| Week 18 | December 1, 2003 to December 3, 2003 |
| Dec 3 | Rachel was still extremely fussy today during her feeds and awake times. Mommy's going to try to back down abit on her feeds and see if that would help. On a happier note, Daddy said Rachel smiled loads at him when he was changing her clothes (after another spit up). He got no proof, but Mommy believed him as she had seen Rachel's elusive smiles every now and then. One day, it'll be captured in pictures and videos :-) |
| Dec 2 | Rachel continued to be an unhappy camper. She spit up large amounts a couple of times today. Mommy and Daddy have no clue what her problem may be :-( Rachel saw the Gastroentrologist to discuss the possibility of a G-tube. Mommy and Daddy were a bit disappointed...he talked with them for about 15-20 minutes...checked Rachel for a couple of minutes...upped her Zantac dosage to .7cc/twice daily...wrote a script for the upper GI series test...recommended a surgeon...bye. No follow up needed. Guess Mommy and Daddy were expecting someone in this particular field of expertise to work with Rachel throughout her life as T18 babies tend to have life long constipation and reflux problems. The upper GI series, where a series of x-ray will be taken after barium is fed to Rachel, is needed to ensure her digestive track is normal before the G-tube operation. It was scheduled for 12-JAN-2004 (that's their next available, this is one busy place). So it looks like at least another couple of months of uncomfortable NG-tube feeding, poor little Rachel :-( Rachel weighed 6lbs 10oz at both the GI's and Daddy's scales...gained 2oz from last week. They measured her at 20.25 inches at the GI's office. |
| Dec 1 | Rachel had a rough day feeding wise. She was extremely agitated all night and all day during the feeds. It took a long time (almost an hour) for each feed and sometimes she'd not finish. She spit up alot (>30cc??) after mid-afternoon feed. She only took about 13.3oz today :-( Rachel's getting 60-75cc/3-4 hrs, 30-60cc Pedialyte/day, 3mg Furosemide (Lasix)/twice daily, 15mcg Lanoxin (Digoxin)/twice daily, 0.5cc Zantac/twice daily, and Mylicon as needed. |
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| Week 17 | November 24, 2003 to November 30, 2003 |
| Nov 30 | Rachel is 4 months on the lunar calendar! Rachel had a decent night after she kept Daddy up until 1:30AM. She woke up once at 3AM for feed. She spit up some after Daddy fed her at 8AM. It took Moomy awhile (almost an hour) to feed her 65cc at 12PM. She was almost done when she got agitated and spit up 40cc into the syringe. Mommy had to stop and let her rest a bit before feeding her another 40cc. Rachel's rash has completely healed and looked her pretty self again. |
| Nov 29 | Rachel kept Daddy up until 2:30AM. When Mommy woke up at 3AM, she was wide awake in her snuggle nest with her lip smacking...wonder if she got any sleep at all. She was good through the feed and fell asleep around 4AM. She woke up at 8AM for her next meal. Mommy and Daddy took Rachel to visit Grandma at the hospital. Rachel was good most of the 1.5 hour ride. She got hungry 20 minutes before reaching the hospital, so it took a while to calm and feed her. Rachel then sat in the car with her Aunt and Uncle while Mommy and Daddy went up to see Grandma. She was a bit fussy with her Aunt at first...it took lots of bouncing and patting on the behind while her Uncle sang the Underdog (her Cousin really loves Underdog!) theme to calm her. She was calm and sleepy when Mommy returned 45 minutes later. Grandma looked pretty bad and did not seemed to recognize Mommy. It made Mommy and Daddy really sad to see Grandma so ill :-( |
| Nov 28 | Rachel was a bit fussy at the 12AM feed with Daddy and took only 50cc. She fell asleep about 2AM. She was excellent with Mommy (sleeping through the feed) at 4AM and took 75cc, making up for the midnight feed. She slept most of the day. |
| Nov 27 | Happy Thanksgiving! Daddy's family (except Grandma who's still in the hospital) all came and spend the day with Rachel. There was alot of food...Aunt Susan did all the cooking ...Thank you, Aunt Susan :-*. Rachel was oblivious to all the activities as usual. She was awake and alert after everyone left. Oh well, guess she's a bit shy and don't particularly care for alot of company Rachel was fidgety during her feeds and took about 14.5oz today. Her rash was started to look better after a couple of application of the creams. |
