Sunday, December 13, 2009

Six Months




I spent the day looking through your pictures and watching the little videos we took of you. It makes me angry that I can't figure out what went wrong. People that never got to see you expect to see a very sick baby when they first look at a picture. When they see how perfect and beautiful you were it amazes them that you could have been so sick. Obviously, in every photo you have a breathing tube, but even with that you were gorgeous, a very pretty baby.


I am not going to lie anymore Kali, this hurts really bad. I don't know how I made it this long. I didn't think I was going to make it the first 6 seconds, 6 days, 6 weeks....never thought I was going to still be standing 6 months later.


Some days I have to remind myself to breathe. I have to tell myself that I did all I could. I have to remind myself that I gave you every ounce of love in me so you could feel tremendous amounts. I just wish I could see you again, hold you, kiss you, rock you, and sing to you. Just one more time I want you to look at me when you hear my voice, smile for no reason, be the little cutie that only you knew how to be.


Missing you is an understatement. There isn't a word or words to describe the huge gut wrenching feeling losing you gives. I literally feel like pieces of me are missing, like they went with you.


I love you so much Kali. More than I could ever say. And I will always miss you, always love you, and always cry because I don't have you.

Thursday, November 26, 2009

Happy Thanksgiving

I wish you here Bug, I would have so much more to be thankful for then. I am very thankful for the time we did have with you. I realize that some people aren't lucky enough to have the time we did. But no matter how grateful and thankful I am for that time, I still miss you like crazy. My heart literally hurts because you are not here. One thing people forget is the physical pain that missing someone causes.
We love you baby girl, we wish you were here.....

Friday, November 13, 2009

5 months


Five long months have gone by baby girl. The amount I miss you increases more and more. Mommy is trying to stay strong, trying to live for you each and every day. There is not a single second that goes by that you are not on my mind or in my heart.

The holidays are coming very quickly. Last year at this time I was so excited thinking about what it would be like when you were here. Another little one to chase after, another little one to brighten up the day. It is heartbreaking that you won't physically be there with us. You will be there in our hearts though, definitely not the same.

Your big Sis Sis has been talking about you a lot lately. You two never got to meet but she always used to give my belly kisses while you were inside it before she went bed. She would give you a kiss and "Go night Cow-ee". She misses you so much. She tells everyone that her "Cow-ee" is a pretty angel in Heaven.

GoGo misses you too. He is such a great big brother. So proud of his job in the family. He was so excited to meet you and when he finally did he talked about it to all of his teachers for days! He was student of the week recently and the picture of you and him was displayed proudly in his case.

Daddy misses his baby girl a lot too. He is such a good daddy and sometimes I sit here and watch him with your brother and sister and can picture him taking such good care of you. He loves you so much.

We all love you, we miss you more than words can ever say.

Tuesday, October 13, 2009

Four Months


Four months have come and gone. They just sort of pass right by without me even knowing it. I have been back to work for a little more than a month and it is hard. The things some people say that they think is helpful is actually kind of painful. One lady actually said "She's probably better off now." How she walked away with her face intact is beyond me. I think I was shocked that someone would actually say that to a grieving mother. But like always, I don't say or do anything because I know it would get ugly and I'd probably lose my job, so I take the "professional" road and just walk away.
Hopefully we get started planning your fundraiser that I want to have on your first birthday. We only have 6 months left so we really need to get started.
The holidays are coming too and it's going to be really hard without you here. Last year during the holidays I kept thinking what it was going to be like with you here. I had picked out some gifts that we would get for you for Christmas. Shopping is going to be hard, celebrating anything is going to be hard.
October 15th is National Pregnancy and Infant Loss Awareness day. Everyone is supposed to light a candle in honor of the babies that have been lost. I never knew about this day and think it is sad that something like this exists. Babies are the most precious gift and parents should not ever have to say goodbye.
We miss you a lot. We always will. You will always be our little baby girl!

Tuesday, October 6, 2009

The Pain


The pain of losing you is something that can't be explained.
The pain of losing my hopes and dreams for you and knowing that life can't ever be the same.
The pain hurts differently then anything that I have ever known.
It is pain due to feeling that instead of burying you I should have one day seen you grown.
The pain of never seeing your face again when I want to so bad.
The pain of getting so frustrated about it and trying to be happy when deep down I am so freaking mad!
The pain of not having something that was so amazing and not being able to bring you back where you belong.
The pain of knowing that I will probably live forever and the time it will take until we are together again will be so long.
All of this pain that I feel everyday is worth having you here for the short moments that we were given.
All of this pain is worth it knowing that you are an angel Kali and I know you are watching me from Heaven.


I miss you baby each and every moment of each and every single day. You are always, always, ALWAYS in my thoughts, in my heart, and on my mind. You were so strong. You were so sweet. And you were absolutely amazing. I will always love you and you will always be my baby girl. I wish more than anything that you were able to experience a long life here with those that loved you more than words can ever say. If there was an emotion stronger than love, that is what we had for you.
Until we meet again my angel......♥ ♥ ♥

Sunday, September 13, 2009

3 Months


Oh my Kali! Today is 3 months since we lost you. It is unbelievable that time is moving when I feel so frozen. Today also marks mommy and daddy's 1 year wedding anniversary and the beginning of our journey with you. You are our honeymoon baby. You were due exactly 9 months and 1 week after we got married. You made such an early arrival and left us on our 9 month anniversary. You certainly made sure that we would never forget you, forgetting you is impossible! You were such a precious and sweet baby. You mean so much to us.
I have been trying so hard to carry on for you. To live my life for you and not die with you. It is the hardest thing I have ever done. Most days I wish I could stay in bed, but it's just not possible! Your daddy, big brother, and big sister need me to get up.
I went back to work this week. That was so hard. Right after I found out I was pregnant I figured out when you were due, when I would take off for maternity leave, and when I would go back. This was the same week I would have returned to work from maternity leave. It is crushing.
Mommy has been very mad recently. Mad at lots of things because you can't be here with us. It is far from fair. A friend of mommy's said I probably feel cheated and she couldn't be more right. I feel VERY cheated. I feel that daddy was cheated. I feel that Darrin and Marissa were cheated. And most of all, I feel that you were cheated.
I love you my Kali, our little love bug! I miss you sooo much!

Thursday, August 13, 2009

2 months without you.....


I don't even know where to start. I lived these last two months wondering what happened that day. Why did God take you home? I will wonder that forever, until my last day on this Earth I will wonder why God took you.
A lot of people say that everything happens for a reason. What is the reason that babies are born early? What is the reason that babies have to suffer? What is the reason that babies have to die? Why do nasty evil people get to live a long life and my sweet angel (and others like her) had to die after such a short time here?
I did everything I could to try to figure out why things were happening. Every night after spending the day in the NICU I would come home and research, trying to figure out what was wrong, what was the best thing to do next, and where would be the best place to do it. I would have taken you to the ends of the Earth to fix you.
Nothing I did worked, I couldn't protect you, and because of that I feel like I failed you. For that I am sorry Kali.

Slowly our lives are returning to, what is now, our new "normal". I am hoping to return to work soon and to start making things easier around here. No matter what I do any day of any week you are always, and will always be, on my mind Miss Kali. I think about you often and LOVE talking about you and how you were such a precious girl, so full of life and so full of love. I remember days you would fuss and the only thing that would calm you was a little snuggle with mommy. I miss that, I miss everything!
You were a very special girl and you made our little family complete. I am so glad I was given the gift of you, Kali. My life will never be the same because you were in it. You taught me a lot about myself. You taught me a lot about strength, about determination, and about letting go when you don't want to.
I hope you are watching down on us everyday. I hope you are happy. And most of all I hope that you are at peace.

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Monday, July 27, 2009

A Short Slideshow of Kali's life

A picture could never capture her true beauty but I tried. I put together a little slide show of her days with us ( I wish there were more days)......we miss you!





