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| Week 44 | May 31, 2004 to June 3, 2004 |
| Jun 3 | Rachel slept from 11PM to 5AM. It took her a couple of hours to go back to sleep. She didn't sleep long and was up with Daddy at 8AM. Rachel had a good day...very content after her morning nap. Mommy put her in the therapy chair for an hour...she went thru Baby Bach and Baby Neptune with no fuss...Mommy's not exactly sure she was actually watching the show, but it's good to think she is ;-)...wait till the therapist of hears of it. She took another nap in the afternoon and was out for the night during the 10PM feed. |
| Jun 2 | Rachel slept well during the night...actually Mommy heard some noises from Rachel in the middle of the night, but not loud enough to get up for. Rachel had another quiet day at home. Physical therapy was rescheduled for Friday so Rachel can relax today :-). She's starting to get use to her therapy chair...sat there thru the episode of Baby Beethoven. Mommy started to give her some fruit (1/2 tbs at each meal) with her formula...banana shake...yummy. Mommy's giving her beechnut first advantage banana supreme...one of the moms on the trisomy listserv tipped Mommy on how this brand of baby food has more calories and fat contents than other brands. Hopefully Rachel will gain some weight as a result...only time can tell. |
| Jun 1 | All the slumber during day must have been the reason Rachel was up late. Mommy stayed up with for a bit, but as she was calm, Mommy put her down around 1:30AM...still wide awake. Mommy heard Rachel next at 3AM...nobody knows if she slept all at in between...Mommy picked her up, a few pats on the back, put her back down and she drifted off to sleep. Rachel enjoyed a very quiet day home with Mommy. Rachel's 9lb 1oz...gained 1oz from last week |
| May 31 | It had been a very long day and Rachel was very tire when she got back to the hotel. It wasn't long before she retired for the night. It seemed to be a new pattern for Rachel wake up for a couple for hours in the middle of the night...she was calm in the crib for the first hours rotating her self...she needed to be held for the second hour and fell asleep in Mommy's arms. Rachel was wide eye and alert in the morning. She got to spend a bit of time with the aunts and uncles who were also staying at the hotel. She went to visit some friends of Mommy's who lived on Long Island...Mommy used to work with them...in the afternoon. Rachel was an angel throughout the vist...slept the whole 3 hours. She was still tire for some reason and slept most of the way home, too. Mommy was just so very proud of the little piggie. Rachel gets 18-19 oz/day with cereal , 4mg Furosemide (Lasix)/twice daily, 20mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily |
| Week 43 | May 24, 2004 to May 30, 2004 |
| May 30 | Rachel woke up again in the middle of the night for an hour or so. Consequently Mommy and Daddy got a late start for the day. Today's the day of UncleJH's wedding...a lovely clear sunny day (just like Rachel's name :-) ). Rachel was incredible good to Mommy and Daddy, she fell asleep during the 2 hour ride to Long Island. She was still sleeping when they arrived at hotel...it was already later than they had anticipated. Rachel woke up as they arrived at the marina to board the bus...hey, it was her first bus ride!...that took everybody to the lighthouse. The beautiful ceremony took place outside the lighthouse...UncleJH & AuntSY had a special dedication to Grandma, who passed away recently, that was very touching. Rachel was a bit fussy when she arrived at the lighthouse...Mommy changed her diaper, but she remained unhappy. Just before the ceremony Mommy decided to start Rachel's feed early...that did the trick! Rachel fell asleep as the ceremony started, progressed, and ended. She continued to sleep as everyone walked a short distance to board a boat for the reception. She woke up just in time for the family introductions :-) The loud music bothered her just a bit...good thing the boat had two levels and Rachel was able to stay away from the noise most of the time. All in all Rachel's first wedding went very well...she met most of her extended family for the first time...she was of course very happy for the new couple and wished them endless happiness "forever and always". |
| May 29 | Rachel was up and very alert at midnight...so Daddy reported. Daddy stayed up till 1:30PM and finally put her in the crib, still awake but calm. Mommy heard her at 3AM...changed her...put on some soothing sound, but she wanted to be held...Mommy took her out and held her for a couple of hours before Rachel finally closed her eyes and went to sleep. She slept in a little longer...till 9AM. She had a small spit up after the morning feed...Daddy thought he gave her too much water. Mommy gave her a sponge bath and she was content for the morning under the gymini. She dozed off by herself around noon. Rachel had a nice long nap and woke up happy at 5PM. |
