tag:blogger.com,1999:blog-43036005350991830012012-02-16T20:20:14.838-05:00Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.comBlogger971100tag:blogger.com,1999:blog-4303600535099183001.post-31685879965294480002010-05-05T22:08:00.000-04:002010-05-05T22:08:30.688-04:00

Daphne and the rest of the family are now on Wordpress. Please update your readers and come visit D's new web home. Still a work in progress, so please bear with me. Hope to hear from you soon.

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-53146902964895481582010-05-03T16:31:00.000-04:002010-05-03T16:31:27.971-04:00

In case you haven't heard, there's been a huge recall of many kids medicines that are fixtures in parents' medicine cabinets. Hello Infant Tylenol! Here's the complete list: http://www.mcneilproductrecall.com/page.jhtml?id=/include/new_recall.inc

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-15320583706847257162010-04-29T22:00:00.004-04:002010-04-30T11:47:08.810-04:00

UPDATE: Just spoke with D's nephro for over half an hour. She is dehydrated, and her labs show it. The higher concentration of the Elecare is too much for her to handle. He said to give her water and he will speak with the GI. She needs more fluid, not less. I feel so much better that he is involved. He also gave me the name of a GI/Allergy Immunology person that we may consider seeing. ********

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com4tag:blogger.com,1999:blog-4303600535099183001.post-50070228444256417042010-04-28T17:00:00.000-04:002010-04-28T17:00:18.219-04:00

I know I am going to sound crazy, but sometimes I think it was easier back in the NICU. I don't really mean that, but in terms of the coordination of Daphne's medical care, I didn't know how easy I had it then. Babies at our NICU were assigned to either a Nurse Practitioner, or to a resident. Daphne was clearly not a feeder-grower, so we got an extraordinary NP, who was the point person for her

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-23453035726345068282010-04-26T13:40:00.001-04:002010-04-26T16:50:11.380-04:00

This past Saturday we had a ceremony to give Daphne her Hebrew name. Without further ado, meet: Liat - or Li'at -  ליאת The meaning of the name, which is common in modern-day Israel, is "You are mine." As our Rabbi so beautifully explained to our friends, family, and congregants who shared the moment with us, her name represents our desire to keep and raise this child to womanhood, which was

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com4tag:blogger.com,1999:blog-4303600535099183001.post-23804721032219071302010-04-19T10:00:00.001-04:002010-04-19T10:02:30.376-04:00

Haven't posted in a few days because there hasn't been that much to talk about. We saw Dr. Moody last week and he decided to increase the calories in D's formula, from 20cal/oz to about 24cal/oz. He still insists on weaning her Prevacid, but this time he wants to cut her dose by 1/4 instead of 1/2. After my battle with the insurance company last week and several conversations with Drs and other

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-15874132217978155682010-04-12T11:00:00.000-04:002010-04-12T11:00:19.180-04:00

Who doesn't daydream about winning the lottery? When Daphne was in the NICU, it was one of those rare instances that having more money wouldn't make a difference. If we won the lottery, her odds would not improve by one bit. Sure, I wouldn't have to work all day counting the minutes until I could get to the hospital, and we surely would have bought a nice place overlooking Central Park, walking

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com3tag:blogger.com,1999:blog-4303600535099183001.post-73125131324831230622010-04-10T13:12:00.000-04:002010-04-10T13:12:06.298-04:00

Before Daphne's heart surgery, we received a packet of information from Pediatric Cardiology. It was a shiny red folder and contained brochures on anesthesia, the PCICU, the hospital's child life program and this booklet called "To Mend a Broken Heart." It explains heart surgery to fix congenital defects in lay language, and its purpose is to provide parents with information so they know exactly

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com8tag:blogger.com,1999:blog-4303600535099183001.post-84451262438294835112010-04-09T09:17:00.001-04:002010-04-09T13:38:35.984-04:00

UPDATE - Things are quiet. D has kept down 14oz of Pedialyte and is in great spirits. I feel like I was hit by a truck... I am waiting to hear back from the pediatrician to see what she wants me to do - push more Pedialyte, when to give formula a try. Also, yesterday I touched base with Dr. Moody. He is not at all concerned about her weight loss considering she is going through back to back viral

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-1866549905886732892010-04-08T09:48:00.001-04:002010-04-09T09:12:07.925-04:00

It turned out that Daphne caught (we think) some kind of stomach bug. Yesterday she threw up nonstop, and was having trouble keeping down even small amounts of Pedialyte. I rushed home from work ready to take her to the ER. Our pediatrician told me to give her a rest of one hour and then try again giving Pedialyte every five minutes. Thankfully that worked and she kept down over 6oz. In the

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-47331115152535786622010-04-07T11:51:00.002-04:002010-04-07T12:54:18.239-04:00

Took Daphne to the pediatrician this am to make sure she doesn't have an ear infection (she doesn't). She's uncomfortable and throwing up again. She lost more weight. The pediatrician is calling for drastic measures (ng feeding at night). I agree we can't afford to lose any more weight (well I could, not D) but I don't think an ng is the solution for hundreds of reasons. Dr Moody gets back

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com6tag:blogger.com,1999:blog-4303600535099183001.post-49883855728639320242010-04-04T21:44:00.000-04:002010-04-04T21:44:02.447-04:00

We hope that you are having a wonderful Passover, a happy Easter,  and a joyful celebration of everyday miracles.

