| Week 27 | February 2, 2004 to February 3, 2004 |
| Feb 3 | It was a horrid night for Rachel. She'd settled down for a few minutes...woke up from some discomfort...fussed for a while...settled down...fussed...all night. Mommy checked her temperature at 2AM. It was 100.5, so Mommy gave her some tylenol. It didn't seem to help. Her temp dropped a little to 99.6 by morning, still a bit high. She was still very cranky. With the surgery coming up on in a couple of days, Mommy and Daddy wanted to make sure Rachel's not sick, so they took her in to see to Pediatrician. Rachel was sick...rectal temp at 101.5...some kind of bronchial infection or maybe just congestion build up :-( The good doctor ordered a nebulizer for Rachel...administered the first dose of medicine at his office...also some antibiotics...see her in a couple of days. Rachel got real comfortable during the car ride home and breathed alot easier. She was fast asleep when she got home. She slept all afternoon and all evening with an hour or two of fussy waketime. |
| Feb 2 | Rachel fell asleep at about 1:30AM...Mommy put her down at 2AM. She woke a couple of times before her feed at 5AM...Mommy rolled over, turned her and she was fine. She was wide awake after the 5AM feed. She got restless after staying quietly in the snuggle rest for awhile. Mommy held her for a bit and at 6:30ish placed her in the bouncer. A few bounces and Mommy was asleep :-)...as for Rachel, Daddy found her asleep a 7:30AM. She slept till noon. She fussed for about an hour before falling asleep again at 3PM. She woke at 5PM...took a little nap at 6PM...stayed up a couple hours and fell asleep at 9PM...woke at 11PM...fussed for an hour before going back to sleep. No major spit up today...hurray! Only a couple episodes of gag and very small spit ups. The long awaited gastrostomy (g-tube) has been scheduled for Thu Feb 5 at 7:30AM. The surgery will last about 45 minutes. Rachel's expected to stay in the PICU for a night...number of days stay at the hospital will depend on her progress Rachel's still 7lb 15oz...no gain from last week...probably due to all the spit ups Rachel gets 18oz/day, 30-60cc Pedialyte/day, 3mg Furosemide (Lasix)/twice daily, 15mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. |
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| Week 26 | January 26, 2004 to February 1, 2004 |
| Feb 1 | Rachel slept pretty good during the night...woke Mommy at 4AM and Daddy at 8AM for feeds. She stayed up from 8AM to 11AM then slept the rest of day...until 10PM with only about an hour of wake time at 6PM. She started the watch the Superbowl...not much happening in the first 30 minutes, so she decided to sleep at 7PM and missed all the action. Rachel's spit ups mirrored yesterday...a massive one in the morning and several small ones during the day. No prune juice...a dose of olive oil in the afternoon. |
| Jan 31 | Rachel was up until 2AM...pretty much slept till noon. She would have slept more, but Mommy and Daddy kept bothering her with feeds, bath, and tube insertion. She was finally allow to sleep in peace after her 4PM feed and slept for 4 hours. She was up until 11PM...with smiles for everyone. Rachel had a big spit up (~1oz) after the morning feed and several other minor ones. There were a couple of feeds without spitups. Another theory for the more frequent spitups is the result of prune juice...more urges to poop causing more spit up episodes. Stopped the prune juice...use olive oil instead. |
| Jan 30 | Rachel stayed up for the service tech to show up...6.5 hours after the service call...at almost 1AM! Good thing for space heaters. It took him only 15 minutes to fix the problem. Rachel was still up 3AM...Mommy got too tire...placed her in the bouncer where she stayed quiet...she was still awake when Mommy nodded off. She woke Mommy at 4AM for some food...spit up half hour later and finally retired for the night. She spit up again at the morning feed with Daddy. Definitely too much spit up...cutting back on the feeds. She slept all morning after the almost all nighter. Rachel was up between 1PM and 6PM...a long time for her. She had one good feed with no spit ups and another with a major spit following by a minor one about an hour later while the speech therapist was here. Not much doing with the speech therapist...Rachel was not happy with anything in her mouth...the therapist had no other idea...just encouraged Mommy to keep on trying to introduce things in her mouth very slowly. Rachel fell asleep at 6PM...woke for a minute here and there, but pretty much slept for the rest the evening. Mommy received news of Baby Ryan's (Rachel's T18 friend) passing today...he was going to one year old tomorrow...a very, very, very....sad day. |
