It has been almost 2 weeks since we put Sienna in her mausoleum drawer. it was an extremely emotionally difficult day but with it has come unexpected peace in my heart. I know she is where she needs to be and I'm surprised at how I am doing. I actually feel good. They allowed me to place her in the crypt instead of taking her from me. Usually they don't allow family members back there while they are sealing up the crypt, but they allowed me and my husband to lay her in there and place the letters we wrote to her next to her urn. We stood there as they sealed up the tomb and placed the new nameplate on that read " Our Angel, Sienna Marie Howard, December 15th, 2011" I am so thankful to my grandparents and all they did for her. My gram cried at the funeral and my husband lost it when he placed the letters in. It was definately the heartbreaking day that I knew it would be, but i expected these weeks after to be horrible and they haven't. I stopped to see her last week and cried a little in front of her drawer, it was early and no one was there so i played her that song that i blogged about in the last blog, since i have it on my phone. it was so quiet in there and then playing that song for her and being there with her just me and her, it felt nice. It felt like she is finally where she needs to be. I would have never been able to move on without her being laid to rest. Although i will always remember my guardian angel, my heart has peace now, something i thought i would never be able to find. I know my little Sienna is helping piece my heart back together.

Heart beats fast
Colors and promises
How to be brave
How can i love
when i'm afraid to fall
but watching you stand alone
all of my doubt
suddenly goes away somehow
one step closer

i have died everyday waiting for you
darling, don't be afraid i have loved you
for a thousand years
i'll love you for a thousand more

time stands still
beauty in all she is
i will be brave
i will not let anything take away
what's standing in front of me
every breath
every hour has come to this
one step closer

i have died everyday waiting for you
darling don't be afriad
i have loved you for a thousand years
i'll love you for a thousand more
all along i believe i will find you
time will bring your heart to me
i have loved you for a thousand years
i'll love you for a thousand more

one step closer

Sienna was put to rest on last Saturday, ...a day that will live in my memories forever. Our priest said some wonderful things...one thing he kept repeating was "do not let your hearts be troubled" I think alot of parents on here who choose what we chose have troubled hearts. We got Sienna beautiful white roses in a pink vase with Precious Daughter inscribed on the ribbon. The nameplate was difficult to look at. How can I be burying one of my children at 27? Why did this happen to us? My grandmother has been so wonderful through all of this. She has cried with me and offered her mausoleum drawer for Sienna. She has realized how much Sienna was my daughter even though she never took a breath. The rest of the family actually gets mad at her because she cried at the funeral. I feel that she feels some of the pain that i feel, and for some odd reason, it's comforting....her showing me her feelings has helped me more than the people to figure not talking about it will make it better. My husband held strong until he put the letters we both wrote to her in her drawer, then he lost it. I immediately stopped crying to be strong for him. It's amazing how that instinct kicked in. They were very respectful of my wishes. I didn't want anyone carrying her. So they allowed me to put her in the crypt and we stood there as they sealed it up. Some family members thought that was wrong of them, but i didn't want anyone taking her from me. She was in my sight the whole time and i know where she is exactly. I stopped there this morning on my way home from work. I played a song for her off of my phone that always reminded me of her...our journey. I think the song is made for a wedding but i can make every single word fit our situation. one line is "beauty in all she is" and i'm very sure my Sienna was beautiful. This was a day we did not want to see come, but it has brought us some peace. I could have never even thought of another child until my little Sienna was at rest and it was complete. Now, with Sienna's wings wrapped around us and a guardian angel forever for her big brother...we try to move forward as a family....never to forget.

It's a terrible day, I've cried most of it....thinking that it's the last day my little girl will be here at home, the last night she'll spend here with us. She will be going to Lincoln Memorial tomorrow for her service and be put in her drawer. There will be many pink roses laid there for her. I called the priest today and told him the entire story of Sienna and what happened to her because I needed him to know. I felt better after telling him everything. He is such a wonderful priest. He married my husband and I and baptised our son Jake. I am scared for tomorrow, i hope my knees hold up strong. But i know Sienna will be there with me the whole time hugging me and kissing my tears away. I love you baby girl, today and forever.

