Dear Brinley and Adele....

My Babies :)

Today was a pretty great day. I had a few hours of snuggles and Adele's breathing was not as laboured. I guess earlier on in the day, she was having some troubles again so they decided to book her in at The Children's Hospital on Tuesday, with the ear, throat and nose specialist. They will put her in a little incubator and head off in the ambulance for a visit with the doctor. I asked James if he could go to that appointment..mommy doesn't want to go, I want to hang with Brinley for a while. I can visit later on that day.
She had a repeat x-ray, it looked pretty good except for the NG tube which was in too far. Who's the crap nurse who can't do her job properly?? Oh wait, I inserted that tube. It looked like a fish hook on the x-ray, I giggled. It could be pulled out an inch or so but I'm guessing they will leave it alone.
The nurse practitioner was pleased with the x-ray but was going to discuss it with the doctor. The swab results came back negative, they are just waiting for one more test, then she should be allowed out of isolation. The nurse was going to ask the doctor if she could come out sooner....here's hoping. I asked for a room with a view. Our little peanut needs a little sunlight. I can't wait for the day when we can sit on the deck with Adele and Brinley and let our little one see the sun and breathe in some fresh air.
James headed to the hospital for some night snuggles and he took the car seat back with him as we are really hoping that we can return the car bed and leave with her in her car seat. I'm thinking that because she is on oxygen for a while, she may just be fine. Fingers crossed.

Sisters :)

I was having a mommy thought about the future when I was driving home from the hospital today. I thought about social media, role models, Miley Cyrus and decided that it was time to write my little girls a letter.....

Dear Brinley and Adele,

I'd like to start off this letter by telling you that mommy and daddy love you to pieces. You came into this world as naive, vulnerable and beautiful little girls. We, as your parents would like to keep safe and protected all throughout your life, but we know that at some point, you will be making your own decisions. We pray that what we have taught you will resonate with you and that you remember to make good choices that show respect for yourself and others.

Mommy and daddy think that we are fairly cool and not too strict, well maybe a bit strict when it comes to certain things, but we believe in having a good time and laughing lots. I have a few suggestions for the both of you. You may think they are rules but I consider them suggestions that you really should follow in order to make mommy and daddy happy!

#1 – I would like to start off with role models and what defines a role model. As I was watching Miley Cyrus twerk on Robin Thicke, I had this epiphany. She is no longer Hannah Montana. Twerking is gross and that is that. If I see you girls twerking up on somebody, boy or girl, mommy will gather up the family and we will take you to a very public place and twerk on strangers while you cringe and cry and regret that you thought twerking made you look cool.  It is cheap and disgusting and I gag. You will choose role models who inspire you to become a better person. You will choose people who have made a significant, positive difference in this world.

#2 – I don’t know what technology will look like in 10 years but I am telling you that you will not own a cell phone while you are in elementary school. You may have some sort of device that only calls mommy and daddy but that is it! You cannot earn one by doing chores or by being kind to each other. It’s not going to happen. You will not have a Facebook account, a Twitter account or a MySpace account. You are too young. There is no negotiating. When we feel that you are ready, you need to prove to us that you are mature enough and realize that there are certain responsibilities that come with the social media world. 

#3 – You will not date in elementary or junior high school. You will not go on first, second or third base….again, you will not twerk! Mommy and auntie weren’t allowed to date until we were 16 and that rule was followed or grandpa would have given us a serious whoopin. J There is no need to date before this age. You are permitted to have friends who are boys but you will not date. You need to enjoy these years, play with your friends, laugh, enjoy. If I find out that you have broken this rule, I will lock you in your room for a long, long time and let you think about your poor decision. I will then extend the dating age to 18. I know people who know people…I will know if you break this rule.

#4 – You will not leave the house in one outfit then change at school. I will find out and you will regret it. I will not allow you to pick out your own clothes for a very long time and I will chaperone you to school and check on you periodically throughout the day. You will also be given a school uniform. Mommy’s choice! Respect your body. Dressing provocatively is not classy or sexy. When you dress like a young, respectable young lady, you look beautiful and attract positive attention. When you respect yourself, others will also respect you.

