19 posts from September 2009

First smiles are simply the best. It feels even more special this time around with Jillian. Her smiles and alert curiosity put me a little more at ease that she is continuing to grow and develop.

Not too sure about that up there.

The Setting: Sitting in the dining room, any meal. Jillian may or may not be in the room at this time.

Will: (Shrill and Loud) Aye-Yoo-Aye-Yoo-Aye-Yoo-Aye-Yoo!!

Mommy or Daddy: Shhhh! Will, please use your quiet voice right now.

Will: But Jillian isn't sleeping!

Mommy or Daddy: Yes, but that sound hurts everyone's ears.

Will: I'm allowed.

The Setting: Jillian is "hatching" in her cradle, stretching and making baby noises.

Will: Jillian is making funny noises!

Mommy: Jillian is waking up.

Will: Jillian doesn't know how to read to me yet, or put me to bed.

Mommy: That's right Will, maybe someday you will read to Jillian.

Will: She will be able to pick me up when she get's older.

The setting: Walking from the car into church. Will looks up at daddy and says:

Will: Daddy carry me.

Daddy: (a look of longing on his face) Oh dear. He said carry ME. There goes another Willism - so long to "Daddy carry YOU."

There are certain things the cardiologist looks at to follow Jillian's progress. The thing we've been most focused on, and the thing they've stressed the most is her weight gain. If she continues to gain well, we know we're staying ahead of her body's increased caloric needs as it grows and works a little harder to pump blood. They also look at her work of breathing: whether she's breathing fast, whether the skin between her ribs sucks in with each breath (retraction), whether she grunts when she breathes or her nostrils flare and whether she gets significantly short of breath when eating. The size of her liver is a good indicator of how well her heart medicine is reducing the strain on the right side of her heart. When she first went to the NICU they could feel her liver down below her ribs - that is abnormal. Blood flows from the liver into the right side of the heart, so when there is something causing a backup of blood, such as the left-to-right shunting caused by Jillian's specific defect, the blood may back up into the liver causing it to enlarge. Because Jillian also has some mild narrowing of her aortic arch, they check blood pressures in all four extremities and compare pulses in those extremities. They do this as a way to watch her to make sure she isn't developing coarctation of the aorta. Finally, they also listen to her heart and lungs in addition to a general physical exam.

Yesterday at Jillian's checkup with the cardiologist he had all positive things to say about her progress. He was pleased with her weight gain: an average of 18 grams/day. He also found her liver to be reduced in size, not as far below her ribs as before when he has seen her. This means the Digoxin is doing it's job. Jillian still has some retraction with breathing, but this is not worse than it has been all along. She was very alert during the visit, and squirmy when they palpated her liver and pulses and did the four blood pressures. The squirminess was considered by the doctor to be a good thing - showing she has the energy to resist the uncomfortable exam.

I pushed the doctor to give us a clearer answer about when they might schedule her surgery. We'd like to know this for so many reasons, one of which is future planning for my return to work. As flu and RSV season approaches, we know that we will need to be super vigilant about keeping Jillian from catching any bugs. As her doctor has told us, even a simple cold may be severely dabilitating to her system. I didn't really get a clear answer. As before, the course will be determined by how well she continues to do on this course of medical management. If she continues to do well and really takes off with her weight gain, they may even wait to do the surgery until after the winter season passes. If her weight gain drops off, or she slides back and begins to have breathing difficulties again, then they will schedule surgery sooner. Certainly the risk of greater vulnerability during flu season is something to consider, and it would be nice if the surgery was done and she was able to get stronger before the depths of winter are upon us. Part of me wishes that the surgery would be done by the end of my maternity leave, which is the week before Halloween. I can't even imagine how we would juggle work, and the daily schedule, not to mention expecting either of our mothers to watch Will and balance Jilli's daily schedule. Then again, the longer we wait, the bigger and stronger she will be, and the smoother her recovery (hopefully) will be.

So we're thankful for a good visit with Jillian's doctors. We see them again in two weeks. At that time we'll also see a nutritionist to talk about increasing Jillian's feedings based on her weight. Increasing her intake with growth spurts is a no-brainer when you're breastfeeding. They take care of that themselves by nursing longer and more frequently. I never really thought about the fact that we have her on a very fixed regimen now. She doesn't really always seem hungry when her 3 hour feeding rolls around, and she is continuously fed throughout the night. I wonder what we would do if she seemed unsatisfied after some of her feedings. They didn't give us instructions about that in the hospital. These are all things we will address at our meeting with the nutritionist in two weeks. Until then, we'll continue to try not to worry about the future and concentrate on today, realizing that there is grace enough for today and all it has instore. I've found that that has been the best strategy to not getting overwhelmed.