My Love Bug


I love you baby girl. I miss you so much. I promise that mommy and daddy (and even Go Go and Sis Sis) will live for you. You will be in our hearts and on our minds for as long as we live. You made an impact sweetheart and that can't be taken away. To the world you were one person, but to a lot of people you were the world. We love baby, that can't be said enough. You were my angel before you left this earth and you will always be what carries me through!
Daddy got me a kitten the other day trying to lift my spirits. I named him Charlee (which is what I wanted to name you boy or girl but daddy was against it). For some reason I called him Kali a few time. I think it's you playing through him (I swear I'm not crazy). He barely leaves my side. It sure is something!

I started writing again because of you and here is what I've done.


Angel in Heaven

There is an angel in Heaven
She is as beautiful as can be.
I know this angel in Heaven
Because she belongs to me.
This is a special angel in Heaven
She has touched hearts around the world.
She was an angel before she went to Heaven
She was my tiny little girl.
This special angel in Heaven
Lives on in all of our hearts.
This beautiful angel in Heaven
She was strong right from the start.
There is an angel in Heaven
Although she belongs here with me.
Do you want to know the name of this sweet angel in Heaven?
Her beautiful name is Kali.......

From Kali (this is what I'd hope you would say to us to comfort our broken hearts)


Please do not cry for me Mom and Dad.
For I am here, do not be sad.
Please don't cry because I am gone.
I was just not meant for Earth that long.
Please don't cry because I am not here.
Don't you worry because I am near.
Please don't cry when my birthday nears,
Where I am there are no years.
Please don't be sad that I left this world.
I will always be your baby girl.
You gave me a good life, one filled with love.
I will try to do the same for you as I watch over from above.
Days will get easier, nights won't seem so long
And one day you will be able to listen to that entire song.
Please don't cry for me mom and dad
For I am here, please don't be sad.


I love you so much baby and I miss you even more. I wish I could have fixed you, but you beat all the odds all through your life. You were a trooper and you gave us a great gift.....from your the strength you showed we will be strong!

Sunday, July 19, 2009

A Letter to My Girl



Kali, my love bug,
Mommy misses you more than any words could ever explain. The pain that I feel each day is the worst pain imaginable. I don't even think my heart is broken, it is shattered. You meant so much to me, to us. I just don't understand why....why did you have to be born so early? Why did you have to be born with so much wrong? And why, WHY did you have to die??
You were such a strong tough little girl. You inspired so many as you overcame such huge hurdles. You surprised many doctors and nurses with how well you did. No one expected that day to come. No one expected that we would ever have to say goodbye.
It is so unfair that you climbed every mountain that was laid in front of you and you were still taken away. With you went all the hopes and dreams that I had for you, my baby girl. I hoped so much that you would be ok. I prayed so hard. I sat next to you everyday and watched you sleep, smile, and just be cute. I looked forward to the days where you would be driving me crazy just like your brother and sister.
Losing you was so unfair. If I could have fixed you I would have done it in a second. If I could have taken your place, I would have in a heartbeat.
It is so unfair how much you missed. You never met your older sister. You didn't get to meet a lot of those who cared and loved you so much. You missed feeling the warm sun on your skin or a warm summer breeze. You missed feeling rain on your skin and you missed seeing snow for the first time.
I wanted so much for you and I am so mad that all this hope is gone. I wish so badly for you to be with us again. I know it's selfish to want you back when you went through so much but I love you and need you here with me, here where you truly belong.
The pain from losing you gets worse as the days go on. Everything reminds me that I will never get to hold you again. I will never get to call and check on how you're doing. I'll never get to rock you and sing to you.
You touched my life in a way that no one has ever done before. You made my life even more blessed than it already was. I don't know why you had to go so soon. I wish I knew. I wish I knew that if I had made different choices if you would still be here with us fighting and getting better. I wish I could go back in time and change things.
I'm sorry I couldn't protect you and I am so so sorry that I couldn't make you better.
I love you baby girl. You will always, always, be in my heart and on my mind.

I am sure that you are the brightest star in the sky and looking and down on me every day.

Love always and FOREVER, Mommy

Monday, July 13, 2009

An Entire Month


Today marks an entire month that our little girl has been gone. Reality is really setting in and I hate it. This weekend was very rough. On Friday she would have 3 months old exactly, Saturday was 4 weeks since she passed, and yesterday I was full of anxiety anticipating what type of emotions I would feel today.
Saying that I miss my little girl is a complete understatement. I don't think that there are words to describe what I am feeling. Being without a part of you is a terrible feeling. It's like having an open void that can be filled with hate, anger, despair, or sadness if you let it. I have been trying to be in a "happy place" so that I don't get angry or depressed or get full of hate. I want to function and live for my other two children and continue to let Kali's memory live on.
Life has been hard. It has been strange. And it has been different. It will never be the same.

Thursday, July 9, 2009

Meeting


So the meeting didn't give us any medical reason as to why Kali left us so soon and so quickly. They have some "theories" as to what it could have been but aren't to convinced on any of them. They thought maybe a blood clot in her lung, maybe an infection (which was ruled out), or maybe her heart had just worked to hard for too long and gave out. They also said that an autopsy probably would not have been helpful anyway so it's not a big deal that we chose not to do one.
In the end the result is the same. Our girl is gone and we don't know why. It sounds silly to say that we don't know why when she had so much wrong but she was doing SO good for so long that no one expected this.
During the meeting there were tears, mostly from me but also from the doctors. I could tell that Kali really touched their lives, even though they still can't pronounce her name correctly ;). We gave them "In Memory" pictures that 2 friends of mine had made and also the prayer card from the funeral. They really seemed to appreciate it.
So at the end of the day my heart still hurts for the loss of my baby girl but I am not angry (which is very important to me). Everything that good be done for our girl was done. We were supported by them with every tough decision we made and she received great care. My daughter had the best shot possible of coming home with us. This situation just proves to me that no matter how hard we try, things like this are out of our hands. There is someone bigger than all of us out there and things go by his plan and nobody elses.

I'd like to use this post to promote a group I organized on Facebook for Kali. So Facebook users search for the group "For the Love of Kali" for details on how we are going to continue her legacy and let her memory live on.


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Monday, July 6, 2009

Meeting With Kali's Doctors This Week

Although we chose not to have an autopsy, the doctors reviewed Kali's "case" to see if they could come up with what caused her sudden change. We were able to set up an appointment with them for this Thursday. I am so nervous and anxious about this meeting.
So far I have had no anger really. I am afraid that after this meeting I will. I am terrified that they will have discovered that her death was avoidable and that if they didn't do one certain thing she would still be here with us.
I don't want to be angry. Anger takes up too much energy, and energy is one thing I do not have at this point in time. I just want to be at peace with whatever they have come up with and for them to tell me that no matter what happened, it was her time. I will defintely update this blog after the meeting.
I am hoping that this all becomes much easier to deal with. I have been trying to do things that I enjoyed before and they just don't feel the same. This past weekend was hard because we got together for a picnic and it just didn't feel right knowing that she would never enjoy times like that. I kept thinking that if the pregnancy had been normal and she was healthy, she would have only been a couple weeks old and I would have been holding a sleeping baby girl in my arms during the picnic, not mourning her.
I miss my little angel so much.

Saturday, June 27, 2009

It's Been 2 Weeks

Life without Kali SUCKS! I don't know how else to describe it. I have always had a hard time being away from my children and knowing that I have to spend the rest of my life without her tears me apart. How the heck am I supposed to stay sane?
The only reason I get out of bed everyday and live is because of Darrin, Marissa, and Mike. Yes, life must go on...but it will never ever be the same. My greatest fear was losing a child. I used to have extreme anxiety over it long before Kali came along. Now it is my reality.
There are so many what ifs surrounding this entire situation. I know in my heart we did everything right by Kali, I don't regret any decision that we made regarding her. I just wonder how things would have turned out had we taken different paths.
The way this plays with my mind is unbelievable. I feel like I am living a nightmare and am still waiting to wake up. I have felt like I've been in a nightmare since February when we found out that Kali was going to have problems. Four months of never feeling like I'm awake. Every night I go to sleep hoping that when I wake up it is all over and was just a horrible dream.
I miss Kali so much. I think about her all of the time. I wish she was here. I know she will always be with me in spirit and in my heart. But I am a selfish mommy and I want her with me physically. I want her to be a healthy baby. I want to hold her and kiss her. I want to play with her feet and I want her little hand to wrap around my finger again.
Never in a million years would I expect this to be my life....

