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View Full Version : missing dd (very very long)


lorli
02-18-2007, 08:27 AM
My precious dd would have been 4 on February 28. Each year as the date approaches I feel sadness and depression hit like a vegence. I miss her so very much and needed to put my emotions and feelings to words. Thank you anyone who takes the time to read this.

In August of '02 we received the exciting news that we were expecting our second child after false negatives which saddened me thoroughly. I took a home pregnancy test, I was pregnant, went to dr. and they gave me a urine test, I was not pregnant but come back in a week and we'll test you again incase it is a false neg. but that doesn't happen very often. I was so upset and could not believe that their test was correct, I ran our and bought another test the very same day and took it the next morning, I was pregnant. DH knew how upset I was and went with me for the next test, the lab tech, the nuirse and the dr came out to congradulate us, they knew we wanted to be pregnant and have a second child.

It was a miserable pregnancy, I was sick with pnemonia for the first tri-mester
on and off antibiotic because my high risk obgyn and gp didn't want to do anything the cause problems with the baby, I was always treated with low doses of antibiotics. The pnemo was so severe I could not walk our hallway at home with out becoming seriously winded, so no work for me, in fact no nothing, but you have to eat regularly beause of gestional diabetes and that was the last thing I wanted to do. Finally I'm cleared to work in the middle of January. I was back to work for less than a week, had a dr appt not obgyn, fell while holding dd (18 months) right on my stomach. Called the ob gyn, he was out of town go to the hospital to be monitored. Baby looked good, but blood pressure was off the charts, we'll need to keep you. After the covering dr came to see me, he said my dr ( a specialist) was gone for 3 weeks and his practice was unable to care for my needs and I would need to go by ambulance to a hospital one and a half hours away that specializes in high risk prgnancies and has a wonderful NICU. If my baby delivered she would be 14 weeks early, not an option.

I was hospitalized for almost a month far from home, dh came to see me almost daily, and brought dd to see me 2-3 times a week, I did a lot of crying, but all of this was worth it to give our dd every possible chance. It was touch and go whether I would deliver, we were given all kinds of statistics of low weight babies and prematurity. The first week I was in I was in and out of labor and delivery 4 times becasue they were afraid I would need to deliver. Baby and mom started to stablize, dr got home and in contact with hospital, I wanted to go to home hospital, I wanted to be closer to home. Dr arranged for the transfer dh and I paid out of pocket for me to transfer by ambulance to home hospital. I was in for the weekend and dr said you can go home, I can do the same thing seeing you everyother day or more in my office. Monday went to see him, it doesn't look right, the blood flow in the umbilical cord is slower than it should be, see me tomorrow. Wetn back Tuesday, there is no change come back tomorrow and if no change we'll have to discuss options. Went back on Wednesday and there was no change, deliver on Friday and dd will be in our NICU.

Dr called Friday, he called, not a nurse, knew it wasn't good. I will be delivering triplets within the hour and that will close the NICU, but you need to deliver to day, you need to go to the other hospital, I cried, told my dh, we cried together. MIL was at the house to watch 18 month old dd so we had that covered, got ready and kissed and hugged dd and left on our hour and a half drive, I cried and cried. Not only scary to be far away from home but change is always hard.

Our beautiful daughter, Kristiana Leigh, was born 11 weeks premature at 1lb 4oz and 12.5 inches long. She was born at 5:40pm at Strong Memorial Hospital in Rochester, NY. Because she was a micropremie she was taken immediately to, NICU and we were unable to see her until about 3:00am. It was the longest time I have ever had to wait. After I was discharged, we traveled daily to spend time with, get to know, love, and cherish our daughter. Once or twice a week we took the two year old with us, Caitlyn. She only got to see her sister twice but she was well aware of her presence and nicknamed her "Nina. When she was born the doctors told us it looked like she had a genetic disorder called Crouzons, plates in her skull were fused together. We were assured this was not life threatening but she would require surgery at about nine months corrected age and again at 2-3 years old. She also had three holes in her heart and two of them closed before her death. Included in her complications was a diaphragmatic eventration. This became problematic because she also developed BPD Bronchopulminary Dysplasia. This is a problem for babies who need to be on a ventilator for extensive amounts of time.