While Jillian's bottle is warming, I thought I'd steal a quick second to post a home life update. We're slowly settling into a routine at home. While the weekend was very challenging, it was good, too, to be home and see that Jillian could do well at home with parents. From my perspective, it was easier when the nurses would give the meds that came already drawn up in a syringe from the pharmacy, and they would change the feeding bag overnight every four hours, and I didn't have to spend the spare moments I had chasing after a bouncy little boy. It was hard to find time for a shower in the hospital, it's not any easier at home. Sean and I are developing a system for washing bottles and pump parts and giving medication and bottles and making quality time with Will. Will is showing himself to be a concerned and compassionate, yet super curious older brother. He generously bestows kisses and makes sure Jillian knows that he just drank water, or dumped out a "hefty load." He has independently started including her in our life as a member of the familiy. I love to see his concern and thoughtfulness. Much to my relief also, he hasn't seemed to notice the feeding tube, YET.

Jillian seems to be doing well at home. I want to say she is thriving, but I think that I need to find a word that is just a half step below that. We're not quite there yet, although Sean and I have commented to each other how she is seeming to be more awake and alert. She fusses more and though I never thought I'd be thankful for fussiness, I take it as a sign that she has a little more energy now that she is consistently putting on weight. She is starting to smile at us. Those moments where her countenance softens ever-so-slightly brighten my day and my heart skips a beat. She still continues to spit up once or twice each day. Sean and I live in fear of this happening and so feeding times are a little bit stressful. Yesterday she was weighed at the Breastfeeding Resource Center here in our town and her weight there was UP 150 grams. That's about 50 grams/day since Thursday at the hosptial. Their goal for her is to gain 25-35 grams/day. Bear in mind that each scale gives different weights. At the pediatrician's office she was actually down 10 grams. Yet again, a different scale. We are choosing to believe the one that gave the higher weight. We rented one we could have at home so we get a consistent weight on a frequent basis.

Overall we are encouraged. We are slowly finding a routine, albeit the routine doesn't leave time for much besides feeding, pumping, washing, mixing Super Milk, changing diapers, corralling Will, eating... oh - and sleeping. Notice that I said "corralling Will." I would appreciate your prayers for my patience with him. I finding that I don't have much reserve beyond daily maintenance of Jillian's schedule, thus my patience is thin. But I'm also not spending the quality time with Will that we both need. The majority of my interaction with him seems to be along the flavor of: "No. Don't touch that. Don't spit out your food. Listen and obey;" Instead of play and laughter.  I know he's feeling that and acting out more than usual. Plus he's two. Need I say more? I am infinitely grateful to our church family for their generous provision of meals for our familiiy. That allows me to steal some moments around the time that would be dinner prep time to play with him. I am also infinitely grateful to our mothers who spend their days filling Will's time with substance, play and learning, direction, love and dicipline. I can't shake the guilt that I feel like I am shoveling my boy off on others to be loved and raised. I know this is a time that will pass. I appreciate your prayers that I will have a little extra energy to run and be imaginitave with him each day, and that I would have the Holy Spirit's patience with him as he tests his boundaries, and that I would survive the days when I find myself at home alone with both kids. That hasn't happened yet, but I will need a lot of energy when that day comes.

Jillian has her next cardiologist appointment on Thursday. For now, the time frame for surgery will be dictated by how well she continues to gain weight and tolerate her regimen of medications to help her heart. I have no idea when the surgery will occur, so we just continue to take each day as it comes, remembering to be thankful for the progress we've seen so far.

We were doing so well with Jillian's feeding tube. Keeping a sock on her hand, reinforcing the tape when it came loose, I was sure we'd make it to the 30 day mark when it has to be changed. Oh how ignorant I was. The nurses at the hospital knew what they were talking about when they said we'd be surprised how the babies manage to wiggle those things out. I went to change the feeding bag for the last time at 6am and was puzzled as to why the tubing from the pump was draped so low on the floor instead of higher into the cradle. Then I had to stifle some choice words when I realized that, connected to the tubing on the floor was her feeding tube. Sean heard my gasp and asked what happened. "You don't want to know!"  "Did she spit up?" "Worse!"

