Pictures

I can't figure out how to use picasa. My pictures are stuck in limbo, so I'm still sharing from my phone. Sorry if there are any repeats...I'm a little scattered nowadays.

I know, it's been a while.

I have been looking back at some pictures of Caroline that my sister saved on my computer at home (thanks Brette!). She is only one day old, pre-Norwood, of course. Look at how much baby fat! She has just reached the 7 pound 13 ounces (3.55 kilos for all you foreign types) mark here at home...and believe me when I say, it's an accomplishment. We have a long and eventful week ahead, mostly because all the help has gone home...and Matthew gets to go to work every day for 9 hours.  All of our appointments this past week went well.  Tuesday, the stitches came out of her chest.  Friday, the pediatrician said that whoever took the stitches out was incompetent and left some "residual" sutures.  Basically, I could have done a better job taking them out at home.  Wednesday brought more driving, this time to Bethesda to see our real Pediatric Cardiologist.  The big thing he had to say was that we don't have to take lasix (the diuretic) anymore.  Yay! One less medicine.  The only day we didn't have to leave the house to go to some sort of Doctor appointment, the at home nurse came by.  This baby is a full time job, for real.  The crazy thing is that I don't resent her.  I'm not mad.  I want her to thrive, grow and be happy.  One of the other heart Mom's that I follow just lost her 16 month old, Travis, due to complications from HLHS.  This makes me cherish each diaper change and early morning feeding even more. 

New Routine

I can't believe we have been home for 3 days. Caroline has been adjusting to not having monitors beeping and craziness stuck in her body. We are working on gaining weight and although it is very stressful for me, she has not had a negative day so far. We had our first visit from the home nurse this morning and she seems to think we are doing a good job. I will be happy on Tuesday when she has the stitches taken out of her little chest. I am shocked that the few newborn clothes we have are big on her. She weighs in at a whopping 7 pounds, 9 ounces now. My Aunt Wynn is in town helping with the transition. Thanks to her, I have gotten some much needed sleep and spent some extra time with Parker. I really appreciate all the help we have had and can't imagine what we would have done without you all. Thanks!
I will update with new at home pictures soon. For now, check out how much she is looking like her Daddy!

Bustin' outta this joint...

I have been a heart Mama for all of 17 days now. The biggest lessons I have learned so far have been about patience and learning that there are no guarantees. I have kissed my sweet baby girl goodbye,sending her to have her precious heart stopped, knowing that there was a chance she would never come home. I have seen that heart beating inside her tiny chest and thanked God for every beep of the monitors. Now we take the next big step, and go home. Yes, I said the magic word...HOME! Because Caroline is shunt dependent, these next few months are going to be stressful and downright terrifying. No germs, no getting sick, counting and fortifying bottles, doctors visits every week. We have to be prepared to go to the hospital again with any change in her oxygen saturation, weight loss or even a slight fever. But for now, we are happy with our baby girl at home. We have a lot to learn, but we are super excited to begin the next phase. Thank you all for the happy thoughts and prayers. Please continue to pray that Caroline gains weight and thrives here at home...where she belongs.

What day is it?

I feel like we have been here forever. All my days are running together. Major milestones (and my notes) are all I have to keep the days straight. The nurse practitioner came in this morning after the speech therapy follow up and pulled that nasty ol' g-tube out. How exciting! Now, I guess it's torture hour because 20 minutes before Princess Caroline was expecting her feed...the MRI and the EKG guys show up. Yes, at the same time. She ran them both off in a hurry. All I could do was laugh. These people are retarted if they think that a newborn is going to hold still for tests, even more so if she's hungry. I'm starting to learn about all the fun meds and follow up care that will be necessary when we get to leave. They even asked us to bring our carseat in for a test...so it's getting closer. It had better be. Or we're going to make a run for it.

Happy CHD Awareness Day!

Caroline and I watched the sun come up again this morning. She is still nursing well, and bright and early the speech therapist came to evaluate whether or not she is ready to bottle feed. For those of you who know me well, you know how much I advocate breastfeeding. Single ventricle babies like Caroline need extra calories to grow and gain weight, so it seems like we are on the road to breastfeed about every third feeding. Please know that I had to FIGHT for those feedings, because I feel that they are important. We couldn't get anyone to give us a straight answer about when we may go home...big suprise. But, since she passed her first bottle feed test with flying colors (she was starving), hopefully the g-tube will be pulled soon. While all of this was going on, Matthew brought Parker to see me and "Baby Sister". This was the first time he has seen her, and he did remarkably well. He gave her kisses and read her stories. Hopefully he will do well even when we finally make it home.