#5 – You will have chores. You will do your chores. Don’t expect to be paid. We pay for your food, your clothes, your transportation, your education and the roof that is over your head. If mommy and daddy choose to give you an allowance, be happy with what you get because if you ever complain, you won’t see a dime for a very long time. We will even take your tooth fairy money.

#6 – Mommy and daddy are funny! We will tell jokes in front of your friends and you will laugh. Don’t be embarrassed, we could be twerking instead of telling jokes.

#7 – You will go to school. You will graduate. You will do something productive with your life. Do we expect you to go to university? No. We expect you to be productive members of society. If you choose to not attend a post-secondary institution, mommy and daddy will buy a vacation property with all of the money that we put away just for you….. J

#8 – You will use your manners with everybody you encounter. Not everybody will be nice to you. Not everybody will use their manners. When you go out with your friends, some of them will swear and won’t say please and thank you. You are not too good. You are not above other people. You will be polite to others and you will make mommy and daddy proud.

#9 – When mommy and daddy are old and we lose our memory and pee our pants, you will change our diapers because we changed yours…if you choose to pass this duty onto others, you will lose your inheritance.

#10 – Mommy and daddy want you to know that you can always come and talk to us. We will always support you and love you unconditionally. We will watch you play sports, come to your school activities, listen to you play the piano, watch you during ballet class and cheer you on when you need it most. We will encourage you to be the best person that you can be, that doesn’t mean a straight ‘A’ report card, that means that you tried. We will have your back but when you make a mistake, you must take full responsibility and make things right. We expect you to be honest with us, your friends, your family and your teachers.  Above all, know that you are loved. Xo

Love,
Mommy and Daddy

TUESDAY???

Adele :)

Yesterday, I spent most of the day with Adele. The nurse practitioner went over all of Adele's results with me and I truly appreciated that she took her time to explain the tests. We discussed the x-rays, the echos and the blood tests. I saw all of the results and I could see that the right lung, in the upper lobe has a bit of white cloudiness, which means either pneumonia or perhaps a partial collapse. A repeat x-ray is scheduled for tomorrow and I am hoping that it is all clear. If the doctors still see the damage, she may order a round of antibiotics. I am ok with her getting some medication but then I worry about a yeast infection. Good lord.....one thing, another thing and another thing.

I am smiling in this picture...I promise! :)

Adele is back in isolation because she had a nose swab done yesterday. I can't stand isolation, it's all about me. I am too much of a heater to wear a mask, gloves and a gown. The nurse practitioner told me today that the swab was either dropped on the ground or it wasn't sealed properly. My first comment "do I need to wear this gown again for another 48 hours?"
Thank god the results should be back tomorrow. I love that they are very pro active and are covering all of their bases before Adele is allowed to come home. We are thinking Tuesday now. We purchased the car bed, so we took the car seat home. Now, we are being told that she may go home in the car seat. I try so hard to be flexible and I want to be flexible, but I am also black and white, grey doesn't work for me. I know that our sweet peanut is very unpredictable, but come on Adele, let's get moving!! :)

My last post talked about my uncertainty of having Adele and if it was the right choice...more so if it was fair to her....do you put your babies through all of the pokes and prodding? You think of the future and come up with all of these whacky ideas of how Adele's life will be....it was a tough day. I felt so bad for her and was upset and my emotions were running wild. I received a whole lot of support from friends and the messages that were sent just confirmed that we did make the right choice. It might be difficult sometimes for Adele but it's also going to be difficult sometimes for Brinley. We don't know what the future holds, but what we do know is that these two girls have so much love and support and that is unconditional.
One of my dear friends sent me a message. She has helped me get through this journey and I know that she's good because she is number 14 in the top blog category for Down syndrome. It's like she's famous!! I'm still hoping to make that list! ;)

I just read your last post. Damn you for making me cry first thing in the morning!! Krista, you made the right choice in having little Adele. Things are tough right now, but they won't always be like this. She is going to have an awesome life. And everyone struggles in life, not just people with Ds. Everyone has struggles specifically their own. Adele will have her own now and then, but struggles, challenges, obstacles, do not make a life not worth living. Never question your choice to bring her into this world. She was meant to be. You and your girl were meant to take this path together. You Made The Right Choice.
Alright. Enough mooshyness first thing in the morning. Sending you much love. Stay strong, you will get through this rough patch.

