Miss Callie

*This page is still under construction.  Please check back later.
On this page:
Callie's current progress
Major Milestones for Callie (including links to video of her walking)
Life Lessons from Callie
Birth Story and NICU

As you can see, Callie has a wonerful attitude when
it comes to her therapy!
Callie's current progress (updated 3/11/2011)
Callie can now walk up to 13 1/2 feet at a time!  Gone are the days that we count steps, now we are looking at distance.  Her goal right now is to make it to 15 feet.  Almost there!

Unfortunately, Callie has had some set backs in the last 2 months.  She had been doing amazingly well, progressing at an impressive pace...but then she got sick.  She was mostly down for about 6 weeks.  During that time, she has lost a great deal of strength, stamina, and her tone is now very high (her tone goes up when she gets stressed, has a growth spurt, the weather changes suddenly, or she doesn't get her stretches/exercises in).  We are working to rebuild her lost strength, but it is going to take time.  Prayers would be appreciated.  Everything is physically hurting her right now because her tone is so high.  We are working with her, in attempt to limber her back up so we can get back to a full therapy schedule.  Even in light of these set backs, we choose to say, God is good, all the time!

Major Milestones for Callie

Callie celebrating her 3rd birthday in October 2010
with a cake I made for her.

Callie is a very special blessing!  Each milestone she makes, we count as a miracle and celebrate as such!  As you can see from this picture, Callie realizes how special her accomplishments are and celebrates them, too!
- Callie has been in therapy since Sept., 2008.
- She started crawling February, 2009 at 16 months old
-  She pulled herself up to a standing position for the first time in April, 2009 at 18 months old
- She was officially diagnosed with spastic diplegia cerebral palsy in Oct., 2009.
- Callie took her first independent step on April 8th, 2010.

This is the first time Callie got herself to a
standing position all by herself!

- She started Neurodevelopmental therapy in Sept., 2010. Click here to see what this looks like.
- She has had 2 bilateral strabismus surgeries, one Sept., 2008, the other Nov., 2009.
- You can find video of Callie walking 4/201011/2010 and 2/2011 which is a good indication of her progress!

Life Lessons from Callie
It is no secret that I had always thought I could *never* handle having a child with a disability.  That it would somehow be too much for me to handle.  But having Callie has really opened my eyes to what it means to have a disabled child...she is so special, and the lessons I have learned from her have been amazing!

Callie works so hard for each and every milestone!  I have learned what true dedication and determination is from this little girl.  She has to work twice as hard as the rest of us for half the amount of progress, but continues to do it with a smile on her face that can light up a room!  She will happily tell anyone who will listen that, "God loves me.  He made me just right!  I am special."  Oh, that I could take everything in stride the way that she does so matter of factly, and then proceed to do what I need to do!  She is such a blessing to our family!
Birth Story and NICU:
Chris' parents had all 4 of the older ones over night so we could have a date night. I had just been released from the hospital the day before for pre term labor (where I got my first ever positive result on a FFN test), so we decided to have a date night in. We had a nice dinner together, and were watching a movie when I felt something strange, and Chris heard a POP. I was 30 weeks, 2 days along. "Can you get me a towel?" I asked. He ran off to find a towel, while I laid there, and tried to not move.

Things got busy at this point...we got things together to head back to the hospital. We called his parents, to let them know what was going on and that they should probably come. We had them coordinate with Chris' cousin on taking our 4 olders so they could come to the hospital with us.

My earliest preemie before her, was Brianna, at 32 week 5 days...then the twins at 34 weeks 5 days. I thought back to how much weaker Brianna was than the twins, and to know that Callie would be that much earlier again was really hard! This was not a good trend. I wondered if we had done the right thing in having a reversal. I wondered what this would really mean for my sweet Miss Callie Grace...I asked the doctors what we could expect from 30 week preemies...and they really didn't have an answer because of how different each preemie is.

We got to the hospital, and got set up with monitors. There were no contractions. We waited for many hours. Still nothing. They decided to give me antibiotics and see how long we could make it. They did ultrasound. She was in a frank breech position and would need to be a c-section, and determined that while the fluid level was VERY LOW, with monitoring, we could continue the pregnancy. They said every day is that much better for Callie. They said if there were ANY sign of infection, which might include a fever, Callie not tolerating having such low fluid, increase in white blood cells, or my body starting labor on its own.

The next morning, I had another ultra sound to check on Callie's biophysical profile. There were ZERO pockets of fluid. I could see her little face smashed up against the wall of my uterus. The doctors decided with 6 out of 8 in her biophysical profile that we could continue the pregnancy. I asked them about the ZERO fluid count. They said with constant monitoring, she would be fine. I told them that with another pregnancy, they were concerned about low fluid, and talked about the danger of baby getting into a position of pinching the cord and not getting enough oxygen...they said at this point the very slight risk of that was better than a 30 week preemie. They also ordered because of the degree of 'long term bedrest' that it was necessary to put me on blood thinners, but said before the birth, which would have to be a c-section, I would have to discontinue it for at least 24 hours. Later that afternoon, I was taken OFF constant monitoring...