Issues

After spending the last few nights in the HKU, I would think I would be more rested and excited that we are doing so well that we have one foot out the door. This place is hell. Nights are haunting, with screams and childrens cries creeping through the walls. I can't sleep in normal intervals because throughout the night, I have to find our nurse to remind her that Caroline is due for meds and milk. The nurses here are staffed with 3-4 patients a piece. I change every diaper, but they collect over time...because no one has time to weigh them before they get thrown out. I pump every few hours and it sits close to the limit before it gets put in the freezer. We are surrounded by infected patients, and I hear coughing through their OPEN doors. At 3 am this morning, we got a room mate in a room not quite built for one. 3 am? Yeah. Who does that? Now the bathroom is shared, which is on our side. So all of their visitors get to spread their filth over here, too. Visitors, I may add, that are not numbered or monitored in any way. And it's Sunday apparently, so everyone "praying" for this family is coming by for a visit. I am praying that her 13 day old immune system is strong enough to make it home where I can at least provide a controlled environment. Oh, and I forgot to add that a homie tech came strolling in here this morning to silence an alarm still wearing his contact isolation gear from another room. What a moron. He'll be lucky if he has a job by the end of the day.

Really?! Anything else?

Caroline and I watched the sun rise over the city this morning. Somehow holding a sweet baby in your arms makes this rotten place seem peaceful. That and all the a-holes like to sleep in on the weekend. The baby is still doing well and progressing.
Parker, believe it or not, has been the one I have been worrying about. This stomach thing he has really knocked him on his butt. Matthew came to the hospital and spent some time with Caroline and I yesterday, but when he got home...Parker was really dehydrated and sluggish, and in a lot of pain. So he did what I would have probably done. Threw him in the car and took him to the ER. After some IV fluids and some not so peaceful rest, they sent him home. Hopefully he will feel better today. I can't take much more of not seeing my boy. Almost every room here in the HKU is on contact isolation (that means they have something that NO ONE wants to get) so I feel like I can't leave...I may catch a germ and bring it back in here to Caroline, making our stay much longer and more eventful. You would think hospitals were clean, huh?

It feels like Friday.

At rounds this morning, the doctors decided that we were ready to leave the CICU! We have been here in the step down unit, called the heart and kidney unit (HKU), for most of the day. Truthfully, I am very glad we are here. But, it is Friday and when speech therapy came this afternoon, Princess Caroline decided she was too sleepy to eat. So...we will spend the weekend (at least) here in the HKU. We have a window now, and a little more comfy bed...and a shower that we don't have to share. How hard would it really be to have a speech therapist on call over the weekend? This is crazy.

Our little "rockstar"

I have noticed more nurses and doctors calling Caroline a rockstar. I finally asked what the name was all about and apparently that is what they call the kids doing well and progressing. We are cautiously optimistic about the next few days here in the CICU. She had one of the common atrial lines taken out today, she is off the high flow oxygen, and will start mouth feeds bright and early in the morning (if I have anything to say about it).
While I have one child fighting for her life in the hospital, my other one is trying to win the 'who can get sick the most' trophy. His cold and fever turned into stomach virus and fever. I haven't been able to see him in a few days and I would really like to love on him. Matthew told me that they watched the movie "Where the Wild Things Are" and at the end, (when the little boy runs home to his Mama) he asked where his Mama was. That just breaks my heart. He is being taken care of, and that is really all I could ask for.

Another day, more new hardware

After Caroline was extubated yesterday, we had a few bumps...which I'm told isn't rare. She is still off the vent, but her breathing patterns rise above what they would like to see. With getting rid of the vent, we also got rid of that ridiculous thing (which I'm sure was necessary at some point) on her forehead. We are weaning the rest of the dopamine, and the other "heart" drug, milrinone today. I got to hold her last night for the first time post surgery and she was a dream. I know that we are very fortunate to have had such success with Caroline less than a week post Norwood. In the back of my mind, I'm still waiting for the ball to drop. I'm waiting for that something to set us back like so many of the others.
For the past 12 hours or so, I've been in a lot of pain. I was lucky to have it hold off for this long, but I sure am paying for it now. It's hard to sit and relax when you can hear your baby crying. I'm not a nurse, so technically I am not responsible for her care at the moment. But it isn't really in their job description to comfort your child.

