Sydney's Journal

Hi Everyone! I have created this blog so I have a place to update everyone on how Sydney is doing. I'm also writing this so that Sydney can see where she has been, what she has survived, and where she came from in the future. I think that I also need a place to express my feelings about the struggles of her life so far. Everyone is welcome. Please feel free to post comments. Sydney, Vince, and I would love to hear from you.

Why was Sydney born early? Click here


Friday, June 30, 2006

All together

We are finally all home. It has been wonderful. We love holding her and taking care of her. She is a wonderful sleeper. We have had to set an alarm to ensure she gets fed every 4 hours. She slept for 5 hours the other night. The other night, she just did not want to sleep, and her daddy stayed up holding her. She was not crying, she just wanted to be held and loved.

We have been taking lots of videos and pictures of her. I'll post some soon.

It is a wonderful blessing to be under the same roof. I just love having us all together as a family. It is so nice to have her home and not have to get dressed to go see her.

We took her to the pediatrician today. She weighed 4 pounds 11 ounces. She was so good at the doctor's office. He said that she looks wonderful. We go back next week for a re-check.

Well, we are all together now, but soon will be apart. Vince goes to 33 days of training on July 4. We will miss him so much. We are just trying to enjoy today, because worrying about what will happen won't stop it from happening.



Tuesday, June 27, 2006

Hallelujah!!!!

Guess who comes home tomorrow? Yup Sydney. Saw the doc today, and he said let her go home tomorrow. YEAH!!!!I am having her come home on a monitor for my own piece of mind, but otherwise she is coming home tube free! No oxygen, no nothing. I am so excited, and so busy now, because I have to get everything ready. Short post, but it speaks volumes on how happy we are.



Getting there

Short update....

Sydney gained weight yesterday. She has been on total bottle feeding since Saturday, and gained weight! She now weighs 4 pounds, 9.6 ounces, a new high weight! She is struggling with breast feeding but we are working on this. Hopefully she will be coming home any day now. We can hardly wait.



Sunday, June 25, 2006

Closer

Guess what Sydney did today... She breast fed. The doc on today wants me to breast feed her whenever I am there. She latched on after crying, and nursed. I don't know how much she actually ate, because after she nursed for about 20 minutes we offered her a bottle, and she ate 27 ccs. She did very well with not desating while she was nursing or eating her bottle. She is getting closer every day to coming home. She had some desats while we were not there that needed oxygen to resolve them, and the doctor wants to not see these. Sheis still off the oxygen and the feeding tube. She lost half an ounce, and weighs 4 pounds 8.5 ounces.

I learned yesterday that Sydney has been in the NICU the second longest. The baby who has been there the longest was born a week before her, and was 3 months early. We were once warned we may have her that early, and were very blessed to have her hang on until 34 weeks. So I was right that everyone else has gone home but us. I keep trying to be patient, but my patience is getting thinner. I feel we are very close to having her home, and can hardly wait.


Yeah, no pictures of her nursing. I do have some new pictures of Sydney to post.


Sydney and aunt Brit.


Sydney in her cute red, white and blue dress.


Look, my first brain squisher.


Sydney asleep.


My hand and Mommy's.



Saturday, June 24, 2006

What is missing from this picture?

Can you guess what is missing from this picture?


Look Mom... NO TUBES. I Finally got to see her little face sans tubes. I don't think I had ever seen her without some tube on her little face. They changed her feeding schedule to one where she has to eat 30 ccs, but can eat more if she wants, every three hours. She was doing wonderful with that, as well as with her oxygen levels until 3pm this afternoon. The nurse gave her the nasty baby vitamin, and she shut down. This is the first time she had to take it by mouth, and she hated it. They smell NASTY so I don't blame her. Thankfully, she had eaten enough extra over the 30ccs earlier in the day to add up to 30, so she did not have to have the tube put back in.

So we are closer to having her come home. I am telling EVERYONE there that we are ready to come home. While I am patient with this process now, I feel it is important to start pushing the staff members to have discharge on their minds.

Her weight is 4 pounds 9 ounces today. She was so awake and interacting while I was there. I really wanted her to sleep, and I laid her in the bed, but she refused to sleep. She just wanted to play.

So in a nutshell, Sydney is making progress, but mom and dad are losing their patience. I thought she would be home weeks ago, and we are still there. Part of me wonders why they decided to not give her caffiene and oxygen. I also want to know why she had to wait so long to get the blood transfusion. She was anemic from day one. Maybe if her red blood cells were higher, she would have been able to make progress faster.




Thursday, June 22, 2006

Due Date

Today is the day, that had all gone well, Sydney should have been born. I write today to mark the many ups and downs that have happened over the last nine months.

Ups:
  1. Seeing the positive pregnancy test.
  2. Telling Vince I was pregnant.
  3. The relief we felt after hearing her heartbeat when we were fearing we had lost her.
  4. Hearing her heartbeat over and over.
  5. Feeling her move for the first time.
  6. Whenever I felt her move.
  7. When Vince felt her move for the first time.
  8. My sisters' reactions when they felt her move.
  9. The strength we have gained through faith in the Lord.
  10. Being blessed with excellent medical care.
  11. Hearing her small cry after she was delivered, and seeing her small little body.
  12. Holding her for the first time.
  13. Whenever I hold and kiss her.
  14. Seeing Vince interact and love her.
  15. Watching my family hold and love her.
  16. Giving her a bath.
  17. Seeing her wonderful smile.
  18. When she finally ate her whole bottle.
  19. Watching her scream as I do a normal mother thing that makes a baby cry: changing her diaper.
  20. When I guess what she is crying about right.
  21. The support we have received from family and friends.