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com3tag:blogger.com,1999:blog-4303600535099183001.post-90421797325993179222010-04-03T22:14:00.000-04:002010-04-03T22:14:25.014-04:00

Daphne and Lucy both have colds but are on the upswing, I think. They got very congested but thankfully had no fever or other complications. D got her Synagis this week and the pediatrician felt comfortable administering it because her temp was normal and her chest was totally clear. Yesterday I finally heard back from GI #1 with results of the UGI we had done a week and a half ago. I knew she

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-86615829212774009522010-04-02T17:01:00.000-04:002010-04-02T17:01:11.806-04:00

Today is my mom's birthday. My mom is beyond inspirational, and if I can provide my girls with half the support, encouragement and love that she has always shown me and my brother, I'm in good shape. My mom cheered me on when I decided to study abroad my last year of high school...and that turned into college, and graduate school, and raising a family thousands of miles away. She wanted me to be

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com3tag:blogger.com,1999:blog-4303600535099183001.post-27745186761829327442010-03-27T11:06:00.000-04:002010-03-27T11:06:58.214-04:00

Dr. Moody warned me it would get worse before it got better. And it sure did. Lots of vomit, and as the Elecare doesn't curdle, lots of very liquid, messy vomit. Our pediatrician saw Daphne yesterday and she questioned (as did I) weaning the Prevacid while transitioning the formula. Daphne has NEVER done well with too much change at once. I am going to restore the Prevacid dose and give it a

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-12085541510790030372010-03-24T21:54:00.000-04:002010-03-24T21:54:21.586-04:00

This past weekend we had amazing weather here in NY. Finally! It's been a long, miserable winter. We took the girls to the New York Botanical Garden for lunch and a nice walk. We love going there and it was Daphne's first visit. They are holding the famous orchid show now, but the line into the conservatory was super long and we thought it was best not to bring D into a greenhouse full of people

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com6tag:blogger.com,1999:blog-4303600535099183001.post-45070756799386835822010-03-24T11:08:00.001-04:002010-03-24T13:29:22.469-04:00

If you were waiting anxiously to hear how the rest of our day went (just kidding), sorry I didn't post last night. Yesterday was completely exhausting and all I could do was curl up in a ball in front of the TV after dinner, then go to bed. In the afternoon I took D to see another GI - this one recommended by her feeding therapist. She warned me he doesn't have the most sparkling personality (

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com6tag:blogger.com,1999:blog-4303600535099183001.post-29923420404196642662010-03-23T12:56:00.000-04:002010-03-23T12:56:06.541-04:00

The first part of today's medical marathon is done. As predicted, the upper GI series was a disaster. Daphne's feeding therapist had requested just a swallow study, which shows the swallow and the esophagus. The GI wanted to see her whole upper GI to make sure there were no anatomical issues (she is at a higher risk because of the heart defect). Anyway, for this test, they strap the baby to a

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com5tag:blogger.com,1999:blog-4303600535099183001.post-39752423472307949992010-03-22T16:09:00.000-04:002010-03-22T16:09:42.913-04:00

Remember back in January when we took D to a GI specialist to deal with her reflux? We made all the changes the Dr. suggested, and we haven't had consistent improvement. Last month we made an attempt to switch formulas - D is currently on Similac Organic and we tried Alimentum which, while still milk-based, is more broken down and supposedly easier to digest. It also has the special feature of

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com5tag:blogger.com,1999:blog-4303600535099183001.post-80854786093910608712010-03-20T19:40:00.000-04:002010-03-20T19:40:45.578-04:00

For every milestone that is anticipated and expected on pins and needles, occasionally there's one that comes out nowhere. Today, Daphne started clapping. Lucy and I were both shocked. I'm glad I wasn't the only one to witness it. She's done it a few times, but never on command, so Zev doesn't quite believe us. I will try to take a picture, but since she only does it when she feels like it, it

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com4tag:blogger.com,1999:blog-4303600535099183001.post-66567142792820699572010-03-18T15:42:00.000-04:002010-03-18T15:42:35.780-04:00

I know I've discussed here the misery of the eye exams Daphne went through while at the NICU and for several weeks after discharge. Like many many preemies she developed ROP (and pre-PLUS disease) but we were fortunate that she did not need surgery and the problem regressed on its own. When she was discharged, she was still on the cusp. One of the retinologists was for surgery, but the more

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com4tag:blogger.com,1999:blog-4303600535099183001.post-55709745958314004242010-03-15T14:39:00.001-04:002010-04-26T16:51:33.995-04:00

This post has been brewing in my head for days now, and I will go ahead and apologize in advance if it sounds defensive or weird. In the past few weeks, I've noticed that when someone asks me how Daphne is doing, and I make the mistake of going into detail about her eating issues, or her multiple therapies, very often the person will: 1. Get a vacant look on their face (I know, nobody cares

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com6tag:blogger.com,1999:blog-4303600535099183001.post-42557311965476175242010-03-14T14:55:00.000-04:002010-03-14T14:55:34.226-04:00

We were finally able to unload some heavy baggage, literally. Friday we returned all the oxygen equipment that we brought home along with Daphne in late July. Yes, she has been off O2 for a while, but her cardiologist thought we should wait until this last echo (on her birthday) to make sure the pulmonary hypertension is really gone. We got the green light to return the stuff. It was really weird

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com6tag:blogger.com,1999:blog-4303600535099183001.post-18673371967580512512010-03-11T21:52:00.000-05:002010-03-11T21:52:41.980-05:00

This is a nightly ritual now.

