Rachel's Journal - Month 8

Week 35	March 29, 2004 to April 3, 2004
Apr 4	Rachel is 8 month's old today...how time flies! Happy, happy, happy birthday to the little piggie :-). Rachel woke up at 1AM (2AM EDT)...it took her almost 2 hours to get back to sleep. She slept well and got up at 11AM EDT. She was a tired little piggie today and was out again at 12:30PM till the next feed at 3PM. She stayed awake for a few hours and had fun with Grandma K while Mommy took Cousin T. to the movies...Daddy had took Cousin K. ealier...Rachel was fast asleep when Mommy returned at 8PM. Mommy had stopped by the supermarket on the way home to get groceries but forgot to pick up Rachel's 8 month cake :-o...oooohhhh, the complaints from Daddy!...so Mommy sent him out to get the cake right after dinner. He got to the market just as they were about to close! Whew...otherwise Mommy would never hear the end of it...Rachel got a strawberry shortcake this month. She woke up just before Daddy got home...Mommy gave her a bath...all ready for cake and pictures...some nices shots this month as Rachel cooperated fully :-) Either she's really tire or the meds are making her drowsy as she fell asleep again during her next feed at 11PM.
Apr 3	Rachel woke at 1AM...start of a rough night for the little piggie...she just couldn't settle down...not loud cries, just whiny little noise that let Mommy and Daddy know she was uncomfortable...mylicon, orajel, tylenol...nothing helped. She was up with Daddy till 3AM while Mommy took a nap for a couple of hours...Mommy tookover till 5AM when Rachel finally exhausted herself and allow Mommy to put her down in her crib to sleep. She was up again early...8AM...still cranky. Mommy called the pediatrician's...unfortunately her regualar doctor was not seeing patients today, but the physician's assistant was available to see her. Off to the peds...everything looked/sounded okay...ears, throat, lungs. He looked at the G-tube site and suggested that the VN may have a good reason to be concern...nothing alarming, just be cautious. Rachel's regular ped walked in at the end to say hi and while there suggested a nose spray, astelin, for Rachel to help with her congestion (which can be the cause of her spit ups)...the prescription was wrote out. Off to the pharmacy to drop off the script...while there Mommy asked again if the surgeon had called in the antibiotics prescription...he had not. Mommy called the surgeon...the answering service got the on call doctor to call back...he was mighty rude to Mommy, got Mommy all fired up...seemed he was upset he got paged for somebody else's problem...the surgeon should have been page b/c the on call doctor does not know Rachel's case...of course he couldn't say that nicely, had to be rude @#$%^. Mommy finally got a hold of the surgeon and he made the call to the pharmacy. Rachel finally had her antibiotics (cephalexin)...things Mommy had to deal with! Rachel was a bit fidgety throughout the afternoon. Mommy managed to nap for a couple of hours during one of Rachel's short naps...Daddy had her when she woke. Mommy went down to the city to get Grandma K and two of Rachel's cousin...they will be visiting for a few days or perhaps thru the Easter holiday...yeah, Rachel loves company...new faces to explore. Rachel had a couple of spit ups today, both when she was put down too early...Mommy had stopped the cereal and decrease her feeds to 90cc for today. Rachel was tired and fell asleep shortly after her 10PM feed.
Apr 2	Rachel slept beautifully all the way till 8AM. She spit up after all her bolus feeds with cereal today :-(. Mommy thought Rachel's probably fighting off something. There's been coughing, some sneezing, and congestion sounds. Mommy's also coughing a bit, so they may be fighting the same bug. Mommy's going to hold off on the cereal until Rachel gets better. The VN was unhappy with Rachel's G-tube site. It was a bit redder than two days ago...she was worry it may be something that Rachel can't fight off. The VN called the surgeon who was supposed to call in the prescription for antibiotics to the pharmacy, but no call was made when Daddy got to the pharmacy at 7PM...hmmmmm what happened?! Mommy and Daddy decided they should try to get Rachel to the pediatrican tomorrow (he's there in the mornings on Sat) to check her out anyway...maybe he'll prescribe some antibiotics.
Apr 1	Rachel woke up at 11:45PM...fussy...she stayed that way for a long time...Mommy tried Mylicon, orajel, tylenol...nothing worked. By 3AM...she was calm, Mommy was exhausted...no complaint when Mommy put her in the crib, so Mommy went to sleep. Daddy said Rachel woke at 5AM...he patted her back to sleep. Mommy started to add rice cereal to Rachel's formula today...1 tsp/4oz...only during the bolus day feeds for now. Rachel was fussy after the morning feed with cereal...too much?...Mommy reduced to next feed from 100 to 90...she did better...the next feed at 95...very fussy from start to finish and more...fine for the last bolus feed at 90. Mommy was feeling the effects of the past few late nights, so she left Rachel in Daddy's care and went to bed early. Daddy reported Rachel was a very good girl.
