Having fun

I forgot to mention a few things in the last post. Catherine's cardiologist took her off of one of her meds completely and reduced the amount of her other medication. So now Catherine only gets one dose of Lasix a day. Our next visit to the cardiologist will be on January 21st. During that visit they will sedate Catherine so that they can get some good information during the echo. The less Catherine moves around the better the information.

Catherine has recently started to blow "raspberries." This may not seem important but it is actually a part of speech development. It also seems like Catherine might be getting some teeth soon. As you can see in the picture she likes putting things into her mouth (toys, her hands, our hands, etc.) This is exciting since she is 8 1/2 months old and she doesn't have any teeth yet! Catherine has finally made it into the next size clothing, she is now in 3-6 month clothing. This is exciting because it is a definite sign that she is growing, she has a lot of catching up to do!

I couldn't post a picture of Catherine without posting a picture of her with big brother, Christopher. He absolutely loves his baby sister. Just this morning he said, "There's my beautiful baby sister, what a cutie." He's so full of sweet things to say to her, hopefully that will last for many, many years. As you can see he also loves to give Catherine kisses all the time.

Merry Christmas!

I hope that everyone had a wonderful Christmas! We have been very busy celebrating Catherine's 1st Christmas and Christopher's 4th Christmas. Catherine has enjoyed getting many new toys and plenty of pretty new clothes. She really likes being independent while she sits in her new seat that GiGi and Pop gave her. Christopher was so excited about everything this year which made this year even more fun for me and Dave.

On Tuesday at Christopher's preschool, Mt. Carmel, we enjoyed seeing his class perform "Away in a Manger." Each student was dressed as a person or animal that was at the original manger. Christopher was Joseph! He did a great job, I could actually hear him singing, and we did the best we could with his Joseph clothing.

On Monday we visited Catherine's cardiologist at Hopkins. She was happy with how Catherine looks and with the amount of food that she is drinking now. The echo showed a couple of things to keep an eye on. Catherine still has some blockage in one side of her pulmonary artery, which the doctor said isn't necessarily a bad thing just something to keep tabs on. Also, there is still a small hole where Catherine's heart was repaired. Again, the doctor is not concerned about this and she said that Catherine could live with this hole if it does not close on its own. Overall, the repair was a huge success considering that Catherine would not have been able to live if her heart was not repaired. The cardiologist also told us to keep an eye on Catherine's formula intake and her breathing because if her intake drops dramatically and her breathing becomes rapid then that could be a sign that the sutures in her heart have busted open. She assured us that this is very, very rare. Just when I thought we were out of the woods, that's something that will stay in the back of my mind.

Catherine continues to amaze us everyday. She has taken in over 1000cc several times this week. During the week after she was discharged she gained almost a pound! She has not had any pain meds (oxycodone or Tylenol) since Sunday night. Catherine seems quite comfortable, she has been busy playing, rolling over, sitting up (with some assistance), and watching her brother. She still likes to smile at everyone that smiles at her!

Getting ready for Christmas

We have been busy getting ready for Christmas this weekend. We decorated the house on Friday night and finished up decorating our Christmas tree on Saturday. Christopher is just so excited about Christmas. I got the decorations out of the box and he put them around the house. He also enjoyed hanging ornaments on the tree. He was in charge of hanging ornaments on the bottom half of the tree. Catherine likes looking at the tree at night when the lights are lit. Aunt Jenn, Uncle Mat, Christopher, and I went to Jeanine's holiday party on Saturday night. Christopher was having such fun that he did not want to leave even though it was 9 p.m. (way past his bedtime!)

Catherine is still a very thirsty girl. Yesterday she drank about 945 cc of formula, that's over 31 ounces! I can't wait to see how much she weighs when we visit the cardiologist tomorrow. Her visit tomorrow will include an echocardiogram, it will be interesting to see her new and improved heart.

Keeping busy

Catherine continues to do very well recovering from surgery. We visited her pediatrician last night to have her stitches from her chest tubes removed. Catherine did well, she only cried a little bit because she had been sleeping until I laid her on the table. Mommy on the other hand did not do so well. I was bending over to hold her hands and reassure that she's a good girl when I started to feel faint after two of the three spots that were stitched were taken care of. I have never felt like that before. Considering what we have been through over the past couple of weeks, I was quite surprised at my reaction to seeing Catherine have stitches removed. I am certain that I made a good career choice, far away from the medical field. Luckily Dave was able to step in to hold Catherine's hands and talk her through the rest of the visit.

