Tuesday, March 31, 2009

Thank You

We wanted to take a moment to thank you all for all your continued love, support and prayers throughout this journey. It is so nice to look on here at the end of the day and see your encouraging messages for us and our little girl. It truly helps to know we have so much positive energy behind us.

This picture is of Callie trying to get away during her first bath this weekend! It was the first time we saw her without all of her tubes and leads.

Monday, March 30, 2009

My Thumb!

Today, while Mommy was holding Callie, she found her thumb! It was so cute! She has a hard time actually coordinating it most of the time, but today she was able to suck on it all by herself!!

Medically, today had its ups and downs. This morning, Callie had her first eye exam. It is very common for premies to get a disease called ROP, Retinopathy of Prematurity. If diagnosed early, they are able to perform laser surgery. But if left undetected, it can lead to blindness. So they start these exams on the babies when they are still fairly young. So far, Callie is disease free! They will check her again in two weeks. The problem is that these exams are very traumatic for the babies. They warned us ahead of time to expect a bad 24 hours following the eye exam, but it is still hard to prepare to watch your baby struggle. We definitely saw that she was off this afternoon and evening, with an increased amount of Bradys. We just pray that she feels like herself again tomorrow!

Sunday, March 29, 2009

A Little Perspective

So while our little Callie is growing every day, she still has a long way to go. We decided to lay a regular newborn outfit next to her just to compare sizes and I have to say we were surprised. Being with Callie everyday, our perspective on the size of babies has drastically changed...I really feel like every baby is two pounds! So laying a full term outfit next to her really brought us back to reality. Grow Callie Grow!!

Friday, March 27, 2009

Look, I have two chins!!

It seams as though our Callie is finally starting to show a little of her weight gain. She is still really tiny and has a long way to go, but as you can see from this picture of her last night, she is starting to get a second chin!! We love it!!

Thursday, March 26, 2009

Latest Update

Callie has had some minor set backs over the last couple of days. They had pushed her down to one liter of oxygen on Tuesday and she just wasn't ready. She started to have more of her episodes where she Brady's and Desats. So they decided to put her back on the heated three liter nasal cannula. We are happy with this decision, becuase we would rather that she use her calories to grow not struggle to breathe. The other thing they decided to do was give her another blood transfusion. Her numbers were getting kind of low and she tends to have set backs when that happens. The blood she got today was her Daddy's! Lee did a Direct Donation through the Red Cross and it came through today for her! Other than that, our girl has been resting nicely.

Monday, March 23, 2009


So this is our Callie, lounging around enjoying life without a tube in her throat! We can't begin to tell you how much better she looks off of the ventillator. We still have a long way to go, but this was a nice step! Over the last two days, they have decreased Callie's oxygen support from 3 liters to a 2 liter cannula. Other than that, they have increased her calorie intake. Since she is already on full feeds, they can't increase the volume, so they add supplemental calories to help fatten her up! They have even started talking about a possible transfer back to St. Joe's in the near future. They just need to get clearence from Neuro.

Sunday, March 22, 2009

I am breathing on my own!!

Today was a big day for our Callie, they took out her breathing tube and she is off the ventilator! Normally, the next step down from the Ventilator is a breathing machine called CPAP, but they decided to skip that machine and try her on a nasal cannula. So far, so good!! Nasal cannulas deliver a higher than normal amount of oxygen to help babies oxygenate their bodies. Nasal cannulas also provide a small amount of pressure as the oxygen blows into the nose, which can help babies’ lungs to stay inflated and can remind them to breathe. She has been relaxing and breathing on her own since around1 o'clock...we can't begin to tell you how much more comfortable she looks! They have said that many times preemies will take a step back and have to be intubated again, but we are praying that won't happen and Callie will continue to breathe on her own! Either way, we are just so grateful she is getting a break from the ET Tube!

This picture is right after they took the breathing tube out. As you can see, she is happily blowing bubbles! The white on her face is residue from the tape (this is now all off!).

We also want to point out that our daughter was wearing purple in the last picture because she is a girl, NOT because she is cheering on the Ravens! Daddy will let her decide if she is interested in sports, but if she is, she will be chanting E-A-G-L-E-S! Also, notice the size of a full term baby bib on our girl!

