrote, but it's my blog! :)

Just happy :)

Last thought....
If you read my last post, my dear friend in L.A. lost her precious angel the day after I wrote the blog. She was here on earth for such a short period of time. I don't understand. Some of you have said that God needed her way too early and that during her few days here with us, she did the job that she needed to do. She made a difference in the lives of so many. Sometimes I don't understand. I do strongly believe in God, I just don't understand his reasoning sometimes.

xoxoxo

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. You can vote once every 24 hours. Just a click! :)

 

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 21, I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)

Drowning.....

Kisses

It's time for a Dear Diary moment.....

Well, it's been a difficult few days. Sometimes I feel like I'm drowning. On Tuesday night, Adele's breathing was laboured and she was pale. My mommy instinct kicked in and took our peanut to High River Emergency. Adele's respiratory rate was between 80 and 90. That is too high. I fed her a bottle and she regurgitated the entire bottle. I felt so sad. It was decided that she would go to The Children's Hospital. As they were loading Adele into the ambulance, I cried. It is so difficult seeing your little one being taken away in an ambulance. I was sad.

When I got to the hospital I waited to be seen so I could go back and see Adele. The triage nurse stopped what he was doing and asked if I was Adele's mom. He jogged me back to the trauma bay. It was a bit overwhelming when I saw this little baby on the gurney, crying, surrounded by 8 nurses and doctors. At this point, I was so happy that I had decided to bring her in. I knew something was wrong.
They increased her oxygen and did a few tests. They moved us to a private room and I just snuggled her for hours. I wasn't going to let her go. I needed to hold her and kiss her and tell her that I loved her so much. She slept so peacefully on me.
The doctor came in and we had a good chat. She told me that Adele really didn't look well when she came in and that it was a good decision to bring her in to get checked out. She decided that Adele would be admitted, just to be safe. There were no beds at The Children's Hospital, so they were moving us to the PLC. Another ambulance ride.
By this point, it was around 6:30am and I was delirious. I don't do well with no sleep. I was emotionally drained. Adele was exhausted.
We both napped for a couple of hours.

So peaceful

Both Adele and Brinley have colds but poor little peanut got hit a bit harder. When breathing is already a bit of work, adding a cold on top of that caused great difficulty with her breathing. Who would have thought that a cold would cause her so much grief?
When I returned home, I cried with my mom. I swore and I cried. I told her that I was trying so hard. She said that maybe it's too much for me. I realized that it's not too much for me. I am a mom and I worry about my kids. We want all of our children to be healthy and happy. I want that for both our girls. Seeing your baby being poked and prodded is difficult. Yes, there is added work with Adele. Appointments and writing everything down. All trips. All appointments. Mileage. Meals. Parking. It is work, but she is our daughter. This is what you do as parents.
I'm tired.

Mommy snuggles

The hospital expects parents to stay overnight but last night we couldn't pull that off. James had to go to work early this morning and I needed to take care of Brinley. I felt confident last night that she would be just fine. The nurse was so kind and she was excited to take care of Adele. She was looking forward to snuggles. It's still difficult because they don't know her, they don't know exactly how we care for her and how we feed her.....
I called this morning between shift change to talk to her night nurse. She had a good night but was tired during her feedings. That is normal. Adele is still growing and trying figure things out. She is so precious.
I'm hoping that she will come home today and we can get started....again. We returned back to High River on Saturday. It's been nice. It's sweet to see Brinley with her toys. It is all new to her, this makes us smile.
We finally got a furnace but are waiting on everything else to be completed. It is painful how long it is taking to finish the basement and garage.

I'm feeling better

When I first started blogging, I connected with a lovely girl from L.A. She was so excited to be having a baby. She was so excited to be connecting with another mom who was having a baby with Ds. She kept in regular contact and always checked in to see how the pregnancy was going. She sincerely cared about me. She posted every article she could find on Ds, all positive. She took great care of herself during the pregnancy. She decorated and set up the nursery so that it would be just perfect when she brought her beautiful little girl home. She couldn't wait to hold her baby in her arms. I always felt the love she had for her husband and growing baby. I was a bit surprised that she actually went past her due date. She was being induced. I was so excited that the time had finally come.
Part of our conversation last night at midnight....

I had an emergency C-Section this past Monday because there were complications. She was 3 days past her due date and we were going to be induced but I guess during my last 12 hours of pregnancy the cord wrapped around her neck. She is in NICU, they don't think she will make it through the night.
I am completely heartbroken. I feel like she was fine and everything was great and then things happen and it broke her and now I'm going to lose her and it's not even related to Ds.

I was rubbing her toe and she actually moved her toe, like she was tapping my finger. More then once. Right after that her blood pressure dropped so bad that they had to ask us to stop touching her, and we haven't been able to touch her since because it was making her blood pressure drop dangerously low.... I feel like she used all the strength she had in her to tell us that she knew that we were there and that she loved us.

At this point we want what's best for her... I can't stand not being able to touch her. I never even got to hold my baby....watching her go through this and not being able to comfort her is so painful.

She looks so beautiful and peaceful.

It hurts so much that I don't get to keep her.

They told us that she may go into cardiac arrest at any point so if she does, would we want them to shock her and do CPR? We told them not to do... I want to remember her....perfect and beautiful.

She has changed us so much, so I just want to make her life one of love. If I can help one mom who's struggling with the Ds diagnosis and show her how unimportant it is because their baby will be amazing and perfect, then our little girl has already been the most amazing gift to this world.

Our conversation ended because the NICU called.

Hold your children. Tell them that you love them. It doesn't matter the age. It doesn't matter where they live. Love them.