| Nov 26 | Rachel was very good at night. She was awake and had a good PT session. Her head control has been excellent. Tracking was still a bit difficult. Hands and legs ranging were good after initial resistance. The therapist added hip and leg lifts, which will help her rollover, to her exercises. Just can't wait for that to occur. Rachel's rash looked really bad after her tube was pulled. There were fluids coming out of the rash also. Mommy called the pediatrician and the nurse said to bring her in. Good thing Daddy was working from home today and helped Mommy brought Rachel to see the doctor :-). The pediatrician quickly checked her and prescribed a couple of creams, bactroban and cutivate, to apply twice daily for one week. He thought the rash was most likely caused by the tape of the NG-tube. He recommended using paper tape. The NG-tube is now taped rather loosely to avoid the rash. Hope Rachel don't pull it out again. She's 6lbs 8oz on Daddy's scale...1oz gain from last week. |
| Nov 25 | Mommy fed Rachel 75cc at 12AM. She spit up a little afterwards and fell asleep from 1AM to 5:30AM! That was the longest continuous undisturbed sleep for Mommy in a long while. It felt so good that Mommy wasn't able to sleep anymore after Rachel drifted off at 6:30AM. Rachel was very good during the day except she pull out her tube unexpectedly at 4PM. Good thing Daddy was able to leave work a bit early so Rachel don't have to starve. Mommy's too scare the put the tube in now, Rachel's just too sensitive about. Unfortunately, Daddy missed and Rachel did not let him get another chance. By 8PM, Rachel was still not in a deep sleep. Daddy tried again in desperation and got it in, but the tube placement could not be heard! (most likely because of a kink on the tube) The tube was pulled out, but Daddy felt confident he can insert it the even when Rachel cries now. He was right! He successfully inserted the tube while Rachel was crying. Rachel was promptly fed. She took only 13.5oz today because of the skipped feed. It looks like the rash on her face is getting worse. Mommy's gotta keep an eye on it. |
| Nov 24 | Rachel was very fussy after her feed at 4AM. Nothing was able to sooth her...not mylicon, not the bouncer, not Mommy's arms. Finally she tired out at 6AM and fell asleep until 7:30AM, when Daddy got up and fed her. She was again fidgety at the 12PM feed and took only 60cc. Rachek continued to be fidgety for the rest of the day and did not get to sleep too much. Daddy gave her a dose of Zantac in the evening (the cardiologist had said it's okay to give it to her) and she settled down a bit. She must have been exhausted when she fell asleep shortly after her 9PM feed. She had 435cc or 14.5oz today. Mommy's leave from work actually ends today. Mommy wanted to spend more time with Rachel and her employer had okayed 2 months of additional leave :-). That's 2 more months of undivided attention from the little precious munchkin. Rachel's getting 60-70cc/3-4 hrs. 30-60cc Pedialyte/day. 3mg Furosemide (Lasix)/twice daily. 15mcg Lanoxin (Digoxin)/twice daily. Mylicon as needed. |
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| Week 16 | November 17, 2003 to November 23, 2003 |
| Nov 23 | Rachel continued to eat well, taking 70cc at most of her feeds...totalling 450cc or 15oz for the day...that's a record for her! She slept really good during the night, stirring once at 3:30AM. Off to dreamland again right after Mommy fed her. She was a bit fussy with Daddy at 7AM and took a couple of hours to settle down. She was relatively calm the remainder of the day. |
| Nov 22 | Rachel was a piggy today. She took 65cc at 12AM, but wouldn't let Mommy sleep. She'd sleep for 15-20 minutes then make noise until Mommy pats her. This went on till 3AM when Mommy decided to feed her. There was no drawback! Mommy fed her another 65cc. She finally fell asleep at 5AM and woke up Daddy at 6AM for another 65cc. Mommy and Daddy were both too tire to get up to feed Rachel at 9AM. She was not too fussy until 10AM when Mommy finally got up to give her meds and fed her. Rachel slept much sounder during the day. When Mommy pull out Rachel's tube today, she noticed the cause of Rachel's agitation yesterday. There's a slight rash underneath her left nose which must have been itchy. There's also a rather large rash on her right cheek. Mommy is guessing Rachel was allergic to the tape that was used to tape the NG-tube. Mommy will place bandaids on those areas and use another tape. (not pretty, but hopefully it'll keep the irritation down). |