| Jan 29 | Rachel slept fitfully...slept a few minutes...wake for a couple of minutes...slept a few minutes...Mommy had no idea what was bothering her. Eventually, she settled down at about 1:30AM. She was hungry at 3AM...got fed in a semi-sleeping state. At 6AM, she woke up for a diaper change and stayed awake...Mommy was in no condition to stay up with her, so Daddy got up. Daddy fed her at 7AM...she must have fallen asleep sometime between then and before Daddy went work. She was still sleeping when Mommy got up at 11AM to give her next feed and meds. She woke up during the feed and was a bit uncooperative...eventually settled down and fell asleep again. The next feed was even worst...she only took 2oz and spit up some. Another tough feed at 7PM...she spit up twice before the feed was over. Rachel stayed up till 10PM...nap for an hour...good thing b/c Daddy had to put in the NG-tube...woke for feed at 11PM. Mommy noticed the furnace broke :-( at around 6PM and called for service. Rachel and Mommy kept each other warm in the bjorn before the service person show up. |
| Jan 28 | Rachel's 6 month old on the lunar calendar :-). Rachel stayed up a bit after the midnight feed...till about 1:30AM. She woke at 5AM for more food and decided it was playtime...not so for Mommy who only wanted to get more sleep...but of course Rachel always wins at the end...wasn't exactly playtime, but she kept Mommy from going back to bed. By 6:30AM, Mommy was ready the drop...luckily Daddy heard Rachel's cries and got up to take over. The little munchkin soon fell asleep. Another foot of snow fell overnight, so Daddy had to go and shovel...ok, use the snow thrower...to clear the driveway. Then off to work he went. Rachel continued to sleep till 1PM. She took naps between 3PM and 4PM...7PM and 9PM...turned in for the night at 11PM. Rachel had a couple of BM today along with many spitup episodes. No olive oil today as things are softening up. |
| Jan 27 | Rachel had a decent night. She woke at 1AM (small spitup) for diaper change, again at 5AM for food. She was up at bright and early at 7AM for a couple of hours...fell asleep after her feed. She was up again from noon to 2PM...slept till 5PM...up until 10PM. It was not a bad day for Rachel...except for the constipation. Started to add 1/4oz of prune juice to 1oz of pedialyte twice a day. Another dose of olive oil at night. Hopefully things will be better by tomorrow. Rachel had PT today...well only for a half hour. She spit up on the therapist and was too fussy to keep going. She did well before the spit up...tracking much better. Rachel weighed 7lbs 15oz...almost 8lbs!...gained 6oz in two weeks. Some of it may be backed up bowel movements...heehee. |
| Jan 26 | Rachel had a very good night and day. She fell asleep after the midnight feed extended to 1:30AM because of her fussiness. Daddy woke up and was about to feed her at 6:30AM when Mommy got up as well and sent Daddy back to bed. Rachel took the feed very well and fell asleep right away. She was up for 3 hours at noon and then up again at 6PM. She was very happy during the up times...lots of smiles and giggles, yes giggles:-D. There was no teething, gas, or whatever pain...it's been awhile since she had such a good day! She finally retired for the night at midnight after a very fussy (perhaps because she was very tired) feed that lasted 1.5hrs. Rachel had a couple of BM today...both dry...there was blood at the end of the first one which freaked Mommy out so much she called the pediatrician immediately. He assured her it was probably just a tear from the hard pushes and recommended some prune juice for her...1/4oz twice daily (start tomorrow). Meanwhile, another dose of olive oil to keep the BM rolling. Rachel averages 19-20oz/day, 30-60cc Pedialyte/day, 3mg Furosemide (Lasix)/twice daily, 15mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. |