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-86440057228855980292010-03-11T21:43:00.000-05:002010-03-11T21:43:30.204-05:00

Feeding therapy is going OK. Daphne is still not crazy about purees, and she is definitely not into anything being inserted into her mouth. She's more than happy to stick just about anything in, but SHE has to do it. So we put food in a spoon, hand her the spoon, and she will put it in her mouth. Her favorite flavor is that of sweet potatoes with lots of cinnamon. The feeding therapist suggested

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com4tag:blogger.com,1999:blog-4303600535099183001.post-65215780668712218922010-03-09T22:04:00.001-05:002010-03-09T22:06:46.678-05:00

My dear aunt Priscila, Tia Pris, got Daphne the amazing tub I fell in love with. D loves it as much as I do. She starts squealing the moment she sees the tub, and splashes and laughs throughout her bath. She is not at all intimidated by the water - which can be dangerous - and doesn't mind getting her whole face wet. I was hesitant to let go completely to take a picture because she is so fearless

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com6tag:blogger.com,1999:blog-4303600535099183001.post-3610626463672823622010-03-04T12:51:00.001-05:002010-03-05T21:58:37.082-05:00

I can't believe it, baby girl. You're one year old. Except, not really. You've been out of me for a year, but you should have come out in late May, not the second day of March. I know the first year of every child is eventful and challenging for their parents, but I really mean it. Your first year kicked our butts and made us gray. Do you remember when you were first born, after we had lost your

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com3tag:blogger.com,1999:blog-4303600535099183001.post-29098777422321476222010-02-22T12:05:00.001-05:002010-02-22T12:07:48.086-05:00

I promise this will be the one and only post about how miserable I feel right now. Please excuse the whine-fest, and excuse my cranky, edgy, less-than-sociable mood at the moment. It's anniversary season. See, a year ago on Feb 24 I was admitted to the hospital for observation. The plan was to be monitored until the girls reached 32 weeks, when they would be safer on the outside. On Feb 28, my

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com9tag:blogger.com,1999:blog-4303600535099183001.post-87874960867354312182010-02-20T14:20:00.000-05:002010-02-20T14:20:20.656-05:00

After a whole lot of advertising (biting, drooling), D has her first tooth. When you can actually see it I'll take a picture. For now, it's a little speck of white in the middle of a red, swollen gum. But when she bites, you can totally feel it.

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com3tag:blogger.com,1999:blog-4303600535099183001.post-71597796731168671282010-02-18T14:05:00.000-05:002010-02-18T14:05:08.743-05:00

Daphne shares many qualities with her namesake, the plant. Pretty. Has no problem holding her own in the garden. Can grow in a variety of environs and climates. Sturdy little bush.

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-63925317254959755132010-02-14T18:39:00.000-05:002010-02-14T18:39:14.489-05:00

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com4tag:blogger.com,1999:blog-4303600535099183001.post-81882996093041105842010-02-12T12:45:00.000-05:002010-02-12T12:45:17.709-05:00

I am not a first time mom. I was able to avoid a lot of the consumer traps with D that I had fallen into with Lucy. Granted, her being in the hospital for five months didn't really make me feel like shopping. But I am helplessly in love with this baby tub. Can I justify spending money on something she will outgrow fairly quickly? And more importantly, do these come in grown up sizes? Because I

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com6tag:blogger.com,1999:blog-4303600535099183001.post-49687518474344938892010-02-12T12:37:00.000-05:002010-02-12T12:37:10.265-05:00

We started working with the new PT yesterday. SO. MUCH. BETTER. I didn't even know how unhappy I was with Sam until I saw someone else work with Daphne. She explained everything she was doing. Had me and Nanny repeat the exercises. Gave me feedback. PT Amy thinks all systems are in place, and D just needs to get a bit stronger. Yesterday I found her on her belly twice after leaving her on her

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-68122663551931245092010-02-08T09:59:00.001-05:002010-02-08T10:00:06.613-05:00

Scott Wright is a preemie Dad. He and wife Jodi are parents of a former l lb 8oz micro. Scott is also a very talented illustrator who created Micro-Preemie Power, a comic book about his son Morgan. From this sample, I can say I love the illustrations, the tone, and it just rings SO true. Pictures and a few words do speak louder than, well, a lot of words. The Preemie Experiment is doing a

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-68153960013399621062010-02-06T15:38:00.000-05:002010-02-06T15:38:33.707-05:00

Daphne has been napping when I get home from work at 6pm or so. It's sad because that means I get to spend even less time with her, but at least it allows us to have a leisurely dinner with Lucy and focus on her. Last night, these are among the things she asked or stated - which caused me to eat and drink more than I planned to... You can probably tell our answers by her follow up. This is not

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com5tag:blogger.com,1999:blog-4303600535099183001.post-34164275420179588622010-02-04T16:44:00.001-05:002010-02-05T13:08:50.128-05:00