| Nov 21 | Rachel had a terrible night :-( She was fed at 12AM and put down at 1AM in her snuggle nest. She woke up 2AM and went back to sleep after Mommy patted her a little. She woke up and cried at 3AM. It looked like the tube was irritating her as kept batting at it. Eventually the tape came loose while Mommy was feeding her. She was very agitated at the same time, so Mommy had to stop the feed and wake up Daddy for help. Mommy added some tape on top of the loose tape (talking about a bad tape job :lol) while Daddy held those wading hands. Rachel was still very fidgety so Mommy and Daddy both had to stayed up to feed her the remaining formula. Rachel fell asleep soon after the feed at 4:30AM and woke up at 7AM. She was able to partially pull out the tube this time. Daddy tried to put it back and retape it, but there must be something wrong because Rachel would not stop crying afterwards. She screamed continously for about half and hour (longest Mommy and Daddy have seen her) before Mommy decided to pull the tube out. She calmed down a little so Mommy decided to tried the bottle. That was a mistake! She completely refused and started crying again. It took awhile to calm her. After Mommy gave up on the bottle, Daddy decided it's time to put a new tube in. So they waited until Rachel started to drift off to sleep, but every time Daddy got close with the tube, Rachel sensed it and started to cry again. After a couple of unsuccessful tries, Mommy and Daddy gave up and decided to just let Rachel sleep skipping the feed. It's now past 9AM, Rachel continued to fuss while Daddy call in to a meeting at work. She finally drifted off watching the mobile going around in her crib. At about 10AM, Daddy came down and decide Rachel was calm enough for the tube and put it in successfully. Mommy then promptly gave Rachel her medications and formula. They both were exhausted and fell asleep while Daddy worked from home. Daddy took Rachel upstairs to work with him in the afternoon as Mommy took care of some much neglected housework. |
| Nov 20 | Today was pretty much the same as yesterday. |
| Nov 19 | Rachel had a very good night. Daddy fed her 65cc at 12:45AM...she woke up at 4AM for another 65cc...fell asleep at 5:30AM and was up again at 8AM for more food. If only she can take more formula so she can sleep a little longer...Mommy will have to work on that. She was very fussy from 9AM until 12PM. Even with Mommy stopping the feed several times, Rachel only took 45cc at 12PM. She fell asleep soon afterwards. She took the 2:30PM feed but spit up a little right she finished...and back to sleep until Daddy came home from work at 6PM. She stayed awake for a couple of hours and then sleep again. Daresay she does sleep alot these days! PT was cancelled this week due to some "bug" at the center where the therapist works. She's 6lbs 7oz on Daddy's scale...2oz gain from last week. |
| Nov 18 | Rachel had a typical night. She slept after her 12:30AM feed...fussed a little at 2AM...hungry at 3AM (Mommy didn't feed her until 3:30AM). She was almost done with her feed when she spit up quite a bit, some sent in the syringe and some out of her mouth. She was fine afterwards and fell asleep. Daddy fed her at 7AM, she was quite hungry since she did not have enough at 3:30AM. Appointment with the Pediatric Cardiologist today. An hour was wasted waiting due to a busy receptionist that went out to lunch without informing the EKG tech of Rachel's presence. Rachel's EKG was good, no sign of increased toxicity from the digoxin. Her pulse and blood pressure were the same as the last visit. Her heart rate and breathing dropped slightly. She gained 3oz. Mommy asked the doctor her long range outlook. He said Rachel is subject to pulmonary hypertension, maybe around 6 months, develop when enough pressure is built up in the lungs that the blood crosses both ways through her VSD. Currently the blood is going from the left ventricle to right ventricle only...oxygenated blood from the lungs is flowing back to the un-oxygenated side and then flow into the lungs to be oxygenated again...hence her heart has to work harder to get the enough oxygenated blood. When the flow is both ways, the unoxygenated blood get mixed with the oxygenated and gets send to the rest of body. The body does not receive enough oxygen, hence cyanosis (blueness around the mouth, nose, extremities) is one of the symptoms of pulmonary hypertension. At that point, it's most likely too late to correct the VSD surgically because when the hole closes, the pressure that's built up has nowhere to go. Knowing this, Mommy and Daddy are still against heart surgery for Rachel. They don't want Rachel to go through a major surgery that she may not survive only to be taken away by some other not yet identified problem. Followup with the Cardiologist in 4 weeks. After the Cardiologist, off to the Pediatrician's to draw some blood to check Rachel's potassium levels. After that home...where everybody napped after a long day. While at the pediatrician's, Mommy and Daddy over heard the whooping cough is going around. Rachel had skipped the pertussis vaccine because of her neurological disorder. Better stay away from any coughers. |