My heart feels pretty good right now. My mind feels pretty good.

I went to the OB today for a check up. I knew that it wouldn't be invasive as I am not breast feeding, so things are not quite right down there at this moment. Now, if you want to make a comment on the breast feeding, DON'T...I don't want to hear it. My boobs don't work. I don't feel like a failure. I refuse to pump every 2 hours to get 10 mls of milk. I refuse to overdose on milk producing drugs again. I told the nurses that having a lactation consultant talk to me about the importance of breast feeding would result in a very tense conversation with possible violence. Funny thing, I've been in the clear up to this point. One of my closest friends Katie, is certified as a consultant and she told me with Brinley that you do what you want to do and what works for you and your family. Formula is feeding her belly. She is getting lots of nutrients. She is gaining lots of weight. The only problem, her butt stinks so bad. The nurse told me today that they have taken her dirty diaper to the other side of the NICU just to piss off a nurse! HA!! HA!! HA!! I love it!
The OB asked me what we would be doing for contraception.....I almost laughed. Right now, abstinence is what we are practicing. It seems to be working so far with not getting pregnant again. I told her that before any action starts up, James will need the snip snip, as well, seven or eight other forms of contraception will be in place. She recommended Mirena. Any input??? I am so scared. Those little swimmers need to die!

Today has been a good day. I don't feel like crying, which is a great thing. I don't like to be weak and cry. I feel like I should be strong and prove to people that I can do this and I can handle all of these ups and downs. On the other hand, I like sharing my vulnerable side and letting others know that sometimes I need advice and help. Sometimes I need a shoulder to cry on and sometimes I need to yell and scream and vent. I guess I can't always be strong.

Mom, put this on me! TAKE IT OFF! TAKE IT OFF!!

One more thing....I have a new friend Christina who is a very busy mom, but always checks in, every single day and who has been a great support since Adele was born. Our kiddies are the exact same age and we live only minutes away from each other. I get to be me when I am chatting with her...it's nice cause for those of you who know me, that can be scary.

Happy Thursday! :)

Dear Diary....

Our beautiful Adele

Yes, I am the blogging queen right now as I need to write (type) my thoughts down every night. It makes me feel better. This post, I am going to pretend that it is only me reading it.....

Dear Diary,

I had a bit of a crappy day. I called this morning to check in on Adele and the nurse told me that she just had a red alarm. Her heart rate dipped, her oxygen level dipped and her skin went pale. I felt ill. I know that James has to work and provide for his family and he also needs to spend time with his new baby girl. He was put in a tough position. He left work and came home so we could go to the hospital to see our peanut. Thank god for my sister. Thank god that Brinley is obsessed with her Auntie and her cousins. I feel comfortable and I don't worry about her care or that she is being neglected. The only time Brinley would be neglected would be when Auntie is Tweeting out my blog or pinning it on Pinterest!
Anyways, while we were waiting for Ange, the nurse practitioner from the hospital called. As soon as I saw the number, my heart goes into speed mode and I feel instantly like I want to throw up. She informed me that a portion of Adele's top right lung had collapsed and that they will draw some blood and she was back on oxygen and would have an echo this afternoon. She was going to call The Children's Hospital to try to get her in for a sleep study to determine why her breathing is laboured and the reason for the indrawing. I took in as much information as I could then I cried. I tried so hard to stop but I felt like I was drowning. She let me know that Adele was ok and to come into the hospital and she would sit down with us and go over the x-ray and answer any questions that we may have regarding Adele's little setback. I hung up and cried some more. I stopped crying, then I cried again.

