Rachel's Journal - Month 5

Week 22	December 29, 2003 to January 3, 2004
Jan 3	A quiet day at home with Mommy and Daddy. Rachel spit up after every feed but one today :-(...probably have to cut back on the feed.
Jan 2	Rachel slept from 11PM to 5AM, only stirred a bit for some food at 3AM. She was wide awake at 5AM, but Mommy didn't minded because she couldn't go back to sleep after feeding Rachel at 3AM anyway. That Mommy...there's no pleasing her. By 6:30AM, Rachel was getting fidgety. Mommy checked her tube, she had residuals but Mommy started the feed anyway. Rachel calmed down after 30cc and was fast asleep by the time the feed was finished. Mommy was finally able to sleep some more. Rachel woke Daddy for another feed at 9:30...Mommy had to help a bit for Rachel was a little fussy. She stayed awake for 3 hours afterwards. Mommy made the mistake of trying to bottle feed Rachel at 5PM...she seemed to be sucking a little before realizing what it was...then...oh torment...took her an hour to calm down. It was one tough feed...Mommy had to stop at every 15cc...Rachel refused to take the last 20cc. No more bottles for her. Rachel had to say goodbye to Grandma K and Cousin Bonnie. Grandma K will come back on Mon to stay with Rachel while Mommy and Daddy go to Grandma's funeral on Tues and Wed. Daddy's buddy will also be here so Grandma K will not be alone.
Jan 1	Happy New Year! Hope this year will be better than the last. Rachel stayed up for an hour after her early morning feed. Daddy was a bit late with her next feed...Rachel got hungry and was a bit fussy...Mommy got up and helped. Rachel stayed up for 3hrs after noon...ate...slept for 3.5hrs...ate...stayed awake for another 3hrs, giving Mommy tons of smiles...on video this time :-)...too bad her face was all taped up due to those darn rashes that wouldn't go away...Mommy got some nice smiles on camera yesterday while the NG-tube was out...no tape on those, just red cheeks due to the rashes...looks like Mommy may get a good night. Rachel only had one small bm by 11PM, Daddy gave her another .25tsp of olive oil. Rachel spit up once today.
Dec 31	Rachel slept fitfully during the night...kept Mommy up most of the night :-( She was fussy during the early morning feed...Mommy was very tired and needed Daddy's help at 5AM. Rachel did not let Daddy get anymore sleep...poor Daddy. Mommy and Daddy missed the opportunity for the NG-tube insertion...they were saying goodbye to the Hospice nurse (they've decide to following the Pediatrician's recommendation and save the Hospice days) when Rachel woke up hungry...Daddy tried a few times, but it was too late...Rachel's very sensitive about it now. After 2 hours of crying, Rachel finally tired out an fell asleep...Daddy quickly inserted the tube. Rachel had just one BM today, so she may still be somewhat constipated...see how tomorrow goes. Mommy started to show Grandma K (Mommy's Mom), who along with one of Rachel's cousin has been visiting since Xmas, how to feed and care for Rachel. Grandma K will be caring for Rachel when Mommy and Daddy says their final goodbyes to Grandma next week. Hope Rachel will behave and not give Grandma K a hard time.
Dec 30	Rachel finally had a BM at 2AM...Mommy and Daddy were relieved. Rachel had two more BM's later in the day...big smiles for Mommy and Daddy :-D...no olive oil today. Rachel was very tire and slept most of the day. She was awake for some PT, but a little agitated that she was not allowed to sleep...it was not a very good session. Rachel's 7lbs 3oz...gained 5oz gain from last week...hope it's not just backed up bm ;-)
Dec 29	Today Rachel's lunar 5 months. She was very good during the night. She did not have any bowel movement today, though she tried all day. By 10PM, Mommy and Daddy decided to give Rachel .25tsp of olive oil (instead of mineral oil). Rachel was tired from trying to push...the poor girl... and slept most of the day. She spit up some after one of her feeds, first one is almost a week...that's very good. Rachel's averaging 15-16oz/day, 30-60cc Pedialyte/day, 3mg Furosemide (Lasix)/twice daily, 15mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. Sadly, Grandma passed away shortly before dawn this morning...