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| Week 25 | January 19, 2004 to January 25, 2004 |
| Jan 25 | Rachel had a good night...woke Daddy at 2AM for diaper change...woke Mommy at 4AM for food. She was up at 8AM for about an hour and for the first enjoyed the toy bar on her bouncer...she kicked her feet to trigger the lights and music. She was up for another couple of hours in the afternoon and again after 8:30PM. Rachel did not have a bowel movement all day today...time for a dose of olive oil. |
| Jan 24 | Rachel pretty much slept all day...up for a couple of hours in the morning and a couple of hours in the afternoon. She managed to pull the NG-tube out today...haven't had that happen in awhile. Good thing Daddy was home. |
| Jan 23 | Rachel stirred at 2AM for food and 5AM for diaper change. Cardiologist appointment today...no change. The poor man had to listen to Mommy and Daddy complaint about the pediatric surgeon and the gastroentrologist. :-O Followup in 6-8 weeks. The pediatrican call at first to inform Daddy the pediatric surgeon did not return his calls for two days...gave Daddy a referrel to use somebody else...later, to say the surgeon finally returned his call and they are on the same page...the surgeon shall do nothing unless there's obvious obstruction (he won't leave it if he sees it) Mommy had go into work for the last time for the exit interview...she had decided that spending time with Rachel is worth more than anything at this time. Rachel had a nice nap with Mommy from 5PM to 8PM :-) She turned in for the night at 11PM. |
| Jan 22 | Kung Hei Fat Choy! Happy New Year! Today is the lunar new year...Year of the Monkey. Rachel must wanted to welcome the new year as she was up for a couple of hours after her feed around midnight. She stirred at 4:30AM for food...woke at 5:30AM for diaper change and stay awake afterwards...well rested after all that sleep the previous day. By 6AM, Mommy had to wake Daddy to take over. Pediatrician appointment today. Rachel's 7lb 13oz and 21.75 inches long...slow growth, but growth nontheless. Mommy and Daddy discussed the surgery decision with the doctor asking for his opinion. He emphasized correcting the malrotation will not be a comfort care measure. It's a bigger surgery and will add many more days for recovery. Mommy and Daddy asked him to talk to the pediatric surgeon to make sure everyone's on the same page. The doctor confirmed Rachel was teething on the bottom front. Mommy had initially thought the upper front tooth was coming out above the gumline...it turned out to be a 'bubble'. Rachel was really tire after the pediatrician and slept until 7PM. She was up until 11PM. |
| Jan 21 | Rachel was very fussy at the 4AM feed...Mommy gave her orajel...nope...Mylicon...nope. Finally at 5AM, Mommy had to wake Daddy for help and also tried some tylenol...that did the trick...she calmed down and finished her feed. Appointment with the pediatric surgeon today. It was a rough car ride, Rachel fussed the whole way...about an hour...and continued in the surgeons office. The surgeon said the Upper GI Series were inconclusive. Mommy and Daddy weren't sure why and the surgeon did not take the time explain the situation to them. All he wanted to know was "What do you me want to do?" Mommy couldn't answer that question. Mommy had struggled all week with the surgery question since the test...if correct the malrotation, why not the heart, too...if not, then how can they deal with the pain and suffering when the bowels are twisted or obstructed. The decision was finally made to do the gastrostomy and while there he will look...if there's twisting, he'd correct it. Mommy insisted on asking some questions concerning the G-tube procedure...he answered them. It seemed to Mommy and Daddy once he received the consent for the surgury, he was ready to say goodbye. Like the GI, he did not leave a good impression with Mommy and Daddy. However, Mommy and Daddy decided that it'd be quickest to remain with him for the gastrostomy. Rachel had a nap with Mommy after coming home from the surgeon. She was still very tired...all that fuss...slept from 6PM to midnight...slept thru the Chinese New Year Eve dinner (it's a tradition for the family to get together for a festive dinner on the eve before the lunar new year) at Grandpa's. |
