December 17, 2009

More Better

I've been compelled to write again here. Though I don't know exactly what that may be yet, I'm sure it will come as I go. First, a few pictures. I've posted many on Facebook but some of you readers and followers are not on FB. These are from last week (I think) when Ellen awoke. She's usually pretty smiley now when she wakes up. We're also learning that she likes to lie on her back and swing her arms and kick her legs...a budding swimmer perhaps? Stay tuned. Anyway, the pictures:






First, a few updates on the medical front. We have appointments scheduled next week Tuesday with the pulmonologist and Thursday with the cardiologist. The pulmonologist will check the development of her lungs and (hopefully) authorize the removal of the apnea monitor. The machine has become like a fifth appendage, though we're allowed to take it off when feeding or playing with Ellie. We've come to rely on it, however, when she's sleeping. No alarms for several weeks, but somehow when it comes off full time I think we'll still worry about whether or not she's breathing when she's sleeping. Just a hunch. The cardiologist will perform an echocardiogram to check the progress of a valve that had not closed yet when she was born. There is no real alarm here, but simply checking progress. They assure us that this is a very common and benign thing. We'll take "their" word for it.

Beyond the medical realities, we're both experiencing new realities in parenting and grieving. Jeanine was reading in a book last week about how best to carry on the memory of a lost child (in our case, Lily). It was interesting to listen to the suggestions, especially for the holidays and how this book emphasized talking to your living child about his or her twin. They wrote about how your child knows intuitively that they were a twin and will communicate with her even at a very young age. No doubt we'll both watch closely for that. We've been given several small (I'll call them) figurines in Lily's memory and her gravestone has now been place in the cemetery. Jeanine is also working on a Christmas stocking for her. We attended The Messiah last night at Lincoln Center and both of us cried at some point, for varying reasons. Needless to say, the pain of loss is still very present. I suspect it will be for some time and others have indicated that it shows up in unexpected places. We have been working through it. Last month we attended a group therapy session specifically for those who have lost pregnancies. It was helpful. In preparing to preach at the end of the year, I've been drawn to the idea of remembering and what role remembering plays in life. God emphasized a long memory to the Israelites as they journeyed to the Promised Land. But other things he displayed a short memory, especially as it relates to their sins. Something I intend to explore over the next couple of weeks...remembering..."memento".

In the meantime, we're really enjoying parenthood. Ellen seems to be happy in the morning and less so at night. Many have told me this is quite typical with babies. I'll take their word(s) for it. After hearing a report on NPR about an iphone app that is supposed to be able to interpret babies' cries, we've taken on the new challenge of attempting to interpret them ourselves. I have noticed recently that she has figured out that if she takes a deep breath she can really belt it out. I find it funny...she does not. Ellen that is. I think it probably just makes her even more angry. Jeanine finds it slightly annoying that I think it's funny.

How to conclude such a post? I think the only way is to say thank you. You have been making the journey with us this year. What an unbelievable story...and you're a part of it. So thank you. Your (virtual) presence means more than you realize. My hope is to provide more regular musings in the coming months. And pictures, of course (that's for you, Virginia). Merry Christmas to you all, and if you're in the area over the holidays or anytime for that matter, drop by for a visit here or at the church.

October 26, 2009

Almost 8 Weeks...

...and still not to her due date. Friday, October 30 is the original projection of when Miss Ellen and Miss Lilly would arrive. Much has happened since my last post, so I'll give as detailed an update as I can with a few pictures. We've had three doctors visits in the last two weeks: the eye doctor was almost two weeks ago, the pulmonologist was last Tuesday and the cardiologist last Wednesday. First, the eye doctor. I've spoken to a few of you about that visit. All three were precautionary appointments, set up when we were dismissed from the hospital on Sept. 21. The eye doctor was to check the development of her retinas and to see if the CPAP machine had any negative impact on them. The process was two sets of eye drops - one to dilate her pupils and the other to numb her eyes for what was to come. After 10 or 15 minutes, the drops had taken effect and back into the exam room we went. The doc used some kind of instrument to prop Ellen's eye open and then (pardon the graffic nature of this post) another kind of instrument to move her eye around so she could get a good look. Maybe 30 seconds for each eye while I held her tight and she screamed her little head off. Good set of lungs, but I think we can all agree it wasn't exactly a pleasant encounter. But the doc was pleased with the progress so far and ordered us back in three weeks (next week) for a follow-up to make sure they continue to progress.