We stood, sleepy-eyed and utterly puzzled, staring at the cradle and the errant tube lying on the floor. Tightly swaddled, there is no way Jillian was able to wiggle her arm out, pull out the tube and wiggle it back inside the blanket. The bandage on her face which had held the tube in place was still intact. Not too far from the cradle Miss Libby lay snoring at the end of her bed. Perhaps there's a chance she had something to do with it. There was no puddle of milk on the floor, so it seemed like the tube had only recently come out, but then there's also the possibility that Libby cleaned up the mess. We decided that the house Leprechaun who turns the bottle warmer back on when we're done using it and who finishes the last cookie in the jar must have done it. There is no other realistic explanation.

After minor drama and two insertions, Jillian snoozes in her cradle now, tuckered out from the lung exercise (ie crying and getting mad) that is her part of a feeding tube insertion. The remaining two hours of feeding are done and we're only a few hours behind feeding schedule for the day. So much for that last hour of sleep.

Just wanted to give a quick update. We are home. All four of us. Jillian is sleeping in her cradle, feeding is going in through the tube. It was a bit rough leaving the structure and relative peacefulness of the hospital and lugging our bags full of paraphenalia home to a cramped, noisy house. Thanks for all of you who have held us up in prayer. We'll continue to keep you updated over the coming days.

Here is a collection of pictures. Some are of Jillian here in the hospital: snuggle time with Grammy, and bath time with Mommy. Others are from an afternoon I took to go home and play with Will and my niece, Madison. We were romping and burning off late afternoon energy before supper time.

Sleepy half smiles, big eyes ant sqirminess. These are some of the things
Jillians nurses have observed of her over the 9 days that we've been here.
She takes their expectatons and throws them out the window. "All" babies
scream when they're being weighed. (not Jilli) "All" babies get fussy when
they can't eat because of scheduled tests, so the nurses try not to get them
upset. (not Jilli - she just got more alert and didn't give a peep.)

Jilli's overnight food stopped at 6:45 this morning. Then she had to be NPO
(nothing by mouth) until after the test. She was awake for a little while
and then slept right up to the time that we packed her in her little
stroller to go to the test. Then she was all wide, blue eyes, looking around
and taking it all in. The nurse kept remarking how good she was and quite a
few people along the way stopped to admire her big eyes. The test took just
5 minutes. The doctor watched under a continuous xray as Jillian drank icky
barium (again, without protest) and followed as it tracked down her
esophagus to her stomach, and as it refluxed up again. Picture a snake
swallowing a mouse. Sorry, I guess some might find that analogy a little
gross. There was a dark line tracking down into her stomach and I could see
the little boluses track from her mouth and down.

Dr. Q was in a short time ago. He brough with him the good news that her
anatomy in her GI tract is normal, but that she did reflux a significant
amount. So the plan from here is to start a medicine called Reglan. It will
help with the reflux, but also help increase motility through her Gi tract
to help move things along a little faster. I know we also use it sometimes
as an anti-nausea medicine. He wants to watch her for 24 hours after
starting the Reglan and see that she gains weight again today. Based on that
information, we may go home tomorrow. If she doesn't gain today and
tomorrow, then we'll remain here and plan for surgery early next week.

I'm optimistic. Jillian has not spit up since overnight Tuesday into
Wednesday. So God is answering prayer and those reflux meds are doing their
job. So continuing to take each day as it comes, I'm hopfeful that tomorrow
night Jillian and I will be sleeping in our own beds at home. I'll keep you
posted.

Jillian has continued to gain weight today. Praise God for that. Continuing
with the good news, she has also been doing better keeping her feeds down
during the day. She kept all her feeds down today, and half of them
yesterday.

Because Jillian has continued to have some episodes of vomiting overnight,
Dr. Q has decided it would be a good idea to do the upper GI test tomorrow.
It is scheduled for 9:45 am. I'm glad they decided to do the test, just to
make sure that there's not something that we're missing that is causing the
significantly large spit ups that have plagued this little girl.

One of my favorite parts of the day here in the hospital is when I give her
a bath in the afternoon. The bath starts with a naked trip to the scale. The
weights are done at the same time each day on the same scale, same degree of
nakedness. Then it's a sponge bath in her bed. She's such a mellow girl.
Will screamed through all of his baths. Jillian doesn't make a peep. Once
she's through the warm bath, I wrap her up tight and we snuggle together in
the rocker for a while until her next feeding. I will share one observation.
For the delicate little girl she is, she certainly has stinky feet!