72 posts from 2009

Here's a quick update for friends who are asking and wondering.

Jillian is growing and developing. Last week she was given enthusiastic thumbs up by her cardiologists Dr Q and his ever-humble side kick, Dr M. The patch looks good on ECHO and her weight gain is great. She's occupying the proudly won 10-25th percentile spot on the growth curve - just a little behind her brother's curve. At her 4 month appointment she tipped the scale at 11lb, 9oz. Last week she rolled from back to front to the right. She did it a bunch of times on Thursday when I was at work. Then once on Friday. Now she's taking a break. I guess I forgot to remind her to wait for me to be there to see it, since we practice so much I dream of her rolling back and forth across the room. Nevermind. Daddy and Mimi Gregg got to cheer her on in her progress, and it was very special.

Jillian is still not progressing with her eating by mouth. At all. So we continue in our treks back and forth to CHOP to see the GI and Feeding teams. The plan today is to switch to a 3rd reflux medication and if she isn't doing better by Friday, I may give her Mylanta. She is tolerating a greater volume through the tube, so we are able to feed her over 6 hours overnight rather than 10 hours. That gives time for more attempts at feeding at the bottle or breast during the day. I hate that rotten yellow tube. But I love it, too. It's the star of the show when we talk about weight gain.

Will's personality is so dynamic- and he grows more so every day. His expressions and insight keep me company on the cold, discouraging days when Jilli won't eat. He's ever concerned about her and the location of her pacifier. He's a great big brother. And all he wants for Christmas is a new sippy cup. His favorite books right now are Rosemary Wells' "Max and Ruby" books. We've been having great fun talking about everything in Max's pockets.

I married an incredible man. Sean has daily been working past midnight on the house. Then he gets up in the wee hours of the morning to refresh Jillian's tube feed bag so I can pump and go back to bed. He's so patient with my mood swings and my excessive, maniacal obsessing about Jillian's (lack of) eating. He's a gift.

Since the Phillies are on their way to ANOTHER World Series Victory, the local news came back to interview Will a year after his parade debut. It was a rainy day and Will was as hyper as it gets. The reporter and his camera woman were very nice, and very patient with our little guy. Sean and I felt like total dunces on camera, but oh well. It's not about us. Luck for us, they only showed brief footage of us talking, and the best footage they got of Will. I don't think they gave him much. I wish I had saved a clip of last year's interview.

Without further debut:

Will has found many ways to befuddle us throughout his young life. His most recent puzzle: his refusal to poop. If you don't like potty talk, you may want to skip this post.

Ok so, a few weeks ago, he started to fight us on diaper changes. Then he started to go down the list of people who:
"are not allowed to change my diaper." I may have referred to this conversation in a sound byte post recently. We started to notice a change in his frequency and thought it was just a little irregularity due to a little bit of life upheaval. So we introduced prunes and different sorts of natural motivators. No dice. Though we're not yet potty training in earnest, we started letting him sit on the potty and try to go there, since he has fun flushing and seems to be excited about exploring the concept of the toilet. Still no dice. At our pediatrician's recommendation, we've started Miralax.

The kids and I have been at grandparents' house for the weekend as Sean is working on sanding the age old dirt and potentially lead paint off the floors in the first floor of our house. Will has expressed to me numerous times that he wants to go home because he doesn't want to poop here. When we have this conversation at nap time, I can tell by the desperation in his voice that the event is imminent and he doesn't want it to happen. He says he doesn't want to do it because he doesn't want Mimi or Papa to change it. Even yesterday when Sean and I were both here to change him, he still wouldn't let it happen.

Along with this new emotional bump in his life, he has developed Tough Guy Syndrome. When he sustains a little bump he looks at Mimi or Papa and says through his tears: "don't look at me!" He doesn't want anyone but me, and sometimes Daddy, to see him cry. Perhaps this is related to the new-found fears of pooping?

What is a Mother to do. Veteran Mommys who check in here, how have you handled this situation?

Jillian is three months old today. She will share the 3rd as the birth day of the month with Miss Adelaide, born this morning to our good friends. Congrats Kit and Jessie and Owen! They also share their middle name!

I looked back to see where Will was with his weight about this time in his life. He weighed in at 11lb, 5oz at two months. Now at three months old, Jillian tips the scales at a whopping 10lb, 5oz. Jillian is a very happy, layed back baby. She smiles when she is fresh from a nap and loves eye contact and interaction. I think she'll be quite the social butterfly. Often I have to convince her that we can chat after she nurses, though exchanging smiles with me is mostly her preference. Jillian smiles at her Fisher Price Rainforest in her cradle and it lulls her to sleep at night. Different in this regard from her brother, she usually drops off to sleep on her own when she's laying in her cradle staring up at her mobile, or out the window.