STOP TAKING MY PICTURE

We left for the hospital and I felt better the second I saw our little peanut. She looked pale. I picked her up and put her on my chest and snuggled her close and hard and rubbed her little back. I whispered to her just how much I love her and that she is beautiful. The nurse came up and as soon as she started to talk to me, I cried. For the first time, I had a moment. I had a moment that hurt my heart. I had a moment that made my head spin. I said to the nurse, through my tears that I wondered if we made the right decision and if this was truly fair to Adele. Having a baby with Trisomy 21 and putting her through tests and needle pricks and oxygen tubes and NG tubes and a home in the NICU. Who deserves that?? Why would I as a parent do that to my child? This has nothing to do with me. This has nothing to do with my duties as a mother. I visit Adele every day, sometimes twice a day. Why? Because my love for Adele is so overpowering and I am her mother. Is it fair that I knew before hand that she may have health concerns and that I still continued with the pregnancy? These thoughts rushed my into my mind. I felt so sorry for our baby at that point and blamed myself for bringing this little girl into the world knowing that it wouldn't always be easy.....
The nurse looked at me and said that of course we made the right decision and that the love we have for our daughter is so amazing and wonderful. She told me with tears in her eyes that she thought about Adele the night before, all night. My heart felt good.

So sweet

I gathered myself. I got my mind on track, somewhat and told my baby girl that I loved her. I am telling you, don't take your children's health and well being for granted. Feel blessed that you have your children with you at home, that they can eat, walk, breathe and sleep. I have never in my life thought that our world would be consumed with oxygen levels and heart rates and respiratory rates and daily visits to the NICU. I took for granted putting a baby in a car seat and running around doing errands and not even thinking about if my baby was safe and well....I just assumed that she was fine. So many things I have taken for granted.

We will be bringing a baby home with an NG tube and also she will be on oxygen. We need to call the medical air companies and have them set the home up for Adele. We will need a lot of medical supplies for feedings and we need to monitor our little one to make sure that she is well and healthy. I am scared. There is no set date but it could be soon.

Before leaving the NICU tonight, Nurse Betty gave me a card.

Beautiful Adele,
I was thinking of you and your family
I was thinking of your journey through the NICU.
A journey filled with many ups and downs, but most of all I was thinking about what a loved and blessed little girl you are and what an amazing and beautiful family you have been born into.
PEACE LOVE AND MANY BLESSINGS ON YOUR JOURNEY HOME.

Nurse Betty. :)

YES NO YES NO

Happy 1 month Adele :)

Saturday, August 24th, marked Adele's first and hopefully only month in the hospital. We had a little birthday party, brought her a cupcake, a pretty little dress, a bear, not the Costco bear that we usually use and her one month sign. We wanted the cupcake to be blended up and put in her gavage tube but they only want Similac in her tummy right now. The nurses are so strict! ;) It was a cute little party with just the four of us. I truly thought that our peanut would have been home by now and that we would be celebrating with the whole family.

Today was a tough day. We call the hospital every morning and every night to check on Adele, just to make sure that she's doing well. Today when I called, the nurse told me that she had just passed her car seat test. We didn't think that they would be doing it today as they thought she needed some more time. We were ecstatic and on cloud nine. James and I couldn't stop hugging...I was so excited that I could barely contain myself. As I was getting ready, the nurse called. I was pretty sure that she was going to tell me that we could come and get Adele. Nope. One of the settings didn't work properly during the car seat test, so they would have to do it all over again. I truly felt crushed. I knew that it was an honest mistake and technology doesn't always work the way we hope and it sometimes fails. She told me that they would perform the test again in an hour.

We headed into the hospital with hopes that with mommy and daddy by her side, cheering her on, she would pass with flying colours. We stared at the monitors and it made me sick. James and I decided that in order to stay sane, we would go and get some lunch and return when she was closer to being finished with the test. We headed back up and stared again at the screen, it all looked pretty good. She has to be in her car seat for 90 minutes and maintain her oxygen, respiratory and heart rate levels. She must maintain 90 or above on her oxygen levels 90% of the time. That is the goal.

The nurse printed the histogram and the doctor analyzed it with another doctor. Due to my OCD, I hung around and listened to the conversation. The doctor was pleased with the results and said that he would give her a passing score. He said that he felt, to be safe, James of myself should ride in the backseat with Adele. We still ride in the back with Brinley, so this wasn't an issue. We were so excited. I believe I was clapping my hands and I could feel my face getting sore because I couldn't stop smiling. James took the base back down to the vehicle and I changed Adele into her coming home sleeper and got her all ready. I detached her from the machines, the first time in over a month. I could actually carry her more than two feet from her bed. We were ready, I was smiling, I had been waiting for this moment for over a month. The doctor walked over to me and he was shaking is head. He called his superior and she was not as pleased with the results. Adele was not being discharged. He apologized profusely but I cried. I didn't want to cry and I felt silly for crying, but once in a while, everything hits me again....the flood, being out of our home for over two months and having our sweet peanut in the NICU. I got myself together and sat down. James came back and I told him the news. Again, we were told yes then no. I felt ill. I felt hungover....what sucks is that I haven't had a drink in over a year.