Mar 31	Rachel stayed up till well past 2AM...Mommy put her down at 2:45AM. She was up at 8AM...a bit cranky...could be gas or teething...Mommy gave her mylicon and orajel. Rachel took 3 two hours naps during the day. She was a bit gassy at times but otherwise okay. She was asleep by 11PM
Mar 30	Rachel fell asleep at 11PM, but woke for a diaper change at 11:45PM and stayed up for an hour. She was good until 5:30AM. She made enough noises to wake Mommy. Mommy changed her position as there was a big wet spot where she laid...changed her diaper...she was calm at first, but the noice volume kept increasing until Mommy picked her up. She was still awake when Daddy got up at 7:30AM. He took over while Mommy went back to sleep. Rachel fell asleep before Daddy left for work. She was up for a few hours in the afternoon...not her perky self though...hope it's just teething. Her PT was cancelled today :-(.
Mar 29	A strange thing happend as Mommy was updating Rachel's website...only part of the file (1/2 week's data) was ftp...Mommy tried again, but sent it to the wrong directory so she deleted it. Well, the file was deleted from the harddrive as well :-O...Mommy was pretty upset as the file contained the current month's journal. Lucky for her, Daddy knows how to recover deleted files from the harddrive! Everything's good again :-)...Mommy better make backups! Rachel had trouble falling asleep...her teeth were bothering her, orajel was not enough. She finally settled down with tylenol. Mommy dozed off with Rachel on her chest...around 2AM...Rachel must have dozed off as well...Mommy finally put Rachel down in her crib at 3AM. It was a very nice day out...Mommy took Rachel out on the deck during her nap...Rachel did not mind it and continue to sleep while Mommy did some yard work (real hard work! Mommy needs alot of help!). Rachel slept for 4 hours before her PT so she was well rested...she had an excellent session...smiling at the therapist until the very end. The PT tired her out a bit and she took an hour nap afterwards. Rachel was a bit cranky at times due to her teeth...no spit today Rachel gets 19-21 oz/day...100cc/4x during the day & 200-220cc @ 27cc/hr during the night, 4mg Furosemide (Lasix)/twice daily, 20mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. Rachel's 8lb 13oz today...gained 3oz from last week.

Week 34	March 22, 2004 to March 28, 2004
Mar 28	Rachel fell asleep around 12:30AM all the way till 8AM. Today's the annual Ching Ming festival...grave sweeping day (or simply, visit the cemetary). Rachel met all Daddy's family there...she paid respects to her great-grandparents and grandma. It was a long day for her and she nap till 8PM when Mommy woke her for a bath. She hanged out with Daddy while he watched a movie for the rest of the evening. Rachel spit up once today when Daddy tossed her in the air after she ate...bad Daddy.
Mar 27	Rachel continued her night routine. She was up until 1AM because her nap schedule was messed up by the EI appointmnet...Mommy let her sleep till 8PM yesterday. She only woke up once during the night :-). Daddy decided he wanted to take Mommy to the mall...big mistake for him...Mommy took a long time at each store looking for dresses for Rachel...Daddy was getting very impatient...oh well, Mommy don't get out much nowadays. Mommy picked out 3 summer dresses for the little munchkin...she bought size 3/6 months, that's 12-15lbs!...she's got high hopes of Rachel gaining 4lbs in a 4 months...too optimistic?! :-) They went during Rachel's nap time...she slept in the car on the way to the mall and woke up when they returned home...missed the whole excursion. Rachel spit up after her bath today...perhaps Mommy gave her the bath too soon after her meal.
Mar 26	Rachel had a good night...considering she was not feeling good. She woke up a few time, but was able to be patted back to sleep. She was up early at 7AM...a bit cranky. Mommy tried orajel first...then some Tylenol...she settled down eventually. Appointment with Early Intervention (EI) to assess re-starting & adding therapy. Rachel got alot of attention from all the girls there while waiting for the doctor. They all thought she was a cutie. Rachel will have PT twice a week, OT once a week after the evaluation is done, Speech/feeding twice a month. She will also be fitted for hand splints to try to keep her hands open. She's going to be a busy little girl. :-)
Mar 25	Rachel did it again...slept thru the night! She was awake when the night feed stopped at 7AM...very calm and happy! She's been a very good baby :-*. Appointment with the pediatrician today...8lb 11oz, 22in...3 vaccinations plus blood drawn for potassium check...ouch! He recommended to start adding cereal to Rachel's formula...1/4tsp for every 4oz. Mommy mentioned to the pediatrician they were considering heart surgery for Rachel...he recommended them to speak to a boi-ethicist first...guess to talk about value of life and such. Rachel fell asleep after Mommy fed her when they got home...she's a good baby. Rachel was a bit cranky in the evening with a slight fever at around 100 degrees. Daddy gave her some Tylenol at 10:30PM. She fell asleep at around 11:30PM...still pretty hot.
Mar 24	Rachel slept thru the night! She was up at about 7:30AM...a bit of teething pain today, so she wasn't a happy camper. Insurance is such a pain in the neck...Rachel was approved for Nutramigen as a medication, so Mommy order a month's supply thru the company that supplies Rachel's other equipments...wrong!...the insurance will not cover that, it has to be ordered from a local pharmacy, like medicine. Since Mommy already ordered a month's supply which came last Fri, Mommy has to replace the three cans that were already used and send the formula back...what a hassle. Daddy dropped off the script and the authorization letter with the pharmacist...they also need authorization from Medicaid...got the authorization, but does not match script...need new script...Medicaid does not accept fax, has to wait for mail...Mommy told the pharmacist to process the first month supply without Medicaid ($20 copay)...insurance had no record of the authorization!...good thing Daddy left the letter with the pharmacist...he had to fax them the letter...finally Rachel gets her formula tomorrow! One more thing, the amount dispense has to be exact as on the script...20oz/day in Rachel's case. Do they think she won't ever grow and need more?! Mommy and Daddy will just have to pay for the extras...way too much hassle.