Saturday, March 21, 2009

Weekend Update

Now that Callie is a little bigger, the nurses are consistently letting us hold her on every good day that she has. It is such a blessing! On days when Daddy is at work, Mommy can do Kangaroo Care and when Daddy is here, we get to dress her up in her cute preemie clothes and take turns holding her! This is Callie today right before we took her out of her isolette.

Johns Hopkins NICU has 14 Neonatologists that rotate coverage of the unit every two weeks. One issue Callie has is that her Endo-Tracheal tube is getting too small for her and she has a significant leak. This basically means that she isn't getting all of the support that the ventilator is providing. At some point, they need to take it out and put in a larger size. Her doctor from last week was very happy to let her ride on the current ventilator settings and current ET tube, assuming her stats remained consistent, when for the most part they have been. Then her new Neonatologist came on yesterday and has changed the plan. He has taken her vent settings down two levels and plans to attempt extubation tomorrow. If she isn't ready, they will go ahead and put in the bigger tube. It would be wonderful if Callie is ready and could get rid of that tube. You can really see her annoyance with it. She is always trying to move her head away from it...you feel bad for her, but at this point, she does need it. They tell us that many times, extubation is not successful and they have to try several times before it works. So, we hope that it works and pray that either way it isn't traumatic for our girl.

Thursday, March 19, 2009

2 Pounds!

Feedings have been going pretty well and when Callie was
weighed last night she hit the 2lb mark! It is noticeable in her cheeks. While the feedings are off to a good start we were told it is common to have to stop and restart several times, but so far it has been good enough to get her off IV fluids/nutrients completely! Her lungs continue to fluctuate and with her chronic lung disease it will probably continue this way for many weeks before we see significant improvements. It seems like there is always some troubling news that comes along with each positive step. Part of Callie's reservoir in her head came loose the other day and the doctors were worried that the catheter came out of her skull and would need surgery, so after several ultrasounds and x-rays, they determined that it was still intact and working properly. So the good news was that it was still where it needed to be, the bad news is that they also found some damaged tissue around her left ventricle. This is very common for babies with brain bleeds and we were expecting to see this at some point. The prognosis is still unknown and will remain that way for a while. It can take months to several years to see what lasting effect, if any, this will have on her. Some babies do really well while others really struggle, regardless of the size of the bleed and damage. This finding just increases her chances of having some lasting effect. We will do everything we can do to stimulate brain development, like reading to her and playing her music. Babies have amazing resiliency and their brains have the ability to compensate for the damaged areas. We just hope and pray that Callie will be able to adapt and live a happy and fulfilling life.
We wanted to thank you all again for your thoughts and prayers. We also wanted to ask you to pray for another family here in the NICU. Lily Grace was born on Sunday with Spina Bifida. She had surgery on Monday and has been making daily steps towards recovery. We have had the opportunity to get to know her parents and we all strongly believe in the power of prayer. If you could keep both of our girls and all of the other babies, as well as their medical staff, in your prayers, it would mean a lot to us.

Sunday, March 15, 2009

Callie's New Friend

Here is a picture of Callie and her first stuffed animal, a little pink dog that her Great Aunt Kim got her. She likes to snuggle with it!
Today they have increased her feeds again, this time it is up to 13 cc's every four hours. If she can continue at this rate, she will be on full breast milk and off of the IV by this weekend. We don't want to get ahead of ourselves though, they say this feeding process can start and stop many times.
They also have attempted to decrease the ventillator settings. We will see how she tolerates it the rest of today and this evening. For the most part, she has been restful today with the exception of a few moments where she gets mad at the world! Callie is not a fan of when the doctors examine her. I think she can sense that a stethoscope is nearing her isolette!