| Jan 20 | A rough day for Rachel. She was up from 10:30AM to 5PM, took a couple of 20 minutes naps. She was very fussy all day. She'd calm and fall asleep in the Baby Bjorn...wake when Mommy tried to put her down...fussed...back in the Bjorn... By 5PM, both Mommy and Rachel were exhausted and Mommy gave in a let Rachel sleep in the Bjorn for a couple of hours until Daddy came home from work. Daddy took over to let Mommy rest a bit. |
| Jan 19 | Rachel went on a schedule today...sleep 4 hours...wake for 2 hours. She was up at 4AM to 6AM...10AM to noon...4PM to 6PM...10PM to midnight. A bit fussy during her wake times...probably bothered by the tooth. Rachel averages 18-19oz/day, 30-60cc Pedialyte/day, 3mg Furosemide (Lasix)/twice daily, 15mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. |
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| Week 24 | January 12, 2004 to January 18, 2004 |
| Jan 18 | Rachel fell asleep after the midnight feed...perfect timing! She had a pretty good night and day...woke at 4AM for feed...6AM for bm & diaper change...8AM for another feed...up from 10AM to 3PM...slept till 8PM...up from 10PM to midnight. |
| Jan 17 | The pattern...slept a few minutes...fussed...slept another few minutes...fussed...continued to 3AM. Mommy was exhausted and had to wake Daddy for help. Daddy gave Rachel some baby orajel which quieted her down...so it was teething! It looks like the upper front tooth (maybe teeth) is making its appearance...above the gumline though...a bit too early to tell. Daddy took care of Rachel for the rest of morning so Mommy can get come time to catch up on her sleep. Rachel slept fitfully (made noise, but not crying) for the remainder to the night and morning. She was very tire and slept the whole afternoon (pretty soundly)...maybe another rough night :-( Rachel woke up at 8PM and stayed awake till her next feed. |
| Jan 16 | It was indeed a rough night. Rachel slept through the midnight feed. She woke at 2AM for a diaper change. The fussiness started at 2:30AM...Mommy gave her a dose of tylenol in case it was the tooth that was bothering her...it was not...Mommy then tried Mylicon...nope...the Baby Bjorn settled her down again...by 5AM, Mommy transferred a sleeping Rachel to the bouncer, fed her and ready to get some shuteye herself. At 5:30AM, Rachel started to fuss again...Mommy was too tired and woke Daddy for help. Daddy must have done a good job because the next thing Mommy knows it was past 8AM and Rachel was screaming. It was just hunger as she went back to sleep after Daddy fed her (with some difficulty as Rachel was fussy...Mommy was too tired to help). She slept for an hour, woke with some fussed...slept for another hour...woke for food...fussed some more and finally settled down to a 3hr sleep. The evening was pretty much to same...slept for a short while...fussed...slept some more...fussed some more. |
| Jan 15 | Rachel was very good at night. She slept in the snuggle nest for an hour...woke up a bit congested. Mommy thinks lying flat at night does that to her...doesn't seem to bother her in the day time though...strange. So back to the bouncer where she slept until the next feed at 4:30AM. She was awake after the feed but very quiet...Mommy fell asleep while Rachel sat quietly in the bouncer. Daddy found her there asleep for the morning feed. Rachel woke Mommy up at 10:30AM for her meds. She was fussy for the rest day from then on. She was calmed only when Mommy put her in the Baby Bjorn, but she wouldn't let Mommy sit down...has to be moving around. She slept fitfully in the Bjorn all afternoon. Rachel fell asleep in the bouncer after her 4:30PM feed. Mommy took the opportunity to nap for a couple hours as she anticipate a rough night ahead. Rachel continue to fuss at night...Daddy thinks it's the tooth. She finally fell asleep in the Bjorn at 11:30PM. Mommy put her down in the bouncer at 11:45PM with no problem. No olive oil today as Rachel had two good BM. |
| Jan 14 | Rachel was a bit fussy when Mommy tried to put her down after the midnight feed. She liked lots of bouncing motion...finally at 2AM she fell asleep in the bouncer. She slept all the way til 7AM...at least Mommy and Daddy didn't hear anything from her earlier...heehee. Daddy fed her and she slept some more...til noon. Mommy can get use this :-D Rachel was very happy all afternoon...lots of smiles for Mommy. Continue with the olive oil. Rachel's 7lbs 9oz...gained 6oz in two weeks. |