I have here in my hot little hands, right off the fax machine, a copy of D's feeding eval. Nothing weird or surprising. Just good to have confirmation that I'm not crazy (on this count anyway). Here's some of the highlights. Behavioral - D presented as a happy and social baby. She responded warmly to the evaluator's presence... D made and maintained good eye contact with the examiner during

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-49005616494163186972010-02-01T10:48:00.001-05:002010-02-01T10:52:22.231-05:00

Daphne aced her speech/feeding evaluation. By that, I mean she didn't eat. Which is what we needed. I had no expectation that she would somehow open wide and take her solids, but who knows. Children have been known to make fools out of their parents in front of doctors, nurses and teachers. In any case, she didn't eat, drooled the apple sauce as usual, showed zero interest in it and then

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com4tag:blogger.com,1999:blog-4303600535099183001.post-46507060233519270272010-01-28T11:47:00.001-05:002010-01-28T11:50:05.965-05:00

Guess who's got a nose full of snot? Lucy... and a day later, Daphne... Yesterday I took D to the pediatrician to get her ears checked because Friday she is supposed to get Synagis and I wanted to make sure if she had an infection, treatment would be under way. Her ears are filled with fluid, but no infection yet. Clear chest. Phew.... It was our first time seeing the practice's new NP. She

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-24526052604237269832010-01-25T13:19:00.002-05:002010-01-26T16:26:26.261-05:00

As of today, Tuesday, EI has approved evaluations by OT and speech/feeding. I am waiting for calls from the evaluators. After MUCH nagging from me, and dozens of (unreturned) phone calls,  Sam the PT has submitted his report on Daphne. I have been in contact with our EI service coordinator about her feeding issues, and hopefully she will be able to get a feeding and OT evaluation soon. I have to

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com4tag:blogger.com,1999:blog-4303600535099183001.post-8454135623345571472010-01-24T15:52:00.000-05:002010-01-24T15:52:28.292-05:00

... and all I got was a box for my onesies.

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com3tag:blogger.com,1999:blog-4303600535099183001.post-6385257640198148832010-01-19T11:57:00.000-05:002010-01-19T11:57:34.506-05:00

The good news: Daphne's heart is doing great. The bad news: she didn't have an echo. Daphne had an appointment for a sedated echo at 10am. She had to be NPO (no food) for 6 hours, so I woke her up at 4am for a bottle (which she then threw up on me). Zev drove in with her, but they had no record of her  appointment. It's a good thing I kept the little reminder card they gave me, or I would have

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-56511678682281566992010-01-17T12:52:00.000-05:002010-01-17T12:52:18.094-05:00

It's been brought to my attention that my last couple of posts were random and perhaps I am avoiding an update on the GI changes.  Avoidance is a completely valid technique, but here's the scoop. Yesterday was the first day I was available for 'round the clock feedings and minute note-taking. Daphne has been taking her bottles a little easier without the thickening and with the slow-flow nipple.

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com4tag:blogger.com,1999:blog-4303600535099183001.post-23036719140057767552010-01-15T11:14:00.000-05:002010-01-15T11:14:20.840-05:00

The question was posed by my darling husband last night when I reported a conversation I had just had with Lucy. I enjoy bedtime reading and tucking her in because that's when she tells me her deepest, darkest secrets. Last night, the conversation was startling from the get-go. "Mommy, when people aren't Jewish..." Uh-oh. Where could this possibly go now? "Does Santa Claus come in through the

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com3tag:blogger.com,1999:blog-4303600535099183001.post-18794770957146732432010-01-14T10:39:00.000-05:002010-01-14T10:39:10.770-05:00

This morning was a little hectic and chaotic (even more than usual). D threw up on me, I missed my train, couldn't eat breakfast because I took my Synthroid too late, and forgot to bring the cake carrier to return to my friend who baked Lucy's awesome birthday cake. If you know me, you know I'm not pleasant without my coffee. Anyway.....Instead of whining about my day, because really, it's not

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-29522198355800317282010-01-13T10:24:00.000-05:002010-01-13T10:24:10.925-05:00

We stopped by the NICU after the GI appointment on Monday. I had warned the social worker that we may stop by, and she alerted everyone. When I called to say that the GI appointment was running late she told me there would be scores of disappointed people if we didn't bring Daphne for a visit. It was such a great one. We first ran into Dr. G in the hospital basement. He was the one who had given

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com3tag:blogger.com,1999:blog-4303600535099183001.post-68610100863835300252010-01-13T10:02:00.000-05:002010-01-13T10:02:47.721-05:00

Yesterday was the first full day after all the changes proposed by the GI doctor, and things are.... gasp... better. D has been taking her bottles more calmly, and so far keeping them down. The whole take-a-break-after-each-ounce business is hard work, but it seems to help her belly empty which prevents her from feeling full and bloated. Giving her Prevacid first thing in the morning has been OK

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-39298395573652095752010-01-11T15:36:00.000-05:002010-01-11T15:36:08.599-05:00

Wow. What a total revolution in our thinking and strategies this appointment sparked. Which is what we needed. Now we just need it to work. We really liked this doctor, a total take-charge fast-talking New Yorker who thought Daphne was very cute. She said "all your troubles didn't affect your cuteness." Clearly, she must be smart. Anyway.... Dr. P thinks D's issues are caused by her stomach not