Today we found out that Sienna's Mausoleum drawer is ready with her nameplate and date she earned her wings on it. I was late for work tonight and was going to stop to see it but I couldn't. I'm so scared to see it. to make this all the more real than it has already become over the last month. The first month was such a blur......i was in another place with everything i did...the last month now has cleared and with it becoming so real are coming with some awful grieving. One second i'm completely find and able to talk about what she had now and not cry...the next second i'm a blubbering mess. Sienna is still at home in our curio in her beautiful urn where she has laid for the past 6 weeks. but it is time to lay her to rest on sacred grounds. We are going to have a little service for her. I think I may read aloud the letter I wrote to my little girl. My entire family will be a part of it, just as this little girl was a part of all of them. My family wasn't the kind of family that waited to buy things for a baby. My grandmother bought Sienna a giraffe which i'm going to ask her to lay in the drawer with Sienna to keep her company. I miss my baby girl more every day and this is not getting easier. It's getting so much more real that her room was never started even though i knew what it was going to look like in my head. That the crib isn't together or some new clothes or diapers aren't up there. Everything would have been ready by now with only 8 weeks to go. I went to church on Wednesday for ashes and cried the whole time i was there, we light a candle for Sienna and i just stare at it the whole time. It's becoming so much more real that I'm not pregnant anymore, that she's not kicking anymore. I pray to her to please help give me strength because i need her more than ever.

So while searching the internet for possible causes or links to cdh, i was looking at the possible link between cdh and vitamin a deficiency. As i started putting more and more together I started seeing weird patterns and even though it's not confirmed this is still hardly a coincidence i think. My gallbladder was removed about 1 year after i had my son ...they said the pregnancy caused the gallstones and i had to get it taken out. After looking into the vitamin a deficiency ...i looked into gallbladder removal side effects....one of them is mal-absorption of fat soluble vitamins....of course vitamin a is fat soluble. During the pregnancy I took my prenatal vitamin and my cravings hit like crazy .....the weirdest craving was carrots...i could eat bags and bags of them and i don't even eat them on a regular basis, not even voluntary. but pregnant, i couldn't get enough. carrots are a extremely high source of vitamin a. So with my gallbladder being removed causing insufficient absorption of vitamin a to begin with, causing a deficiency in myself, then getting pregnant and craving the carrots like my body was telling me i needed the extra vitamin a, does this really all seem like a coincidence? anyone else put anything together?

So we have a beautiful little 4 year old boy and who to this day has just been perfect besides all the little things that happen to kids. Last night while on here reading all the other parents' stories, i came across a mom who had a son who was 5 and presented with late presentation cdh. After that i got into the forum where so many people are dealing with having another child with cdh. My son for the past 2 months seems to have been sicker than normal, first with strep, then right when we lost Sienna, he came down with an awful vomitting bug and then 2 weeks later after that a terrible cold. The only thing is that through all of this he is constantly complaining of a tummy ache, to the point of every single day. The mom who posted about the late presentation cdh said her son always had tummy aches and she always passed them off as indigestion. Well that started the rollercoaster today. By 8:30am i was on the phone to the doctor after reading several journals about late presentation cdh and jake had symptoms and my heart sunk. I couldn't keep myself from thinking is that why we lost Sienna, was to help me find out what this was and help our little boy? The questions killed me all day. After seeing the doctor and telling her what we lost our baby to, she seemed as worried as i was and ordered the chest x ray and abdominal x ray to r/o the cdh. I was sick. Took him for those immediately after, got a call from the doctor 2 hrs later saying everything was right where it should be and there is no defect in the diaphragm. it was like 30 bricks had been taken off my shoulders. We're starting to try famotidine tonight because she thinks he definately has some type of acid problem that is triggered by certain foods and stress....his belly hurts when he gets in trouble or doesn't want to go to preschool. Hopefully that all helps. But wow, what a rollercoaster ride. Something that i would have never thought of until Sienna and it completely correlated with his symptoms. it's amazing how she has changed my life so drastically and the little things that i do not take for granted anymore without her here.

Originally Posted by Danielle Howard

Sienna was my second child, she had a left sided hernia with stomach and part of the liver up in her chest cavity that was able to be seen on an ultrasound at 20 weeks. This is our story, one in which i hope helps others as other's stories on here has helped me realize that i am not alone.

