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.