As each milestone came and went, we celebrated Kristiana getting closer to coming home. At about three pounds she moved from an isolete to a crib, this was so exciting, to see her in a crib with a mobile over her to enjoy. This also allowed us access to her without having to ask the nurses to get her for us. She was extubated for a short time and this really gave us hope. Things took a severe turn for the worse. She was struggling to breathe and keep her oxygen levels up and was reintubated two weeks later. After an echocardiogram we were told her heart was not working well and the remaining hole in her heart was allowing blood flow to go backwards through her system. There was still a shred of hope. She was placed on steroids to see if this would improve her lungs that would allow her heart to work less strenuously. She was given a repeat echo that showed no improvement, the worst news we could have been given.

The last three weeks of her life I lived at a Ronald McDonald House so I could be with her, know her, love her, and let her know and love me. Pat had to return to work, so he was traveling daily after work to spend time with her. Even though most of the time I could not hold her, I spent hours with her, placing my hands on her, reading to her, talking to her about us, her sister, her grandparents, aunts, uncles, cousins, her house, her room, anything I could just to let her hear my voice and feel as much comfort as I could provide. There were times I was able to lay my head down next to her and almost fall asleep with her.

Pat and I held her and rocked her at the end,the nurses watched with tears as we comforted our beautiful Kristiana for the last time, on June 30, 2003.

Mommy loves you Kristiana!

Pea-n-Me
02-18-2007, 09:46 AM
What a difficult journey. But your story is a beautiful tribute to your daughter. :hug:

Christine
02-18-2007, 11:47 AM
Wow! What an incredible story. I'm so sorry for all that had to happen to you and your baby. I am so happy that you were able to see her and spend time with her, even for just a short while. I'm sure you will never forget her. And telling your story here lets all of us know her a little bit as well.:hug:

TomB'sWidow
02-18-2007, 11:50 AM
So sorry for your loss:hug: prayrs and much love are sent your way.

Goofyluver
02-18-2007, 01:18 PM
I'm so sorry for your loss. But, you described in beautiful detail your journey. My prayers are with you.

lorli
02-18-2007, 01:45 PM
:grouphug: Thank you everyone who took the time to know my little angel. She had the strength of 50 elephants for her short 4 months that had to rub on to me to help me to go on and raise our other dd. She was pure joy and I will remember her always.

Pea-n-me and Goofyluver - thank you I took extra special care to write this
after she died to help me grieve and
heal!:grouphug:

Christine - Thank you for recognizing the need for a bereaved parent to let
others know her her child, it truly means alot.:grouphug:

TomB'sWidow - thank you for the love and prayers:grouphug:

annrae
02-18-2007, 06:17 PM
Hi: Thank you for writing about your feelings and your second DD. We also lost a DD and the pain is unbelievable. Our first daughter was 8 at the time so it was so difficult for her. The nursery was ready and she was so excited about having a sibling. This was a few years ago and the boards did not exist at that time and there were no support groups in the area so my DH and I were quite alone with our grief. Life goes on but there will always be this void in our hearts. A year later, we had a beautiful baby boy!

ColleenS
02-18-2007, 06:39 PM
Thank you for sharing the story of your beautiful daughter with us. Even though her life was short, it was special.

Do you have a picture of Kristiana you'd be willing to share?

Philagoofy
02-19-2007, 09:17 AM
I can't begin to know the heartache you feel each day for your sweet little daughter. I'm sure she will be remembered by those who helped her and those of us with whom you shared your story. Kristiana sounds like she was a special little girl, fighting hard with a very special mommy & daddy who love her very much.

