Sunday, July 31, 2011

Cardiology Merry-Go-Round

Once again, we have a new pediatric cardiologist for Clare. This is our fourth cardiologist in six years. We loved #1 (who we met when Clare was barely 24 hours old), but she moved to Virginia. #2 was nice personally, but really disappointed us professionally. #3 was incredible personally and professionally, but having Clare's primary cardio in Boston did not end up working for our family and Clare's various medical needs. So we're on #4. We switched back to Children's Hospital at Dartmouth, but went with a new doctor practicing there.

We met Dr. G for the first time at Clare's six-month visit on Friday - EKG, echo, and examination. Dr. G is young, vibrant, thorough, and wonderful with Clare. A good fit for us so far. Her office is literally seven minutes from our house, we know from experience that we can pop in for a quick peek or blood pressure check if the occasion arises, and she practices in the same larger group as Clare's pediatrician, endocrinologist, and nephrologist, so they have access to each other's notes and Clare's medical records. That all works for us, so I pray that Dr. G works out! We've never really been that picky or unhappy with any of our providers, so it's been weird to feel as if we have not really had a cardiologist on board over the past two years.

Clare's visit went as well as expected. She remains clinically stable, which is the good news. Her gradients remain about the same, and her blood vessels are growing, but still not at a great rate (this is not unexpected with the severity of Clare's stenosis). The echo could not get a really good view of the pulmonary stents, so it's unknown how they're holding up. (Four years ago, one of Clare's stents was actually crushed in her artery and the echo did not pick that up. The doctors found out when they were in there during a cath.) Her ascending aorta and arch continues to look fabulous (this is the portion that was surgically repaired six years ago). Her descending aorta continues to also look stenosis-free. Her EKG was solid, and based on that, her coronary arteries seem to be good as well. Her blood pressures were fabulous, so she can continue off any hypertension meds. We have been monitoring her weekly for over a year now off meds, and the pressures are usually very good for Clare's condition. Her pulses were good, and all-in-all, a wonderful examination.

However... (and here it is, the not-so-good news)... Dr. G agrees with the previous cardiologist's assessment that Clare should undergo a cardiac catheterization in the near future. Prior to Clare's appointment, Dr. G had already spoken with Dr. B, the liaison cardiologist in Boston (Dr. B is a different cardio than the one we had been seeing as a primary in Boston, and he has been involved with Clare's case since her first catheterization at three months old - Dr. B is our cardiologist whenever Clare is inpatient at Children's - I know, it gets confusing!), and she reviewed the Boston echos on paper (Shawn is going to get her a digital copy of the actual echo video). Since it has been an amazing four years since Clare last underwent a cath, all agree that it is time to look at what's going on inside her vessels, other than just doing echos. Right now, the plan is to do another full work-up with Dr. G here in Manchester in six months, then schedule the cath a few weeks after that.

Dr. G cannot say right now what the plan will be during the cath, but we have been through this six times before and are quite familiar with the nature of this beast. I am 99.9% sure that Clare will have her pulmonary stents and smaller pulmonary vessels dilated. At the very least, the doctors will shoot a lot of dye and take a lot of pictures! They will be able to get better views on how her stents are holding up, what her coronary arteries look like, and maybe even exactly what her renal arteries look like (we've had those scanned recently, but a cath is always more accurate). So we'll hold tight for six months and take it from there.

Wednesday, July 27, 2011

Baby Blues

Eliza turned six weeks old yesterday. Unbelievable! I feel as if we are finally settled into some sort of pattern in our day. Eliza sleeps in her cradle, wakes 2-3 times at night to eat and goes right back to sleep, and is more alert during the day. She will sleep in the car seat and is a great passenger, but hates the bouncy seat and swing - so much so that I put the swing away completely and only put her in the bouncy seat for 20 minutes for my morning toilette. She usually naps in the playpen instead. In those first couple weeks, I never thought we would get there (I always feel this way at first - must be those hormones!). Part of me loves having the baby in bed with me, but the part that wakes up with a sore neck and back from falling asleep while nursing the baby is not so fond of it. But here we are, six weeks later, with a baby who predictably will spend the night in her cradle, and is "easy" enough overnight that Shawn at least gets a full night's sleep. (I am not bitter - this works in my favor for sleeping longer in the morning and letting him start the mad breakfast rush with the older children.)

Our bedtime is not as predictable, though. Right now, my sweet husband is doing his nightly duty of baby rocking since I have declared a nursing freeze for the next hour. Eliza will struggle to fall asleep for hours at night. Once she is down for the night, it's golden. But getting her there is frustrating. She fusses, needs constant position changes, wants to nurse, nurse, nurse until I want to scream, scream, scream. Shawn and I alternate between me nursing and him rocking. Some nights, we do this for a few hours. And, again, I know we will get there (since I have four older children currently asleep!), but the getting there part is so hard sometimes. This time with our tiny baby is so short and I don't want to wish it away. But it would be nice to get a little more sleep!