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-13484097371122392732010-01-10T20:57:00.000-05:002010-01-10T20:57:17.088-05:00

Lucy turned 4 years old this week (Jan 5) and we put all our medical issues aside to celebrate our big Princess. Lucy had a rough year just like the rest of us, but she weathered it pretty well. Don't underestimate the resilience of children. We had a party on Sat. for about 15 kids including Daphne. We don't take her out much, but we couldn't keep her from her big sister's big bash. She really

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-85978818528797396482010-01-08T11:22:00.001-05:002010-01-08T11:24:26.625-05:00

I apologize in advance as this post is to help me organize the history of Daphne's reflux. Monday we finally have an appointment with a GI specialist. We have been shuffling our feet about this because #1 - her doctors don't seem too concerned and #2 - she already sees too many doctors. But it's been too long, and we're tired. Daphne's appetite is still pathetic, she still has bad bouts of reflux

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com3tag:blogger.com,1999:blog-4303600535099183001.post-63061742975300890122010-01-05T16:00:00.000-05:002010-01-05T16:00:06.301-05:00

Daphne AND Lucy are on antibiotics for ear infections. Our pediatrician said we may want to think about bringing D to the ENT sooner rather than later. Lucy hadn't had an ear infection since she got tubes in June 08. Now the tubes fell out and the infections are back. It's all my fault. I make children with deep sinuses that don't drain. I hope they will forgive me someday.

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-61914731315056563502009-12-31T18:04:00.001-05:002009-12-31T18:30:32.512-05:00

2009....we will never forget you, but will NOT miss you. 2009 was the year when everything changed. The other morning I was driving in to work and this song by The Mighty Mighty Bosstones came up on the radio and took me right back to senior year of college (yes, I'm old). Anyway, I don't think I had ever paid attention to the words but this time it hit me. It goes: Have you ever been close

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com4tag:blogger.com,1999:blog-4303600535099183001.post-86344876091524230352009-12-29T14:21:00.001-05:002009-12-30T10:20:13.822-05:00

D was able to keep all her Pedialyte down yesterday and in the evening we started giving her little bits of formula. She was SO hungry, it was pathetic. She actually tried to take Lucy's sippy cup. She had a couple of 3oz bottles and kept it all in. This morning she seemed OK but not particularly hungry. We will continue feeding her small amounts and only reintroduce solids when she is back up to

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com0tag:blogger.com,1999:blog-4303600535099183001.post-43989282496172836772009-12-28T11:05:00.001-05:002009-12-28T11:08:25.219-05:00

Thursday morning I took D to see the endocrinologist. You think - who goes to the Dr on December 24? I thought that too, and assumed the appointment would be quick and easy - WRONG. What was I thinking? This is New York and lots of people thought the same thing. I bundled D and drove down. It was really cold and windy, and the snow slush from the previous weekend still on the ground. The only

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com3tag:blogger.com,1999:blog-4303600535099183001.post-36227638963717602392009-12-26T22:08:00.000-05:002009-12-26T22:08:33.999-05:00

You know that annoying lady, the one who makes it her personal business to compliment your cute kid in a public place, then guess the child's age to prove how smart she is and how well she knows children? Preemies throw her off and she doesn't like it! The other day we were waiting for the valet to bring my car around after D's pulmonologist appointment. D was awake and making noises in her car

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-43776324286632757002009-12-25T10:58:00.000-05:002009-12-25T10:58:03.872-05:00

No, just in the US. New York State placed dead last in a recent study that rated the happiness level of Americans.  New Yorkers are in a tizzy about this news. Well, we have the greatest City in the planet. We have Broadway, we have the best bagels, the best pizza, the biggest, baddest lots of things. Everybody wants to live here. And that's part of the problem. We have the highest cost of living

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com0tag:blogger.com,1999:blog-4303600535099183001.post-83172792263039791042009-12-22T20:31:00.000-05:002009-12-22T20:31:10.751-05:00

A good visit to the pulmonologist today. She thought Daphne is doing great, good sats, easy breathing and crystal clear lungs in spite of her cold. Her ears are better from the infection but the stuffy nose remains. The good doc wishes we could lower her Prevacid dose, but if we want little D to keep eating and gaining weight, that will not be possible yet. She is finally over 12lbs! 12lbs 5oz to

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-28902226437565992122009-12-21T21:56:00.000-05:002009-12-21T21:56:19.292-05:00

We decided to try to wean Daphne's Prevacid very gingerly....by 1ml. It didn't work. Slowly but surely, the reflux returned, with all its ugly repercussions. Lots of laundry. Vomit everywhere. The worst part is the loss of appetite - again. Daphne reacts quickly by avoiding the bottle. We have a fresh new bottle of Prevacid in the fridge and will continue with her regular dose. Sigh. Our days

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-28672432074356980002009-12-19T10:17:00.000-05:002009-12-19T10:17:01.366-05:00

Here's how last night went: 8:30pm - Zev tucks Lucy in and falls asleep with her in her room 9:30pm - After feeding Daphne and spraying her nose, I put her down in her car seat (still too congested for the crib) 10:30pm - I go to bed but unfortunately get sucked in by 20/20. Should have gone to sleep at 9. 11:00pm - Zev wakes up in Lucy's room and comes to bed. 1:00am - Alarm goes off, Zev gives