The pulmonologist visit last week was to check the development of her lungs and to read the results of the apnea monitor to which Ellen has been attached non-stop (minus baths) essentially since she was born. They were also pleased with the progress, but wouldn't graduate her from the machine. Instead, they said we could wean her off of it, removing it when we were feeding her or watching her closely. But otherwise, when sleeping or in another room, she should still be on it. I think it's more that they are weaning us off the machine rather than Ellen, since she doesn't know if it's on or not. But it was another positive report.

Finally, the cardiologist last week was to check on a heart valve that had not closed yet when she was sent home from the hospital. After the initial check up and regular check in things (weight - 7 lbs, 11 ounces, length - 20 inches) the cardio doc came in and said it was really to early to check since she hadn't made it to her due date yet. But he also assured us that it wasn't a big deal and that we should make another appointment in 3-6 weeks "for peace of mind." In other words, this is not a big deal. Did I say that already? Even if the doctor's appointment was really quite pointless, I did still get a sticker and a lollipop out of the deal.

So here we are, 7 weeks and 5 days into life on the outside. Ellen eats well and sleeps well. We've officially moved her into her own room upstairs and we took her for a hike yesterday in the beautiful New Jersey autumn weather. Here are some pictures for your enjoyment - with some older ones so you can see how much she's grown and changed.

Just after bathtime...

Birthday picture with dad...

Mid-feeding...

Day 1...

October 12, 2009

Pictures - six weeks

So I've been reprimanded for not posting pictures. Even blackmailed. At long last, here are some more for you to enjoy. At last weigh in - last Thursday on the kitchen scale - she was six pounds and six ounces. I think from the pictures you can see where the weight is being stored.

In other news, we have several appointments coming up in the next two weeks. Tomorrow we see the opthalmologist, and next week the pulmonologist and cardiologist. All these appointments were set up when Ellen was dismissed from the hospital as precautions taken for all premies. We're hopeful that all will go well, but if you think of it we appreciate your prayers. Hopefully at the pulmonologist the apnea monitor will be removed. We'll see. Enjoy the pictures!


Molly has been wearing the "Cone of Shame" for some time...she can't stop scratching her ears. We're hopeful now that Ellen is home she'll return to normal. We'll see.





Our friends Eric and Kylee has a baby - Amelia - about 3 and a half weeks before Ellen. This is the first picture of the two little friends together.


September 21, 2009




Words with pictures to follow

Monday, September 21 is another graduation day. It was a few months ago that I wrote about the first of hopefully many graduation days when we were sent home from CHoP. Today is another one of those. As I make this blog entry just to my right in her little red carseat (the carseat seems huge, but it's little) is my baby Ellen. She was discharged this afternoon after only 19 days in the hospital. This morning the nurse said it was possible she would go home and that we'd probably know by noon. Noon came and went and we had no phone call from the hospital. We called to see what was up and the nurse said the doctor was in at that very moment reading Ellen's charts. She would call as soon as she knew. An hour later the phone still had not rung. So we called them (again). The doctor had read her charts and then went to lunch. Apparently he did not know we were on the phone waiting to hear the verdict. Or he was just simply not that anxious about it. Either way, he left us in the dark. We planned to go for the 4 PM feeding anyway, and the nurse told us to bring our equipment in just in case. As soon as we walked in the door at 3:30 she said that we were headed home! So after all the paperwork, a little dress up in the clothes that I bought for her just today, and her 4:00 meal, she was loaded up (all 4 pounds, 7 ounces of her), strapped in, and her first taste of freedom was upon her. She came home with an Apnea monitor (as mentioned in an earlier post) and will have a checkup on that in one month, if not before, depending on how much she makes the alarm go off. And she has an eye checkup and an ear checkup and a heart checkup...phew. I'm sure there are more but all we need to know right now is that baby is home. Thank you God!

It is still somewhat bittersweet, knowing that we had been preparing for a double graduation today. And it is still at times difficult for us to know how to deal with both joy and sorrow at the same time. But right now, it's a contented sigh that you hear - both from the kitchen table and the kitchen chair. I'm sure there will be many more.