Mar 23	It's starting to feel like Rachel has got a routine...up early for a few hours...a couple of naps during the day...up for a few hours in the evening...asleep during the last bolus feed, between 9-10PM. It's wonderful :-D. Another VN stopped by today...the regular one has to attend a conference...she reassured the G-tube site looked fine. No spit up today.
Mar 22	Rachel woke up a few times during the night...was able to go back to sleep right away...Mommy can definitely live with that! Rachel had a very good day...very happy...lots of smiles and bubbly laughs :-). Mommy noticed Rachel gave her big smiles...those cheek to cheek ones that goes up to the eyes...when Mommy got close to her today...several times...gave Mommy warm and fuzzy feelings inside knowing Rachel that perhaps can recognize her and was reacting accordingly :-*. She turned in for the night during the 9:30PM feed. She did spit up once today :-(...a couple of mouthfuls...about an hour after one of her feeds, right after her bath...hopefully it's just an isoloated incident. Rachel gets 19-21 oz/day...100cc/4x during the day & 190-210cc @ 26cc/hr during the night, 4mg Furosemide (Lasix)/twice daily, 20mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. Rachel's 8lb 10oz today.

Week 33	March 15, 2004 to March 21, 2004
Mar 21	As with the previous night, Rachel woke up gassy a 1AM...what's with this time of night?! Mommy gave her some mylicon, but it still took her a couple of hours to go back to sleep. She woke again an hour later...went back to sleep after some patting this time. She was up at 6AM...Mommy was too tired and since it's Sunday, she woke Daddy for help...Daddy grumply took over. It took Rachel a while to fall asleep again...she'd not sleep for long...half hour here, half hour there...so Daddy said. It was a lazy Sunday afternoon...Daddy and Rachel took a nap for a couple of hours...Mommy wished she could have joined them...those darn chores! Rachel was very good except for the half hour after Mommy changed her dressing...the G-tube site looked kind of red to Mommy...have to ask the VN about it when she comes next week. Rachel was asleep by 9PM.
Mar 20	First day of spring! Rachel woke up at 1AM...to welcome the arrival of spring ;-)...a bit gassy. She managed to eventually settle down at 2:30AM...woke up again an hour later, but was able to go right back to sleep. Not another peep from her after that until 8AM. She stayed up for a while...took an hour nap at noon...up again in time to go out with Mommy and Daddy on their quest to get a party dress for Rachel for the upcoming wedding of Rachel's uncle in May. Rachel finally go too tired and fell at sleep around 3PM...she slept until they were home just before her feed at 6PM. She was still very tire and went back to sleep after her belly was satisfied...Mommy would have liked her to stay up, but didn't have the heart to wake her once she fell asleep...she may regret it later. Mommy woke Rachel for a bath at 9PM...tried to keep her awake, but Rachel was just too tire...she want nothing else but sleep...Mommy gave in after her feed at 10:30PM.
Mar 19	Rachel had an EXCEPTIONAL night...woke up only twice...at 2:30AM for diaper change and some other time...she was all quiet when Mommy got to the crib :-*...could be she was more comfortable since Mommy put a sheet saver under her to absorb the sweat from her head while she slept...could be the increased in feed, a whopping 1cc/hr...whatever the reason, Mommy and Daddy were extremely happy. She woke for over an hour at 8AM. A morderate snow storm...in the middle of March with spring just around the corner...dumped a few inches, but the snow thrower was broken :-O...Daddy had to shovel by hand :-(...can't wait till the warmer weather the get here. Rachel's day was just as good as the night. She was up for 3 hours at noon...very happy, lots of smiles & giggles...enjoyed the toybar on her bouncer in the evening...laughing as she made the lights and music go on. She slept for 4 hours, Mommy woke her at 6PM for food...she tried to go back to sleep a couple of times, but Mommy managed to keep her awake...she had more fun at the bouncer, showing off to Daddy. She fell asleep at 11PM...another night the last would be just dandy :-)
Mar 18	After a couple of decent nights, Rachel went back to her night life. Mommy tried everything...mylicon, orajel, tylenol...nothing worked. By 3AM, Mommy needed help and woke up Daddy. Daddy also re-tried the regimen to no avail. Mommy got up at 5AM to give Daddy more rest. Mommy was desperate and was ready to give Rachel codeine, but Daddy adamently said no. Rachel finally fell asleep at 8AM...slept the whole day with only interruptions for food. She was up for a couple of hours at 9PM...bath...some playtime...feed...back to sleep. Last approved visit for the VN today, but she said she'll come next week, for free even if insurance does not approve any more visits, to check on Rachel's G-tube site...just to be sure there's no infection. Mommy will have to clean and change the dressing in the mean time.