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-84511183462922257792009-12-18T10:17:00.000-05:002009-12-18T10:17:05.049-05:00

Sorry it's been a few days...not much to report. The congestion continues, the ear infection seems to be better (considering the improved mood and appetite). We've had a bunch of days free of doctors' appointments (with two coming up next week). Daphne continues to develop physically, and it's quite amazing. Thinking back to her "minimal chances," "possible brain damage," etc., etc., it's nothing

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-8557877315631604942009-12-14T10:42:00.001-05:002009-12-14T10:45:58.719-05:00

Scanning the health section of Time Magazine for work (yes, I have to do that weekly), I ran into this article. Daphne is long out of the incubator, but I thought it was interesting. Maybe we'll play more Mozart at home. I think babies enjoy music anyway. Mozart May Help Preemies Gain Weight

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-58175277791183553192009-12-12T20:23:00.000-05:002009-12-12T20:23:11.673-05:00

This morning when I fed Daphne at 4am I noticed her congestion was a lot worse. Very little air was getting through her nose. Still, she had her bottle and went back to sleep. We had decided to let her sleep without the cannula since she pulls it off anyway, and keep her monitored. When I connected her after the bottle, her sats seemed to be lower than usual. Needless to say, I panicked. They

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-5678912606117057612009-12-12T12:35:00.001-05:002009-12-12T12:37:29.137-05:00

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-11084085509558986892009-12-12T12:32:00.000-05:002009-12-12T12:32:23.854-05:00

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com0tag:blogger.com,1999:blog-4303600535099183001.post-28435564669988580442009-12-10T11:08:00.000-05:002009-12-10T11:08:57.308-05:00

We haven't all been healthy at the same time in our household in about a month. This cold came in like a breeze and has been swirling around, back and forth, and now the girls are both congested again.  I am already tired of the winter. OK, so it's not officially winter yet and the snow/frost/ice barely arrived. Today is the first day with highs in the 30's - but I'm done. Daphne had maybe half

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-48806688733989104692009-12-09T16:39:00.000-05:002009-12-09T16:39:09.158-05:00

Hi Daddy. I'm not sleepy. What's that on your eyes? Shiiiiny. And what are those things in your mouth?

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-59722282405000312952009-12-07T11:25:00.000-05:002009-12-07T11:25:06.615-05:00

I am sorry if this comes off too political, and feel free to skip it. But as a cancer patient and a mother, I was doubly interested in Nicholas Kristof's column this week. When Lucy was born almost four years ago, nobody talked about bpa. Now, it's almost common knowledge that it's bad for you and many countries have taken baby products that contain bpa off the market. I was not able to attend

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-72468415114948269722009-12-06T15:18:00.000-05:002009-12-06T15:18:09.684-05:00

Mommy finally bought me a girly headband to prove that I am a girl. 

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-7259596359668245172009-12-02T15:03:00.000-05:002009-12-02T15:03:34.021-05:00

Last week, I was going to write a list of things we are thankful for this year. The compilation of such a list quickly became laborious and emotional, since I still alternate between being thankful beyond words, and other times annoyed and filled with self-pity. So I will spare you from my angst. I just have to say that I am very, very thankful for the incredibly generous and knowledgeable

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com4tag:blogger.com,1999:blog-4303600535099183001.post-12629985746935359572009-11-29T13:42:00.000-05:002009-11-29T13:42:29.282-05:00

Hope everyone had a Happy Thanksgiving. Daphne had her first trip up to Dutchess County to visit her grandparents. We had a nice, quiet, peaceful day. The weather was unusually warm, so Daphne got some fresh air while big sister ran around. It was lovely to not have to cook and get to spend hours on the couch snuggling with D. Dinner was delicious, and we spent the night in our own beds.

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-10301989628008227482009-11-25T10:11:00.000-05:002009-11-25T10:11:30.867-05:00

One year ago, on the Wednesday before Thanksgiving, I got out of work early and went to a pre-natal appointment. It was with the OB who ended up delivering the twins. He gave me a quick ultrasound, a flu shot, a pep talk, and sent me on my way. If we both knew that afternoon what the next year would bring....well, I don't think I would have made it home to brine that turkey. I am incredibly

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-64027389973388512482009-11-21T19:26:00.001-05:002009-11-22T18:08:19.393-05:00

Daphne is definitely congested but seems OK otherwise. After a whole day of not eating, today she took a couple full bottles after being nebulized and/or suctioned.                                                                    ********* Lucy has been sick since Sunday with a cold. She is congested and had a low-grade fever. When she started showing symptoms, we separated her from Daphne

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-53465408718998446342009-11-20T21:06:00.000-05:002009-11-20T21:06:25.378-05:00

 Today was a glorious autumn day in NY - sunny, mild, leaves in full color - what a perfect day to sit in a hospital waiting room for two hours, only to leave without being seen. Oh yeah. Daphne was supposed to get two ultrasounds today. Her endocrin wanted to get a look at her thyroid, and nephro wanted to check how her kidneys are growing. Nothing urgent, just studies we've been meaning to get

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-62300927726856699692009-11-17T15:30:00.000-05:002009-11-17T15:30:17.309-05:00

I am so sorry, Daphne, for ever attempting to switch your formula. You are stuck with a Mommy who can't produce much breast milk, but managed to pump for 5 months. At the end, I could only supply two of your feeds every day. I remember how much you hated the switch from SSC 24 to Neosure at the hospital. The Neosure coincided with a really bad period for your reflux - cause and effect? Not so

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-56719688763578185222009-11-14T21:15:00.000-05:002009-11-14T21:15:02.710-05:00

Daphne's first taste of "real"food: homemade sweet potato puree. She liked it! She is taking to solids quicker than I thought.