Sunday, July 17, 2011

Summer School

Clare is starting her third week of summer school, and she is loving the routine again. However, the first day was rough, to say the least. This summer, we chose to have Clare take the bus both to and from school. I knew that would be easier on me this summer rather than getting five kids out of the house every morning at 8am. Plus Clare loved riding the bus when she was in preschool. So I thought this was a great plan! It didn't work out as planned that first day.

Clare came off the bus crying. First, she arrived home 45 minutes after school ended, and we literally live two minutes from the school, so she was overheated from being on the un-air-conditioned bus for that long. Second, she thought her beloved kindergarten teacher was going to be her teacher for summer school (because we had told her that Mrs. D would be her teacher again next year, and Clare has a hard time with distinctions, so to her mind, this was next year), so it was a big let-down to have someone completely new. Third, her IEP states she is not allowed to be outside on the playground in heat and humidity, and as it was a 80+ degree day, her teacher kept her in the classroom while the rest of the class went outside. (Clare claims she sat and did nothing during this period, which I doubted.) And, fourth, not only was the bus hot, but Clare didn't understand why it was taking so long to get home, so she was worried that the bus driver was lost. Apparently, she kept repeating this and saying she just wanted to go home, and the bus driver "yelled" at her to stop crying.

Of course, all this sent me into a panic, and my first instinct was, That's it, Clare does not really need to go to summer school does she? My second instinct was, No, she DOES need summer school, she needs the routine, but I will just drive her to and from school each day. Shawn reminded me that Clare had a rough night's sleep and was up super-early in the morning (being excited about school), so she was exhausted to begin with, and he convinced me that Clare needed to try again and that we would get to the bottom of all this.

Clare and I had a pep talk the following morning that she would give the bus another try. She cheerily boarded the little bus, and I waited anxiously as the hours passed. Meanwhile, Shawn contacted the bus company and spoke to them to find out what happened on the ride home. It was a lot of sorting out the best route to get the multiple children home, and the bus did not even leave the school until 15 minutes past dismissal. I spoke with the driver personally when she dropped Clare off (it's a different driver coming and going). She did have a loud voice, but seemed very sweet and friendly with Clare. She also had horrible directions from the school to our house, so I gave her the most direct route (and now it takes ten minutes from school dismissal to when Clare arrives at our driveway). After school, Shawn spoke with Clare's summer school teacher about the playground. He gave permission for Clare to play on the playground as long as she's only out there for a brief period of time (and it's not over 90 degrees). The teacher explained that Clare stayed inside to blow bubbles and was able to choose a friend to stay inside with her. We knew Clare's view of the day would be slightly skewed (she still has trouble with storytelling), but it did make me feel better that, although Clare perceived the situation to be terrible, neither the bus driver nor her teacher did anything I could fault them for.

When these situations occur, my mother bear kicks in (more so with Clare than the other kids), and I have to remember not to make rash decisions based on my initial gut reaction. Such as foregoing summer school all together based on the first day. Day two and on have gone great, and Clare is enjoying school.

Monday, July 11, 2011


The transition of "bringing baby home" is always a little rough. Our transition with Eliza has been MUCH smoother than with Violet, due to the easier delivery (not necessarily easier labor, but the VBAC recovery was SOOOO much better than the C-section recovery!). But the transition is an adjustment period whether it's baby #2 or #10. I forget how "spoiled" I was by having only children who could walk, talk, feed, and entertain themselves (for the most part). A newborn forces me to let the laundry slide, leave the living room messy at the end of the day, and plan simple meals (or forego the planning and just wing it with whatever is in the pantry).

The Type A part of my personality has a very hard time adjusting to this "slide" with each new baby. The crumbs under the dining room table are mocking me. The to-do list I made on June 11 (as in the day before my water broke) still sits on the counter just begging to be tackled. And I want to do stuff with my kids this summer - much of which cannot be done with a baby.

But then I remember that this phase of our life - Eliza's newborn-ness - is so very short. I do not know if I will ever have another newborn (I think I've said that four times - HA!), and I want to cherish every moment. And that means cherish the moments even if our days are spent hanging in the backyard with the kiddie pools and freeze pops instead of going to the beach or hang gliding or whatever other silly thing I imagine we could be doing in those moments of resentment at our "boring" summer. Cherish what it is and let go of what it is not.

(And, of course, it took me two weeks to actually finish this post, and Eliza is almost one month old. My time on the computer, scrapbooking, grocery shopping is very limited right now! On the other hand, I do a lot of sitting on the couch while nursing Eliza, so I have finished some really great books!)