Thursday, June 25, 2009

Kali on Children's Miracle Network Video

The day after Kali's first surgery (when she was exactly one week old) we were asked to sign a consent so that they could use images that someone recorded of Kali for the Children's Miracle Network telethon. The telethon didn't come on for another 6 weeks or so. I kind of forgot about it and never watched. The other day I went on the Hershey Medical website and looked to see if they had any videos to see if I could find one with her and I did. This is the video, she comes on when the bideo gets to around 1 minute and 33 seconds. She was very sick that day and was breathing fast, is laying on her back and has her shades on.




Monday, June 15, 2009

Kali's Obituary

Kali's obituary is on the funeral home's website www.thompsonfuneralhomelebanon.com. It will also be in our local paper tomorrow and can be found on their website after 10 am ldnews.com.

Thank you for all of your condolences. I hope as many as possible can fill that building on Wednesday to show our little angel some love!

Saturday, June 13, 2009

The Post I Never Thought I'd Have To Write

We lost our Kali today. She was doing so well last night and this morning. We had left the hospital around 9:30 this morning after spending all night there. We came home to shower and spend time with the other kids. Around 1:30 or so I felt that we really needed to get there. When we got there she had taken a turn for the worse and coded again. I knew yesterday that if it happened again that she wouldn't make it.
Things were just getting worse and worse. We didn't want to tell them to stop but we knew that they probably should. I held her hand the whole time and told her how much I loved her. The doctor came over to the side of the bed we were on and said that they had done all they could do and if she were to survive she probably wouldn't have any brain function because her oxygen was so low for so long. We asked them to stop. They took out her breathing tube and put her in my arms. She died peacefully in my arms with Mike right there with me.
The heartbreak of this of course is still fresh but it is comforting in a way to know that she died on her terms and not on someone elses time line.
Kali is our angel and it is no question that she will forever be loved, not only by us but by people who supported us, some of who I never met in real life. She was a special special girl. She was with us on Earth for 64 days and 13 hours and we are blessed that we had that amount of time to show her our unconditional love.


Kali Alexa Deitzler 4/10/2009 - 6/13/2009 Forever in our hearts, our own personal angel.

We Almost Lost Her...Twice

I am going to start at the beginning where all this craziness started. On Thursday night they had removed her breathing tube to replace it with a bigger one. The size she had in has been the same size since birth and obviously she has grown but the tube has not. So because the tube was small, air was leaking around the tube and she wasn't getting it all in her lungs.
So to replace the tube they paralyzed her for a few minutes during the change. Afterwards she slightly recovered from it and then went down hill. She needed 100% oxygen setting on the ventilator (lately she had been needing 21-35%) and her oxygen saturation in her body was only in the 70s (she is normally in the mid 80s-high 90s).
When we got to the hospital yesterday morning the nurse told us how touchy she was. Every time she had care done her oxygen would drop and they would have to take her off of the vent and bag her until it came back up, which didn't always work. They were giving her medicine to help her relax and for pain just in case that was the issue although that seemed unlikely.
Then around 11:30 am her oxygen dropped again and this time her heart rate went with it. They had to do chest compressions because her heart rate dropped into the low 60s (her normal is 120-150). They were able to quickly correct the problem but she still was rocky.
Around 4pm it happened again but was worse than the 1st time. Her heart rate dropped into the 40s as did her oxygen level. They had to give her medicine to try to speed up her heart because the compressions weren't doing it. It seemed like forever until they stabilized her enough that they could even walk away from the bed. I was seriously waiting for them to turn to us and say that there was nothing more that they could do, but they didn't!
After this second "episode" they gave her medication to paralyze to which allows the ventilator to do all the work for her. Mike and I slept here at the hospital in a parent's room in the NICU. I checked on her every couple of hours and each time I went in the oxygen setting on the ventilator was lower. This last time it was at 21%, the lowest it can go!
She is definitely not out of the woods yet and they have no clue why this happened. First they thought maybe her heart defect was over flooding the lungs with blood so they did an ultrasound of her heart, which came back good (well good for her anyway). Then they thought maybe an infection but all of the blood work for that is normal. Her chest x rays look good too. So whatever it is is unknown, which means they don't know the solution until they find the problem!
Please say some prayers for our girl in hopes that she won't go through anymore of this!

Thursday, June 11, 2009

No News Yet


We still have no answer from Monday's biopsy. The resident told us today that she's hoping we hear something by the end of the week, I don't think that she realizes that tomorrow is the end of the week! I don't expect to hear results for awhile though. Nothing has ever come quickly in this process...except for bad news.
Kali is doing an ok job at recovering from this last surgery. She is requiring more oxygen support on the ventilator and has her ups and downs in that area. She is back to being fed through the tube in her belly and is tolerating it so far. She had some medication changes because her electrolytes are always all over the place.
This morning she had her second eye exam. This first one showed immaturity (which is normal for a preemie) and this second one showed "stage 1 retinopathy in zone 2",which is a normal finding and the least severe since the grading is on a 1-5 scale. Thank God something has gone her way!! I honestly was afraid to ask how the exam went because I was afraid they would tell me she is completely blind! She will have to be followed up on in a week and hopefully everything will remain the same.
Also, today right after Mike and I had left the neuro surgeon came by to see Kali and told the nurse that he is planning on putting her shunt in next week sometime. We are very concerned by the timing of this and will be talking to her neonatologist in the morning to see his opinion on if it is too close to her last surgery to do this. I also want to know how he feels about them shunting fluid into her belly when her liver is still not fixed or even figured out yet! We'll see, hopefully they will put it off another week to give her time to fully recover!
So that is all that has been going on with our girl. Her weight last night was 4 pounds 6 ounces! She's definitely getting bigger!!

Monday, June 8, 2009

Now We Wait

Today's surgery went very well. We got to the hospital at 6:30am thinking that she was going to go at 7:30. Well she didn't go to the operating room until 1pm and only got back to the NICU around 3:30. It was a LONG day but worth it.
They were able to get the biopsy and also check her bile ducts with a dye and x ray. Her bile ducts were normal, which is good. The biopsy results will not be back for awhile... like days to weeks.
The next few days Kali will be watched closely for signs of bleeding from her liver, which is a big risk for her. Hopefully she can avoid this and have a smooth recovery.

Sunday, June 7, 2009

The Plan

We met with Kali's doctors on Friday to discuss the plan for her care. It sucks that such a beautiful little girl has so much wrong and that she needs so many people to help her.But we are lucky that they are willing to do what they can to get her home where she belongs.
So first step in the plan is taking place tomorrow at some point. She is going to have another operation, this time to take a biopsy of her liver to see if they can find out why it's not functioning properly. They are hopeful that they will find a treatable answer. If it is not treatable they will make a plan to get her home to be with us for as long as she has. If it is treatable then we move on to the next step.
I am pretty sure, but not certain, that no matter what happens with the biopsy results she will be getting a shunt to drain the fluid from the hydrocephalus. That would happen in a few weeks after she has time to recover from the biopsy. Also they will be checking her airway to see why she struggles to breathe without the vent. Her lungs are good but her airway is either floppy from the fistula she had or is swollen and irritated from having the breathing tube down for her whole life.
She may end up with a trach, which is basically a hole in her neck that goes to her trachea and allows her to breathe that way. She may or may not need to come home on a ventilator, although that is unlikely since she is basically breathing on her own currently.
So if all goes well with the above she will be having heart surgery when she hits about 8 1/2 pounds. Then she will recover and come home. They are unsure of how she will function. She may never walk or talk and may never know who we are. The bleed damaged a lot of her brain. But all of that is so unknown and she has so much life and fight in her that we couldn't give up.
We know in our hearts we are doing what is best for our girl. It may not seem like that to others but that's fine. God forbid anyone faces the choices that we are facing. You'll never know how it feels unless you've been in our shoes you can't pass judgement. I would never want anyone or another baby to go through this.
She has an extremely long road ahead of her but she is a fighter and I hope she gets to prove herself! All of this seems so bad but when we sit at her bedside or hold her we just see our baby. She looks and acts so much like our other two did as newborns. I can assure all of you that she is no way suffering. She is content and calm, unless she is hungry or has a messy diaper.
So keep Kali in your prayers. We won't have complete results for a while but they will be able to tell us something soon.