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-39016760343315302302009-11-14T13:49:00.000-05:002009-11-14T13:49:07.793-05:00

Lucy is almost 4 years old. She is a fantastic big sister. She is very helpful and loving with Daphne. Her favorite thing is to hold her, and she can always tell before anybody else when she has poop in her diaper. What a talent!

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-50363273445434438712009-11-12T10:03:00.000-05:002009-11-12T14:17:44.867-05:00

10 days without handling my Daphne! You'd think after five months at the NICU, this wouldn't be such a big deal, but it was painful. I think she felt it too, because she has been particularly fussy, for no apparent reason. I was itching to pick her up yesterday morning, and of course, little miss decided to sleep in after her 5am bottle. I only had a couple of minutes with D before I had to rush

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-24806526050808383162009-11-06T11:58:00.000-05:002009-11-06T12:03:16.958-05:00

While Daphne was in the NICU, I did not have the energy, time, or maybe courage to blog. But we took enough pictures that I can sort of document her five months there through images. I have to thank my friend Megan, who not only encouraged and supported me, but our email history allowed me to dig up a lot of chronological info. March 9 - one week old - she looks plump, but she is only about

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-63108223278011550552009-11-04T18:19:00.000-05:002009-11-04T18:19:22.126-05:00

As most of you know, I am being treated for thyroid cancer. I was diagnosed during Daphne's final weeks in the NICU, and timed my surgery so I would be recovered by the time she had surgery. I am now receiving radioactive iodine ablation treatment, to destroy any thyroid tissue that was left by surgery, or any cancer cells that may have migrated from my neck. I am in isolation, and won't get to

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com0tag:blogger.com,1999:blog-4303600535099183001.post-21437785961407080092009-11-03T13:08:00.000-05:002009-11-03T18:42:28.458-05:00

Daphne had her final eye exam with the retinologist today, and her eyes are doing well without any laser procedures. She developed ROP at the NICU, and it progressed to stage 2. She was being examined weekly, and got super super close to getting laser surgery. If that had happened, her vision would have stopped developing and she may not have any peripheral vision. That is a small price to pay

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com0tag:blogger.com,1999:blog-4303600535099183001.post-37823989379201575152009-11-01T13:34:00.000-05:002009-11-01T13:46:40.984-05:00

Friday I went to work feeling fine, and somewhere mid-afternoon I was assaulted by a headache, muscle pain, congestion, just general misery, completely out of nowhere. By evening I couldn't stay awake or upright. Yesterday wasn't much better. We thought this would be a good time to transition Daphne out of our bedroom for the night. I wanted to wait until she was off oxygen at night, but we might

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-22729930045424270182009-10-29T14:56:00.000-04:002009-10-29T14:56:16.681-04:00

Guess who rolled from her side to her tummy, AND pulled her arm from under her body, AND lifted her head and chest????

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-42336706123276775462009-10-28T10:27:00.000-04:002009-10-28T10:27:19.654-04:00

Daphne's reflux is back with a vengeance. When she saw the pulmonologist last week, she told us to wean the oxygen, her Prevacid, and her diuretic. Guess what? Too much change! I had this constant battle at the NICU (aided by all the nurses) that Daphne doesn't do well with too much change at once. Happy to report she's doing fine without the oxygen during the day. Her color is great, she is

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com0tag:blogger.com,1999:blog-4303600535099183001.post-30013183771861199092009-10-24T18:58:00.000-04:002009-10-24T18:58:59.016-04:00

We got a special package in the mail with some presents homemade with love. Tricia, in WA, made this stunning quilt for Daphne. It is gorgeous AND happened to match her outfit. The best thing is Lucy also got a Big Sis pillow. We used the new digs for some tummy time. Not suprisingly, Daphne doesn't like tummy time. She puts up with it for a few minutes and then starts whining. I

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-26247584106611388202009-10-22T10:15:00.001-04:002009-10-22T10:26:07.441-04:00

Daphne visited her pulmonologist yesterday. She thought she was doing great and wants her off. the. oxygen. D is on a super low dose as it is, and most of the time she yanks the cannula off her nose and sucks on it. The Dr. suggests we leave it off as much as possible during the day, observing her sats on the pulse ox monitor. If they are consistently below 94, we can give her some O2. I know

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-80641519917326289162009-10-21T12:25:00.000-04:002009-10-21T12:33:37.701-04:00

The whole time we were at the NICU, one of the (many) things I looked forward to after discharge was that Daphne would get to have her real name on medical records, as opposed to Baby Girl Twin B. New parents would come in, see her ID card on her incubator, and inevitably ask about Twin A. People just assumed maybe she was already home, and upon hearing our answer, they felt horrible for asking.