Mar 17	Rachel woke up a few times during the night...Daddy got up for her...such a good Daddy :-*! Appointment to see the pediatric surgeon today...the surgicial sites looked great...he took out the stitches and redressed the G-tube site...he showed Mommy how to clean and redress the G-tube site...have to do that daily. Follow-up in 4 weeks to see if Rachel gain enough weigh to get a button. Mommy and Daddy were pleasantly surprised today the insurance approved Nutramigen as a medication for Rachel...yeah, free formula :-)! Rachel slept most of the afternoon and evening. She was calm and quiet otherwise. She lost another couple of ounces...it's starting to get worrisome. Start to increase her formula intake tomorrow.
Mar 16	Rachel had a decent night...Mommy figured out the source of her discomfort! More teething sites...Mommy had been giving orajel on the wrong place! Two more swelling site popped up on the left side...Mommy had been applying the orajel on the right side where it had bothered her before the surgery...took Mommy long enough to figure it out. Rachel had mylicon and orajel...on the correct sites this time...at midnight. She fell asleep at 12:30AM and Mommy started her continuous feed. She woke up a few time with cries...pretty much every hour till 4:30AM...went back to sleep quickly after Mommy or Daddy pick her up, so it wasn't too bad for Mommy and Daddy. She was crying again just before Daddy left for work...Mommy gave her some orajel...fell asleep afterwards. Rachel was up for a couple of hours here and there. She was pretty well behaved. She lost some weight though...3 ounces.
Mar 15	Rachel had a real rough night...she tried to sleep a few times but woke up 15 minutes after Mommy put her down each time. She was not too cranky...just wide awake...wanted to be held all the time...Mommy gave her some regular tylenol at 2:30AM just in case...no help. By 3AM, Mommy couldn't keep her eyes open and woke Daddy for some help. Rachel was still awake at 5AM...Mommy woke to give Daddy a couple of hours more sleep before he had to go to work...Mommy had wanted to give her tylenol with codeine, but Daddy said no, she didn't seem to be in pain...Mommy agreed, it's just Rachel had always slept well after getting tylenol with codeine...is it too ridiculous for the baby to be addicted to that stuff? Rachel laid on Mommy for another hour before drifting off...Mommy was able to lay her down with success half hour later. Mommy was finally able to sleep at 7:30AM, after stopping Rachel's continuous feed and cleaning the feeding bag. What a night! Rachel woke Mommy at 10AM for food, then promptly went back to sleep. Mommy noticed it was unusually cold in the room...what you know, the furnace had stopped :-( Mommy called for service and they showed up 4 hours later, not too bad this time cause it was daytime. It'll cost $300 for a new relay unit :-(, but got heat back. The VN came by...did the usual G-tube care...everything looked great. Rachel lost a few grams...but Mommy's not worry...she just had to adjust to her new feeding schedules. Rachel basically slept the whole day...up for an hour here and there...Mommy was able to put her down while she was awake today. Always hoping for a better tomorrow.

Week 32	March 8, 2004 to March 14, 2004
Mar 14	Mommy and Daddy had decide to bolus feed Rachel during the night to see if the continuous feed was causing her any discomfort. Daddy fed her with no problem at midnight. Rachel was up at 1AM...awake but relax...Mommy woke to take over. She started to fussy at 2AM...Mommy gave her some mylicon...she continued to be cranky...Mommy gave her baby orajel at 2:30AM...no help...tylenol with codeine at 2:45AM...settled down somewhat but still fidgety...fed her at 4AM...settled down and started to drift...asleep by 5AM, finally. Rachel slept till 9AM...still wanted to be held all the time. She slept most of the afternoon while Mommy and Daddy went out for more shopping. Rachel took naps in the evening...sleep half hour...wake for half hour...always needed to be held when awake.
Mar 13	Rachel fell asleep at 1:30AM...without any meds! But...she was up at 2:30AM..very cranky. Daddy got up but couldn't soothe her. Mommy got up at 3AM to give her some regular tylenol. She quiet down but stayed awake till 4AM. She was up again a 5AM...Mommy and Daddy decided she need tylenol with codeine. She slept better afterwards. Daddy got up in the morning to stop her continuous feed and gave her meds. The VN came...she attended the usual G-tube site care and weight check...gained another ounce :-). Rachel was now on Nutramigen which she started in the hospital. Cardiologist follow-up today...no change in Rachel's heart condition. The cardiologist recommended to discontinue the oxygen...sats in the upper 80's and lower 90's was good for one with a large VSD such as Rachel's...besides he measured Rachel's sat at 96/97 in his office. He also increased the dosage of both meds...lasix to 4mg and 20mcg for digoxin...will need blood test for the patassium level in a week Rachel was pretty good in the afternoon...did a little shopping with Mommy and Daddy. She had a busy day and was fast asleep by 8PM...Mommy was right behind her.