Wednesday, June 3, 2009

Another "Baby" Step & Back To Work


Every day that I look a Kali's pretty little face I feel at peace with the decision that Mike and I have made to continue on with everything. She is such a sweet innocent little baby. I can't even explain how I feel when I am with her or my other two kids. They have brought such joy to my life and even in this situation they bring more. I can't wait for the day we are all together.
During my visit last night the nurse was having trouble with Kali's feeding tube. For some reason her milk wouldn't flow through like it usually does. By the time I had left we (the nurse and I) thought we had it figured out so I was surprised when I called to check on her before bed to hear that there were still some issues. Then this morning when I called to check on how her night went, the nurse told me that she was still having trouble with her tube and the surgeons asked them to not feed her over night and they would be in to check it out first thing in the morning.
This morning when we went in for our visit Kali's day shift nurse, Rachel, told us that when she opened Kali's pajamas she saw that the feeding tube had come out of Kali's belly (I'm sure it had some assistance from Kal herself). So she now has a new accessory called a Mic-key Button. It is a cool little device. It is basically a little port that is into her stomach that the nurses connect a tube it to feed her and then they take the tube off when she's done and close it. So when she is wearing clothes it doesn't look like there is anything there.
Also over night she started using a pacifier. When we noticed that she was trying to stuff her hands in her mouth we tried and she didn't get it. But now she is a pro. Because she didn't get fed all night she was a very hungry girl and was extremely fussy. She cried (she does cry but doesn't make any noise because of the breathing tube) and would only calm down if she had her pacifier. It was so cool to see her suck on it because it is another step in her development.
She had a very good day so far today and that makes it a little easier to go back to work tonight. I haven't been to work since the morning I got put on bed rest. I think I have been off about 13 weeks or so. The fact that I should only be getting ready to go on maternity leave makes it a little harder to be going back. I am really going to try to handle it all but it is so tough. I work with a great group of people though so I am hoping they take it easy on me!

Sunday, May 31, 2009

Praying For Miracles


So the jaundice has turned up the heat. For some reason Kali's levels keep on climbing. For about a week, I guess, she was on the right track with her liver. All the blood work showing her liver function was going down (which is good) and her color was getting better. But rather quickly things changed. They started a new medicine which should hopefully control the problem and if it doesn't work they will repeat the test they did a couple weeks ago to see if this time they can get an answer. So like everything else we just wait and see, and pray that this is not a worst case scenario that seems to plague our little girl.
We also received some not so promising news about her brain. The bleeding that had occurred has caused cysts to form where brain tissue once was. The prognosis is "guarded" as they like to say but is basically unknown at this point. Worst case scenario for this- she may never walk or talk and may need a feeding tube for life. Best case scenario- possibly a little developmentally delayed. Either way she'll never be "normal" (which, once again, fits her into our family perfectly!).
All of the different doctors involved with her will be meeting together and then with Mike and I to discuss the "big picture". They want everyone on the same page and then want to see what further steps we want to take in Kali's care. As far as Mike and I are concerned we will continue doing what we had planned originally. Kali is not suffering at all. She isn't in pain, she is growing, she is alert, and she is doing what babies do.
It is hard to explain what goes into making our choices for our child but we shouldn't have to. We feel in our hearts and souls that we are doing what is right. No one can predict what the future holds for our child and we will not rob her of the chance to have a great life surrounded by a family who loves her so much. I refuse to give up hope that this baby will one day come home with us to complete our family. And anyone who tries to take that hope away can leave their opinion at the door because it doesn't matter.
We will never stop fighting for our girl and we won't give up on her.

Wednesday, May 27, 2009

You Know What They Say!


Sometimes I believe that moms really do know everything. I passed my theory along to the doctor about why Kali's jaundice was creeping back up and why she was requiring more oxygen. They heard me out, made some adjustments with how they were doing things, corrected her medication dosage, and we have had some improvement. Seriously, if I am going to be using my brain to fix things then I definitely want to be put on the payroll while I am there (and not as a nurse)!
Kali is getting there. She is growing so much and is starting to do things that developmentally she was not doing before. Which I see as a great sign as far as potential brain injury from the bleed is concerned. It's just little things that are big to us, like trying to put her hand in her mouth, opening her mouth when her bottom lip or chin is stroked, looking in the direction of our voices. It is amazing!



Unfortunately I feel the need to share bad news about our friend Amani, who I asked for prayers for in my previous post. The infection that he had was meningitis. It over took his poor little body and he passed away this afternoon. It is a devastating loss for his parents and the rest of their family who loved him dearly. It is just tragic the sudden change the infection brought and the outcome. Please pray that his mother, and the rest of the family, find peace. Such a beautiful angel, in his short life you could feel the love he had from his family. They are just amazing people and my heart breaks for all of them.

Monday, May 25, 2009

Sick Babies


Before I update on our precious Kali I would like to add some prayer requests. There are 2 little babies that I know of, beside Kali, who really need some! Little Amani (his mother and family are people that I have known for more than half of my life and they have always been so good to me) is really sick. He was born about 5 weeks early, on the 8th, and now has an infection. He was doing really well and this came on suddenly. Please pray that the infection clears soon and leaves him completely healthy and ready to go home with his mom and dad!
Next is little Pearlnayshia (Pearl). She is Kali's neighbor in the NICU. She is a little miracle, born when her mom was 25 weeks pregnant back in March. She has battled a lot in her life and was doing really well. She went for surgery the other day on her eyes to correct a problem related to her prematurity, and now is having trouble coming off of the ventilator. Up until her surgery she was breathing on her own and doing pretty well. Please pray that she recovers soon and is able to be free from the vent!
And finally our little Kali girl. Our little friend lost a few ounces last night and her levels they check for her jaundice have bounced upwards again. The doctor said it could be just a blip and that hopefully her numbers will start to trend down again. I have theory of why it went up that I will discuss with him the morning and hopefully it will help. She is now on a complete breast milk diet, no longer receiving IV nutrition. She is doing OK with it but could do better. Hopefully when she starts tolerating it more her numbers go down. I am trying to stay positive and hope that things start to improve.
I was able to hold our little angel today, which makes it the 6th time. She is a little over 6 weeks old and usually by this time after you have a new baby you lose track of how many times you have held them. I'm just glad I can count the number of times on more than one hand now.
I apologize if the tone of my post today is depressing and sad but today was a trying day for me. I am staying positive though and thinking good thoughts for my girl and her little NICU buddies. Hopefully tomorrow is a better day for us all!
Please remember us in your prayers tonight!

Thursday, May 21, 2009

News From the Heart Doctors


Today we spoke to a cardiologist that was seeing Miss Kali. She had another echocardiogram done this week and it showed that her left ventricle has grown and is strong. Her left ventricle was much smaller than it should be and is still on the smaller side but has shown some improvement. Also one of the "holes" in her heart is smaller. She will still require surgery for other defects in her heart but this is still great news.
So about the surgery. I know this is something everyone has questions about. Basically what we were told today is that they want her a certain amount of weight before they will plan it. If she shows any signs of needing it done sooner they will do it but she will do better if she is bigger. The weight they want her is 4 kilograms (or over 8 pounds 12 ounces). Currently she is 1.7 kilograms (which equals approx. 3 pounds 13 ounces). So she has a LONG way to go.
Also the neurosurgeons are pretty sure that she is going to need a shunt (remember I said pretty sure, not positively) and would like to wait until she is over 2 kilograms before doing that. They have been draining fluid from her head every day for the past week or more and today she didn't need it. So time will tell! If her head stays normal without them draining fluid then chances are she won't need a shunt. We are hoping she won't because we would like less surgeries!!!
But she really is doing very well. Her IV nutrition is slowly going down and the amount of breast milk she gets through her feeding tube goes up everyday. She is currently getting about 2 and 1/4 ounces a day spread out over 8 feedings. I'm sure that amount will be increased tomorrow.
She has not received any pain medication in over 24 hours which is wonderful. She was on a drip of pain medicine pretty much since birth so this was a big step to get her off of it. Her 2 IV medications are being changed to go through her feeding tube. And slowly her jaundice is fading (her numbers are still high but they are going down).
She has had a lot more periods of being awake and alert over the last 2 days. It is so nice to see her eyes.