Catherine has continued to be quite a hungry little girl. Yesterday she had about 825 cc of formula, that's almost 28 ounces. She has never had so much to drink in one day. It's quite a change for us, a good change. Looks like she'll have about the same amount today. She is still so happy with herself, offering smiles to everyone. Maybe I'm reading a little too much into her smiles, but it's almost like she knows that she's done something really good and she's so proud of herself.

I haven't had a chance to post any pictures lately. So, I'd like to share some photos from the past few weeks with you now. These pictures were taken on the morning of Catherine's surgery (12/8/08) around 6:20 a.m., Dave and I took her into the OR around 7:00 a.m.

(Daddy, Mommy, and Catherine)

(Pop, Mommy, Catherine, Aunt Jenn, and GiGi)

Santa visited the PICU on Catherine's last night there (12/11/08). She slept through the whole visit.

Catherine left the PICU around 1:45 p.m. on Friday (12/12/08). She's actually looking at the camera, I think that she was just as excited as her Mommy!

Glad to be home

Catherine has continued to improve everyday. She surprised me yesterday when she rolled onto her belly while playing. I would think that would hurt after having open heart surgery just a little more than a week ago. I guess she was not in any pain because she stayed on her belly for quite awhile. We have continued to ween Catherine off of the oxycodone that she was taking for pain. She only received two doses today and we'll try just one dose tomorrow.

We went to the pediatrician on Monday night for Catherine's RSV vaccination. Her doctor was surprised that she was already out of the hospital and she was surprised by how good Catherine looked. I have noticed a change in her complexion. Her coloring is more even now, whereas before surgery she was slightly blue around her eyes. Catherine has also started to drink more and more formula everyday. Before surgery she would drink anywhere between 400-500 cc of formula a day. We only know this because we have measured every bottle that she has had since she was born! Yesterday, she drank 540 cc and today she's on track to have about the same if not more. I can't wait to start feeding her cereal from a spoon, that should be fun, and I'm sure that big brother will want to help!

Tomorrow we will visit the pediatrician again so that the stitches from the chest tubes can be removed. Then on Monday we visit Catherine's cardiologist at Hopkins. Of course I'll keep everyone posted on how things go. I am still amazed at the progress Catherine has made in such a short time. What a great gift!

8 months old

Catherine is 8 months old today! She is such a happy little girl. I have seen so many smiles since we've been home. She had a really big smile for her brother when GiGi and Pop dropped him off yesterday afternoon. Christopher was so happy that he ran to his sister, got real close to her face and welcomed her home with "there's my baby sister, you're such a sweetheart."

Last night Catherine played on her playmat on the floor. I was a little worried but the docs said that she wouldn't do anything that felt uncomfortable to her. So, she played just like she always has, grabbing toys above her, rolling onto her side, etc. After all of that activity Catherine had a good night sleep, I think she enjoyed being in her own crib.

We cut down on her pain meds today. She was getting the meds every four hours yesterday. Today we'll try every 6 hours, then maybe just 2 doses tomorrow. We'll see how it goes. She's such a tough little girl.

It's so nice to have everyone home, even the dog is back home. Our thanks goes to Aunt Jenn and Uncle Mat for keeping Sally for a few days. It feels so good to have everyone here. It's hard to believe how far we've come in just one week.

We're going home!

After a good night and steady feedings, we're going home! I think that Catherine is excited, I've seen so many smiles this morning and especially at midnight last night. I know that Dave and I are very excited, too. I can't wait to see Christopher's reaction when he sees his baby sister again. Wow, I can't believe that this part of our journey is coming to an end. It's been almost 11 months since we received the news about Catherine's AV canal heart defect and the hard part is finally over. There's always the chance that she'll need surgery again for a leaky valve, but that's not nearly as serious as what we have been through.

We are going home with a perscription for pain meds to be given as needed. We will visit the pediatrician tomorrow for Catherine's second dose of the RSV vaccine. Then on Friday the pediatrician will take out the stitches from Catherine's chest tubes. In two weeks we will follow-up with Catherine's cardiologist here at Hopkins.

Thanks again for all of the prayers and well wishes, they have helped us all through this trying time. What an experience, one I will never forget! I'll continue posting to let you know how Catherine is doing. Feel free to contact us if you'd like to visit, only healthy people will be allowed through our door!

Doing better

Come to find out the reason why Catherine was having issues with feeding, being fussy, etc. was because she was going through withdraw from the pain meds. When I found out, it broke my heart to think that my innocent little baby girl was experiencing this. She was taken off of the pain meds in the PICU then received Tylenol when she got to the floor. This was too much for her to handle. So the docs have put her back on the oxycodone every four hours. She is doing much better now with feeding and she is getting back to being herself.

