The Latest Challenge

Sorry we weren't able to post yesterday, it was a busy day. Callie had a rough afternoon and evening, but was finally able to get some rest this morning. On my last post, we had mentioned her next challenges...well it appears that one is on us now. Back when Callie was a few days old, she had a intraventricular hemorrhage, or brain bleed. These are fairly common in premature infants. What can happen over time, which they follow with head ultrasounds, is hydrocephalus. So the pressure in her head is building and they want to relieve it both for her comfort and also to allow her brain to grow. Because of her size, there are not a lot of options. The best one now, according to the consulting Pediatric Neurosurgeon at Johns Hopkins, is spinal taps. This procedure may allow time for the blood clots to clear by themselves and for the fluid pathways to open up. So, Callie got one today, and tolerated it well, but unfortunately, they weren't able to get any fluid out. So, they said they will probably try again tomorrow. If this doesn't work, there is a medication that can slow the production of spinal fluid, but the issue is it can mess with their triglycerides. It is scary, as everything seems to be these days, but we are continuing to try find the strength through our faith so that we can be strong through each new hurdle she faces. We are praying that the spinal tap tomorrow will be successful in relieving pressure and also that the clots will dissapate quickly. And of course, our little Callie is braver than Mommy and Daddy and continues to fight every step of the way!

On a lighter note, Daddy got to change is first diaper today!!

Back at St. Joe's

We are finally settling back in to St. Joe's. Callie did great on her transfer...impressing everyone, as usual! Yesterday afternoon and this morning were a little challenging with trying to manage her pain. But it appears that they have figured it out now and she was finally able to rest this afternoon. Now that we have her PDA under control, the next issue we have to face is PIE in her lungs and the IVH bleeding that occured in her head. We will update you on these issues in more detail later. For the next few days, we are just hoping that Callie can take it easy and regain her strength after surgery.

Transporting Back to St. Joe's

Good Morning Everyone! We had a pretty good day yesterday. Callie was out of it for most of the day and the staff made sure that she was nice and comfortable. I don't think we had mentioned it, but before the transfer they had put her back on the Oscillator (Ventillator) because of her lungs getting damaged from a combination of the PDA, prematurity and the ventillator itself. Since the surgery, they have been able to gradually take the settings down on the oscillator, so they feel she is stable enough to transport her back to St. Joe's this morning at 11. Please keep the transport team and Callie in your prayers as she makes her way back to St. Joe's!

This picture is of Callie in her first hat here at Sinai. She loves to open one eye when she is first waking up and going to sleep.

Surgery was a Success!

Thank you everyone for you thoughts and prayers. Callie's surgery was a success and she tolerated everything like a champ! She has such amazing strength! The staff here at Sinai was absolutely amazing and so supportive. They even gave us a room around the corner for last night and the next two nights so that we can be close to our girl. We still haven't been allowed back to see her, they said they need about 15 minutes to finish getting her cleaned up, or what they call her "SPA treatment". We will try and update everyone tonight. Again, we can't thank you all enough for your prayers and positive thinking!h

Surgery

Callie had a pretty uneventful transport to Sinai Hospital in Baltimore today. We spoke with the pediatric surgeon tonight and she will have surgery around 10am tomorrow. They said the procedure itself is only about 30-45 minutes, but the setup and takedown will make it more like a 2 hour procedure. Please keep Callie, her doctors, and her nurses in your prayers. Thank you!

Daily Update

So we continue to ride the ups and downs in the NICU. Yesterday was a pretty bad day. Callie had a plug in her ET tube and had to have it taken out and a new one put in. It was pretty traumatic. Callie was of course braver than Mom and Dad. Today was better, she rested comfortably most of the day and we hope she can do the same tonight. She should have her repeat Echo Cardiogram tomorrow and we are hopeful that the medicine will have made a difference. If not, they will begin scheduling transfer and surgery.

Medical Update

Another day on the rollercoaster ride of the NICU. Callie's heart problem, Patent Ductus Arteriosus, is becoming more of an issue. They gave her one round of medication hoping to close the duct, but it didn't work at all. They have started her on a different type of medication and have one more round tomorrow and they are hoping that this will work for her. They will do a repeat Echo Cardiogram on Monday or Tuesday to see if it worked. If it doesn't, it looks like we are looking at heart surgery. We are praying that her medication will work, because surgery means having to transport her to another Hospital (Johns Hopkins or University of Maryland) plus surgery on a 1lb7oz baby.

They warned us that although her lungs are functioning well at this point, there is a good chance they will start to deteriorate in the coming days and weeks. This is from the ventillation and the Patent Ductus Ateriosus. Despite these issues, her temperment is great! She is still as fiesty as ever. And has been enjoying her "chill" time over the past couple days.