Please pray that Kali's heart continues to improve, or at the very least remain stable so she can gain weight and be as healthy as possible for her surgery!

Sunday, May 17, 2009

Kali's Weekend

Kali had a great weekend. She is doing great! The blood work that they do to evaluate her jaundice is coming down slowly, but it's getting there! Her blood work for her kidneys is much much better! Her head is doing great! She is gaining weight! And they have increased her feeding amount!
Her feedings are now about a teaspoon every 3 hours (before she was getting a total of a teaspoon a day). She looks noticeably bigger and when I held her today I could feel the difference in her weight. She has now gained a full pound since birth. She is 3 pounds 12 ounces!
The other night at around 2am she pulled her breathing tube out. Apparently this happens with these little ones from time to time. They had to put the tube back in though because she is not quite ready for it to be out. It wasn't the best case to evaluate how she would do on her own but she was in too much distress to just wait and see. After they put a new one in she recovered very well. She will be on the ventilator for awhile longer than they thought because the doctors feel that she has a "floppy" traceha. So it closes on itself after she breathes in air and the air gets trapped. This will get better as she grows.
There is not much else to report from this weekend. We are so happy that she is doing well. Right now we have to just wait and see how she does and that will guide them in the direction they will need to take with her heart.

Keep her in your prayers!

Thursday, May 14, 2009

Kali Meets Her "Go Go"


Today Kali finally met her big brother Darrin, aka. Go Go (a nickname given to him by his other sister, Marissa). We were going to wait until she was off of the ventilator but we don't know when that will be so we decided that she was doing well enough for Darrin to see her. He loved every second of his visit. Of course he was amazed at how tiny she is. He had lots of questions and lots of comments. He did really well, didn't seem nervous or anxious. He didn't even seem to see her any differently than a baby without everything that she has.
Kali also had another great day. She is still on a pain medication drip. She has been on this drip since her first surgery. They are slowly weaning her off of it to avoid any major withdrawal issues. She is doing very well with this and hasn't any major issues.
She is now up to 3 pounds 10 ounces. She is packing it on!

Here are some pictures from today's big visit

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Wednesday, May 13, 2009

Tiny Kali



Sorry for the delay between updates. I have been lazy! Not much has been going on. Kali is holding strong: sleeping, growing, being cute, and best of all being very stable! She is turning into quite the popular one. Everyone loves to take care of her (who can blame them?).
We realized the other day just how tiny this munchkin is when I was able to put Mike's wedding band on her like a bracelet. The pictures I have been posting make her look like an average sized baby, since I am all up in her face when I take the picture, but she is just a tiny girl. Photobucket
Kali is now modeling a new device that one of her doctors created. It is getting put on the market soon so a rep. from the company that is making it had come in to see how it is applied and Kali was kind enough to volunteer for the demonstration. It's called a NORI and it holds her breathing tube in place instead of tape. It is basically clear so it allows us to see her pretty little face and it keeps the tube in place better than the tape.
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She is up to 3 lbs 9.5 ounces now and is about 15 1/2 inches long. She looks bigger, especially to those who haven't seen her for awhile. She looks like a different kid.
Also, her bilirubin levels are going down so the jaundice is slightly fading. The blood tests also show that her kidneys are improving. She is still getting a little bit of breast milk through her feeding tube and is doing well with that. Right now she gets a total of about 1 teaspoon a day, they are going to try and double that amount by the weekend.

So that is about all that has been going on! We have no idea when they will begin discussing her heart and the plan for that. We know that she has a whole lot growing to do first!

Thanks for the thoughts and prayers!

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Sunday, May 10, 2009

An Answer to The Jaundice


After spending 4 hours down for her test on Friday and another half hour on Saturday they finally know what is causing Kali to be so jaundice. I will spare you the whole roller coaster story that took place to get to this diagnosis and just tell you the bottom line and what it means. Kali has what is called "biliary hypoplasia". To explain that I will give you a quick anatomy lesson. Bile is made in the liver, it then goes into your gall bladder where it is stored, from the gall bladder the bile drains into your small intestine through a bunch of little ducts. In Kali's case she doesn't have many of those ducts. So the bile backs up and she is jaundice (yellow).
In the long run what this means is that she will most likely always be jaundice. Not extremely jaundice but she will always have a tint of yellow to her. The doctor said she will look Mediterranean, which is fine because she will fit in perfectly. We may resemble the Jolie-Pitts with our children but it will give us a uniqueness that is ours alone!
We may run into other issues later in her life because of this but it will not have a negative effect on her at this point and she will be able to continue on her journey to get out of the NICU and home where she belongs.
I was able to hold her again yesterday (which, after what I went through with the doctors, I really really needed). I held her for 30 minutes again and she tolerated it very well. At first she just looked at me while I talked to her and told her about her crazy brother and sister. Then she fell asleep and was so relaxed the rest of our time together. She really liked being held.
Of course we are going for another visit today and we are hoping for a smooth relaxing day with no issues!

Happy Mother's Day!!

Thursday, May 7, 2009

New Levels of Frustration


Last evening was a little rough for Kali. While we were visiting,Mike and I noticed some weird things on her ventilator. When the lines on the vent changed Kali's heart rate would slowly start going down and her oxygen level would drop quickly. The nurses were easily able to get her back where she needed to be but these little "episodes" would keep happening. Finally, after what seemed like forever, the resident ordered the necessary ventilator changes and she was back to her normal little self again.
She did well over night and all day today. So far tonight she is doing very well. They have her feeding tube working like it should and she is able to get little feedings every 6 hours. She was awake most of the day and active like she usually is. Best of all, I got to hold her again. This time I held her for almost a full half hour!
Towards the end of our visit this evening the attending doctor came over to us to update on everything that is going on with her. She is going for a special test tomorrow to check the function of her gallbladder to see if they can figure out why she is so jaundice.
He also told us that he is concerned about her kidneys. The blood levels that show how well the kidneys are functioning are elevated. Again they are confused (she is so good at confusing these people). It is confusing because she is peeing very well, she isn't swollen, and she isn't showing any other signs of kidney issues. Tonight's blood work showed a little bit of an improvement of her kidney function. Please pray that the improvement continues!
In some better news, she has gained some weight again! She is now up to 3 pounds and 4.6 ounces!
This little one sure is taking us for the wildest roller coaster ride of our lives!

Tuesday, May 5, 2009

Can A Sista Get Some Food?

Yesterday they got the green light from the surgeon to attempt feedings through the feeding tube in her belly. Things didn't go too well. But not because of Kali. The tube the doctor put in for her feedings is actually something they use as a long term IV in adults. He kind of just made this thing just for her. So because it is something no one has used for this purpose, no one really knows how to get it work the way they need it to. So today they tried again and failed again. This time they wasted breast milk which really irritated me. I have plenty but that was the good stuff. So we are patiently waiting for them to figure it out so she can get to growing!
Otherwise she is doing great. She is pretty jaundice and they are trying to determine why that is. They are hoping once she begins to get feedings it will help decrease her levels and start improving that issue. In the meantime they have restarted a medicine that she was on before to help breakup some of the bilirubin and help her get rid of it through other ways.
There is some talk about her maybe coming off of the ventilator tomorrow. We are trying not to get too excited about it but we are hopeful! Everyone thinks that she will do really well off of it. I am so excited to see her face with out the tape and the tube.

Continue praying!

Monday, May 4, 2009

A Wonderful Weekend and Great Start to the Week




Kali's weekend was wonderful! She has been recovering very well, nothing like the last surgery. She had to be on a medication that helps keep her blood pressure up, but otherwise has been doing great. That medicine is actually stopped now and they have her ventilator settings really low so she may soon come off of that. Today they started feeding her through the tube that goes into her stomach, this will only be temporary until her belly is ready for feedings the real way.
They weighed her yesterday, the first time in over 2 weeks, and she now weighs 3 pounds 2 ounces. They are not sure if that is fluid weight or a real gain, but either way she looks great!
Also, today I got to do something that I have not done since the 2 seconds I was able to in the delivery room........