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-30078966020037705922009-10-21T12:00:00.000-04:002009-10-21T12:18:40.454-04:00

We just finished another marathon of specialist visits. Yesterday we spend the entire day at the hospital, beginning with the endocrinologist, then the nephrologist, culminating with a sedated heart echo. Daphne had to have a completely empty stomach for the sedation, so they didn't want her to eat for 6 hours. Amazingly, she was happy and pleasant for almost the whole time. Her last bottle was

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com0tag:blogger.com,1999:blog-4303600535099183001.post-71805131322621794002009-10-17T10:27:00.000-04:002009-10-17T14:24:13.637-04:00

One of the first phone calls I made when Daphne came home from the NICU back in July was to Early Intervention. Her pediatrician urged us to start early. This is a State program for children 0-3 with special needs of any kind. The child needs to have a 30% deficit in any area to qualify for free services. Daphne was evaluated in early August by an OT and a PT. At the time she was about 2 months

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com0tag:blogger.com,1999:blog-4303600535099183001.post-24243061974364779342009-10-14T22:04:00.001-04:002009-10-14T22:08:41.669-04:00

In the past couple of days, we've noticed Daphne start reaching out to touch objects, but since it doesn't happen consistently, we wondered if it wasn't just a fluke. Well, tonight we have confirmation. She absolutely reached out to touch....Mommy's cup of hot chocolate. The chocolate-loving genes are strong. Sadly the camera wasn't handy, but here's a small grainy image from Daddy's iphone to

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com0tag:blogger.com,1999:blog-4303600535099183001.post-56683267801259182372009-10-09T22:55:00.001-04:002009-10-10T11:45:46.417-04:00

April 15, 2009September 29, 2009 (Piglet used to live in her incubator at the NICU)

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-40055891679967193632009-10-09T22:32:00.000-04:002009-10-09T22:44:03.398-04:00

It's been a week, and Daphne's cold is not better. In the last couple of days she developed a cough, which has gotten "chesty" and sad. Because of her BPD, we have to be extra careful with any respiratory infections, so today she was back at the pediatrician. Sure enough, the diagnosis was "there's junk in there." Also, one of her ears is very red. The next couple of days we continue doing

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-34445430836902234002009-10-08T17:04:00.000-04:002009-10-08T17:10:17.001-04:00

Here's a quick list of the medications we give Daphne every day. Picture a squirmy baby and lots of syringes with sticky medicine. We LOVE KidsRx, the pharmacy who prepares all her compouds. They are nice, efficient, fast, and make it all taste good to the discriminating baby. Here we go:Hydrochlorothiazide (a diuretic) - twice dailySildenafil (or Viagra, for the pulmonary hypertension) - every 8

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-68033935883020050612009-10-05T15:08:00.000-04:002009-10-05T23:47:45.129-04:00

The past couple of days have been hard. Lucy caught a cold after only two weeks of school, and though we tried to isolate Daphne, big sister was relentless. I am grateful that she is so loving with the baby, but though we denied all the "can I please touch her," "just a kiss on her head" requests, I know she was able to sneak some love. Daphne has been really stuffy since Thursday evening. So far

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-9963805519691284172009-09-29T11:10:00.001-04:002009-09-29T17:08:35.673-04:00

Now that our bellies are full after Yom Kipur, it feels like the new year is REALLY beginning. There is something about fasting that makes you reflect, even if it's just to avoid thinking about food. We weren't able to go to synagogue for Rosh Hashanah this year, because Daphne was in the hospital after heart surgery. So yesterday, while my stomach roared, I thought about the Torah portion that

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-48438716083762490002009-09-24T16:20:00.000-04:002009-09-24T16:24:19.643-04:00

Sorry, sorry I haven't posted pictures. I promise to post more when I get a minute. For now, here's Lucy holding Daphne. This is before the surgery, and Daphne is MUCH bigger now. Lucy can't wait till the booboo on Daphne's chest heals so she can squeeze her again.

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com1tag:blogger.com,1999:blog-4303600535099183001.post-60929161394960551312009-09-23T16:05:00.000-04:002009-09-23T16:40:22.338-04:00

In addition to the obvious grief, concern and anxiety, Daphne's premature birth and illness have introduced us to deep layers of bureaucracy. We have dealt with so many agencies, government and private, that I've had to develop a new organization system just for Daphne's paperwork. Actually, it seems the goal of certain programs is to overwhelm. We've learned a lot through this process, but I

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-75543244377823210722009-09-22T17:18:00.000-04:002009-09-22T17:40:31.252-04:00

Daphne had a day full of doctor's visits today - what's new? We saw the nephrologist and cardiologist. Her nephrologists will always have a very special place in our hearts. They were the ones who told us that her kidneys DID have a chance. That they HAD seen kids with kidneys that sick recover. The first month of her life, the first piece of information we wanted each morning was her creatinin

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2tag:blogger.com,1999:blog-4303600535099183001.post-9096296999678510532009-09-21T12:30:00.000-04:002009-09-21T12:59:00.176-04:00

After 6 months of anticipation, Daphne's open heart surgery is behind us. She is doing fantastic, but I wanted to explain exactly what was fixed.Daphne was born with a congenital heart defect (actually, two) - a large ventricular septal defect (VSD) and also an atrial septal defect (ASD). Her VSD was allowing oxygenated blood to shunt back to her lungs, which at first only caused a loud murmur,

Mel H.http://www.blogger.com/profile/11130471804941975786noreply@blogger.com2