Jillian began Occupational Therapy at home last week. At her young age, occupational, physical and speech therapy closely overlap. The county Early Intervention Services identified that Jillian could benefit from OT to help her reach some of her developmental goals. So Tracy came to our house to meet Miss Jilli for the first time last week. She gave us homework aimed at helping Jillian: build her neck muscles and develop better head control, start to use her hands intentionally, strengthen her eye muscles to track objects around the room, and get ready to roll. Children with congenital cardiac defects are at a risk of reaching their milestones on a bit of a delay. One reason is very simply that the time she spent in the hospital was time she wasn't doing normal interaction with us at home. Even during the times at home, we were so focused on helping her keep her feeds down and getting her fed etc, that we didn't make times for simple play and tummy time. She spent a lot of time in the swing and her cradle. We are thankful for the free Early Intervention Services to help us help Jillian catch up. Already after one week I am thrilled to see a lot of improvement with her eye tracking and her hand grasps. She still just hangs out on her tummy sucking her thumb, but at least she's happy doing it, rather than showing frustration. She really can't put weight on her hands to push up for another 3-5 weeks anyway, due to healing time for her sternotomy.

And a side note related to her sternotomy is how we can and can't pick her up. Because of the healing process, we were instructed not to pick her up with hands around rib cage under her arms. Think about the way you pick up a baby. It is the natural way to pull them out of a car seat or up into your lap. Fortunately, we were pre-warned by the NICU staff way back when Jillian was initially diagnosed, so we began practicing this habit early.

These days Will is loving his little sister with enthusiasm and gentleness. She seems to like it, too because she rewards him with big smiles. He kisses her forehead and lays his head on her stomach. Last week he ran to fetch some toys for her and came back with some little books which he sat and told her to look at as he told her about the pictures. He seems to want to pick her up though, and needs frequent reminding that this is a big no-no. We had another talk about it this morning.

Jillian's feeding continues to progress very slowly. I'm having a hard time not getting frustrated that her nursing is not picking up in length of time or volume. Out of the 22 ounces she should be taking daily (as directed by her cardiac nutritionist) she really only takes 2 ounces, at best. Everyone tells me to give it time. So that's what I'm trying to do. But it's a struggle. If you're one of our faithful friends and family members who check in here to see how you can pray for us, the feeding is definitely at the top of my list. Please pray for Jillian to gain strength and stamina and desire to nurse - and for me to have the patience needed to persist, and wisdom needed to know how to help her and when to ask for help.

Next challenge to tackle: Jillian gets her Synagis shot this week, and I return to work for a 4 hour training session tomorrow, then next week for two 8-hour shifts. His grace is sufficient.

Jillian gained 50 grams day each day for the last two days. Prior to her surgery she was gaining barely 20 grams per day. Talk about a big answer to prayer.

God has been showing His faithfulness in powerful ways, not the least of which was a scare we had today regarding a possible complication in my sister's pregnancy. As soon as we got the call that she was headed to the ER we asked many to pray. She is about 16 weeks along and I am relieved to report that thorough testing at the hospital revealed that everything is OK. God is good.

I neglected to mention in last night's Jillian update that her reflux is much improved. I probably forgot to mention it because I don't even think about her reflux most days. I think I would have cried with delight if, two weeks ago, you told me that the horrid retching and constant worry over keeping her feeds down would fade into a memory by today. She missed a dose of Reglan today, and just had a small spit up in the swing. How little tonight's spit up was in comparison to the past nastiness that overshadowed concerns of poor weight gain and insufficient feeding. I am so relieved.

Jillian has not been happy about going back to nursing. She also hasn't seemed super happy about taking the bottle either. I try to keep her to a routine. I play the same music (Soundtrack to Pride and Prejudice) and try to feed her in the same place each time. I am writing this as much for my benefit as for yours to remind myself that progress comes in fractional bites. We have seen some progress. She is settling in to nurse more quickly rather than having to suck the pacifier to relax for a minute or two before latching. I am seeing the timer reach 3 minutes of continuous nursing rather than starting and stopping for a minute or two. After 4 minutes she pretty much wants no more. I think she just wants to suck, not suck-swallow-breathe because when she begins to crab at me, she readily takes her pacifier and if I try to slip out her pacifier and sneak in the business at hand, she takes a few sucks before she realizes it's not the green plastic thing. We have had some really pleasant times the last few days with nursing. She is enjoying (and so am I!!) the time to look up and me and smile and listen to me talk. I tell her there will be time later for socializing, but she would rather coo and smile than address the business of building chub. And when she crabs, it is with a very expressive face, a gentle aaaa with a wide open mouth and only a small exclamation point. I really think that face and sound are very endearing. Strange, I know.