Off the vent!

The vent was pulled at 10 this morning! I have been here staring at her all morning making sure she's breathing...not that a million monitors wouldn't tell me first. She seems to be doing well with just a nose canula...yes, more face hardware. She also let out her first post-op cry and it was hoarse but beautiful. First of many, I'm sure...she's a fiesty one. Hopefully, this afternoon she can start feeding. That's been my pet project from the beginning and I'm ready for her to prove everyone wrong and have her gain weight on just breastmilk.

Pretty in pink

Last night Miss Caroline showed us that she is ready to try breathing on her own for a while. She has a extubation readyness trial (ERT) early this morning, lasting for 2 hours. Please pray that she does well and can be taken off the vent.
Last night, the nurse and I gave her a bath (she hasn't had one since surgery) and changed the blankets on her bed. Those of you who know me, know that I'm not a huge pink fan...but at this point, I would wrap her in frilly tutus the rest of her life if she would just get better. (See picture)

One step forward...

Caroline had another big day. At rounds this morning, the doctors decided that the drainage tubes in her chest should come out. In addition, her lines in her bellybutton needed to be changed. So, she had more than a few lines removed, but more had to be put in to replace them. I really hate seeing her get stuck and prodded. I'm glad she isn't old enough to watch me cringe and bite my nails. I guess I'll get used to everything...it is a big part of our lives now.
We are in the process of weaning her off of the sedation meds and dopamine so that she will be encouraged to eat and breathe over the vent. She also got her feeding tube put in so she'll be able to have some of the milk I've been pumping. I'm glad...feeling like a diary cow is finally paying off. Today is the start of the week long Congenital Heart Defects Awareness Week. Did you know that 1 in every 100 babies are born with a CHD? I didn't until Miss Caroline. Kiss your babies and be thankful.

A beautiful day

Since it was a beautiful day and the Duncan men are all sick with the yuck, it was perfect for Matthew to take Parker down to see the airplanes at DCA. It will be a very exciting day for me when Parker finally gets to see his baby sister. He rubs my belly on his visits and asks where she is. I can't help thinking it would be easier if I could just show him. But for now, pictures and talking about her will have to do.

Chest Closed...Check

Doctor Sinha came out and said everything looks good. The closure went well and now we wait to see how well her heart reacts to being compressed again. She is off the medicine that made her paralysed, so hopefully soon she'll wake up enough to breathe, suck, and move around. Next big step...getting off the vent.

Update for chest closure

The team kicked me out of the room at about 8:50. The actual surgery takes about 30 minutes...but prep and clean up can get lengthy because they are doing the operation in the actual CICU. Will post more after the surgeons come out to talk.

Mama's Nervous

They are doing a chest x-ray this morning (which is routine) to see if Carolines lungs still have a lot of fluid. She did exceptionally well last night, but for some reason...despite everyone telling me how wonderful she looks, I feel like I'm waiting for the ball to drop. I am really nervous about them closing her chest. She obviously cannot procede with this journey without doing so, I am just having a moment. The surgery process will take up to two hours and I will keep everyone updated. You may not be able to tell from the pictures, but her swelling has gone way down.

Progress

First off, sweet baby Caroline is doing well. I'm sorry for taking a while for an update, I assure you all that we've been quite busy. At one o'clock today, she was 5 days old and post Norwood 48 hours. The first night was bumpy because of some blood pressure issues and her heart was just waking back up and pacing itself from the operation. She was placed on the ever so popular lasix medicine to help her pee and get rid of the excess fluids so they can close her chest. When she was on that medicine for a while and showing no real changes, they decided to start giving her dopamine to increase blood pressure. Increasing her blood pressure sent a signal to her kidneys...and we have pee! We get pretty excited about pee around here, it means we are on the right track. She is scheduled to have her chest closed tomorrow morning at 9 am. This is another surgery, so pray that all goes well and she can get off of the paralytic and start to breathe on her own. So, that is the big picture. She is stable, getting her chest closed tomorrow, and then we can start looking forward to our next big step...which is getting her of the ventilator. She really is sweet. I love on her as much as possible and they let me put our blankets, socks and hats on.
Parker has come to see me a few times now here at the hospital. He can't see the baby because he still isn't feeling well, but it's hard for me because he acts so different. He will still let me love on him for a minute, but he just gets so occupied with other things. He is at the age that makes him hard to handle, and everyone jumps in "helping" out like I haven't raised my child for 2 1/2 years...but I'm thankful that I don't have to worry about his care. Believe me when I say that he is already rotten to the core.