They want to watch her for 24 hours since being put back on the meds. So tomorrow around noon they decide if Catherine can go home. Wow, we might actually be able to take her home tomorrow. Words cannot describe how excited I am, I can't wait for all of us to be together at home again. We will be able to get ready for Christmas! Needless to say, all of that has kind of been put on hold. Christopher has helped GiGi and Pop and Aunt Jenn and Uncle Mat decorate their Christmas trees, so he'll be an expert by the time we get our tree up. This will be such a special Christmas for many reasons.

Catherine enjoyed many visitors today. GiGi, Pop, Uncle Mike, and Aunt Chris were able to visit while the boys stayed downstairs to admire the train garden and eat ice cream. Uncle Mike was able to take a video of Catherine and take it downstairs for the boys to watch. I was told that big brother Christopher kissed the screen when he saw his sister. That's my boy, so sweet. It was nice to see everyone today.

Catherine is sleeping peacefully now. I'm surprised that she was able to fall asleep with me sitting right next to her. She didn't sleep much today so hopefully she'll sleep well tonight. They will wake her up at midnight and 4 a.m. to check her vitals and give her meds. Hopefully tomorrow I'll be able to write with some great news, good night!

A long night

Catherine (and Dave) had a long night last night. She has not been able to keep formula or Pedialyte down. It all comes back up after a little cough. But they say it's good that she is coughing to clear her lungs. The docs aren't super concerned yet, even though I am very concerned. She was doing so well with eating while in the PICU and now that she's gotten to the floor she really hasn't kept anything down. Maybe she enjoyed the PICU more than the 6th floor! She has only had Tylenol for pain for about a day now. They seem to think that's all she needs. I would think that I'd need more after heart surgery but I guess babies are different.

Christopher and I enjoyed Breakfast with Santa this morning. He gets so excited when he sees Santa. He is such a sweet little boy, and so full of ideas. We are looking forward to some visitors today. Uncle Mike, Aunt Chris, Robert, Joe, and Mitch and GiGi, Pop, and Christopher will be visiting the hospital. Only the adults are allowed to visit Catherine so the boys will have to stay downstairs. But they should be plenty occupied, Dave told me that there has been a big train garden set up downstairs outside of the cafeteria.

I'm getting ready to leave to go the hospital now. It's my turn to be Catherine's roommate tonight. I can't wait to see Catherine. Please say a prayer that Catherine is able to keep her formula down. I know that I will be praying for a quiet night, at least as quiet as possible considering the circumstances.

Catherine left the PICU today

What a busy morning. Catherine's arterial line, central line, and pacemaker wires were removed this morning. They did put a line in her head in case they need to draw blood. Sounds painful but they assured me that it isn't.

Around 1:45 p.m. this afternoon with Mommy, Aunt Jenn, and Uncle Mat looking on, Catherine left the PICU! I have a picture of the event that I'll post later. The docs said that if she continues to eat well there is no reason for her to stay much more than a few days.

So tonight I'm headed to GiGi and Pop's house so that I can be Christopher's roommate for the night. Dave is Catherine's roommate tonight. Tomorrow morning Christopher and I get to go to breakfast with Santa at his school. I'm excited to see my little guy, I haven't seen him since Tuesday. Good night!

Another good night

Last night Catherine had her NG tube removed and she is no longer receiving oxygen through her nose. She has also been taken off of the pain med given through her IV. She will get pain meds orally as needed. So, this means that she is closer to being able to go to the floor since she is not dependent on receiving anything through the IV.

Catherine has continued to eat throughout the night. Her nurse said that she had about 2 ounces every 2 hours or so. We are looking forward to a visit from Aunt Jenn and Uncle Mat today. Thanks again for all of your support, reading the comments makes us realize how many people care.

Such a good girl

Hope you enjoy seeing Catherine. She looks great compared to how she has looked over the past few days.

Catherine slept much of the afternoon. She woke up around 5 p.m., when we put a bottle of Pedialyte in her mouth and she willingly started to eat. She finished the whole 2 ounce bottle, had a good burp then relaxed while watching a Baby Einstein movie. She's such a good girl!

So, she'll probably get her NG tube out tonight. That's the tube that runs from her nose to her stomach. Her next bottle will be Similac formula around 8 p.m., hopefully she'll do just as good with the formula as she did with the Pedialyte. The doctor we spoke to tonight said that he's almost positive that she'll leave the PICU tomorrow. By the time she leaves the PICU all of the tubes should be removed.