Kangaroo Care

This picture is of Mommy and Callie having Kangaroo Care this week. It was such a treat! Mommy was alone at the Hospital while Daddy was at work and they asked if we wanted to try it. Basically, it is where Mommy holds Callie bare chest to bare chest, it is also called "skin to skin contact." They say that the benefits for Callie are that it stabilizes her temperature and heart rate, decreases stress, decreases pain, increases weight gain, improves brain development, and improves respiratory rate and oxygen stats. It was amazing! They put us behind a screen so that we had some privacy and I got to hold her for over an hour. They did come check her temperature half way through and it was just where it was supposed to be. Her stats did improve while I was holding her and she slept soundly. One of the nurses told me that they did a study with Kangaroo care and apparently, only Mothers (without drug addiction) can maintain the babies temperature appropriately. They said that we are able to heat them up when they are cold and cool them down when they are hot. It was the best hour Mommy has had in a long time!
Today has been status quo for our Callie. They increased her food again to 10cc's every four hours which is great. And they are still struggling with the fluid in her lungs. They did increase her dosage of Lasix in hopes to control the fluid levels better, we are praying that it helps! She has managed to get some rest today, which is a very good thing!

Saturday, March 14, 2009

Happy Birthday Callie (a day late!)!!!

Happy 1 Month Birthday Callie (a day late!!) Sorry, we had some computer issues the past few days! Callie is doing well with her feedings and they have increased her intake over the last few days. She is up to 8cc's every four hours! We just can't wait until these feeds start reflecting in her weight!! As of last night, she is 1 lb 12 oz...so we are slowly getting there!! Other than that, things have been pretty quiet. They are still trying to get the fluid out of her lungs so that she can breathe better, but it sounds like it will not happen over night. So we are just thankful for every little improvement she can make on the ventillator. We just hope she can get some rest and save her calories to help her heal and grow!

Thursday, March 12, 2009

Eating Again!

Since Callie started to settle down and get some
rest over the past couple of days they decided to try to feed her again yesterday. She got her first feed at noon yesterday and tolerated it well so she has been getting regular feedings every 3 hours since! Hopefully Callie will be able to hit the 2 lb mark in the near future. While the feeds are a great step forward Callie's lungs are having a little trouble again. She can't seem to get them to dry out so they are giving her Lasix to assist and adjusting her ventilator settings to give her a little more help. Hopefully the combination of the 2 will send her lungs back in the right direction and work towards getting her off the vent. The Neurologists did stop by yesterday and they are pleased with the drainage of fluid in her head and will do follow-up ultrasounds weekly to make sure it continues to do so. Thanks again for everyone's support!

Tuesday, March 10, 2009

Starting to Feel Better

So after a couple rough days in a row, it seams that our Callie is starting to feel better. Yesterday afternoon they decided to give her some anti-aggitation medicine becuase she just seemed really upset, especially when people touched her (which they do almost constantly!) The medicine sedated her a little and allowed her to sleep, which she hadn't done in two days. They repeated the medicine last night and she has continued to rest throughout the day without any additional doses. She has still had a few Bradys, but a lot less than the past few days. Her nurse even agreed that she had a good day. So we are hoping that she is starting to feel better. Her doctors said that if she is stable for a few days in a row, they will start her feeding again. We don't know what made her feel better, it could have been the medication, the blood transfusion, or several other things that they adjusted last night...we are just happy she is acting more like herself. I want nothing more in the world than for her to have some quiet time to heal and grow, without any new issues!!

Sunday, March 8, 2009

Weekend Update

We have had a weekend of ups and downs. Callie came out of surgery very well. Mommy and Daddy even got to hold her for an hour Friday night. This is her looking up at Mommy while being held! Saturday morning was uneventful as well. Then Saturday afternoon Callie started having some more Bradys (where her heart rate drops) than usual. This has been pretty much going on since. They are not sure what is causing the change at this point. They are just in the process of eliminating causes. At this point, they suspect that it could just be her body getting adjusted to the change in pressure in her head from the surgery, it could be she needs another blood transfusion, it could be a brewing infection, or simply a result of her prematurity. They already did a head ultrasound and have determined that the reservoir is draining as it should be. I think Mommy and Daddy are more worked up than the doctors. We just want her to be able to feed and grow, which they are hoping to start again this week (possibly tomorrow). Also before surgery Callie was down to the lowest ventilator settings and the doctors said if she wasn't going to surgery they probably would have taken her off because her lungs have improved to the point where she could at least attempt breathing on her own, they hope once they get the Bradys under control they will be able to say bye to the vent too! Thanks again for everyones support!