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I only was able to hold her for a couple of minutes but it was great! It was also a little scary because of the breathing tube and I kept on watching the numbers on the monitor to make sure she was ok. It was so nice to be able to see her and snuggle her up close.
So today was a very big day! She is doing very well and is continuing to surprise everyone who has cared for her. Please pray that she continues on this path to recovery!

Friday, May 1, 2009

Our Little Fighter Wins Again!

This baby is just amazing! She had 2 big surgeries today and did wonderful with both! It was an anxiety filled day for all of us as we waited for news but it was wonderful news in the end!
First the neurosurgeon did his thing. He drained a little bit of fluid and already you can see a difference. I didn't really notice that her head was getting bigger, Mike noticed, but I think I was in denial. But when we got to see her after she returned to the NICU I could see a change.
After he was done the pediatric surgeon fixed her up. She has a feeding tube that goes in her belly past the point of her surgery so that while that heals they can begin to feed her and get some weight on her.
She looked good when we left tonight and we are hoping that she has a peaceful, calm, restful night and that her recovery doesn't have any hurdles. She has had enough thrown at her already and needs a break!

Please continue to pray for her while she recovers!

Big Day Today

I just noticed that I haven't updated since Tuesday! All these days have just been running together. She has been doing great this week. No issues, just resting peacefully, growing, and being cute.
Sometime this afternoon she will be having her surgery. They will be doing both procedures at the same time. She will most likely be gone from the NICU and us for about 5-6 hours until it is all said and done. Hopefully she will only be under anesthesia for about 3 hours though.
I will update when we get back! Please pray hard for this little chick today!

Tuesday, April 28, 2009

Surgery Is Scheduled


We were told today that Kali's next surgery is going to happen on Friday- she will be exactly 3 weeks old that day. This is exciting and scary at the same time. Her recovery last time was rough to say the least! The neonatologist fellow (a doctor who is working at specializing in neonatology) is hoping that since the duct in her heart that they had kept open after she was born, which was open for her first surgery and most of that recovery time, is now closed that we won't see the same rough recovery she had before. It won't be easy but we are hoping that it won't be as bad or as scary.

The nurse I talked to this evening doesn't think they will take her chest tube out before surgery, which means we can't hold her until after this recovery. This news broke my heart. I have been looking forward to holding her since day one and then I thought it would be today and now who knows when!


I can't even begin to explain how unnatural this whole situation is. First, to be sitting here no longer pregnant when I should have a little over 7 more weeks to go, then to have my tiny fragile baby in the care of strangers, also having to agree to allow people to do things to her that put her life at risk, and to have to sit there and stare at your baby and not be able to pick her up and cuddle her. It is just not the way it is supposed to go. I feel so helpless.


But in the end, my little girl is still fighting strong. She had a great day today and was very very active and bright eyed. It was great! I made a little video on my digital camera for Darrin to be able to see her move and act like a baby. He loved it, Riss did too.




We don't know what time she will be having surgery on Friday but I will update as soon as I know! Keep praying!


Monday, April 27, 2009

More Surgery This Week

We don't know when it will happen but we know it will be this week. She is getting scheduled for two surgeries at the same time. One will be to fix the duodenum blockage that she has and the other will be to place a reservoir in her head to allow them to remove excess fluid as it fills up around her brain (this will be temporary until she is big enough for a shunt).
Once she recovers from this round of surgery she will be able to start "eating". She will start off by getting fed through a tube that goes through her nose down to her belly. This is normal for preemies until they are strong enough to suck on a bottle. Then we will wait for her to get big and fat : ) ! When she is big enough they will talk about plans for her heart and shunt placement in her head.
Other exciting things that happened today.... she had a swallowing study done today to check for leaks in the areas where her last surgery was done. There are no leaks! Woo Hoo! The surgeons will come and see her in the morning and decide if her chest tube can come out. The rumor is that once that is out we will be able to hold her, even with her breathing tube in! But that remains to be seen as each nurses point of view on that is different. I'm trying not to get my hopes up but am excited!

Lots of stuff happening this week! Please pray for her to remain stable, for a successful surgery, and for a SMOOTH recovery (last recovery was very very rough)!

Sunday, April 26, 2009

What A Difference Some Clothes Make!


Today was a quiet day for our little one, which is good. When I got there this morning I was surprised to see that my normally naked little girl was all dressed up. She even had a hat on that was made for her by my Aunt Michelle's Aunt Jackie. She looked absolutely adorable!
She has been holding strong, just chillin' in her fry warmer, growing and getting stronger!
Everyone comments on the major turn around she has had in the last few days. I think she is just showing everyone that they can't give up on her. She is tougher than most people thought she would be. She is awesome.
So, after spending a few hours staring at the cutest little preemie in the entire universe, we decided to head home and hang with the other beautiful little ones in our life.
This week we will find out when her next surgery will be.

Please continue to pray that everyday is as peaceful as this weekend!

Saturday, April 25, 2009

A Peaceful Day

Today was a great day for our girl. Her head has not grown since the little growth spurt it had the other night. They did a spinal tap today to try and relieve some fluid and pressure off of her brain. They did not get a lot of fluid so they are hoping that means the pressure isn't too bad up there.
I spoke to this weekend's cardiologist and was told that her heart is very stable at the moment. He believes that we have plenty of time to correct the heart problem down the road when she is much bigger.
People who have not seen her for awhile are shocked by the change in her. Honestly, earlier in the week she looked awful. She had this terrible gray color to her. Now she looks nice and pink. She is getting good circulation to her little body and they are very impressed by that.
They had thought of removing her breathing tube today but decided against it. She is basically breathing on her own at this point with the ventilator only supporting her. But she has a surgery coming up so it wouldn't make much sense to take her tube out and have to put it back in again. I guess we will see on Monday what they decide!

Hoping these good days last! Keep praying!

Friday, April 24, 2009

Can Our Angel Get A Break??




For the love of it all! This morning I called to check on our little Kali and was told that her head circumference increased one full centimeter in four hours (the doc told me her head should only increase in size by 1/2 a centimeter a week). This means she developed hydrocephalus. So they repeated the head ultrasound, which the official results are not back yet, and consulted neurosurgery.


The doctor told me that the quick peek he took with the ultrasound showed some brain damage. He said it is not a devastating amount and we will not know how it will effect her at this point. We (Mike, my self, our family, the doctors, and nurses) are hoping that it does not increase anymore. At this point she still has a fighting chance, but if it gets any worse we do not know what will happen.


I am not sure what neurosurgery's opinion is. They never told us. But we do know that at this point she still moves all limbs freely so that is a good sign. She is also able to swallow and sucks on her breathing tube. Hopefully she maintains these abilities.


We are still continuing on with our plan to give her every treatment that she needs to survive. As the doctor told us, she has a lot of small things that are very fixable (except for the brain damage). He is very supportive of us continuing with all of her care.


In all of my years of working in health care, I have rarely seen a doctor cry with his patients or their family. In the past two days I have had two different doctors tear up as they talked with us about our daughter. None of us can believe the cards this little angel has been dealt. We are hoping the hurdles stop coming and she is able to overcome the ones that have already been set up in her path.






We would like to thank you all for your prayers and good thoughts for our baby girl. Please keep them coming!

