Hello colleagues, friends, family, anyone who knows about Hannah's cleft,

Well here's how it went. We hunkered down the night before, doing all sorts of inane things to keep our minds off what was only a few hours away. Redeemed a 2 year-old credit at the Judaica Corner. Grocery shopping. Rented a movie ("Powder"). But eventually we had to pat off to bed, Janet writing a letter to Hannah, me, reading a bad book. We talked that night, confiding in each other that unless we were firm in the belief that Hannah herself would be unhappy 5 or 6 years from now, we would not go through the surgery. We loved her now, the face she wore, and she was certainly at ease with it. But we knew things had to go forward, this is where Janet had her toughest time. We said silent prayers and tossed and turned for most of the night.

We rose at 5:30. Hannah's last meal had been at 8:00 the night before, and on the advice from Janet's computer mailing list Cleft-Talk friends, we elected not to get up to feed her again at midnight, or offer her clear liquids at 4 am (her NPO instructions)...the consensus was that the rest was more important than the food. I got the car packed, started, dome light off, and Janet picked her up and carried her down to the car. We were in pretty good spirits, moving pretty mechanically now, knowing that there were things we had to do. In some ways this was the easiest of all, actually doing something instead of just waiting. Hannah neither cried nor was particularly happy to see us. The prevailing expression on her face seemed to be, "Whaaa...?" at the odd hour and doings. About halfway over to the hospital she realized that if she was awake, well by gosh she must be hungry, and started to cry. Those of you who have children know that there is no particular way to comfort this type of crying except to feed....which we could not do. We did play her special "Be My Baby" (by the Ronettes)/ "Born At The Right Time (Paul Simon) tape, which we resorted to often over the next few days. It seemed to help a little.

At the hospital by 6:45 am. They processed us pretty quickly, back to the pre-op area, a series of curtained boothes with many other children lined up for their procedures, some younger than others. We had a procession of nurses and PA's and administrators talk to us, filling in some details, asking us the same old tired questions (Is she allergic to latex?), and of course filling out endless consent forms. The anesthesiologist came by and spoke about what she would be doing....she was very kind and did not mind my more specific questions about the exact drugs, etc. Florane by mask, fentanyl for narcosis during intubation, and Florane for maintenance, fentanyl again post-op. An IV in her hand, LRS/5% dextrose maintenance. Then we waited.

This was tough. My mom came over and that was some comfort, but we asked her to stay in the waiting room so that Janet and I could do this together, alone. Hannah had intermittently fallen asleep (once as Mom hummed "Be My Baby" to her while rocking in her arms) and cried, and it was of some relief when the Dr. B came to give us the final word and answer any last questions (I had only one...Was he going to do the periosteoplasty? Answer: he didn't know, he'd wait to see if it was easy enough to do, in which case the answer would be yes, otherwise it would be done with a bone graft at age 7 - 10...or maybe by that time there'd be a synthetic osteoblastic stimulator available). Not long after he visited us the nurse came to take Hannah down the hall through the big swinging double doors, while at the same time we were escorted to her room to wait. Fortunately, she was calm and gave us neither tears nor a longing "why are they taking me away?" look....either one of which would have cracked my heart right in half. A quick kiss, a softly spoken blessing on her forehead and we went our separate ways.

The room was nice, but small. We went about the business of making it a little more like home, putting up her mobile and other familiar things, switched out the crib for a bed with bumpers that Janet could share with her (OK another consent form), and basically just got ready. It was that comfort of having something to do. But after that....what? What do you do at a time like this? All there is is the waiting, you look at your spouse, you hold hands, you do....what? Wait, that's all, just wait. Not many words can be exchanged...a few automatic, superficial utterances, but its all just a cover-up to hide your deepest fears about her not coming back right, or in tremendous pain....or yes, not at all. You don't want to think about it, your brain tells you it's not really a possibility, but.....your mind and heart does funny things to you at a time like this. So you wait, your gut up in your throat and twisted all around, trying to be brave for your spouse, succeeding only partially. The minutes crawled.

We brought Mom back in, and then Dad showed up, and Sharon, our sister-in-law. Together we waited, and it was good to have some distracting conversation. Finally, after about an hour and 15 minutes, Dr. B came by and told us what we thought he would, that everything went well, he did do the periostoplasty, that she looks fine, and remember, he said, she doesn't know she just had surgery. He was very comforting, and collectively we all took a huge breath of relief. The hard part, I thought, was over.

I was wrong.

We sent the family back to the waiting room, once again to wait alone. It was about half an hour, and while it wasn't as anxiety-ridden as the previous two, it was bad enough. We sat mostly in silence holding hands. Finally she was carried in.

I'm not sure what I expected. The Z-plasty was apparent, the swelling of edema and cellulitis was there, bruising miraculously was not, but really her whole face was puffed up, from around her eyes to her chin...she looked very different. She was wrapped in several thick blankets, her eyes closed and leaning into one which was blotched fairly heavily with blood from the surgery site. I don't know why, but for some bonehead reason I was surprised by that. Even now I'm not sure how I could come to expect a bloodless surgery...I guess I found out in the end I was naive about alot of things. Her arms were in velcroed elbow restraints, with the right one around a board which held a 24 g indwelling catheter taped to the back of her hand. on her left thumb was the red glow of a taped pulse oximeter, and everyone's first reaction was ET ("Ouuucchhhh."). Worst for me was that she was moaning, puffy, shiny eyes closed, with a hoarse, croupy type of sound, made all the more worse when she tried to cry. Damn that trach tube, I thought, my first real lesson of the day in empathy training for my own patients. She looked and acted like....not my daughter. My heart jumped into my throat.