Friday, March 6, 2009

Another Successful Surgery

Thank you everyone for your thoughts and prayers! Callie is out of her second successful surgery! It was only about 10 minutes from the time they called out to say that surgery had started until the Doctor came to speak to us. From what her Doctor said, everything was a success and she handled it great! We still won't get to see her for a little bit while they get her settled in and recovered. We will give you more details later as we understand them more. We feel so blessed to have all of you supporting us and to have the skill and knowledge of the medical teams that have had a hand in Callie's progress. We thank God everyday for giving us such a little fighter!

Wednesday, March 4, 2009

Surgery Scheduled

Here is a picture of our darling Callie showing off her bandage from her 1st surgery! The little pink heart under her arm is covering the stitches from her PDA ligation. I am sure she will like the fact that it is barely noticable when she is older!!
Today Callie was finally able to settle in at Johns Hopkins. Last night and this morning were a little rough because they kept examining her and drawing blood so she barely got a moments rest. This afternoon and evening she was finally able to catch up on some much needed rest. We got to speak with the Neurosurgery team today and it looks like Callie will be having her surgery on Friday. Right now it is scheduled for one o'clock, but that is subject to change. We also got to meet another family in Callie's room at the NICU that had the same procedure a few weeks ago and he doing great and has doubled his weight since. We are hoping Callie will be able to bounce back as quickly!! They haven't fed Callie anymore since the transfer and I don't imagine they will again until she has recovered from surgery. At her cares tonight, she is up to 1 lb 10 oz!! Thanks to everyone for your continued support and please keep Callie and her team at Johns Hopkins in your prayers.

Tuesday, March 3, 2009

Settling In

Thank you everyone for your thoughts and prayers today. Callie had an uneventful transport to Johns Hopkins. The Nurse that was with her in the ambulance said she was a perfect angel and then she proceeded to give her Hopkins nurses a hard time. She wasn't very happy today. They stopped her pain medicine this morning and then with leaving one hospital and going to another requires a lot of poking and prodding and a lot of blood work. When we left tonight, she seemed to finally be settling in to her new bed. Their plan for tonight is to just have her get acclimated and then tomorrow they will make her treatment plan.

On a fun note, yesterday we were able to have a lot of quality time with Callie. Both Mommy and Daddy got to hold her!! It is such a blessing to have the opportunity to do "normal" parenting things...even as simple as holding and diaper changing!

Going to Hopkins today

Callie is being transported to Johns Hopkins this afternoon, she will get settled in there tonight and evaluated by the Neonatoligists and Neurosurgeons. From there they will make a plan on how to treat the Hydrocephalus. Please pray for Callie, her transport team, and new doctors for a smooth and safe transition to her new bed! We will update again later when we have a more detailed idea of what Callie has in front of her in the next couple of days. Thank you all for your continued support!
PS. Thank you for shoveling our driveway to who ever took care of that!

Sunday, March 1, 2009

I'm Hungry!!

Today is a big day our little fighter! She finally gets to eat!! Tonight at 8 they are starting her on what they call "gut priming". They are currently thawing some of Mommy's colostrum/breast milk and they will use that to get her digestive track ready for use! They will start slowing through her OG tube and make sure she tolerates it well. She is 16 days old today and this is her first meal...so she must be hungry! We are just hoping this will help fatten her up a little so that she doesn't look so small compared to Daddy's hand.

Today was also a big day for Callie medically. Unfortunately, the spinal tap did not work, so they have made the decision to transport her either Monday or Tuesday to Johns Hopkins where they deal with this more regularly. Most likely, she is looking at surgery again later this week to put in a reservoir in her head. This will provide an outlet for the Neonatologists to drain the excess spinal fluid that is causing the pressure in her head until the blood clot dissapates. It is scary to think of another transport and another surgery, but we trust in God and know this is what Callie needs and that Johns Hopkins is the best place for her to be going. We hope down the road, she will be able to come back to St. Joe's to feed and grow. Callie also made big strides with her lungs today. She had her best x-ray yet and she was able to get the settings on the oscillator low enough that they have transferred her back to the traditional vent. And so far today, she has been requiring no additional oxygen which is making her Doctors and Nurses very happy.