Thursday, April 23, 2009

A bad morning turned into a good day

So this morning we got our first bad phone call. I woke up at around 4:15 and just stared at the clock wondering how Kali was doing and if it was a good time to call and check in. I was only half awake so when my cell phone rang I couldn't really figure out what it was. I have the NICU programmed with a special ring tone so that was where the confusion came in. When I realized they were calling, my heart sank. I was so afraid to pick up the phone. After the bad news we received that night I didn't know what could be going on.
When I answered, I was told to hold on for a second while the doctor came to the phone. She told me that they believed Kali was having a seizure and her heart rate was dropping. I quickly hung up the phone and got put of bed to get ready to go. I didn't want to think about what could happen. As I came out of the bathroom Mike was headed down the hall. He said the doctor just called back and said she would like us to come in because she didn't like the way Kali was breathing. We quickly got ready to go and waited for someone to come sit with the kids.
The car couldn't go fast enough. Of course the roads were wet so we had to be careful so we wouldn't get into an accident. The 25 minute drive felt like hours. I wanted to call and see how things were going but I was afraid to know the answer.
When we arrived and got buzzed in we hurried down the hall to get to her. I tried to read the nurses' faces as I passed them. I couldn't tell what to expect and I was terrified. When I could see Kali's area I noticed that everyone was sitting and not doing anything with her. I quickly looked at her monitor and saw her heart rate and oxygen level. They were normal! I felt a ton of relief.
Thankfully, it turns out that she did NOT have a seizure. The type of ventilator she was on was not doing a good job of keeping her levels where they needed to be. Her oxygen level was low and her carbon dioxide level was extremely high. This issue caused an irregular breathing pattern and some other things that caused them to believe it was a seizure. After they corrected the breathing issue (by suctioning her airway and switching the ventilator to a different type), she began to breathe normal and returned to normal. Her carbon dioxide and oxygen levels improved dramatically almost in an instant.
The rest of the day went very well. Her levels stayed where they needed to be. Her blood pressure stayed in a great range. She is almost completely off her last blood pressure medicine. And she just looked good.
There is no way to explain the fear we felt this morning and there is also no way to explain the relief when it all turned out OK. I will not ask what else can happen because I honestly do not want to hear the answer to that! All I know is what I see and I see the strongest person in my 2 pound 12 ounce daughter. She doesn't know that she is tough. She doesn't know the effect she has on those who are caring for her. All she knows is how to be strong and fight this tough battle. And that is all that is important.

Wednesday, April 22, 2009

Bad Day Today

Talk about kicking someone when they're down....as if this little girl hasn't gone through enough, today they drop a bombshell and tell us that she has a bleed in her brain. There are four grades of bleeding. She has a grade 4, the worst possible. This can affect her development in some capacity, how much we will find out as she grows and develops. There is nothing that can be done for this, we just have to wait and see what happens.
This setback won't affect how we will proceed with her care. We will continue to have everything done to allow our child the best chance at life with us. The amount of love that we have for our child (and our other 2 children) is not describable in words. We will walk to the ends of the universe to give our children everything they need to have a happy and wonderful life.
I don't know if I have said this on here before but I just for the life of me can't figure out how this little baby can look so precious and perfect on the outside can have so much wrong on the inside.

Please pray that the angels watch over my little girl and keep her safe.

Tuesday, April 21, 2009

Our Little Fighter

Our girl was up to a lot today, in a very good way. They are able to make positive ventilator changes and they are still able to cut the dosage of her blood pressure medicines. She is doing so good. She is one tough little girl and amazes us with her strength every single day.
Today was her first full day with her glasses off and we got to catch her with her eyes open for awhile during our visit today (of course with my scatter brain I forgot my camera), they also removed her ear muffs from that she was wearing before. So we actually got to see our baby without so much stuff covering her face. She is absolutely beautiful. The pictures I have been posting don't even show half of how adorable she really is.
Also today they did an ultrasound of her liver (because of the jaundice) and her brain (which is a normal test for preemies). We don't know what the results are but we are just assuming that no news is good news! They will tell us for sure tomorrow how the tests looked.
She was started her on a new medicine called phenobarbital. Usually that medicine is used for seizures but in her case it is being given to help breakup the bilirubin in her body to help clear the jaundice. It will also kind of sedate her. She is so active and so far that medicine hasn't really done anything in that department! She is one hyper girl!

So our girl had another good day and seems to be heading in the right direction so that she can have her next surgery. I don't expect that to happen until next week at the earliest. The surgeons want her as stable as possible before they take her back.
Please keep praying for this little one! She is being so tough and your prayers will help that continue!

Monday, April 20, 2009

Another good day




Today went pretty well for our little angel. They are slowly able to wean off of her medications. She was on three this weekend to keep her blood pressure up where it should be. They took one off completely this morning, another one's dose has been almost cut in half, and the third one they haven't touched yet. She is tolerating this very well and maintaining a good blood pressure.

They are slowly making adjustments with her ventilator but we had a little set back this evening with her lungs. It isn't major and is easily fixed, but we hate setbacks. We love to keep going forward on her recovery!

Also, they had to remove her blue lights. There is a long detailed explanation for this but what it comes down to is that she is what they call a "bronze baby". Because of the jaundice that she has the blue lights could permanently pigment her skin this bronze color. So we get to see her pretty little face more for now! If the one level in her blood work continues to go up and gets to a dangerous level she will have to go back under them, but for now she is out from behind her goggles!

That is my update for today. Hopefully I can continue to have updates like this with lots of good news and no roller coaster rides!

Please continue to pray for our little girl!

Sunday, April 19, 2009

A good day??

I am afraid to say it! I don't want to jinx that little girl, but she has had a very good day today. She is still critical but stable (sounds like an oxymoron). Her oxygen levels have been good, her blood pressure has been alright, her heart rate is staying right where it should be. They have been able to make adjustments to her ventilator in a positive way. Hopefully they will be able to wean her off of some of the drugs they have running through her tiny body.
I am hoping that she maintains this or improves even more over night. She deserves a break for once! The constant up and down of her levels aren't a good thing. I just hope that it is not having an effect on her long term prognosis.
The cardiologist was by today while I was visiting. He did an echo on her tiny little heart. I have come to the conclusion that I will stop paying attention to what they have to say until they know what they heck they are talking about. It seems the only way we will get a concrete diagnosis on her heart condition is when they do a heart cath, which won't be for a while yet. The only thing we know for sure is that her aorta, which they had initially thought was too narrow, is perfectly fine. We also know that her left ventricle is smaller than it should be, but of course they can't say if it's too small for its job, or if it can handle what it needs to do. These docs seem to leave me with my head spinning.
For now we are going to focus on the problems that need immediate attention-her esophagus and duodenum. The heart is stable and can be treated medically until she is big enough for whatever it is that they need to do.
Hopefully this week she stabilizes completely so they can test the connection of her esophagus and we can move onto the next step of surgery.
I will keep you all updated on what goes on! Pray that this little chick stays strong!!!

Saturday, April 18, 2009

The ups and downs in NICU


The last two days have been the worst roller coaster ride of my life. After having such great news on Thursday we have just had more set backs then expected, at least more than I expected. The surgeon said she would probably be "sick" as she recovers. She definitely proved him right. Her oxygen levels go up and down, her heart rate and blood pressure are right there with it. This tiny little 2 pound baby has more drugs running through her system than I have had in my entire life. How can someone so tiny handle this?
She is a feisty little girl though. Even with continuous pain medicine to help keep her "sedated" she is bouncing all over the place. I don't think anything can hold her down. She is amazing.
These last 8 days have been tiring; physically, emotionally, and mentally exhausting. I can only imagine how this tiny child feels.
The picture I posted with this entry is her in her french fry warmer. I hope you can see the bright orange on the side of her head (I think if you can enlarge the picture by clicking on it). Those are "sound mufflers". She has extremely noisy neighbors who love to cry...sometimes in sync, and it irritates the heck out of her. The sound mufflers were courtesy of the Life Lion crew. She really looks like she belongs on a helicopter, or at least on the landing pad directing them how to land.

Thursday, April 16, 2009

One down....not sure how many more to go


Today was huge! Kali had her first surgery and it was a great success. As the doctor put it "she did amazingly well". When a little baby shocks surgeons who have seen it all it proves just how strong of a fighter she is.
First, this morning she was baptized. Her "real" baptism will take place when she is home and recovered, but it was really important to us that she have it done now.
This afternoon we walked our baby girl to the doors of the operating room. They let me kiss her for the first time before she went in (and Grammy got to too). Mike is a little hesitant to touch her but she knows her Daddy is there. I seriously didn't know if it was the last time I'd see her. Her eyes were wide open and it seemed as though she was looking right at me as the wheeled her away. It was, without a doubt, the hardest thing I have ever done in my life.
But the little girl pulled through! Her surgery lasted 2 hours and 5 minutes. They closed the connection between the trachea and esophagus and also continued on and connected the two parts of her esophagus. They decided not to fix her duodenum because they didn't want to push their luck. She was doing so well that they were afraid that if they pushed too hard and continued with 2 more hours under anesthesia it would do more harm then good.
So the plan now is to wait a week. They will then do a test to check for leaks in her esophagus. If there aren't any then they will schedule her next surgery, which will repair her duodenum.
The next few days are going to be rough as she recovers from this big surgery. They are expecting some set backs but so far so good (I know it's only been a few hours since her surgery but I can't help but be optimistic!!).
As I always ask that you please continue to pray for her continued recovery!