We found out we were pregnant in August, I'm very sensitive and one that just has to look at my husband to get pregnant so we knew right away. I was dealing with kidney stones a week prior to getting pregnant which i'm not sure if any of that played a role in this. During the time that they say the diaphragm closes between 7-10 weeks, i was on a couple different drugs (ones that my dr's assured me were fine taking while being pregnant ) and also had twilight surgery to remove the stent they put in from the stone that was blocking my urine and causing kidney damage. We did not have the first trimester screening, one i'm kicking myself for now because maybe we would have found out about all of this earlier. The pregnancy went along perfect. No bleeding, all the usual complaints, being sick, getting acne....i knew right from the start it was a little girl. The few things looking back now that i notice is that her heartbeat was always difficult to either find or keep on our doppler. She always seemed to dodge it. With her heart being over the whole way to the right now, i can see why you would have a hard time getting it on the doppler. We went in for the 20 week ultrasound. I started to get nervous about an hour before the ultrasound thinking of all the things that i wasn't thinking about the whole pregnancy....what if she wasn't ok. My husband was so excited the whole day along with our 4 year old perfect little boy. He kept telling me i was ruining it because i kept saying i was worried. We got in there and she kept taking so many pictures, pictures i know they didn't take when our little boy Jake had his ultrasound. Detailed pictures, ones which now i wish i would have asked to have a copy of. After everything was done, she left the room then came back to tell us the bad news. I'm in respiratory at a hospital and am very educated when it comes to medical things so when I didn't know a thing about what the baby had, i was shocked. Then the tears hit...i lost it in front of my 4 year old who was so confused. The tech didn't even tell us the sex of the baby...to confirm what i already knew. My entire family was waiting for us at my grandparents house to hear what it was....and as i walked in i lost it again when i had to tell them we didn't find out for sure because there's something wrong with the baby. I then hit the internet which only made things worse as i found out more of what CDH was. I also have a friend who works in the NICU and she also knew what it was and told me the truth about what was going to happen on Monday at the genetics office. After that appt and speaking with 3 different doctors and 2 ultrasound techs, they all said the same thing. It was bad and she was in the lowest percentile to survive. We were then given our options. I saw my husband cry for the first time in 10 years that day, which actually made me stop crying to be strong for him. It was terrible. We made the decision to medically terminate the pregnancy at 20 weeks. Two days after the genetics appt, we went in to have the dilators placed in which was traumatic in itself. They sent me home for 24 hours. Those 24 hours of feeling her kicking and talking to her were the worst as i felt like i was saying goodbye everytime i touched my belly. We went in the next day for the D&E. Laying in pre-op I started to feel Sienna turn. She had been breech the whole time and although i always felt her acrobats in my bladder my husband never could. But after she turned she continued kicking and you could finally feel her above my belly button. Moments before they took her from us, my husband finally got to feel his baby girl kick for the first time. I went under and woke up without my baby girl. The hospital baptised her for us and gave us a memory box to keep for her. We had a funeral home go and get her to cremate her and picked out a beautiful urn for her that is hugged by an angel. She is at our home now and will be set in my grandmother's mausoleum drawer as soon as her name plate is ready. These past 4 weeks have been horrible. No one knows what to say to us. My husband has been my rock through everything. No matter when i cried, how hard i cried, he just knew to come over put his arm around me and sit there with me and let me cry. I wouldn't have made it without him or my little boy. My sweet Jake just somehow always knew to come over and could make me feel better with just one of his smiles. He prays to his little sister every night ever since we told him she went with the angels up to heaven. My little boy Jake and my husband are the reason I make it through each and every day, I know they need me to make it. And that's how i deal with all of this one day at a time.

I'm so thankful for a site like this. People have started to slowly fade away as more time passes, so it's nice to know that there are other people out there who know that time doesn't really help this. I had a very hard time dealing with all of this with my religion as i am catholic. I kept rethinking my decision. But then i had a friend tell me that God does not punish those who sacrifice themselves out of love and that I loved my baby Sienna so much that even though I knew it would kill me inside, I set her free.