Everybody felt bad for us. The doctor decided that we would try the car bed. The car bed is just a type of car seat but it's a little bed. She would lay flat. I knew that she would pass this test. It's easy. Ninety minutes later, we were told once again that she did not pass. She was 1.8% over the limit. I unpacked her sleepers, her bum cream, her Vaseline for her lips and we put her back in her bassinet in the hospital, told her how much we loved her, kissed her and left her again. My heart aches every time I leave her. I feel broken. I feel sometimes that I should have found a way to keep her cooking for another few weeks. I want her to get fresh air and to smell the outdoors. I want her to have some sunlight. I want her family to have unlimited snuggles with her and I want to get up every 3-4 hours and feed her. I want to tell her that I love her in the middle of the night and early in the morning. The love we have for Adele (Brinley too) :) is beyond anything that we have ever felt. She has impacted our lives so tremendously and she has only been with us for just over a month. She loves unconditionally. She looks at you straight in the eyes and you can feel her love. She is amazing.

I know that we have a whole lifetime with her and that some may say that we should enjoy this time where we still have some time to sleep in and to spend one on one with Brinley.  We love our Brinley as you all know and enjoy every minute that we have with her....even when she's a little needy and crabby. :) We are just ready to have all of us together under one roof. We want Brinley and Adele to start connecting. I want to get started on therapy, I want her Uncle Bob to have some snuggles. Her Uncle Bob said something to me the other day that made my heart melt. He told me that every time he sees a picture of Adele, he gets teary and a bit emotional. It's difficult on the family who hasn't had the chance to meet Adele. I can't wait for those moments.

Adele has come a long way. xo

I am very appreciative of the staff at the Rockyview and for all of the love that they have shown Adele, James, Brinley and of course moi. During a difficult time, such as this one, they have always shown support and love and you can see just how much they care about all of the babies in the NICU. They are unbelievable women. There is one nurse, Nurse Betty...she told me that I could use her name if I wrote something kind! :) Nurse Betty is the most beautiful person, inside and out. She smiles at you. She is sincere in her love. She checks in to see how you are holding up even if she doesn't have your baby. She is the type of person who makes us all look bad!! HA! HA!!! Just kidding Nurse Betty! I love you!!
I would love to talk about all of the nurses individually.....maybe they will give me permission.

Anyways, we don't know when the next test will be, but I am going to try to keep calm and breathe and know that Adele will let us know when she is ready to come home.

Thank you to all of you for the prayers and support. It keeps us smiling. xo

Groundhog Day!!

Sisters <3

Ok, I realize that I suck lately at writing the blog, but I truly feel like I am living groundhog day. You know, the movie with Bill Murray...that is me right now. I wake up with Brinley, I feed her breakfast, we play, she naps at 10:30, I shower, Brinley gets up, we eat lunch and we go see Adele. Next day....repeat!! It sometimes gets overwhelming even though it seems like a nice day to some of you, I assure you, it would be much better hanging out at home with my two beautiful girls.

Adele is doing great, most of the time but I still stare at those numbers up on the screen and get into a total panic when they dip too low. She had a couple of red alarms today while I was feeding her and I felt like I was going to throw up. I think about when she is at home and I no longer have those machines, how will I know??!!?? I mentioned this to the nurse today and she said that I need to focus on her skin colour. She told me that her lips went pale today when her oxygen levels dipped. I didn't notice because she had formula all over them and down her chin. I guess I need to be a little more observant and check for signs. I totally and completely took so many things for granted with Brinley. I took feedings for granted. I took oxygen levels for granted and I never even thought about a baby not being able to go in their car seat without dropping levels. This is all so new, pacing a baby while eating, looking at lip and mouth colour, inserting an NG tube, correct neck positions. My lord, I wish I was a nurse and not a teacher.