| Jan 13 | Rachel was up for her midnight feed...she slept in Mommy's arms and wouldn't let Mommy put her down until 2AM. She was up again at 5AM for more food and stayed up until 6:30AM with a very tired Mommy. She slept pretty good for the rest of the morning. Rachel was up most of the afternoon...a good thing...slept for about an hour between 3PM and 4PM. She was exhausted by the time Daddy got home at 8PM. She slept soundly until shortly before the midnight feed Rachel's Gastroentrologist (GI) called with the results of yesterday's test. Her small intestine is out of place...things are not where they supposed to be! (malrotation?) It could lead to completely blockage of her bowels...big problem! Appointment with the surgeon to discuss options next week. No PT this week...the therapist came while Mommy was helping Rachel with a bowel movement and couldn't answer the door :-( More olive oil as Rachel is still a bit backed up. | Jan 12 | Rachel kept Mommy up all night :-(...not too fussy, but made enough noise that Mommy could not sleep. Mommy fed the sleephead at 4:30AM with no problem. She woke up at 5AM and stayed up til almost 8AM, enroute to the Upper GI series test. She was happy with lots of smiles until she went into the car seat. Rachel does not like car seats, but eventually tired out and fell asleep. The Upper GI test started with barium injected via the NG-tube. They checked for reflux and found no problem in that regard. A series of x-rays were then taken as the barium traversed through her system. They wanted to take x-rays of her small intestine as well...take x-ray...wait...another x-ray..wait...x-ray...more waiting... The barium was going through Rachel very slowly. By the end to almost 5 hours, it was still not quite at where they want it. This could mean some sort obstruction or other problems...will have to speak to the GI to find out. It'd explain all Rachel's pooping, gas, and spit up problems. More stuff for Mommy and Daddy to worry about :-( Rachel was very cranky after the test...Mommy had to take a nap so Daddy had to deal with the fussy baby alone. Rachel was still fussy...maybe from hunger...constipation (no bm yet)...tired...when it was time for the tube to go in at 7PM, as a result Daddy had a hard time with it...took over an hour for her to be calm enough. It was a hard feed with a fussy Rachel. She took about 2.5oz and settled down to sleep for the rest of the evening. Another dose of olive oil today as the barium tend to cause constipation. Rachel averages 18-19oz/day, 30-60cc Pedialyte/day, 3mg Furosemide (Lasix)/twice daily, 15mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. |
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| Week 23 | January 5, 2003 to January 11, 2004 |
| Jan 11 | Rachel was a bit fussy to 2AM with Daddy...woke at 6AM for food then back to sleep...woke at 8:30AM. She stayed awake for a few hours. The olive oil must have kicked in as she had a 3 small BMs today. She still spitting up quite frequently with .5-1oz. It continued even though Mommy and Daddy cut back her feed abit. Daddy thinks Rachel may be teething...he saw a few white spots on the gums...is he right? |
| Jan 10 | Rachel did not have a BM all day...Daddy gave her a dose of olive oil in the evening. She was generally cranky all day. |
| Jan 9 | Rachel had a decent night...fusses due to the constipation. Just having alot of difficulty, accompany by several spits up, with each BM. Rachel had to say goodbye to GrandmaK who stayed because Mommy and Daddy had to go pay respect to Grandma at the cemetary. It was below freezing there...12 degrees...Grandma received a nice big house, a big red car, some nice clothes, and money (some Chinese believes there's life after death...burning paper money and products ensures their loved ones' after life would be rich and comfortable). This trip, which symbolizes the end of a deep mourning, is normally carried out after a complete lunar month, had to be performed earlier due to Chinese New Year in a couple of weeks. Grandpa did not wish to carry any sorrow into the New Year. Mommy will miss GrandmaK's food and her knack for making Rachel fall asleep...it's like magic, Rachel simply just loves to sleep in GrandmaK's arms.
