| Week 41 | May 17, 2004 to May 23, 2004 |
| May 19 | Rachel had a bit of a rough night...the first in awhile. She woke up when her continous feed was about to start at 12:30AM...probably b/c it was hot & stuffy. It took her an hour and half to get back to sleep. She was up early...around 6AM...for a diaper change, then a BM half hour later. She was rather fussy and wouldn't let Daddy put her down. Mommy took over at some point and Rachel fell asleep in her arms. She didn't sleep for long though...fussy all morning...refused to let Mommy put her down until around 2PM when she finally fell into a deeper sleep. Mommy had no clue on what was bothering her. |
| May 18 | A typical Rachel day! No spit-up today. |
| May 17 | To Mommy's relief, Rachel's back to her normal routine. She slept a little bit later than usual, to 8AM...napped for 1/2 hour in the morning and 3 hours in the afternoon...ready to retire for the night at 10PM. She had one spit-up in the evening...don't know why...see what happens tomorrow. Rachel gets 18-19 oz/day with cereal (1tsp/4oz), 4mg Furosemide (Lasix)/twice daily, 20mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily Rachel's 9lb 2oz...2oz gain from 2 weeks ago |
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| Week 41 | May 10, 2004 to May 16, 2004 |
| May 16 | A big day for Rachel today...Mommy and Daddy took her to a barbacue at her future aunt's place in Brooklyn. The normal 2 hour ride took 3.5 hours with a couple of stops and lots of traffic...lot a people going places on a Sunday afternoon. Rachel was a darling during the ride...fussy a little for a nap, but settled down nicely and slept most of the way. Once there, it took Rachel awhile to adjust to the bright sunlight...she does not like the sun very much. She way okay during the stay with intermittent fussiness, esp when the sun was on her. Not too bad for her first party outside her home. The ride home was a different story. She spit up after her meds right before they left. She was fine for the first hour of the ride, but cried the remaining hour home...she was simply very tired but couldn't fall asleep in the car...poor baby! Once home, it took Rachel awhile to calm down, then she spit up again after her feed. She finally crashed after Mommy cleaned and changed her. Disruption to her routine is bad...hope she gets back on track tomorrow. |
| May 15 | Rachel's days are getting boring...and Mommy loves it! No spit up today. |
| May 14 | Another banner day for Rachel! She did, however, spit up after her last bolus feed :-(...probably b/c Mommy increased her feed to 95cc...back to 90 it is. |
| May 13 | A typical Rachel day...slept from 10PM to 8AM...napped for less than an hour at 11AM and 4 hours at 1PM...Mommy's loving this routine :-D. |
| May 12 | Another great night...slept from 10PM to 7AM...is the little missy settling into a routine?!...sleep from the last bolus feed (around 10-10:30PM) till 7ish...2 short naps during the day, one in the morning and one in the afternoon. Mommy is hopeful! Appointment with the pediatric surgeon today. Rachel was supposed to get a button for her G-tube, but there was too much granulation tissue. It started to bleed in the doctor's office. The surgeon treated the site with silver nitrate and decided to wait another four weeks for the button. Mommy had read on the trisomy list that steriod creams are great for granulation and mentioned it to the surgeon...he only smile and said there'll be alot of opinions on the topic. Mommy will have to mention it to the pediatrician and see what he thinks. For now, the granulation tissues diminished somewhat, but is not completely gone...maybe it takes a couple of day...wait and see. Rachel was rather cranky for the rest of day. She took a couple of naps, but had periods of fussiness during awake times. Her PT session was less than satisfactory. She started out great...held her head high for a couple of minutes in the belly position. She got upset during the sitting phase. After Mommy calmed her down, she was not interested in any more work. Oh well, Mommy will just have to work with her more. |
| May 11 | Rachel had an exceptinal night...at least Mommy and Daddy thought so. She slept from 10PM to 8AM :-) Appointment with the pediatric geneticist/bio-ethicist at NY Presbysterian today. Mommy and Daddy along with Uncle JF (thank you so much for coming down all the way from MA for this meeting) met with the doctor. They talked for a long time ~1.5 hours. The doctor was great...she wanted to make sure Mommy and Daddy understood the implications of heart surgery...reinforced things Mommy and Daddy are already aware of: (1) they are making a conscious decision to prolong Rachel's natural life. By fixing the VSD, not only does it take away a major life threatening disease, it also reduces the chances of getting pneumonia and other respiratory illnesses that can be fatal as well. (2) Rachel's development will be limited...the doctor said probably not much more than her current levels...Mommy and Daddy are hopeful for more, but are not holding there breaths. Are they prepared to care for a child that will grow in body...not normal growth by all means, but she certainly will not remain the size of an infant...but with the mental and motor