Wednesday, April 15, 2009

Big Day Tomorrow

Tomorrow is most likely going to be the day of Kali's first surgery. They are planning to do it in the afternoon, as long as an emergency doesn't come in and take her spot in the OR. They are planning to close the connection between her esophagus and trachea. If she is tolerating that they will then try to connect the two parts of her esophagus. If she is still doing ok they will correct the part of her bowel that is either very narrow or blocked completely. Keep her in your prayers tomorrow because this is going to be very risky. We are hoping for the best and trying not to think of the worst.
She has been doing very well on the vent and is just kind of hanging out trying to get bigger and stronger.
This little girl is so tough, stronger than I could ever be. I have all the faith in the world that she will pull through and will be driving us crazy like her big brother and sister already do.
I promise to update tomorrow night or early Friday morning after it is all said and done. Hopefully I will have nothing but good news to report!

Tuesday, April 14, 2009

New picture


I just wanted to share this special picture of our little girl. She has been under those blue lights since about 12 hours after birth so we really haven't seen much of her face. Yesterday we just happened to be there when they did her care and they turned of the lights. Mike asked the nurse if she could take her "glasses" off so we could see her face. She opened her eyes nice and big for us. It was so exciting! She has tons of blonde hair and we think she looks like her big sister.

Sunday, April 12, 2009

She's here!


I feel like I jinxed myself. I wrote my last post the night before it all happened. To think that I was worried about having to spend endless weeks in the hospital on bed rest. What I wouldn't give for that to be the case.
On Wednesday the 8th at 8:10 am my water broke. At first I thought I was peeing my pants. I felt the gush of water. I looked at my husband, who was laying on the couch next to where I was standing, and said "Oh my God my water just broke". I immediately began to cry. I cried because I knew it was over and I didn't think it was fair. I wasn't ready and I knew the baby wasn't ready. The best thing for her was to be inside my belly, not out in this world where anything could go wrong.
So I called my doctor and my mom. Mike called our sister in law to come and get the kids and then called 911. The hospital is 25 minutes from my house and with my history of fast labors, I didn't want to deliver a sick baby on the side of the road.
We got to the hospital at 9am. I was sure that by the end of the day I would have had my baby. The doctor checked my cervix and I was only 4 cm dilated and was not having any contractions. Right after writing my orders the doctor had to go into an emergency c-section. While he was gone the nurses started Mag Sulfate through my IV. I was very confused because that medicine is usually used to stop labor and I thought once my water broke I had to deliver within 24 hours to prevent infection.
After the c-section was done the doctor came back and explained to me that the medicine wasn't being given to me to stop labor. He said while it is used for that and other pregnancy related issues, he was giving it to me as an experimental treatment for the baby. There are recent studies that show that preemies whose mother's receive Mag shortly before birth are at lower risk for cerebral palsy.
My contractions never started so I was told that as long as my contractions didn't start on their own or that the baby and I didn't show signs of infection they would keep me pregnant until I was 34 weeks. I got prepared to stay in the hospital for the next 4 weeks.
On Thursday night at 9:15 I started having horrible back pain and stomach cramps. I called for the nurse and was placed on the monitor. I called Mike and told him to come back to the hospital. They then became 5 minutes apart and I was taken back to the delivery unit. When the contractions got to every 3 minutes I asked for an epidural.
After 2 attempts, the jerk finally got the epidural in. I didn't feel most of the contractions. I only felt them in the left lower side of my belly. After about an hour the doc came back in to check my cervix and said that I was completely dilated and about to crown. She told me not to cough, sneeze, or push until the NICU team arrived. After they arrived I pushed 3 times and she was in the world. She was born 10 weeks and 2 days early.
Unfortunately the esophagus issues that we thought were ruled out actually do exist. She has a tracheoesophageal fistula (her windpipe and bottom portion of her esophagus are connected). This makes it hard for them to keep her stable on the vent. The doctor this morning said that she actually wouldn't even need the vent if she didn't have the esophagus issue. I just got off the phone with her nurse and she said she is very stable right now, however that can change from hour to hour but it feels so good to hear those words. She also has something called a duodenal atresia. Basically with that nothing can leave her stomach through the bowel. It comes back up through her esophagus, which is dangerous because it can then get into her lungs. For that they had to put in a "g-tube". It is tube in her belly that lets the excess air out. Since that has been but in it has been good.
Her heart is a mess but is the least of their worries right now. Right now they want her stable enough to fix the esophagus and her duodenum. She is not allowed to eat so all of her nutrition is through her IV.
This little girl has a hard road ahead but is a fighter. She has a lot to fight for. There are people all over the world that love her and are praying for her to win.

I will post updates when I can, but please continue to pray!


Tuesday, April 7, 2009

Feeling Like A Falsely Accused Criminal

We have a doctor's appointment coming up on Thursday. This one will be another two-parter. First is a Level 2 ultrasound to check for the growth of little Miss Kali and her GI tract issues--hopefully to confirm CHOP's results. I also figure they will take a peek at my cervix while doing the ultrasound. The last time my cervix was checked was on March 17th (what a way to celebrate St. Patty's Day!!) and I was 2-3 cm dilated. That was when I was still in the hospital. At my last appointment they didn't want to check because of the risk of stirring things up. So now I am afraid that if my cervix has gotten any further dilated they will keep me in the hospital again. That is what makes me feel like I'm in jail for something I didn't do. Being on hospital bed rest SUCKS! Both times I have been in the hospital I had no symptoms of labor, aside from very, VERY mild menstrual-like cramps.
So today and yesterday I stared getting this anxiety about going to the appointment. I feel like I am being accused of something I didn't do and am going to court knowing that, regardless of my testimony, I may end up back behind "bars". I feel like I am in a time crunch and need to tie up all of my loose ends at the house before I go so that I have less anxiety while I'm there than I did last time.
And the timing couldn't be worse. Sunday is Easter. While just a "minor" holiday in the eyes of most people, I really enjoy these little holidays. Especially when food is involved! Also coming up in 13 days is my little Rissa-Roo's 2nd birthday and I do not want to miss that special day!
I seriously hope that I am just getting way ahead of myself and completely over analyzing the situation (that's what happens when you give a hormonal, emotional, pregnant woman all the time in the world with nothing constructive to do with it).
I'll let you know what happens! Keep your fingers crossed that by 11am on Thursday I am back on my couch where I belong!!!!

Saturday, March 28, 2009

Uneventful doctors appointments

Let me tell you. Since our first ultrasound on Feb. 18th we have not had uneventful appointments. All appointments since then left us with terrible news, in tears, or wondering how we would split our lives in 2 different cities. Yesterday both appointments went smoothly and I actually got to come home instead of being admitted to the hospital like my last 2 OB appointments.
First we met with Dr. Weber. He is a fetal heart specialist with Hershey. We met with him before and didn't care too much for him. I still don't like him 100% but he somewhat redeemed himself with kind words. He said that he can't be 100% certain that the baby will need corrective heart surgery until she is born and they can do an ultrasound directly on her and not through me. He is pretty confident she will need an operation, but he will make no guarantees until the time comes. Which is pretty much what CHOP had told us as well.
Next was my OB appointment. There we saw Dr. Botti. I had actually seen him the day before on TV. He is the doctor that delivered the famous sextuplets from Jon & Kate Plus 8 on TLC. I thought it was funny. He is a really cool laid back kind of guy. He said as long as I continue to do what I am doing, which is basically nothing, that he thinks we will just continue to go along smoothly.
Next appointments are in 2 weeks. We will have another ultrasound to check measurements on the baby and also check out her GI tract. Then we will see the celebrity Dr. Botti again.
So back to my couch I go!