Week 21	December 22, 2003 to December 28, 2003
Dec 28	Rachel was wide awake at 2AM, ready for her feed. She stayed up until 5AM...Mommy didn't mind it much because she was very calm. Rachel had visitors today...Uncles, Aunts, and Great Aunts came to see how she's doing. They had fun passing Rachel around. It was a nice visit. They must had tired Rachel out because she slept soundly for 4 hours after they left...maybe Rachel should receive more visitors ;-)...Mommy's hoping for a good quiet night.
Dec 27	Rachel started to get a little constipated again :-(...four days after her vaccinations...about the same time frame as two months ago (just hate those shots). Mommy and Daddy will keep a close eye on her. Hopefully, it will not take as long (almost a month) to get back to regular. The constipation kept Rachel fidgety all day. She finally settled down to a deep sleep around 8PM and did not even wake up when Mommy fed her at 10:30PM.
Dec 26	Daddy was nice enough to take care of Rachel to let Mommy get some rest :-* Rachel was fussy at feeding at 3AM and Mommy had to get up to help. After that, Rachel settled down nicely and Mommy got some very much needed sleep. Rachel spent a very quiet day at home with Mommy and Daddy. She loves her new swing very much.
Dec 25	Merry Christmas...it's finally here! Rachel must have been a very good girl :-)...she received lots of gifts...toys, clothes, formula, diapers, a swing and even a poem from Cousin Tami. Rachel was sleeping until the gift openings...very good timing. She stayed awake for a 3 hours as her uncles and aunts passed her around for pictures. The house was again filled with Aunts, Uncles and Cousins. It was a less than joyful celebration as Grandma was in everybody's minds...she's still in critical condition.
Dec 24	Rachel had her 4 months shots today...same as the 2 months. She was very tired after the shots...very fussy during the feeds and when awake. Mommy and Daddy gave her a dose of Tylenol at 7PM and it seemed to calm her. She'd still have crying spurts, but the Christmas tree lights worked wonders for that :-)
Dec 23	Rachel was up and fidgety between 2:30AM and 4AM...a little better than last night. The article on Hospice finally printed today...Rachel was on the front page of the local paper! The article was rather short, but the pictures were very nice...hope the photographer sends over some to Mommy and Daddy.
Dec 22	Rachel was up and fidgety between 2:30AM and 5AM. She gave Mommy a hard time during the entire day. Mommy was exhausted by the time Daddy got home and quickly passed her off. She had another big spit up before her bath, which calmed her down a bit. Between all the fussiness, Rachel managed to take a little over 17oz total. She has been averaging between 15 and 16. Rachel had a fair PT session today. She was cranky and would not stay in certain positions. Rachel's 6lbs 14oz...only 1oz gain from last week. Rachel's getting 70-75cc/3-4 hrs (Mommy sneaks in a few 80cc every now and then), 30-60cc Pedialyte/day, 3mg Furosemide (Lasix)/twice daily, 15mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed.

Week 20	December 15, 2003 to December 21, 2003
Dec 21	Rachel started to fidget during her late night feed...spit up quite a bit afterwards...continued to fidget until to 2AM. She continued to have a very fidgety day...fussy and took a long time for all her feeds...remained fidgety during waking times...fitful sleep. Mommy and Daddy were at a loss as to the cause of her discomfort :-( More bad news on Grandma...she contracted some sort of infection and is currently in ICU. Things are looking pretty bad...the family is hoping for a miracle.
Dec 20	Everybody slept good but Mommy with the overtired syndrome :-( She was ready and waiting for Rachel's feed at 4AM. Rachel cooperated and the feed went down very well while she was still sleeping. Mommy quickly fell asleep afterwards and was out to world until noon. Daddy had get up when Rachel started fussing at 5AM. She fussed til 9AM, not giving Daddy any more sleep time. She was quite good for the rest of the day.
Dec 19	Rachel had a good night sleeping in the bouncer. She stayed awake abit after her 4AM feed...fell asleep around 5:30AM. Daddy couldn't finish her morning feed because he had an early meeting at work so Mommy had to get up at 8AM to help :-( From then on Rachel was rather cranky for the rest of the day. She'd sleep two hours...awake for two hours (fussy)...sleep another two hours...and so on. She had a big spit up...first in a while...after her evening feed. She spent another night in the bouncer which has been moved on her crib. Hopefully, she will sleep good with all that awake time today.