We can see her beautiful blue eyes

When we arrived this morning, Catherine was awake! I was so happy to see her again. We had to leave for shift change between 7 a.m. and 8 a.m. and I couldn't wait to get back to her. She has a bit of a sore throat due to the breathing tube, but she is trying to "talk" to us. She's been awake and asleep on and off all morning.

Catherine had a few visitors yesterday. Pop came by to see Catherine yesterday afternoon as well as Ms. Meghan (aka Kitty). It was nice to have some visitors although at that time Catherine was not awake. If anyone (who is healthy) would like to visit, just let us know.

Today's goals are to slowly ween her from the meds through her IV and to give her some Pedialyte, she hasn't eaten since 4 a.m. on Monday morning. Rumor has it that she might be moving out of PICU and to the floor sometime tomorrow. Her progress continues to be so encouraging for us.

Breathing tube is out

I spoke to Catherine's nurse around 5 a.m., she said that the breathing tube came out around 1:15 a.m. It took Catherine about an hour to adjust. She received a breathing treatment and is now just receiving a little oxygen through her nose. Wow, I can't wait to see her! I guess we'll find out during "rounds" this morning what will happen next. Maybe we'll be leaving the PICU and going to the floor soon. Thanks for all of the prayers, please keep them coming!

Chest tubes are out

Around 5:00 p.m. tonight Catherine's chest tubes were removed. She was given a little extra pain medication and she tolerated the removal of the tubes quite well. We are still waiting for her to be completely weened off of the ventilator so that the breathing tube can come out.

She's doing great, it's nice to see less tubing coming from her body. I still can't wait to see her beautiful blue eyes, maybe tonight before we leave that will happen. We're planning to get a bite to eat downstairs between 7 and 8, that's when they kick parents out of the PICU for shift change.

I feel like we've made a visible move in the right direction today (with the removal of the chest tubes). That's so encouraging for us after seeing her pretty much look the same for the last 48 hours.

Good night

Catherine had a good night last night. They took her off of the meds that help control her blood pressure, she tolerated that well. So now she is on one less med. They have continued to ween her off of the air in her breathing tube. They still hope to remove the breathing tube and bring her out of sedation later today. All of her labs have come back good. Progress is slow but everything is good.

GiGi and Christopher will spend the day together today. Pop is planning to visit Catherine this afternoon. Uncle Mat was able to visit yesterday and Father Paul (the hospital chaplain) stopped by yesterday and celebrated the sacrament of the Anointing of the Sick with Catherine. All of your prayers and well wishes have helped Catherine, me, and Dave.

I'll post again tonight with the latest news.

Catherine continues to improve

The docs just made their "rounds" again. Catherine is in the process of being weened off of the breathing tube. Things are looking good, she is continuing to heal. The surgeon stopped by and he was glad to see that her rhythm is good without the use of a pacemaker.

We had a chance to visit Christopher today. It seems like I haven't seen him in such a long time. We took him a souvenir "Hopkins" sweatshirt. He asked if Catherine was "all better" yet. He's such a sweet little boy.

Thanks for all of the great comments, they are so encouraging. The next update will probably come tomorrow since I hope to get some sleep tonight. We'll be staying here until about 10 tonight, and returning around 6 or 7 a.m.

Latest update

We sat in on the "rounds" this morning. There were so many numbers thrown around we thought we were at an auction. The docs say that today is all about removing fluids. They have taken her off of the meds that have paralyzed her, this will allow her to move around a little more. She will remain sedated until tonight or tomorrow morning. They will give Catherine a little blood today to help in the healing process. She continues to do well without the pacemaker.

Catherine's nurse, Dawn, says that despite the way she looks, Catherine is comfortable. Please pray that Catherine continues to heal.

Pacemaker is off

I just spoke to Catherine's nurse, Pam. She said that she is doing well and that her pacemaker is off! Seems as though no permanent damage was done. I'm sure we'll see many docs today and get further details. At this time Catherine is still on the breathing tube and still sedated. Obviously she needs to rest after what she has been through. If everything goes as planned, they will bring her out of sedation later today and remove the breathing tube.

So now I can't get back to sleep. I just have so many thoughts. I can't wait to see my sweet girl, and I miss my little boy. Please continue to pray for Catherine, although she is doing well, she has a long recovery ahead of her. Also, please pray for the little boy in the bed across from Catherine in the PICU. He is around Christopher's age and things aren't going so well for him.