Norwood...check.

They let us in to see Caroline at 3. After an anxious 7 hour wait, the surgeon came in to tell us everything went well and as planned. Parker came to visit, so it helped me to keep my mind (and my body) busy while we waited. When we were brought back into the CICU, all the new tubes, wires, machines and medicines  were very intimidating. Hopefully, she won't be needing this stuff for very long. The doctors keep saying how critical the first 24 to 48 hours are. Keep sending prayers for a speedy recovery. She's still beautiful...just not as pink.

Update

She's out of surgery and headed back up to CICU.

Update

Off bypass at 12:14.

Update

She was placed on bypass at 9:55.

Update:

The pager says "the procedure began at 9:28".

Rough start for Mama

I didn't sleep well last night because the nurse told me I could hold Caroline as much as I wanted...so I did... After the night nurse prepped all the equipment we got to hold her one last time this morning. I know that she's in good hands, but it was really hard to say goodbye and walk away. I'll post again when we get an update. I plan on hugging on Parker all day to keep my mind and body busy. Please pray that everything goes well.

Tomorrow is the big day...

I can't believe that she's finally here...and now it's time for her to fight for her life. It doesn't seem fair to have to make a decision like that. With another persons life hanging in the balance. Matthew and I have spent the day holding Caroline. I, of course, am an emotional basketcase. I have tried to memorize her smell and each of her silly faces. I have enjoyed changing diapers more than any sane person should. All in preparation of sending her off bright and early to begin her heart journey. She looks so perfect sleeping in my arms that I want to take her and run out of this place. I know that this surgery is necessary to save her life, I just wish there were some guarantee that things will go as planned.
So, those of you that have babies...go give them a hug and a kiss, and lets all thank God for giving us just one more day.

Good Morning!

I have oficially survived my first night here at Children's with Caroline. I can tell Matthew has been here longer, because he's a seasoned sleeper. All the beeps and people in and out make me curious/worried and I can't manage to stay in the chair. This picture is my view of Caroline when I look up...sleeping babies are the best thing on earth. I'm trying to stay positive, but the doctors are telling us that she's starting to show signs that she is ready for surgery. She can't possibly know that she's about to have to fight to live. They're saying that the stage one palliation will most likely be done tomorrow, and preparations are being made.

I'm so outta' here!

After a strange and quite eventful delivery yesterday, Miss Caroline was stabilized and brought next door to Children's National. One of the first things done was an EKG of her heart to determine whether she would need an immediate procedure in the cath lab. It turns out that all the veins are where they need to be and valves are wide open.
I actually got to hold her for a minute when she was born...no one was bold enough to try and take her right away. She was obviously breathing, crying much louder than you expect such a small creature to make. She is pink and chubby and looks just like Parker did when he was born...with a head full of dark hair. I guess all the heartburn really was worth it.
After the transport team took her (with Matthew in tow), I began my journey of sifting through morons to allow me to "visit" my own child. Since I was very closely monitored throughout my labor, I was not allowed to move...rendering me pretty helpless in the pain relief department. After unwillingly consenting to an epidural (which didn't work), we were finally checked by a doctor to discover I was ready to push! Imagine that...such great healthcare so close to our Nation's Capital! (On a sidenote, I have been nothing but pleased with everyone here at Children's...and that's what is important.) After a relatively short recovery, I was wheeled over to another room...where I immediatley changed into my skinnier me clothes and demanded a ride next door. Let's be nice and say it took a LOT longer than I wanted it to...and some heads had to roll out of room 5C1, but I finally made it over to see Caroline about 5 hours after delivery. I got to hold her and listen to Matthew tell me stories about all that had gone on over the course of the day...all of which made me jealous. It was then time for me to return to my overpriced hotel for the night...that I walked back to, despite all of the staff's horror. This morning, I woke up to Doctor Downing (who must be excluded from my WHC bashing, because I love him) stopping by to tell me I was FREE! Almost. It took those people almost 5 hours to discharge me from the hospital. But I'm here with my little sweetie now, and in the end, it was all worth it.