Mar 12	Rachel woke up at 1AM when Mommy had just started her continuous feed. She was quiet at first, but soon started to fuss. Mommy couldn't calm her so she tried a dose of regular tylenol. Rachel settled down a few minutes later, but remained awake. Mommy put her down in the crib at 2:30AM...still awake. Mommy went to sleep...not sure if Rachel slept during the night...Daddy found her awake in the morning. She had another big BM, then started to fuss. She settled down after Mommy gave her some tylenol. Mommy tried gravity feed with syringe...the flow rate must be too fast...Rachel did not like it at all...she fought the whole feed...Mommy had to plunge several times to finish the feed. Rachel slept well after the feed for over 3 hrs. She woked up crying...Mommy changed her diaper...gave her some tylenol...she finally settle down after Mommy started her feed. The VN chose to come at this time to visit. Rachel was just not in a friendly mood. She settled down again after the VN left...Mommy took a nap with her. She woke up crying at 6PM...Mommy fed her and gave her a sponge bath. She settle down and took an hour long nap. She was calm for the rest of evening...being held by Mommy or Daddy...can't put her down. Rachel had not spit up since the surgery...it's been a week!
Mar 11	Mommy decided to try a dose of tylenol with codeine at 12:30AM...not much help...Rachel still wanted to held. Mommy started her continuous feed at 1AM, but Rachel refused to sleep. No amount of singing, rocking, or bouncing work. Finally Mommy just held her...she was awake but at least calm. Mommy was able to put her down at 4AM, but Daddy said she was crying at 5AM...this was worst than when she was at the hospital! Rachel woke Mommy with cries at 8AM...wanted to be held again. She fell asleep in Mommy's arms for an hour...woke with cries again...Mommy gave her a dose of tylenol with codeine hoping it could calm her...it did not...she fussed whenever Mommy tried to put her down. The VN came and saw a fussy Rachel...she was a bit concern. The VN managed to weigh Rachel and did the surgical site care thru her cries...Rachel gained an ounce...probably b/c she did not have any BM yesterday. The VN was concerned about that, too...Mommy told her not to worry, Rachel takes her own sweet time about those things. Rachel got really tire when the VN left and fell asleep...a sound sleep. Mommy gave her the blow by oxygen...her sat was 100 with just 1 liter/hr. Rachel slept thru her next feed. Mommy took the opportunity to grab a couple of hours of sleep as well. Rachel woke up for her feed at 6:30PM...she slept for about 5hrs continuously...a first since coming home. She had a big messy stinky BM...one that Mommy had to give her sponge bath immediately. She slept for another 1.5 hour afterwards...her sat was only in the mid 90s at 1 liters/hr...Mommy increased it 2 liters/hr to get the sat in the upper 90s. Rachel woke when Daddy got home...in a very happy mood...she play with Daddy...gave him a bunch of smiles. She remained calm and comfy until falling asleep at midnight...good chance for a good night.
Mar 10	Rachel was cranky at 1AM...Daddy tried the baby orajel to no avail...he gave Rachel a dose of tylenol with codeine. She settled down somewhat, but still a little fidgety. She was fidgety with Mommy woke to take over at 2AM. Daddy had already fed her which was great because Mommy was still very tire. Rachel laid on Mommy for another 1.5hrs before finally drifted off to sleep...a bit restlessly. Rachel woke Mommy at 6AM for food which she took nicely and went back to sleep shortly afterwards. The supply agent stopped by...it turned out the pump was fine, it was the bag!...Mommy and Daddy felt kind of stupid. The agent brought a pump which he tested to work, put on the bag Mommy and Daddy were using...didn't work, changed the bag...everything operated as it should. Rachel had her first pump feeding at home. She feel asleep soon after the feed. The VN (visiting nurse)...happened to be the the same one that visited Rachel when she was released from the NICU...stopped by...she did some surgical site care...gave Mommy some valuable advice. She suggested that Rachel needed the O2...they recommend oxygen when for saturation less than 93. She also suggested the Nutramigen that Rachel used in the hospital shall be really good for her. The insurance company had denied coverage for Rachel's formula, but the RN thought Rachel would qualify for the WIC (Women, Infants and Children) program in NY...she'll bring the forms for Mommy tomorrow. The liquid oxygen (2 gigantic tank) was delivered at the same time the VN was here. Rachel got fed and fell asleep after everybody left. Mommy gave her O2...she was doing very well...96-100. She slept until close to the next feed. She was a bit fussy during the feed...Mommy gave her some baby orajel...didn't work. She wouldn't let Mommy put her down during and after the feed. She fell asleep for about an hour on Mommy. Daddy worked late today and since Rachel didn't let Mommy do anything else but hold her, no dinner for Daddy. Rachel was started to fuss again when Daddy came home at 9:30PM. Just before the next feed at 10:30PM, Mommy and Daddy decided to give Rachel some tylenol to try to calm her down...no help...she remained fussy after the feed.