Tomorrow we go back to our nurse practitioner at the pediatrician's office. I look forward to seeing JoAnn and telling her about the events and progress of the two weeks since we last saw her. So much has happened and Jillian has made such a change for the better. Jillian will be weighed and probably get her first shot of Synagis a shot to protect her against a nasty respiratory virus this coming winter. I am also looking forward to the chance to pick JoAnn's brain about any ways in which I can make feeding Jillian go a little better. I am hoping that my days of bottle-washing are numbered. Sean pointed out that my bottle washing days will probably come to an end right around the time that we finish remodeling our downstairs, a project that includes adding a dishwasher to our new kitchen. Nice. But I wish I had a dishwasher NOW.

This afternoon we received a package of goodies from some friends in Iowa. (Thanks Lorinda and Ryan!) As I handed Will a new monkey from the package he said to me:

"We should take the tag off so he knows he can stay."

It is hard to believe Jillian had open heart surgery just over a week ago. We've been settling in at home for a week and things are starting to slide into a routine. The day of surgery is starting to feel like a distant memory. Certain things about that day will remain bright in our memories and the sunrise will be one of those things. Take a peek over at the left. To be able to enjoy that beauty on that morning was one of God's small mercies to us. Thanks so much to all who continue to pray and send us encouraging words.

asleep today

Jillian is gaining weight.

waking up

sleepy eyes

Will seems to enjoy having her at home. He's on constant smile watch and makes sure to include her in nightly round of bedtime hugs and kisses. I'm enjoying his exuberance and deepening imagination with play. It's fun to watch and listen to him talk about the mundane things of life as if they were the most novel thing ever conceived. I look forward to him being my buddy again, and being able to take him to the park without worrying about being near a scale for J's feedings. After Jillian's last hospitalization he had a tough time adjusting to being at home with me again. We definitely found him testing his boundaries with mommy and daddy more than the grandparents. This time he is adjusting much better and we're able to enjoy him rather than be on edge all the time. He is so verbal and says such funny things - I could devote an entire blog to just Willisms for the amusement of our friends and family members.

Will should be in bed but he is currently yelling down the stairs for me to rock him. Jilli and I should be in bed. Sean is working on the house downstairs, making much overdue progress. More soon about Jillian's continuing adjustment to home life and upcoming occupational therapy. We appreciate your continued prayers, particularly that Jillian will continue to improve with her eating. She is now nursing only about 3 minutes and taking just around an ounce at a time. She should be taking closer to 2 ounces, preferably more. Until she does, she keeps the nose hose and gets those overnight feeds. Pray also for wisdom for Sean and I as we begin to think about my return to work. There are a lot of factors to consider with that decision, as I'm sure you can imagine. My boss has been very supportive and understanding through this whole ordeal and it's basically up to us. We'll need to make a decision by the end of the week.

waking up happy

Miss Personality has had a very good morning. She's been all smiles today.
We had an early morning workout with Physical Therapy. We learned stretches
to help Jillian get used to bringing her arms in towards her chest, a motion
previously uncomfortable to her because of her great work of breathing. We
also learned some positions in which she can lay to stimulate muscle
development and head control. No tummy time for two weeks, so we have to get
creative to help her strengthen her neck and other muscles which play key
roles in reaching some of her grasp, push, kick milestones.

Jillian is on a roll with her feeding. She is doing better and better on the
bottle and, (drum roll please) yesterday I got to breastfeed her for the
first time since September 1. That was huge for me. She did great, latching
right on like she never stopped. [I realize some people think breastfeeding
is a very private thing, and while I understand that to a degree, I also
think it is such a wonderful, beautiful thing that is one of God's great
gifts to us. I'm passionate about breastfeeding because I really believe
it's something God designed my body to do, he designed Jillian with a
built-in sucking reflex. It is one of the few things that doesn't need to be
taught to babies. Just as I have a responsibility to nourish my child
spiritually, I have a responsibility to use what God has given me to nourish
my children physically, too. Not that I think I'm sinning or being
disobedient to God if I feed formula or provide nourishment by other
measures. I think it's amazing that God designed mothers to be able to
provide for their babies this way. Even in conditions of maternal
dehydration and malnourishment, mothers can still provide breastmilk for
their infants to a large degree. So that may give you a little understanding
to why it's such an important thing for me. Additionally, I love the bonding
it creates, too.] So anyway, Jillian is continuing to nurse well today. The
nutritionist advised us to do pre- and post-feed weights again, so it's back
to number neurosis. We'll continue to supplement her through the feeding
tube with continuous feeds overnight. I am looking forward to seeing
progress with her weight gain.

I saved the best news for last. We are going home today. Can you beieve it?
She had her chest opened up last Thursday, and now it's Monday and we get to
take her home. God is good. We are so thankful for His faithfulness in
carrying her so smoothy through this whole ordeal. We are thankful for so
many things, not the least of which are the prayers of so many, and all your
encouraging words. As Psalm 139 teaches, even at the deepest depths, God is
present with our Jillian. He ordained these days for her even before they
began. And He knew the final outcome.