I'm going to try to get back to sleep now, I know that we have another long day ahead of us. My deepest appreciation goes to my Mom, my Dad, and my sister Jenn for spending the day with us yesterday.

Catherine recovering in PICU

Catherine made it to the PICU around 3:15 p.m. We were allowed to go back to see her around 4:10 p.m. She looks good considering what she has been though. There are too many wires/tubes to count. Everything went well during the surgery, there was a lot to repair.

One of the risks of the surgery is that the area of the heart that regulates the heartbeat can be damaged, therefore requiring a pacemaker to correct. Currently there are some minor issues with a regular heart rate. She is currently on an external pacemaker. The docs seem to think that the irregularity is due to swelling, not permanent damage and it should return to normal. Over the next few days they should know what the cause is.

Regardless, the surgery was a success! Way to go Catherine! We'll continue to update. Thanks for all of your thoughts and prayers.

Good news from the OR

We just heard from Gina in the OR. Catherine has been successfully taken off of the heart/lung machine. They are about to close her chest. It should be about 30 minutes until we get to see her travel from the OR to the PICU. I'm so excited, I can't wait to see my baby!

Surgery continues

We just heard from Gina, the OR nurse. Catherine has been on the heart/lung machine for about an hour now. The doctor is continuing the repair. We're looking at about 2 more hours or so. Catherine is doing well. Please continue to pray for Catherine and her surgeons.

Surgery has started

I just spoke to a nurse that is in the OR, surgery has started. Catherine is doing fine. The OR nurse will update us again in about an hour and a half.

Surgery update

We arrived here at Hopkins around 6 a.m. this morning. After getting vitals taken and signing papers, Dave and I took Catherine into the OR around 7 a.m. We were able to lay her on the operating table, hold her hand until she fell asleep, then give her a kiss before leaving. I'm glad that we were able to go in with her but it was heart breaking to leave her there. All of us (me, Dave, Jenn, Mom, and Dad) then headed downstairs to mass. Today is a holy day, the Feast of the Immaculate Conception. After mass we got a bite to eat.

We received word at 8:45 a.m. that all of the lines had been placed, the patient is doing well, but surgery had not started yet. They had to draw blood and run some tests before starting the actual surgery. When we met with the surgeon this morning he said that we were looking at 5 hours or more to complete the repair after the surgery is underway.

On a funny note, Uncle Mat is taking care of Christopher for us today. When I spoke to Christopher this morning he asked me where I was, my response was "I'm here at Johns Hopkins Hospital waiting for Catherine girl to get all fixed up." His response to me was "Have you been waiting there ALL night?"

Please continue to pray for Catherine and her surgeons as her surgery gets underway.

Visit with Santa

We spent the day before surgery visiting Santa as well as visiting with family. We continued our tradition of visiting the Santa at White Marsh mall. Christopher was so excited that he ran to Santa to give him a big hug. Catherine enjoyed just looking at Santa. She also enjoyed several kisses from him. Christopher told Santa that he'd like the Mickey raceway and a Candy Land game. Mommy was in charge of speaking for Catherine, she wants Elmo Live and some pretty new clothes. Both Dave and I really enjoyed seeing the excitement in Christopher and watching the amazement on Catherine's face. Hope you enjoy the photo.

After our visit with Santa we met at my parents' house for a nice lunch with GiGi and Pop, and the aunts, uncles, and cousins. It was nice to see everyone before our life gets a little crazy during the next few weeks.

Right now our little angel is sleeping peacefully in her crib while her brother is enjoying a sleepover at Aunt Jenn and Uncle Mat's house. We will be leaving our house around 5 a.m. to arrive at Hopkins by 6 a.m. Will we be updating the blog throughout the day. Say an extra prayer for Catherine and for her surgeons.

One week until surgery

After having a surgery date in October and another date in November, it looks like the third one's a charm. Catherine's open heart surgery to repair her AV Canal heart defect will be at Hopkins on Monday, December 8th. The surgery scheduled for October was postponed because she was doing so well that the doctors thought that we could give her more time to get bigger before surgery. Then in November she was on an antibiotic about a week before surgery to fight off a cough and stuffy nose that her wonderful brother Christopher shared with her. So, the surgery scheduled for November had to be postponed. Please pray that Catherine will stay healthy enough for the surgery next week.

I've created this blog to help keep all of our wonderful family and friends informed of Catherine's progress. We are so lucky to have such caring people in our lives. All of your well wishes have been greatly appreciated.

I hope to be able to update at least once a day. On the day of the surgery, I will update several times as we receive word on Catherine's progress from the OR.