Dec 18	Rachel had a bad night because Mommy and Daddy decided to experiment with letting her sleep in the car seat...to keep her upright and off the floor. She did not sleep comfortably all night...kept waking up and fidgeting...kept Mommy up as well. Rachel was not a happy camper in the morning probably because she did not sleep well. It took a long time for her to calm down and take her morning feed...then back to sleep in the snuggle rest (no more car seat). She stayed up for a couple of hours in the afternoon. She was very tire by 6PM and slept soundly...waking only for feeds...for the remainder of the day. Mommy was able to feed Rachel 80cc a couple of times today :-)
Dec 17	Rachel had another good night. Daddy left her in the bouncer after the 12AM feed. She was sleepy and calm for her feed at 4AM. Mommy laid her down in the snuggle nest, but she was not very comfortable...sounded a little congested to Mommy...she kept waking up every half hour or so. Finally, Mommy put her back in the bouncer at 7AM where she slept more comfortably...so Mommy can sleep too :-)...Daddy fed her and left for work while Rachel and Mommy snoozed the morning away. The afternoon was quiet...Mommy let Rachel sleep so she can be awake for her PT at 5PM. She had a great session. The therapist was very impressed with her head control. Rachel liked to stared at lights...focused at the Xmas tree all the time and fussed when the view was taking away...the therapist refocused her attention with a small flashlight (Mommy and Daddy couldn't find any small toys with lights)...Rachel tracked the flashligh from side to side very well...she need to work on the up and down part. Daddy was delayed at work unexpectedly...by the time he got home Rachel was fussing in hunger. She would not let him insert the NG-tube...very stressful. Daddy tried a few times without success...at one time the tube came out of her other nostril...that's a first! She finally tired out after over an hour of crying and settled down enough for the tube to go in. She was fed and slept soundly after that...in the bouncer.
Dec 16	Rachel was great at night...she woke at 3AM for feed...fell asleep in the bouncer during the feed (Mommy always like that :-)...Mommy left her there for the rest of the night. She was great with Daddy during her morning feeds at 7 & 11 (Daddy's working from home in the morning so everybody can go see the Cardiologist in the afternoon). The appointment with the Cardiologist went well...not much change from last month. Rachel gained 5oz, not enough to warrant any dosage increase of her medications. The Cardiologist measured Rachel at 20.75 inches. Followup in 6 weeks. Rachel's 6lbs 13oz...only 1oz gain from last week.
Dec 15	It was a good night until 8AM. Rachel ate at 12AM...Mommy put her down in her snuggle at 1AM after a small spit (trying to push gas). She woke at 4AM for another smooth feed and fell asleep in the bouncer...Mommy made the mistake of moving her to the snuggle nest...She woke up 15 minutes later and start fussing...Mommy moved her back to the bouncer for the rest of the night. She was very fussy at 8AM and would not eat...maybe gas. Mommy got up to help Daddy so he can go to work. Rachel managed to take 55cc...calmed down a bit after taking mylicon...tired out at 9:30AM. She seemed very tired so Mommy let her sleep all afternoon. Rachel got up at 6PM and gave Mommy lots of smiles before getting fidgety again...mylicon calmed her enough for her next feed. She stayed up until 8:30PM...Mommy and Daddy woke her while inserting the NG-tube at 10PM. She was fidgety so Mommy gave her more mylicon. She settled down and gave Daddy no problem at the 11PM feed. Rachel's getting 65-70cc/3-4 hrs, 30-60cc Pedialyte/day, 3mg Furosemide (Lasix)/twice daily, 15mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed.

Week 19	December 8, 2003 to December 14, 2003
Dec 14	Rachel had a very good day. She was awake after her feed at 4AM until 5:30AM. She stayed up for 3 hours after her 12PM feed...Mommy and Daddy had some fun taking pictures with her in the snow :-) She stayed up for another 2.5 hours after the 8PM feed. Hopefully it will be a nice easy night for Mommy ;-) Rachel cut back a bit eating wise today...taking about 15oz total. The article on Hospice care did not appear on the paper today...wonder why?!
Dec 13	Rachel was a bit fidgety at the 12AM feed...it took Daddy awhile to calm her...Daddy says she likes the Eagles :-) She fell asleep around 1:30AM and woke at 4AM for her next meal. Mommy had no problem feeding her, but Rachel did not want sleep afterwards. She stayed up to 6AM and finally drifted off after Mommy placed her in the bouncer. Rachel's aunt and uncle came to see her...Rachel went out Christmas shopping with them. She was a little fussy on the car ride home, otherwise it was an excellent outing. Rachel spit up quite a bit for the first time in days after her feed in the evening...perhaps Mommy and Daddy overfed the munchkin...she's been taking ~75cc all day for over 17oz total...a brand new record!