Beautiful!

Adele didn't pass her car seat test today. She lasted around 20 minutes and that was it....so discouraging yet in our minds we were pretty sure that she would need a few rounds of practice first. We need to be 100% sure that this little peanut is ready to be with her family. One of the nurses checked in on us to make sure that we were ok. We are fine just because Adele is letting us all know that she needs a little more time before she can come home to be with her family.

All I know is that she is doing stellar. She has exceeded our expectations right from the start. I asked the OT yesterday what she thought of her feeding skills. I don't ever want to compare my girls with others but I need a little more information right now on Down syndrome. Adele's sucking strength and feeding skills are equivalent to those of a baby without Ds. That is one thing that is very important to us, we want to be sure that she is able to suck, swallow and breathe and be able to digest her food and poop it out. Oh....once again, the things we take for granted.

Chubby cheeks!!

James and I have set up binders for Adele, divided into sections and ready for everything.....ok, maybe not everything but we feel organized right now. I met with a lovely lady from the Developmental Centre and she informed me of all the services that will be available for Adele. So exciting! I am looking forward to getting started, yet also feel like I may go crazy with trying to deal with an 18 month old too, who also needs love and attention. We will have to make sure that Brinley continues to feel loved and that mommy and daddy have lots of time for her and her needs.

So, we are still not back in our home. I figure at least another three weeks until we are able to return. I will only go back when the air quality is perfect and the house is spotless. We are doing 3 professional cleanings...I'm so OCD, but I need to know that the girls will be healthy and safe.

The other night while I was learning how to insert Adele's NG tube, I smelt this putrid and icky smell, so I looked at James and asked him if that was him or his daughter......the nurse piped up and said that she was sorry, she had chili for dinner and it was her butt! We started killing ourselves laughing and told her that she could be our friend. :)

Another silly story. I asked one of our faves if we should use sterilized water to help insert the NG tube or if we could use our leftover KY Jelly!!!! She went a little red, but I think she gets me! We all laughed and she said that it would probably work the same! Thank god she has a sense of humour. I seriously need some work on filtering.

Beautiful blue eyes :)

Ok, back to serious. :) I have to talk about the nurses at The Rockyview. They have been so amazing with our little peanut. Nurses call in before their shifts to request Adele and some have even said that they will only come in for overtime if they could take care of Adele. She gets so much love and so many snuggles. We feel so blessed. I was talking to my favourite doctor yesterday and he said that he was so impressed with Adele and he told me that he thought she was going to be a very smart little girl. There are so many moments when I am holding her and I get this overwhelming feeling that she is going to make such a difference in this world. She looks around and stares at her mommy and daddy and what we see is this little girl who is going to impact the lives of so many people.

While James and I were laying in bed a while ago, not doing any adult activities because it hasn't been 8 weeks and mommy is absolutely petrified that she will get pregnant...I want at least 7 contraceptives in place before any bedroom fun! ;)
Anyways, James and I were talking about Adele and the love that we feel for her, from the first moment we laid eyes on her beautiful, little face. I said to him, just imagine if we decided to not continue with the pregnancy because of our fears and concerns. Imagine not having her in our lives right now. Imagine not being able to hold her and love her and watch her grow. Imagine if I had gone to the hospital that day and ended it. Imagine where we would be today. Would our marriage actually survive? We would have blamed the other person. We would have to live with the fact that we made the wrong decision.
When we initially found out about the Down syndrome, it was very difficult. All you think about are the limitations and not all of the positive reasons why we should have this baby. Now, seeing this perfect and beautiful girl, all we see is how far she will go and how we as parents will never discourage or put limitations on either of our girls. James and I will settle for nothing less than the best for Adele and Brinley. They are capable of anything and with our support and the support of our family and friends, they will have unlimited potential to become whatever they want to be....nobody will tell us any different.

UPS AND DOWNS.....

A little update....

Cute!! Cute!!