Thank you to everyone who is supporting us through thoughts and prayers. Your continued support means the world to us.

I opened my eyes today

Hi everyone! I opened my eyes today and I am still loving my pacifier!! My Mommy and Daddy will update you more later!!

Love you,

Callie

New Challenge

So we are learning very quickly that have a baby in the NICU is quite a rollercoaster ride. We had two great days in a row, and then a terrifying night last night. Callie's newest challenge is that her veins are extremely weak. They only last on IV for 1-2 days and they need to find another location. The problem is that she is going through veins faster than she can rebuild them. Any additional prayers are appreciated. Callie continues to fight, and she is braver than anyone we have ever known.

They did start providing her fat through her IV and they are hoping to start her on breast milk in the next few days. We will keep you all updated!

Fun Fact of the Day

We had a wonderful surprise today! This afternoon, they let Mommy hold Callie! From her stats during and after the hold, Callie loved it! We didn't expect to be able to do this for awhile...it was amazing!!

New Ventilator

Medical update for 2-17/2-18. Callie has had two good days in a row!! It is all relative, of course, but each good day is a blessing. Her main Neonatologist, Dr. "Mike", gave us a good way to look at her current situation. He is a great doctor becuase he knows how to break things down so that we can understand things! He also had a baby in the NICU, so he can relate to our daily struggles. How Dr. "Mike" explained it to us is that Callie is in critical condition. Imagine a road next to a cliff. There is always a dirt edge between the road and the cliff and that is where Callie is. The past two days she has taken baby steps away from the edge and is making her way closer to the road, but she is not there yet. But again, we thank God for every step, no matter how small!

The picture above is of Callie with Lee's wedding band next to her arm! She is so tiny...but absolutely perfect!!

Until yesterday, Callie has been on an oscillator. That is a type of ventilator that breathes for Callie 900 times per minute...short, shallow breathes. It was working well...but is very stressful on her little body. Yesterday afternoon, they moved Callie to a different ventilator that actually lets Callie breathe on her own. They have a system that guarentees she breathes at least 30 times per minute and if she doesn't on her own, the vent fills in for her and helps her out! She is doing great on the new ventilator...her stats are actually better on it and she looks so much more peaceful.

Medical Update

We wanted to provide everyone with some of Callie's medical challenges. The link below is to the march of dimes where you can get more detailed information. http://www.marchofdimes.com/prematurity/21326_1157.asp

Callie's two biggest challenges that she is facing right now are Intraventricular hemorrhage (IVH) and Patent ductus arteriosis (PDA). Both are very common in premies, but both carry significant risk. With the IVH, it is basically a waiting game at this point. She had a significant bleed on the left side of her brain and more moderate bleed on the the right side. They believe the bleeding has stopped now and it will just take time to assess the damage. It is possible she will have to have a procedure in a few weeks to relieve the pressure. The hardest thing right now is that there are no clear answers. Each baby handles these bleeds differently. The only thing we can do is pray that Callie continues to rebound from each set back. The PDA is more common, from what we are told. There is a medication that is supposed to help close the duct that they are trying to get Callie back on. The problem was that she couldn't take that medication with the active bleed. Today she is getting more platelates so that hopefully tonight, she can start that medication again.

We have attached two pictures to this post. The first is a picture

of Callie's diaper next to my blackberry. And the second is of her backside. I am sure when she is older she will hate that I posted this, but it is too cute not to pass along! She definitely got that butt from Daddy!!

Callie's First Pacifier

2-16-09 Callie's First Pacifier!! Last night at our visit we noticed Callie was making a sucking motion and today, she got the world's smallest pacifier! The blue suction was used to hold the pacifier in place, because they didn't believe she would be strong enough to hold it on her own...well, by mid morning, she had pushed away the blue suction and was sucking on her own!!

Other fun firsts...today Mommy got to take Callie's temperature 3 times and change a diaper!!

Callie

Callie 2-13-09

Welcome to Callie's website. First we want to thank everyone for their love and support throughout the last two weeks. This time has been extremely difficult for all three of us, but it helps knowing that you are all behind us. We thought that this website would be a nice way to update everyone daily on our little girl, Caelyn May "Callie". So check in from time to time and please keep the prayers and positive energy coming our way!

Callie was born, via emergency c-section, on February 13th at 9:56pm. She weighed in at 1lb 5.3 onces and was 11 3/4 inches long. So far she has proven to everyone that she is a fighter. They didn't expect her to make it through the first night, but she did and continues to battle every challange that comes her way. She has a long journey ahead of her, but we hope and pray that with God's love and support she will make it through.