| May 28 | Rachel was up with a loud cry at around 4AM. Daddy got her out of the crib and place her next to him...he was too tired to hold her. Rachel continued to complain so Mommy got her. She calmed down in Mommy's arms, but wouldn't let Mommy put her down. She was wide awake and wanted to place...Mommy had her eye's half closed and was in no condition to humor the little muchkin. She must had dozed off some time between 5AM to 6AM...Mommy put her down at 6AM. Rachel was still deeply asleep by the time the speech therapist was her at 8:30AM. Mommy woke her, but she was not too thrill...wouldn't let the therapist do anything with her. After the therapist left, Rachel continued to fuss until she finally fell asleep at 11AM. She was up at 2PM still not in a good mood...another nap at 5PM...up at 7PM in a much better mood. Mommy was able to left Rachel in the bouncer while she make dinner. Rachel's UncleJF, AuntSW, and CousinM stopped by enroute to Brooklyn. They brought CousinM's gymini for Rachel. Rachel enjoyed the gymini while everyone had dinner. She liked the mirror and even batted on the hanging toys. For some reason Rachel was very tired...she feel asleep by 10PM during her last bolus feed. Mommy did not have the heart to wake her for a bath. Rachel had a small spit up today. BM back to normal. |
| May 27 | Rachel had an uneventful night. Appointment with the pediatrician in the morning today. Rachel was very good in his office...even had a BM there (yeah!)...one shot, hepB that made her cried a bit, but no big deal. The doctor recommended adding fruits and veggies to Rachel diet...one tbs with every feed...milkshakes for the piggie! Mommy and Daddy saw the report from the bio-ethicist and was rathered ticked on her conclusion that she thought Mommy and Daddy has not "come to terms with Rachel's diagnosis and prognosis" and needed counseling! Where that come from???!!! Neither Mommy nor Daddy recalled any recommendation to counseling. How does one 'come to terms' with this diagnosis? Is it better to have left her in the hospital or institution to die so Mommy & Daddy may continue on with their lives...does that show better coming to terms with the diagnosis? No amount a counseling would induce Mommy or Daddy to do that...not in a million years! The pediatrician thought the report meant that if Mommy and Daddy were to proceed with heart surgery, there'd be numerous reviews and hurdles. It's amazing how differently she had lead Mommy and Daddy to believed while they were in her office. Suppose she never actually said she'd help them, just merely to gather the information from the cardiologist and go on from there...which could go either way. Rachel was tired from the visit with the doctor and went right to sleep after getting home. She was up for the next feed, very alert and happy, so Mommy though it'd be a good time to bring her in to Mommy's old work place and show her off. It took awhile to get there b/c of some construction on the road...Rachel was unhappily hot in her carseat...once there Rachel was very well behaved...everyone thought she was just too CUTE...she was studying all the new faces, loving the attention, though not showing much emotion :-b. Mommy was so proud that she didn't fuss for the whole hour while Mommy said hello to people. It was a very nice outing for the little piggie :-* |
| May 26 | Rachel had a decent night. She had a 3 hour nap in the morning till afternoon. Fell asleep around 4PM and was still sleeping when the physical therapist arrived. Mommy woke her and she let the therapist worked for about half hour before complaining. That was it for the day, she didn't want anymore work after that. She took another nap after the therapist left. No BM today...Daddy gave her rector temp around midnight. |
| May 25 | Rachel was cranky at night...Mommy tried mylicon without success. By 2AM, she was shrieking so Mommy gave her some Tylenol. Daddy hardly slept due to the noise...he got up and took over at 2:30AM. Either Rachel wanted Daddy or the Tylenol kicked in, she quieted down nicely in Daddy's arms. Daddy was able to put her down around 3AM. Mommy still thought Rachel was constipated...she gets worry when Rachel does not have a BM in 24 hours. By morning Rachel was fussy again...Mommy tried belly messages and bicycles with no success...finally, the rectal temp. Rachel finally settled down for a nap after her morning feed at 10AM...Mommy dozed off with her. She finally had a BM in the afternoon...then another smaller one a couple of hours later...Mommy was relieved. Rachel was in a good mood after that. She had a short nap in the evening and was out for the night at 11PM...hopefully back to her good routine :-) A couple of small spit ups today...the powder must be hard to get out! |
| May 24 | Rachel stayed up till 1:30AM...Mommy put her down at 2AM. She was up for an hour at 8AM, then slept for 3 hours. Mommy messed up her next nap time and Rachel didn't fall asleep until 4:30PM...right before the physical therapist arrived. Mommy had to send the therapist away :-( b/c Rachel would have been cranky if she's woken up...so sorry to have the therapist come for no reason! Rachel had a couple spit ups today. Mommy thought she was trying for a BM, but nothing came. Perhaps the powder was working it's way out. 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 0oz...lossed 2oz :-( from last week |
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| Week 42 | May 17, 2004 to May 23, 2004 |
| May 23 | Rachel stayed up till well past 2AM...Mommy had crashed around 12:30AM, so Daddy stayed up. She slept till 10AM...woke for diaper change and meds around 8AM...woke for feed and then back to sleep at 11PM. The activities of the previous day must caught up. She slept till Mommy and Daddy put her in the carseat to go out for some weekly shopping at 2PM. She was pretty good even though it was hot and sunny again...at least she was in the car. She got tired and fell asleep in one of stores around 5PM...slept all the home and more till 8PM. Another spit up today...maybe b/c Mommy had been experimenting with Rachel's tolerance to powder nutramigen for the past couple of days. It'd be easier to travel with powder...no need to bring a refridgerator. Doesn't look too bad...just couple of spit ups...should be a go to use for next week. Right now, back to the ready feed stuff. Rachel splashed water with her right hand in her bath today! Another tiny accomplishment that made Mommy and Daddy extremely happy :-D Rachel enjoyed it as well. |