capacity of an infant for 10,15,20 or even 30 years? (3) Even with heart surgery, Rachel is not likely to out survive Mommy and Daddy. Mommy and Daddy will inevitably lose her. When that happens the pain will be the same no matter how long she stayed. Mommy and Daddy will never be ready to let her go. By the end of the discussion, Mommy had the impression that although she may not agreed with surgery for Rachel, she'd help Mommy and Daddy if they are sure that is what they wish for Rachel. Mommy and Daddy has alot to think about: (1) Yes, it's great to increase Rachel's life, but by having heart surgery, Rachel's care will change to that of a child with severe disability. It makes no sense to have heart surgery and go back to comfort care. If any health issues arises in the future, she will have to be treated, no matter how painful the treatments are. There will be numerous specialist appointments and tests to monitor and screen for problems. Is this how Mommy and Daddy want Rachel to live her life? (2) How long can Mommy and Daddy care a severely retarded and disabled child without feeling she's become a burden? At the end...will they look back at this decision with regret? Will the stress of caring for Rachel over the years create resentment, unhappiness, and other negative emotions. (3) What's the point of prolonging Rachel's life? What does she gain from it? Certainly Mommy and Daddy will have the extra time with her, but does she benefit from the extra time? What if she out survives Mommy and Daddy? Who's going to care for her?...Mommy certainly don't want to inflict her on any relative...to institutionalize her, that's out of the question. Nobody can care for her the way Mommy and Daddy do...it's very important to Mommy Rachel does not out live them. There's probably no answer to many of these questions, but with that last point in mind, Mommy is leaning against surgery. Daddy, on the other hand, remains undecided. Decisions, decisions! Rachel had a fine day aside from the spit up at the doctor's office. She did not like the hour long car ride, either...the carseat makes her head very sweaty. She was very happy to get home. |
| May 10 | Rachel slept from 11:30PM to 4AM...woke up crying. Daddy got her, but she continued to scream...woke Mommy up, so Mommy took her. She was able to calm down in Mommy's arms...showing preference?! Rachel went back to sleep after a BM...up crying again at 8AM. This time Daddy figured it was her teeth. She settled down somewhat with the application of orajel. She calm down completely after Mommy changed the dressing on her G-tube site...it apparently was bothering her. Mommy called the surgeon concerning the problem...granulation with some drainage and redness. His secretary call back and said he will see Rachel on Wednesday (her scheduled appointment). Rachel took a couple of short naps (~2 hours) during the day, at 11 & 3. Mommy kind of forced her to take the second one so she'd be alert for PT. She started to wake when the therapist arrive. It was a very good session. Rachel did belly positions, sitting, rolling with no complaint. She even tried the belly position on the floor...didn't like it, but did not fuss too much. She was out for day during her last bolus feed, after her bath at 10PM. Rachel gets 18-19 oz/day with cereal (1tsp/4oz), 4mg Furosemide (Lasix)/twice daily, 20mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily |
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| Week 40 | May 4, 2004 to May 9, 2004 |
| May 9 | Happy Mother's Day! Mommy got two mug full of kisses from Rachel. The mugs had Rachel's pictures on them...they came out a little on the blue side, but were beautiful nonetheless. Some of Rachel's aunts and uncles came over and took Mommy out for lunch. Rachel did not give Mommy much trouble...it was a good outing for all. Rachel slept from 11:30PM to 5AM. She was yabbering in her crib for awhile...talking up a storm...making all sorts of happy noises. She was rotated almost 180 degrees from her sleeping position when Mommy checked up on her. Mommy left her there and Rachel continued her talking till 7AM. She fussed to held and fell asleep in Mommy's arms for a two hour nap. Rachel had a hard time sleeping while they were out...every little movement, jerking motion or even loud noise woke her up. She eventually fell into a deep sleep around 4PM. From then on nothing can wake her...she remain asleep till 9PM. After a bath and feed...she was off the dreamland at 11:30PM. Hopefully, it'll be a good night for the little piggie. NO spit up today! |
| May 8 | Rachel had a dandy night. She was asleep by 10:30PM...Mommy and Daddy did not hear her until 6AM. She stayed up until 2PM with a short nap (less than 30 minutes) at the cardioligist's around 11:30AM. She was very grumpy on the way home...cried all the way (30 minutes drive). She finally settled down after her feed at home and slept from 2-9PM. The cardiologist saw no change in Rachel condition again. Mommy noted Rachel's color has not be as rosy...dusty around the nose and mouth, but she was probably like that in her first few months, so the cardiologist don't think she's any worst. Mommy is not totally convinced...she brought up some concerns, they had a long discussion...he is still against surgery and all for comfort care...Mommy & Daddy respect that, but sometimes they just gotta wonder if his opinion would change if one of his own kid is under similar circumstances. Hopefully the meeting with bio-ethicist/genticist next week will give Mommy & Daddy more insight. Rachel had one spit today on 90cc formula/cereal mix...not bad...going to stay with this amount for a while. |