Downs:

  1. Spotting and ending up in the ER after finally getting pregnant and fearing I was losing her.
  2. Hearing there was a problem with the triple screen test.
  3. Having to sit there as the ultrasound tech went to get the doctor because she was concerned about what she was seeing on the screen.
  4. Worrying if she had Spina Bifida.
  5. Worrying every time they put the ultrasound wand on me that she would still be there alive. Once she started moving, I could relax about that one.
  6. Being told she was coming early, that my placenta was failing.
  7. When she parked her head in my hip, and gave me sciatica, which still exists.
  8. Talking to a neonatologist (who did a wonderful job) about hospice care, and what we should expect with a very early baby. Thankfully she stayed put longer than expected.
  9. Worrying about what the next ultrasound would show.
  10. Dealing with work and having to go on bed rest.
  11. Being on bed rest. How boring and inane day time TV is.
  12. All the non-stress tests. All the waiting at the doctor's offices.
  13. Having to have an early c-section.
  14. Being told the non-stress test was not positive at 30 weeks and that I might be having her that day.
  15. The way I swelled up after the steroid shots. (The steroid shots did wonderful things to her lungs, but no-so wonderful things to me.)
  16. Being told I can't hold her.
  17. Getting a cold sore and being told I can't see her.
  18. The frustration at how slow she is learning to eat.
  19. Leaving her in the hospital to go home.(Every time)
  20. Having her whisked from the c-section room and worrying how she was doing.
  21. Tape Burn from my c-section bandage. (Hurt worse than the incision)
  22. Healing from surgery while having to go to the hospital to see my baby.
  23. Being back at work 2 weeks after having her because I used all my leave and most of my FMLA time while on bed rest.
  24. Dealing with the social worker.
  25. The frustration at the lack of control over our lives.
  26. That she is still in the hospital. I swear everyone else in the NICU has already gone home.
  27. The stress that this is causing on myself, Vince, our families and friends.
  28. The guilt I am feeling because my body failed my little girl. I know I did nothing wrong, but I still feel that I let her down.
  29. The feeling that I just want to pick her up and leave, knowing that I can't do that.

Vince and I have been very blessed to have her in our lives. Today I am feeling rather down as it is her due date, and she is still not home. I was sure we would be home before now. I am now worried that she won't come home until after Vince leaves, and I won't get to have my little family under one roof for another month. I don't want to take her home from the hospital without him by my side.

I am very ready to move onto the next challenge in our lives: Having her home with us. The nurses do wonderful things, but I want her with us. I hate leaving her there. I hate laying her down when she wants to be held.

Today is the day that I should have had a healthy, fat baby. I was blessed with a small, scrawny baby instead. Her being born early meant we got to meet her early, and learn about her. We love her so much. Today I just can't help but grieve for what might have been. Looking like I was going to pop. Feeling a contraction and pushing her out. Holding her right after she was born. Taking her home with us. Having her home. Breast feeding her. Being alone with her. Having family and friends surround her. Taking her to the doctor's and having everyone fawn over her. (I go to my last check up tomorrow.) I know that we are very blessed, but today, I am mourning what will never be, and it is a large and painful loss to grieve.




Sunday, June 18, 2006

Happy Father's Day to Vince


It's Vince's first Father's day. Yipee!!!

He is wonderful with Sydney. He worries over her every noise and gurgle. It is so cute to watch them together. He reads her stories and is very protective of her. Sydney weighed 4 pounds 6 ounces, up almost 3 ounces.

Sydney ate 22 ccs at her morning feeding, and 24 ccs at her night feeding. FYI, your average 12 ounce can of soda contains 355 ccs, so you can tell how little she is eating at a time. The number of ccs she is given at a time was increased to 38ccs. She is eating nearly 2/3s of her bottle. She did really well today, and ate the first 15 ccs rather quickly and with few problems. The last bit took some work to get her to eat, as she was desating during this part.

I've also added a picture of her next to the bear that her "chatca" Paula gave her, so you can see her size. She has started to out grow some of her smallest things. She has out grown the first hat she was wearing, the little pink one with flowers. To see the earlier picture of her with the bear click here.




Friday, June 16, 2006

She ATE!!!


Sydney FINALLY ate her whole bottle. This is a MAJOR milestone for her. She did very well with it. She barely had any desats and had not heart rate problems. She had been shutting down during her feedings, and going to sleep. Today, she stayed awake and alert though the whole feeding, and after as well.

We were so excited, our nurse took a picture of my daughter, me, and her almost empty bottle. She finished it after the picture. This is the FIRST time she has not needed the pump to finish her feed. She ate 34 ccs today, a big jump from her usual average of 11 ccs.

WAY to go SYDNEY. We love her so much.