Mar 9	Rachel started to fuss around midnight, so Mommy requested a dose of tylenol for her. She remained fussy intermittenly...calms for a few minutes then start up again...until 1AM when Mommy secretly gave her some baby orajel. She calmed down but remaind awake...Mommy was too tire to stay up with...Rachel wouldn't let Mommy sleep...she was fussing again at 1:30AM. She'd calm down and falls asleep in Mommy's arms, but every time Mommy tried to put her down, she'd open her eyes wide and start to cry. Finally she was tire enough to be put down at 3AM. Mommy woke to a crying Rachel at 8AM. The student nurse was taking her temp and vitals. Mommy asked the RN for tylenol before Rachels feed. Rachel continued to fuss after her feed...having a hard time falling asleep. Finally at 9:30AM, Mommy asked for tylenol with codeine...big difference...Rachel was much more comfortable afterwards...sigh...and fell asleep soundly. Guess she'll need a script for tylenol with codeine. Rachel woke up at 11:30AM...very calm. The supplies and equipments came while Rachel was feeding. Daddy showed up while the agents were showing Mommy how to use the equipment. Rachel gets a feeding pump along with all the feeding supplies, oxygen and an oximeter. Rachel was finally on her way home by 1:30PM! Rachel fell asleep on the way home, but woke up when Mommy and Daddy stopped at the pharmacy to pick up her prescription for tylenol with codeine. It was feeding time when Rachel got home. Mommy and Daddy attempted to use the feeding but couldn't get it to work...it kept showing some error...they thought the unit was defective. The agent from the supply company shall come tomorrow to check out the unit. Rachel had gravity syringe feed (similar to the NG-tube feedings) for the rest of night. She didn't seem to like...may be going too fast for her...Daddy had to plunge several times to complete the feed. Rachel fell asleep soon after her feed. She woke at 9PM...a big messy stinky BM. Mommy gave her a sponge which she didn't particular care for. Mommy went to bed after feeding her...Rachel hung out with Daddy for the rest of the evening.
Mar 8	The nurse took Rachel's rectal temp at midnight, hoping to stimulate a bit for a BM...she was just not ready. Her temp was still a bit warm at 99.1. Rachel continue to fidget...finally at 1:30AM, Mommy requested another dose of tylenol with codeine for her. She settled down afterwards, but was still awake. Mommy went to sleep when Rachel started to drift. She was quiet all night...at least Mommy did not hear a peep from her ;-) Her temp was a bit low in the morning at 96.5. Mommy covered her up bit. She was awake when Mommy got up, but looked very tire...like she'd just fought a huge battle...and she certainly has. She started to drift off again. Hopefully, she's well enough to go home today. The surgeon stopped by at 10AM...Rachel goes home tomorrow. She needed to be monitored for her tolerance of the bolus feeds. Since Rachel still have trouble maintaining her O2 saturation, the doctor ordered oxygen for the home :-(. Rachel woke for her sponge bath. She finally pooped with the assistance of a suppository...a bit messy, liquidy, stinky one (too much info?) At noon, her temp was perfect at 98.6 (rectal)...she was feed 80cc/.5hr which went well. She was fussy at first, perhaps just hungry. She was still fussy after the feed and couldn't fall asleep. Mommy asked for a dose of tylenol (regular) for her. She settled down nicely after that. Mommy left Rachel for a few hours to go home and shower. When Mommy returned at 5PM, Rachel had already been feed and was drifting off to sleep. Her last temp measured at 96, so the nurse had wrapped her a bit...Mommy added a blanket. Rachel woke up a bit fussy at 6:30PM. Mommy tried to calm her with no success, so she requested a dose of regular tylenol for Rachel. Rachel remained fussy when Daddy...he had gone to work...somebody had to earn the money to support Mommy ;-)...showed with food for Mommy. Mommy thought Rachel was hungry as it was close to feeding time...8PM. The nurse was a bit busy taking care of other babies so Daddy just kept bouncing Rachel to calm her with some success while Mommy pigged out. Rachel finally got her food at 8:30PM...she fell asleep after an ounce in her belly. Daddy left shortly afterwards...he's going back to work for a couple of hours. Her temp was good...97.3 at 10PM. Mommy took away the oxygen for a half hour...sat remained between 87-92 during that period while she slept. The oxygen at home shall be good for her. The nurse started Rachel on continuous night feed at 10PM...30cc/hr. Rachel woke at 10:30PM...a bit unhappy. MOmmy thought she might have been too full, so she requested the nurse to turn of the feed. Rachel settled down in Mommy's arms...the feed was re-started at 11PM...Rachel seemed to accept it fine...she remained awake. Going home tomorrow...yeah!

Week 31	March 4, 2004 to March 7, 2004
Mar 7	Rachel looked comfortable at last. The nurse took her temp rectally at midnight...97.6, yeah! Her heart rate seemed a bit low to Mommy...100-120s. She was normally in the 130-150 range...have the ask the cardiologist about it next time. She woke for a few minutes at midnight and drifted back to sleep. Rachel woke Mommy with cries at 3AM. She calmed down after a dose of tylenol with codeine. Her temp was 95.8 rectal...a bit low so Mommy swaddled her. She started to cry again...Mommy picked her up, rocked her a little...she calmed down but was not ready to be put down until 4AM...fell asleep...temp was 97.5...better. Rachel was still sleeping at 8AM...temp was 98.1. She was a bit fidgety at 10:30AM...Mommy requested tylenol with codeine. Daddy showed up at 11AM. Rachel was so comfortably asleep that Mommy felt comfortable enough to leave the hospital for lunch. Rachel was sleeping when Mommy and Daddy returned. Her temp was 96.8...Mommy gave her more blankets. She had a sponge bath while they were gone...the nurse said she was an angel :-). Rachel woke at 4PM...she looked a little discomforted so Daddy let her have a dose tylenol with codeine. Her temp was good at 98.2. She stayed up a played with Daddy for awhile before drifting off at 6PM. Her temp rose to 99.2 at 7PM...Mommy took off some of her blankets. Rachel was still sound asleep when Mommy and Daddy returned from dinner at 7:30PM. Her temp was good...98.3 at 8PM. Rachel woke shortly after Daddy left at 8:30PM...she was slightly discomforted. By 9PM, Mommy broke down and asked for more tylenol with codeine for her. She settled down nicely after that and was fast asleep by 9:40PM. Rachel woke at 10:30PM...a bit warm at 99.7...Mommy unwrapped her and took off some blankets...Mommy also changed a heavy wet diaper. She promptly went back to sleep. Rachel woke again at 11PM...a bit fussy...Mommy thought she may be having a bowel movement...but NO, it didn't come :-( Rachel was still on oxygen all day. She was still continuously vented fed with Nutramigen at 20cc/hr.
