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.

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.

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!

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!

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!

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

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.
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.

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!

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!!

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!

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!

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........


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!

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!