Dec 12	Mommy was still up when Daddy got home at 1AM...time for Rachel's feed. Daddy was really tire, so Mommy stayed up with Rachel. She fell asleep around 2:30AM...Mommy was a bit overtire and couldn't sleep for awhile...she finally drifted off sometime after 4AM, but Rachel woke for a feed at 5AM. Luckily Rachel was not fussy and went back to sleep right after her feed. Mommy was able to sleep til noon because Daddy took over Rachel's next couple of feeds as he was working from home. The afternoon was quiet...Rachel was up for a couple of hours as Mommy and Daddy took lots of pictures her without the tube. Rachel was a little piggy today taking at little over 16oz of formula...that's a new record.
Dec 11	Rachel was fussy at the midnight, so Mommy got up...she had gone to bed at 10PM...and helped Daddy. Mommy stayed up with Rachel while Daddy went to bed so he can go to work in the morning. Rachel was up until 1AM...by 2AM, she was fidgeting in her snuggle nest...Mommy moved her to the bouncer, where she slept but needed to be bounce now and then. Rachel was wide awake after her 3AM feed...that's okay. Mommy had a couple of hours of sleep before...by 5AM, Mommy was getting a bit tire...Rachel finally fell asleep in the bouncer around 5:30AM and Mommy soon followed...on the floor next to her. Daddy fed her at 8AM...Mommy climbed in her bed and slept some more. Mommy overslept and missed giving Rachel her meds by half hour. Rachel was alert for a couple of hours in the afternoon. Mommy didn't get to sleep early because Daddy went to visit Grandma after work. Grandma has not improve much. Daddy thinks she doesn't recognize him. She responds to people who attend her daily, like the hospital staff and Grandpa. The doctors want to release her from the hospital soon...will have to get alternate care for her.
Dec 10	Rachel was still up at 1:30AM, so Mommy got up and tookover from Daddy. She finally fell asleep in the bouncer at 2:30AM...too close to feeding for Mommy to sleep again. Rachel went right to sleep after Mommy fed her at 3:30AM...she made some movements and noises that calmed when patted. Mommy drifted of around 4:30AM...next thing she knew Rachel was crying in Daddy's arms at 8AM and did not allow Daddy to feed her. Mommy had to get up and help. She finally calmed down and finished her feed at 9AM...fell asleep shortly after on Mommy (wouldn't let Mommy put her down). She was fine for the rest of day. Still getting some small spit ups...always preceded or followed by releasing gas or bowel movement. She was alert for her PT today, but a bit fussy. She refused to do any hard work...a lazy bone like her Daddy :-b
Dec 9	Rachel kept Mommy up only until 4AM...a little better...sigh! Mommy needs a different tactic...like sleeping earlier...double sigh...if only she can. It was a carbon copy of last night until 4AM, when Rachel fell asleep in her snuggle net :-)...guess keeping her awake helped. This time Mommy was prepared and camped out with Rachel, who's in the bouncer on the floor...Mommy still had to be awake as Rachel needed constant bouncing, but at least warm. Rachel slept most of the day as usual. She was awake between 5:30PM and 8:00PM. Mommy went to bed at 10:30PM just in case Rachel needs bouncing later. Mommy and Rachel had go rescue in the evening Daddy because his car ran out of gas a couple of miles from home :-O It's the first time Mommy had Rachel in the car by herself...not bad when she's not fussy. Rachel's 6lbs 12oz...another 2oz gain from last week.