Mar 6	Rachel continued to fuss at midnight...the nurse gave her a dose of morphine, thru IV drip this time. Rachel continued her whimpers, groans, and cries. It took over an hour for Rachel to settle...going thru the IV drip was just too slow for the poor baby. Her temp had went up to 101.2 by 1AM...the nurse gave her some tylenol. Rachel finally fell into a sound sleep shortly after 2AM. Her temp was 98.6 at 8AM...very good. She was still sound asleep. She woke at 8:30AM, a bit discomforted so Mommy requested tylenol with codeine for her. She went back to sleep afterwards. Rachel's aunt and uncle stopped by to visit her today, giving Mommy a chance to go home and freshening up a bit. When Mommy returned at around noon, Rachel was crying. She had slept till around 11AM. The plebomist took some blood from her which upset her alot. When the nurse tried to give her morphine, she noticed the IV site was leaking. The nurse injected the morphine into Rachel leg and called the doctors about the IV site. She was hesitant to take out the IV b/c it was very hard to get it back in. The surgeon had stopped by ealier...when Rachel was sleeping a calm...he ordered formula feed to start with 10cc/hr. Rachel's temp was going up again at 99.6 at noon. By 1PM, Rachel was still crying in pain...Mommy and Daddy thought the IV might have partially came out and was bothering her, but the nurse said no, that can't be it...Mommy thought she just didn't want to take out the IV. She gave Rachel some tylenol with codeine, but Rachel continued to be uncomfortable. Finally at 1:30PM, one of the surgeon stopped by and he took out the IV. He also directed to increase the feed to 20cc/hr. Rachel settled down soon afterwards. Rachel was still sleeping when Mommy and Daddy returned from lunch at 2:30PM. Her temp was 100.2...going up slowly. Another pair of aunt and uncle showed up to see Rachel...she's so live :-* Rachel was a bit restless for the rest of the afternonn. Her temp was 101 (rectal) at 5PM, so the nurse gave her a dose of tylenol. Her temp was still high, 101.2 at 7PM...the doctors (4 of them) came by and put in another IV Rachel so she can receive antibiotics. It took them a few painful tries to get it in...at one point, 3 of them were poking Rachel at the same time...poor, poor baby! Rachel was all agitated when the doctors were done, but Mommy was able to calm her. Her temp went down a bit to 99.7 by 8PM. She started to fuss at around 8:30...Mommy requested tylenol with codeine for her. She calmed down half hour after the med was given. Her temp was 100.7. so the nurse gave her some regular tylenol for the fever. Mommy and Daddy went to get some dinner...it was so late the cafeteria had put all the food away. Mommy had to request them to cook her a burger while Daddy had a leftover pre-made sandwich...no at all appetizing. Rachel was still calm when Mommy and Daddy returned. She said goodbye to Daddy before drifting off the sleep. Her temp was 99.9 at 10PM...97.9 at 11PM...sleeping good. Rachel was still on oxygen all day.