Life has been a bit crazy lately. Adele is now 10 days old and I think that she is such a little fighter. She keeps gaining weight, but is not taking a full bottle, so that's why she has that tube up her poor little nose. She did take one full bottle today, I was shocked and so happy. That was her first time. Our little peanut is growing up! :) Adele is now in isolation because she needed to go back on oxygen. They weren't too sure if she has a little cold or something more serious. The doctor mentioned pneumonia, but her blood work came back great and her chest ultrasound also showed that her valve has closed. Her heart is looking great!!! Big smiles for mommy and daddy. I feel confident that it's just a little cold and that she will get over it quickly. Her respiratory rate hasn't been too great so the doctor told me today that they have decided to give her some caffeine....like seven cups worth. I guess it helps with improving her breathing, so here's hoping. I asked if there were any adverse or long term effects but not enough studies have been conducted, so it's up in the air, but he did say that it helped with brain development and the respiratory rates in babies increased and were more stable. IQ scores in older children who received caffeine as babies were on par with the other children. This totally made me laugh. All I want is a healthy baby without going through caffeine withdrawals. That's it!

Cool feeding tube Adele!

Baby Adele is changing every day and even though I am totally biased, I think she is just the most darling little girl. She is sweet and cute and lovely and wonderful. She loves to curl up into a little ball on your chest and will start snoring because she feels so comfortable and at ease. Brinley has spent some time with her sister and loves to hold her and touch her feeding tube. She isn't too sure who she is but we keep telling her that she has a sister and that we love them both dearly. I'm pretty sure that when Adele comes home, Brinley will want her to go back where she came from.....

So precious!

The past few days have been emotionally draining for me. I think that my hormones are out of whack, so that doesn't help with keeping my mind healthy and taking time to just relax and enjoy our family. James, Brinley and I went to visit Adele, and every time we go, a piece of my heart breaks when I leave her in the hospital. I feel that I am not spending enough time with her, I feel that I should be there all day, into the evening. It's so difficult with a 17 month old. I wasn't feeling well yesterday, so I decided to go to the doctor and get checked out. I have a UTI which has gone into my kidneys. After I picked up my prescription the nurse called to let me know how Adele was doing....that's when she told me about isolation etc. I cried all the way home. I cried because I felt awful and was in pain, I cried because I should be holding my baby, I cried because I miss my house, I cried because I totally feel displaced, I cried because James is working so hard to get us back home, I couldn't stop crying. I couldn't talk on the phone with my sister, so I had to text her and every time I sent a text, I cried. I texted my dad and I cried. I really want to get life in order, get back home and get Adele settled in her new life with her family. I know that she is in the best place right now and is getting around the clock love and care, but I still worry. While I was cuddling with her today, her red alarm went off a few times and nobody came in. My heart was in my throat and I froze. I knew somebody would come, good lord, it's a loud alarm. NOPE!
I stopped a nurse who was passing by the room and told her about the alarm, she said that it all looked fine and not to worry. I worry, I worry all day and all night. I leave my ringer turned all the way up just in case the NICU calls. I do feel confident that she is going to be just fine, I think it's just a mommy thing, you worry.  The nurses in the NICU adore Adele. They stop by and tell me how much they love her and that they request to be her nurse. This makes me feel great. I know that already, so many people love her and think that she is just the most darling little girl.

I had James read the comments that our friends and family have made about Adele on Facebook, he asked me if he thought people were being so kind because she has Down syndrome?? I told him that if somebody doesn't think a baby is cute, they say nothing or they make a very generic comment. He told me that he thinks his girls are just the cutest but that's because he is their father and he worries that people are just being nice. I told him that I was pretty sure that people feel connected to Adele and that she is loved and adored by so many. She is cute, there is no doubt. When I look at Adele, I see perfection. I see a little girl who belongs here with us, her family.

The other night when James and I were laying in bed, we started talking about when we found out that Adele had Trisomy 21. For one whole day we had decided that we couldn't move forward with the pregnancy. There was no way that we could do it. What do we know about Down syndrome? It would be too hard. Every day after that, we were moving forward and we were pretty confident that we could do it, we love our child. As we look at Adele now, we are so thankful that we made the right decision. We made a choice to continue with the pregnancy because she was ours and we were chosen to have this baby. We are great parents, we will make mistakes, many of them over the years, but the one thing that we know is that we love our girls, unconditionally. We love them madly and deeply and we will do our best as parents to give them the lives that they deserve, filled with respect, love, support and encouragement.