Dec 8	Rachel did it again...she kept Mommy up until 5AM. She was a bit fidgety at the 12AM feed, but managed to finish it and went to sleep with no problem. She started to fuss around 1AM and would not let Mommy put her down again. Bouncing was the only way to calm her, either in Mommy's arms or in the bouncer. She finally fell asleep in the bouncer at 2:30AM, but stirred again at 3AM...before Mommy fell asleep...so Mommy got up and fed her. She was wide awake after the feed and wanted to be bounced. Mommy was exhausted by then and did not want to hold Rachel or leave her in the bouncer as the floor was quite cold...Mommy will have to rollout her sleeping bag and camp out with Rachel. Rachel was not happy about being left in the snuggle nest and woke up Daddy to take over. Daddy put her in the bouncer and eventually she fell asleep in it until her next feed. She was fine for the rest of day...sleeping most of it. She was still a bit fidgety during her feeds and had a couple of minor spit ups today. Mommy managed to keep Rachel up between 7:30PM and 11:30PM, hoping for a decent night sleep for herself ;-) Grandma had surgery for a G-tube today and it went well. She has been a little more responsive and even acknowledged her doctor. Hopefully, she can try oral feeding and talking without the annoying NG-tube. Rachel's getting 60-70cc/3-4 hrs, 30-60cc Pedialyte/day, 3mg Furosemide (Lasix)/twice daily, 15mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed.

Week 18	December 4, 2003 to December 7, 2003
Dec 7	Rachel continued to be very fidgety. She fell asleep after her feed at 12:30AM, but was very restless...moving and making sounds of discomfort until Mommy fed her at 3:30AM. She was completely calm for the feed, but became very fidgety afterwards. Mommy could not make her comfortable. Daddy took over from Mommy at 5AM...Mommy had not yet slept all night and was exhausted. It took a while for Rachel to calm down...she finally tired out at 7AM. Everybody, Mommy, Daddy and Rachel were too tire to get up for feeding at 8AM. Mommy finally got up to at 10AM to feed Rachel along with giving her meds. Rachel did not take her feed well...very fidgety...and took only 55cc. She stay fidgety throughout the day...the spit ups also continued...was she trying the tell Mommy and Daddy something? Hope for a better tomorrow.
Dec 6	Rachel's discomforts returned...not as bad but still very fidgety during/after feeds. She also continued to have small spit ups after her some of her feeds. Let it snow...let it snow...let it snow. Big snow storm in the area today...Rachel's first snow...snowed all day and all night.
Dec 5	Rachel was much better today...pretty much back to her old self :-) She was a bit fidgety at the 12AM feed, but kept Mommy and Daddy only up until 2AM. She woke Mommy up at 4AM for the next feed...she took it with no fuss...promptly went back to sleep after the feed. She was up next at 8AM with Daddy...it must have went smoothly as there was no need to wake up Mommy :-D Rachel took her feeds for the rest of the day without any issue. She did spat up small amounts after a couple of feedings, nothing too alarming. Perhaps, reducing the formula (60-65/3-4 hours) intake helped. She also slept pretty good all day. Whatever had bothered her for the last few days seemed to be gone. Mommy is so glad the sweet little munchkin is not uncomfortable anymore. :-D A couple of nice gentlemen from a local newspaper came to interview Mommy and Daddy about Rachel for an article they were working on that features Hospice care. Rachel was on her best behavior for these people...no fuss...took her feed well...let them take lots of pictures of her. They stayed for about 2 hours, hope they will write a good story. The article will appear on Dec. 14. Mommy and Daddy will be sure to get the newspaper on that day.
Dec 4	Happy Birthday to Rachel...four months! Mommy and Daddy are extremely pleased the munchkin is still with them. They hope for many more...they are soooo...greedy ;-) Rachel was still very uncomfortable when awake. She'd be very stiff and cried most of her waking moments. She could be having belly/intestinal problems and mylicon does not seem to help...Mommy and Daddy were very worry. Daddy fed Rachel at 12:30AM with Mommy's help. It's much easier to feed her with two people, one person holds the syringe while the other bounces and comforts her. She kept them both up until 2:30AM. She did not stir (at least nobody heard her) until 6AM. Daddy got up to feed her so Mommy can get some more sleep, but Mommy had to get up anyway because Rachel was very fussy. Rachel and Mommy went back to sleep at 8:30AM while Daddy went to work. They both slept fitfully til 2PM with a feeding at 10:30AM. Rachel took her feed at 2PM with no problem, but spit up quit a bit half an hour later while the Hospice nurse was visiting. Rachel continued to be fidgety for the rest of the afternoon. She finally tired out after her 6PM feed. She does not sleep very well nowadays...she'd stiffen up and give a cry every once in a while and then go back to sleep. It has been quite stressful for Mommy and Daddy. Rachel's rash seemed to be flaring up again. There's one under her chin and one on the corner of her right eye, so it doesn't seem to be tape related. Mommy continued to apply the creams to the affected areas.