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!!!!