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 It will also be in our local paper tomorrow and can be found on their website after 10 am

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!