Mar 5	Rachel woke up at 11:45PM after a whopping 15 minute nap. She continued her feeble cries. Mommy decided to ask for stronger pain killer for her. The nurse had to call the on-call doctor from pediatric surgery to write the order as nothing stronger than tylenol with codeine was written for Rachel. The doctor still hasn't shown up by 1:30AM. Rachel started to drift off for...2 minutes. Mommy felt so helpless watching Rachel suffer so needlessly. The nurse called the doctor again, but he was still busy...gosh wonder if things would have been different if Rachel had start screamed like some of the other babies there instead of her low whimpers. Next time, if there's one, Mommy knows to ask for the strong stuff written just in case. The doctor finally showed up at 2AM and gave the order for morphine. Rachel settled down 10 minutes later, but her temp went up to 102.3. The nurse gave her some plain tylenol for the fever. An exhausted Mommy went to sleep...a mistake...should have stayed up and checked Rachel's temp...it was 102.9 at 7AM...Mommy notified the nurse for more tylenol...nurse shift changed at 7:30AM. The new nurse immediately noticed Rachel's IV site was swollen...a bad thing...her vein's so small that the fluids were pushing against the tissue creating the swell. The nurse immediately took out the IV and notify the doctor. The doctors were in surgery and probably won't show up until noon. A pediatric doctor put in a new IV for Rachel. Rachel's temp went down to 100.6 at 8AM...100.4 at 8:30AM when meds along with tylenol with codeine were administered. Rachel had just started her little pain cries...the tylenol must have worked for she stopped after 10 minutes. The nurse gave her a sponge bath and changed her linens. Rachel was comfortable at last. Her temp went down to 99.9 at 11AM. The surgeon came by at 11AM to give feeding directions...start continuous vented feed with pedialyte at 10cc/hr...drop IV to 10cc/hr from 20cc/hr...continue with antibiotics for another day. Daddy showed up at 11:10AM, just missed the surgeon. Daddy took Mommy, who hadn't eaten since 3PM yesterday to lunch. When they returned half hour later, Rachel was a bit fussy. The nurse had just given her a dose morphine and she was settling down. The nurse had also started her feed with pedialtye. Mommy check her temp...it had went up to 101.7...the nurse gave her another dose of tylenol. Rachel slipped off to a restless sleep at around 1:30PM. She was rudely awaken by the radiologist for a chest x-ray an hour later. Daddy then held her for a bit...she slept restlessly...alot of head movements. Her temp was still high, 100.9 at 5PM...tylenol at 5:15PM. The nurse advised Mommy and Daddy to give Rachel some more tylenol with codeine to get ahead of the pain...Mommy and Daddy couldn't agreed more. Rachel slept much better after the tylenol with codeine was administered, so Mommy and Daddy went to get some dinner. They returned an half hour later to find Rachel sleeping soundly...Her temp had drop to 98.3...yeah! Daddy left shortly before Rachel woke at 9PM...sounded a bit congested...had a few blue spells after she tried to spit up something in her throat with no success. The oxygen pinked her up in a jiffy. She fell asleep at 9:30PM...time for her tylenol with codeine, but her nurse was called away and the replacement nurse was very busy at the time...Mommy didn't push b/c Rachel looked pretty comfortable. Rachel started to groan at 11PM, just as the nurse was about to give her the tylenol with codeine. Her temp went up to 100.4.
Mar 4 G-tube Surgery	This is the day of the long awaited surgery! Rachel had her last feed at 11PM, then 3oz of pedialyte at 3AM. At 5:45AM, Rachel, Mommy and Daddy were on there way to the hospital. It was a cold, wet and rainy day morning with rain expected all day. They arrived at the hospital as schedule. After the admission process, they proceeded to the OR prep room. There the anesthesioligist met and talk to Mommy and Daddy about the risks involving general anesthesia. Mommy went into the OR with Rachel...she was wide awake and in a very good mood...she was gassed until she fell asleep with her eyes open...took less than 5 minutes. The OR nurse told Mommy and Daddy the operation should take about 1.5 hours. The excruiting wait began...1 hour...2 hrs...2.5hrs...oh, the pain and anxiety...3hrs...the surgeon finally popped his head in the waiting...Daddy said with a smile. Everything was fine...Rachel was in recovery...NO malrotation...BIG relief! It turned out Rachel took her sweet time waking from the anethesia...who can blame her when there's so much pain awaiting. The surgeon told Mommy they will start feeding with pedialyte tomorrow then progress to formula. Mommy requested that she'd be bolus fed during the day and continuously fed at nights, which was just fine with the doctor. He thought she'd be discharged on Monday. Rachel looked a bit delarious when Mommy and Daddy first saw her in recovery. The nurse had just given her some morphine for pain under the guidance of the anethesiologist. She was still a bit uncomfortable...her temp was high at 103...she was on oxygen. The anethesiologist left and came back an hour later. Rachel was still fussy, so he order another dose of morphine. The difference was immediate, Rachel calmed down and started to fall asleep. Her temp had dropped to 99, but went back up to 101 just as she was about to be transferred to her room. Her temp remained high...between 99-101 for the rest of the day. Mommy and Daddy went to get some lunch after Rachel settled in her room...sleeping. Daddy broke his diet big time...white bread, fries and soda...such weak resolve. Rachel was awake when Mommy and Daddy returned to her room. Her temp was 100.3 and the nurse had just given her some tylenol. She was awake, but calm. The anesthesiologist stopped by on his way out at 4:30PM. He checked Rachel's O2 sats and was not satisfied...dipped below 80...she'd need the oxygen for the rest of the day. Daddy left Mommy and Rachel at 5:30PM...he shall be back in the morning. Rachel finally fell asleep at 6:30PM. She woke up half an hour later for a half hour then slept for another half hour...woke for an hour, this time with louder cries. Mommy requested some tylenol for her. The nurse administered all her meds, zantac, lasix, digoxin and tylenol at the same time via the new G-tube...this was at 8:30PM. Rachel was out in 15 minutes, only to open her eyes again 5 minutes later. She continued to whimper like she was in pain. She had a dose of antibiotics at 9PM...Mommy requested something stronger for her pain. The nurse gave her a dose of tylenol with codeine at 10PM. Rachel continued to whimper...Mommy tried holding her which made it worse. She fought sleep until 11:15PM...every time her eyes droop, she'd force them wide open again...more groans and whimpers...the tylenol was just not working. Rachel finally managed to fall asleep after Mommy changed her we diaper at 11:30PM. It had been a long hard day...hoping for a better tomorrow. Then oximeter drove Mommy mad with it's beeping every 5 minutes...good thing the night nurse turn the alarm off.