| May 7 | It was an okay night for Rachel. Daddy managed to keep her up till midnight...yeah for Daddy! She slept till 2AM...woke for a couple of hours...fell asleep shortly after her feed at 4AM...Daddy said she was up around 7AM. She was falling asleep around 10AM, but Mommy had to prepare to take her to the occupational therapist to modify her hand splint. She slept a little in the car, but woke b/c it got too hot in the carseat...Rachel does not like to be hot. It took a couple of hours for the occupational therapist to prefect the splint...Mommy didn't take any chances this time and brought Rachel feeding supplies...didn't need them, but better be safe. Rachel was a little agitated a first, but eventually settle down. She started to fuss near the end and cried all the way home...a 20 minute drive...too hot in the carseat. Rachel finally was able to take a much needed nap by 2PM...poor girl, all bleary eye. She slept till 8PM and was very happy for the rest of the evening. Mommy doubts her night time problems are feed related...resuming her continuous feeds tonite. Rachel only had one spit today...up her feed to 90cc with 10 cc pedialyte. |
| May 6 | Another bad night! Rachel napped from 11PM to 11:40PM...2AM to 2:40AM, then started to cry...a fussy I am not happy cry...Mommy lost her patience, lack of sleep does that to Mommy...good thing Daddy was there to take over. He stopped the feed and took Rachel for a walk around the house. Rachel settle down and fell asleep on top of him...Mommy found her there at 6AM, so she moved Rachel to snuggle rest. Rachel woke at 7AM...she wanted everyone to join her, which they did...no stopping the determined girl. She stayed up till noon, then slept the whole afternoon...till 8PM with a break a 3PM for food. Mommy failed to keep her awake. Rachel spit up 3 times today...Mommy's cutting her feed to 80cc with 20cc pedialyte...hoping to minimize the spit up. Mommy's also going to try bolus feeds at night since she's up anyway, hoping Rachel will think it's daytime ;-) and sleep more at night. |
| May 5 | Rachel fell asleep in the bouncer around 10:30PM...Mommy decided to leave her there for the night. She slept well...so Mommy thought...until 4ish. Mommy got up to change her diaper and in the process decided Rachel needed a BM...some bicycles helped to get it started...once started, it kept coming! Rachel was very happy afterwards...in the mood for play, but Mommy was not. She went back in the bouncer, but made too much noise for Mommy to sleep. Mommy tried various positions, the girl was just wide awake. By 6AM...Mommy thought Daddy had enough sleep, not knowing that he was up late working and went to bed at 2AM. A tired Daddy took over, Rachel remained awake till 10AM. She was tired for the rest of day. Mommy had to wake her for PT...not a very good session again. Rachel did not want to do any work today...no belly, no sitting, no rolling...just wanted to lie there with thumb in mouth. The therapist did some non strenuous work with her...mostly stretches and tracking. Hope it'll be better next week. Rachel slept some more after the therapist left. |
| May 4 | Rachel is 9 month old today! That's 3/4 of a year! Another strawbery shortcake...Daddy's favorite, but he can't have any b/c he's still on the first phase of the South Beach diet :-b It was a bad night though. The night started out okay...Mommy had Rachel in the snuggle rest...awake but very content with sucking her thumbs. She started to complain...loudly...at 2AM. Mommy tried some orajel...nope. She already had a BM at 1AM so that was not the problem, either. She continued to wail...a consistent heartwrenching cry...Mommy thought she was in great pain, but don't know where. Mommy gave her tylenol at 3AM hoping it'd help...codeine would be next. Rachel managed to settled down half hour after the tylenol...Mommy was so relieved...she fell asleep on top of Mommy. She didn't want to be moved...she'd start to wail if Mommy even attempted to move. Mommy eventually dozed off as well. Rachel slept like that until 5AM when Mommy woke and realized she had sweated a storm...her head was all wet. Mommy wiped it and put her down on the snuggle rest...she didn't seem to mind it. Mommy woke at 9AM from the sound of Rachel trying to spit up. She went back to sleep afterwards, but spit up again during her next feed. Mommy decided to give her system a break and fed her pedialyte on the next feed...then half formula and half pedialyte on the following feed...3/4 formula and 1/4 pedialyte for the last feed. Rachel tried to spit up a few of time when she was awake, but got very little out b/c there's nothing in her belly. Mommy's not sure if that's a good thing, but was definitely glad not to see more formula come out that way. Rachel slept alot during the day...up for a few hours at 4-6 and 8-10...another long night?! |