| May 22 | Rachel was good as usualy at night. Mommy and Daddy decided to take Rachel for a shopping excursion to Woodbury Common, an outlet center (like a huge strip mall...with over 200 stores), shoppers heaven...about an hour away...to see how Rachel can take being outdoors for a long period of time...next week's UncleJH's wedding...it's an outdoor affair. AuntK and UncleJ met them at the outlet. Rachel was pretty fussy almost the whole time there...the sun and heat bothered her alot. She could not get in a good long nap. She did managed several short ones...no longer than 1/2 hour each...she'd fall asleep in one store, awake up in another and would not go back to sleep...too much stimulation perhaps. Mommy finally was able to shop in peace when Rachel fell asleep during her 6PM feed...she slept for 1.5hrs...woke up when Mommy put her in the carseat. Rachel got a 3 outfits...one from AuntK and UncleJ...Mommy pick out a couple for her...clothes is one thing she does not lack :-) Sometime in the afternoon, everybody was a bit tired and decided to stop in the food court for a snack. The information booth was in the middle of the food court. During this time, Rachel was a bit cranky...she wasn't wet b/c Daddy had just changed her...it wasn't time for feed either. Mommy and Daddy did what they normally do to calm Rachel...bounced her. After everybody finished their snack and were ready to go, AuntK went off to get soda refill while everyone stood waiting for her a little bit off from the information booth. Mommy had Rachel in the Bjorn and was still bouncing her. Suddenly she was addressed by a lady that sat behind the information booth. She had walked over to tell Mommy not to SHAKE Rachel...shake???!!! Mommy and Daddy were just too stunned to respond...when did they EVER shake their little girl? She continued on that she had been watching from the booth for a while adding that shaking can cause brain damage. Finally she said to ask the doctor and walked away. Mommy and Daddy looked at each other...speechless. They decided this lady must have been whacked or something...the velocity in which they bounce Rachel was nowhere near shaking...how could anybody misinterpret it?...then have the nerve to come up and give unsolicited advice like that...it's just too much! It wasn't the first time Mommy had gotten 'advice' from a complete stanger either...how the heck can these people go around telling Mommy how to handle Rachel without knowing her condition is beyond Mommy. Mommy had to come up with some clever responds to these people...it's sure to come up again and again. It was a very long day for the little piggie...she did not get home till 10PM. She started to fall asleep during the feed, but woke up and spit up (she had spit up once in the morning as well) when Mommy tried to put her down at 11PM. She was wide awake afterwards! |
| May 21 | With the extra nap, Rachel stay up till midnight. Speech therapy bright and early in the morning at 8AM...Rachel was already, but the therapist was late. Rachel was alert and very playful during the session. The therapist was amazed how Rachel always shows new developments each time she saw Rachel. They worked on some oral stimulation...gum massages with finger, then went on to brushing the tougue with a nuk brush, and finally the pacifier. Rachel still rejects the pacifier...her tougue doesn't have enough contour to accept it...needs more work. It's a very slow process and Mommy is not at all in a rush. It'll be great if Rachel learns to eat by mouth, but it's not a disaster if she doesn't. The rest of the day was uneventful...3 naps...an half hour walk...some play time. |
| May 20 | Rachel stayed up a bit later than usual (~1:30AM) b/c of the extra nap. She had 3 naps again today...new routine for her? While awake...she was in her new chair a couple of time watching Baby Einstein and Baby Genius for a few minutes each. Mommy also took her out for a walk with her new umbrella...no it wasn't raining; the umbrella was for the sun as Rachel's eyes are very sensitive to bright lights. Rachel loved the excercise; she was extremely happy afterwards. Daddy noticed that Rachel's right arm was more active than usual, perhaps starting to reach! |
| 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. Rachel was like a rag doll for her PT...no reaction from her no matter what position she was in. The therapist brought over a chair for Rachel. It supports her in a more upright position to help her sitting. The therapist hoped it'll also help eliminate her tendency to arch her back...to stop trying to arch for everything and use her other muscles. Rachel can tolerate the seat about 10-20 minutes at a time. Therapy must have tired Rachel out as she wanted to sleep afterwards. Mommy had no choice but to comply...she slept till Daddy came home around 8PM. |
| 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. No PT today, the therapist went away for the weekend. 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?! |