She had the same biophysical each day that week. We made it 6 days. On the 6th day, I woke up to some contractions. I knew this would be it based on how I was feeling. I didn't tell the nurse right away. She came in a couple hours later, and I let her know then. She called the doctor, who said to give me a dose of turbutaline to stop the contractions. I asked why they were trying to stop contractions when my body is obviously trying to start labor on its own. They said it is still worth trying to make it that much longer in the pregnancy, but did order the blood thinner to be withheld. I received that first dose at about 9 o'clock am.

It worked for about 45 minutes. Then contractions started again. By this time, I had a low grade fever. The doctor, who was told about the contractions and the fever, ordered another dose of terb, saying if my body is really serious about this, nothing they could do would stop it. Again, I questioned why, when it is looking like there is some sort of infection. He said that there is still nothing definite about it. The doctor also ordered the blood thinner at this time. By the time the nurse talked with the doctor, came in to tell me the new orders, I asked to speak with the doctor, and he was able to get back to me, it was now about 10:30 am.

This time, the terb did not work. Callie's heart rate immediately went tachy, well over 200, never even dipping into the 190's. I kept asking if she was ok, and isn't her heart rate way too high? The nurse just said, it is a little high, but that they were monitoring her.

I felt completely helpless. I didn't know what else to do. I was bringing up all that I could...and nothing seemed to be helping. My fever was now creeping up, too. I was at 102 w/meds on board. My blood work came back at this time as well, with elevated white blood cell counts (signifying an infection).

The nurse called the doctor once again, with all of the new reports...fever that meds won't bring down, tachy baby, elevated white blood cells, turb not helping, and continuing to contract.

This is when things really start to get hazy for me. The contractions were getting more intense, the nurse wanted me flat on my back so give the most blood flow to Callie (who was in distress, but no one wanted to comment on it!), I literally felt as though I couldn't breath with each contraction. I felt myself getting weaker and weaker. By 1 pm, I was unable to sit myself up, and my fever was in the 103-104 range. The doctor still said he wasn't sure if we were going to have a baby that day. By now, I was too weak to fight or argue or bring up any of the things going on. Callie was still tachy, now only dipping down into the 220's, otherwise staying over 240! I was getting more and more sick by the hour.

At 5:00 PM, we were told that Callie would be born that day, but that it would be risky because of the blood thinners on board. I was brought in for an emergency c-section.

Callie was not breathing when she was born. They had to clear out lots of thick mucous from her lungs (from having a zero fluid count for 6 days!). They whisked her off to the NICU before I knew another about her. Dh went with her.

I was finished up, and brought into recovery. I kept asking about Callie, and no one knew anything. No one could even tell me if she had made it! They kept checking the computer for me, but because the NICU staff had not updated it, there was nothing they could tell me - and they wouldn't call down for a report.

The first nurse I had said, "With all that laboring you did, you got yourself to a 9! If you would have just stood up, that little peanut of yours would have just slid right out!" I was not amused or impressed!

DH came back with this picture of her. She was ok, and breathing on her own. They had already put the tube in to clear her lungs out, and left it in for several hours, but never had to turn any oxygen on. I was grateful!

A while later, Chris went back down to the NICU to see her and brought back the picture below.  I kept asking when I could go see her, but the nurses said it would have to wait 12 hours from surgery...I asked for a pump, and they said that I should really wait a day or two to give myself time to recover, and that being a 31 weeker, she wouldn't be eating for quite some time. I told them I wanted to pump NOW, that I needed to get my supply started, etc. I argued with them about it until a pump was brought, about 4 hours later. 

I started calling the nurses' station as soon as the 12 hours had passed...but they were too busy to bring me to my baby girl. It was about 18 hours after my c-section that I was allowed to make a 10 minute visit. The NICU nurse there that night (who happened to be my favorite nurse during our stay who we had frequently!) let me hold her. She was so tiny and fragile at 3 lbs 5.7 oz! I had trouble that first time getting her in a good position that didn't cause her to have positional apnea.

I like the perspective of this picture.
You can see just how little Callie was
next to my hand!
The next day, it came out that the infection we had was a particularly aggressive form of MRSA. I would have to stay in the hospital until they got it cleared up with IV antibiotics. They told to me that a hysterectomy may be necessary to keep the infection from being spread to the rest of my body, and that they would recommend me being proactive and doing it now. I did not allow the hysterectomy, and asked for prayer - lots of prayer! It took a week, but God healed the MRSA! Starting the 2nd day, I walked to and from the NICU, trying to regain mobility after the surgery. The c-section was worse than I remembered it being 6 1/2 years before!

Meanwhile, Callie was fighting for her life against the MRSA. I went and sat with her, praying over her, and talking to her about her big sisters, who couldn't wait to meet her!

NICU life was full of the normal ups and downs that go along with having a preemie baby. She spent 30 very long days in the NICU before getting to come home.

God was so faithful to see us through all of this! I praise Him and thank Him for Callie's life!

1 comment:

  1. God is so good! Thank you for sharing this with us all! Blessings on your beautiful Callie as well as the rest of your sweet babes.