The NG-tubes finally arrived...hurray! |
| Jan 8 | Rachel continued to fuss until 2AM...seemed like bellyache...belly's very stiff...finally settled down after a bowel movement. Rachel took little short naps, each about 30 minutes, all day today. Rachel was re-evaluated by the Children's Rehab Center doctor, the one that makes recommendation on her therapies. She wanted Rachel to have PT twice a week and a teacher to work on her senses such as tracking, hearing, taste, also twice a week. She also wanted a splint for Rachel's hands to be worn while she sleeps. The doctor wanted Rachel to sit up more and ordered a chair for her. All these new things will probably take some time to set up. The doctor also mentioned that Medicaid will cover a nurse's aid to care for Rachel a few hours a day if Mommy goes back to work...that would be very nice because Mommy does want to at least work part-time. Next evaluation in 5 months...by then Rachel can be accepted in the "program" which will be like going to school... from 8:30 to 2:30 with all the therapists and teachers there to work with Rachel...that will be great indeed...but one thing at time, get the G-tube first. Still no NG-tube, but the supply agency promised they'll arrive tomorrow...heard that one before, believe it when they actually get here...hard to imagine at this time and age, it took over a month to get these supply. Mommy and Daddy had to leave the tube in Rachel for 2-3 days for the past week to conserve supply. |
| Jan 7 | Mommy and Daddy was able to get a few hours of sleep and off they go after feeding Rachel at 7AM. Rachel was a bit fussy but took the feed. She spit up some afterwards. GrandmaK said Rachel was fussy all day...very tough to feed her. They managed ok...Rachel did not starve...just tired GrandmaK out. Rachel was still fussy by the time Mommy and Daddy came back at 7PM. Still no tube. Mommy and Daddy like to specially thank GrandmaK and Wai for taking care of Rachel the past couple of day while they paid their final respects to Grandma. |
| Jan 6 | The big test today...Mommy and Daddy left Rachel with GrandmaK and Wai (Daddy's friend) for a whole day. They left at 12PM and came back at 11PM. Rachel was actually very good. She slept most of the day and did not give GrandmaK and Wai much trouble until the last feed at 10:30PM. Grandma K was calling for help when Mommy walked in...actually everything was already under control. Rachel had settled down. Mommy help finished the feed and Rachel fell asleep again which was surprising considering she slept the whole day...must know Mommy needed to rest up for tomorrow. Still no tube :-b( |
| Jan 5 | Another good night :-)! Rachel slept from 1AM to 11AM with some interruptions...Mommy feed her at 2AM without waking her up...diaper change at 5AM...Daddy fed her a 6:30AM...diaper change at 7:30AM...another feed and meds at 10AM. She then stayed up for a couple of hour...giving Mommy some smiles...staring into space...very content. Her rashes looked much better today...thanks to Millie (a friend, more like family, sister-in-law's sister-in-law) for suggesting the use of cocoa butter cream/lotion. Rachel's skin is considerably less dry, hence she does not rub as much giving the rash a chance to heal. The fact that Mommy switched detergent (to dreft) and adding an extra cycle to the wash may have help as well. The NG-tubes still did not arrive today. Mommy placed a call to the insurance case worker hoping she can help, but she said it was better to use the same supply agency and just pressure them to make sure the tubes get to Rachel. It was a relief for Mommy and Daddy that she will follow up with the supply agency for them as they just don't have to time and patience for that kind of stuff right now. Rachel averages 17-18oz/day, 30-60cc Pedialyte/day, 3mg Furosemide (Lasix)/twice daily, 15mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. |
| Week 22 | January 4, 2003 to January 4, 2004 |
| Jan 4 | Rachel's five months old today...happy birthday! Everybody had a good night. Rachel slept from 1AM to 7:30AM...woke for a diaper change at 2AM (Mommy and Daddy were still up...crazy people) and stirred at 4AM for some food. Rachel continued to have spit ups today. Her bowels were still a bit irregular, so Daddy gave her a reduced dose of olive oil in the afternoon. Rachel is in desperate need of NG-tubes. The supply was backordered in early December and still hasn't come. There is only a couple left! In desperation, Mommy and Daddy tried to use the ones that were sent by the supply agency back in Aug. They were way too long...7 inches longer and can wrap around Rachel's neck...Daddy taped some loops to shorten it. For some reason, the feeds take twice as long with these tubes. A normal 20-30 minute feed took 45-60min to finish...that's when Rachel's calm and sleepy...can't imagine how long it'd take when she's fussy. |