My heart goes out to you and I hope with every year, you will feel stronger while still remembering your special little sweetheart.

cancer_survivor_06
02-20-2007, 11:56 PM
My prayers are with you and your family. I know to some extent how you feel. In Aug 2003 my youngest DD was born 4 days after her due date at what was an unhealthy pregnancy. I only gained 10 pounds and had trouble with passing out alot especially while I was at work and once I busted my nose on a counter at work. My dd was the biggest of my two weight 7lbs6oz. That day her blood sugar dropped to 7 so I am very lucky to have her. She was in the NICU for a month and when she left they still couldn't tell me what was wrong and it was almost a year before they gave her a diagnosis of Septo-Optic Dysplasia. I don't believe in this diagnosis just because two of her scans show a possible stroke. To only make things worse the day before her first birthday I was diagnosed with cancer. We have had some major struggles through out the past two years but we are doing good. I am sending lots of :grouphug: and prayers your way for you and your family.

cheriemek
02-27-2007, 09:29 PM
:grouphug: I can tell how much you miss your little angel.

klmall
02-27-2007, 09:51 PM
Thank you for sharing your daughter's life story. In some small way I hope it helps. My sister lost two babies late in pregnancy and then her son at three weeks old of an entirely curable heart defect if proper diagnostic tests had been done. We traveled with her to Philadelphia to help her and I got to hold my precious nephew for a few minutes before they let him go. It was so hard for everyone but it must have been unbearable for my sister and her husband. She has found comfort in her other sons and her family and I hope that is true for you also. Bless you!

luvsmickeymouse
02-27-2007, 11:25 PM
:grouphug:

Philagoofy
02-28-2007, 01:01 AM
Thinking of you today. :grouphug:

What a pretty name, Kristiana Leigh. Your sweet little baby will always be remembered.

travellady
02-28-2007, 01:07 AM
lorli - I understand your pain and know that telling your story hurts at the same time it helps. Thanks for sharing.

I lost a daughter at 4 months, Katie Lyn, due to a genetic disorder called Trisomy 18. She would have been 14 next month - March 19. She left us on June 4, 1992. Those dates are etched in my mind forever and simple things, such as buying milk and seeing an expiration date the same as one of those two dates brings back a flood of memories. But, it's important we never forget what these little ones added to our lives, despite their brief stay.

Philagoofy
02-28-2007, 02:40 PM
lorli - I understand your pain and know that telling your story hurts at the same time it helps. Thanks for sharing.

I lost a daughter at 4 months, Katie Lyn, due to a genetic disorder called Trisomy 18. She would have been 14 next month - March 19. She left us on June 4, 1992. Those dates are etched in my mind forever and simple things, such as buying milk and seeing an expiration date the same as one of those two dates brings back a flood of memories. But, it's important we never forget what these little ones added to our lives, despite their brief stay.

:grouphug:

carrie s
02-28-2007, 04:20 PM
Im so sorry.:hug:

Juliet25
03-01-2007, 05:33 PM
I am so sorry for your loss. :sad1:

Belle041281
03-01-2007, 05:41 PM
I am so sorry for your loss. Thank you for sharing your DD's story. She will not be forgotten.

mdsouth
03-02-2007, 09:35 AM
:grouphug: Thank you for sharing your story of your daughter's short life here on earth. My sympathy to you and your family. The message you wrote is a wonderful tribute to her. It is one that your other daughter can cherish over the years.

The process of writing is an excellent way for people to release emotions. For myself, often through the process of writing, I am able to work though sadness, and anger. It is a way to validate your feelings.


:grouphug:

lorli
03-02-2007, 06:50 PM
Thank you everyone for your kind words and support. Wednesday would have been her 4th birthday and it has helped me to tell you all about her. On her birthday we sent balloons with messages to heaven for her. DD (5) loves to do this and watch the balloons go to heaven for her sister. She asked, "Will Grandma read the notes to Kristiana?" My mom died 2 years after when she was almost 4 and so she has had a lot of loss in her short life and knew Kristiana would never be able to read by herself. Then DH and DD went to dinner ( we usually celebrate her birthday) I fell sick with a stomach thing, so I was just as happy to stay home and have crackers. Anyways, thanks everyone