For me, it was horrible, almost tortuous, and I was having a difficult time seeing past the moment, her suffering and pain, hunger, disorientation. But Janet. She was a machine, and like during labor which was physical pain, here she just absorbed the emotional pain and did her maternal work. I know for a fact now that the female is the stronger of our two genders, any doubts about that have now been cast aside, pfffft! gone. Women can dig down deep into something that, if not lost in men entirely, is surely more difficult to access. My love for her grew palpably that day and night. I was relegated to the relatively simpleton tasks of preparing formula, changing diapers, picking up some food or drinks, etc. Janet on the other hand held Hannah in the bed for 12 straight hours, never leaving. No longer were we measuring Hannah's eating by the bottle or the ounce or even the half-ounce. It was by the 3-cc syringe, and every one was a struggle. It was the Shoot-And-Gag method of feeding. But I keep having this image of Janet with infinite patience, over and over again, hour after hour, cajoling and and coaxing a child that was alternatively crying hoarsly with pain and confusion or disappering behind glassy eyes. I do not think I have ever felt more helpless. A few times I took a short walk around the hall just to get out of the room, neurons frayed. As I walked past other rooms with other crying children, many far more afflicted than Hannah, I even struggled to find solace in the "it could be much worse" rationalization, but found none...then, worse, felt pangs of guilt, for is it right to desire some kind of comfort in the suffering of others?

It was a crummy night.

But the more I wigged out, the more steady Janet became. Nerves of steel, she. By morning the last of my exposed nerves was becoming frayed. I just wanted my Hannah back. Things did improve a little throughout the day. For one, my Mom showed up and was a tremendous help, more than she can ever realize. While Hannah was eating slightly more it still was not satisfatory enough by 2:00 pm (when the PA made her last rounds) to allow discharge. It was only later that Hannah began to eat a few oz's at a time, and with some return of her personality and attempts at smiling, we were finally able to talk our way out of the hospital by about 9:30 that night. We went home, loaded her up on Tylenol/codeine, and started our home care.

I still cannot say enough about the support of friends and family, their thoughts and prayers and tangible/intangibles were of more help than they will ever realize. Special accolades go to my parents and Janet's friends on Cleft-Talk. They were all a tremendous source of strength and support. And I must stand in continued awe of Janet and her fortitude and mettle...what reduced me to a raw, frenzied, freshly-exposed tingling bundle of nerves merely steeled Janet forward. Part of my problem was a lack of knowledge, a lack of preparation. How could I, a person of medicine, possibly have ended up this way, you ask? I'll tell you how.

I haven't the slightest idea.

Mostly I grabbed onto all the optimistic soothsaying of doctors, nurses, etc. "She'll be just fine." "She'll do great." "Kids are so resilient." "We'll plan to discharge her in the morning." All true, but a bit disingeneous when faced with the ugly truth for the first time. I wish someone had said: "Gonna be a rough couple of days, count on it," or the equivalent. So my naivete' was profound. Some of Janet's strength came from knowing how bad it was going - or could - get (from Cleft-Talk, I wish I had read more of her posts), in fact she expected worse, copious vomiting of blood, horrid bruising, etc. But most I have to say I am convinced came from something in the X chromosome, something that is readily drawn upon by women when it comes to their children. It may be present in men, too, but I can tell you that it is quite distant from, and buried deeply beneath, the Jump-Up-And-Touch-Things or Dominate-The-Remote-Control genes.

This experience has been, if nothing else, an irreplacable training ground in empathy. Let me tell you where. First for my own patients. Their discomfort, while not manifestly apparent as it might have been in Hannah, is most certainly there, internalized, to the same degree. I don't feel their pain, but certainly I understand it much better, and this makes me more attune to doing all I can to relieve it. Second, my clients. When I give them instructions for treatment at home and they are frustrated in their abilities by an uncooperative pet...when their pet is hospitalized...when they know that their pet is suffering in any way..when they are faced with the unknown. Now, I do feel that anguish for them, and can help them through it better than I could ever have before. Lastly, for all those parents who have children with birth anamolies or injuries or illnesses far more serious than Hannah's....the amount of love and dedication those individuals show by their endless devotion, through their own pain and tears, is almost unimaginable, for I have now had but a taste of that. Those are surely God's most blessed people, doing God's work with God's gifts. My faith is now stronger than ever.

Today, Hannah took 7 oz's of formula from the bottle. We are officially, I think, out of the woods. And with the cellulitis/edema resolving, she is beginning to take on a more normal appearance, though it will still take awhile to get used to the new look. She smiles readily, mostly with her lower lip and eyes, the upper lip still too swollen. Her voice is still about an octave lower than normal, but she is using it more and more often. She is playing with her favorite toys, though she still has to wear the arm restraints if she is not being watched continuously.

My Hannah is back.

I look forward to seeing all of you sometime soon, thanks again for your thoughts and prayers and for indulging me here, God bless you all.

Love,

- - Mark