| Nov 17 | Rachel was fed at 12:30AM with no problem. She woke up at 2AM, fussed a little...Mommy picked her up from the crib and moved her to the snuggle nest where she promptly went back to asleep. She woke up again at 3AM...hungry! (That's only 2.5 hours with 65cc) Mommy didn't get up to feed her until 3:30AM, then she was good until 8AM when Daddy fed her. She fussed until 10:30AM and slept the rest of the day. She's getting 55-65cc/3-4 hrs. 30-60cc Pedialyte/day. 3mg Furosemide (Lasix)/twice daily. 15mcg Lanoxin (Digoxin)/twice daily. Mylicon as needed. She hasn't spit up much since stop taking Zantac, but there were noticeably more arching during and after feeds. |
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| Week 15 | November 10, 2003 to November 16, 2003 |
| Nov 16 | Rachel had a terrible night. She was up at 2AM crying...fell asleep at 3AM..woke up again at 4AM...crying or screaming this time, so loud that it woke up Daddy. Her belly's very stiff during these episodes. Mommy don't know what's bothering her. She eventually calmed down enough to take 50cc and fell asleep at 5:30AM. Everyone slept later today :-) Needless to say, Rachel was tired all day and slept soundly. |
| Nov 15 | Mommy was totally exhausted and did not wake up for Rachel's feed. Daddy heard her cries at 5AM, got up and fed her. She was nice to Daddy and fell asleep right away. Mommy got up to feed her at 9AM. She was fidgety, spit up a little and was wide awake afterwards. She finally tired out at 11:30AM and fell asleep. She was fidgety during her feeds and her few wakeful moments all day. |
| Nov 14 | Rachel was very good up until after her feed at 4AM. She was fidgety and refused to fall asleep. Mommy was very tired cause she had trouble falling asleep earlier, so Daddy woke up and took over at 5AM. According to Daddy, she fell asleep soon afterward...just wanted to give Mommy a hard time! The Hospice Art Therapist stopped by and dropped off Rachel's footprint. She tried to do the foot mold, but Rachel would not stay still long enough, so no mold for the munchkin :-( |
| Nov 13 | Rachel was fidgety after her 1AM (midnight feed delayed because of the tube insertion problem earlier) until 3:30AM...is she trying to out do herself each night? Rachel's been enjoying her bouncer and mobile these days quite a bit these days. No responsive smiles yet but those bright eyes can track objects when she wants to. She does seem to stare into space most of the times...a real space cadet :-) |
| Nov 12 | Rachel started to be very fidgety during the 12AM feed. Mommy and Daddy had to stop it 3 times before she finished it. She continued to fidget to 3AM...where did all that energy come from? She woke up Mommy for a smooth feeding at 5AM, but spit up after Daddy fed her at 8:30AM. Rachel was awake and a bit fidgety when her PT arrived. She was not interested in PT. Mommy calmed her down a bit and she showed off how well she can hold up her head before drifting off to sleep. Trouble with the tube again...Daddy tried to insert it after Rachel's bath...will they ever learn? Daddy finally got it in an hour later, after Rachel had drifted off to sleep...she was fed and immediately spit up after her feed. What a little trouble maker! She's 6lb 5oz on Daddy's scale...gained 1oz from last week. |
| Nov 11 | Rachel was really fidgety after her 12AM feed. She finally spit up >10cc at around 1:30AM and then fell asleep at 2AM. She continued to be fidgety during and after her feeds for the rest the day, sometimes not finishing them. Is it possible she misses the Zantac? It's misserable to watch her struggle so. :-( The pharmacy delivered the digoxin...started giving it to Rachel at night, 0.3cc/twice daily. |
| Nov 10 | Rachel was a bit fidgety til 2AM at night, but after that she settled down nicely and did not give Mommy any more touble :-* Appointment with the Pediatrician today. He noticed Rachel was not doing as well as last seen...there's more retraction (using the muscles underneath the rib cage) in her breathing. He called the Cardiologist and they decided to start Rachel on digoxin (to help her heart pump), 0.3cc/twice daily. This drug does not interact well with Zantac, so the Ped said to stop Zantac until Rachel sees the Gastroentrologist (GI). The Cardiologist wanted to see Rachel next week. The appointment was made for Nov 18, which happened to be the same time as the appointment for the GI. Mommy had to reschedule the GI appointment to Dec 2. No G-tube for a while :-( Mommy also asked about 'saving' hospice care days. The health insurance company sets a limit for hospice care to 210 days. Since Rachel 'looks pretty good' right now, the hospice social worker had asked Mommy if she'd like to 'save' the days for later. The ped thought that was a good idea. Rachel's conditions is 'looking up' and the heart can go on for a while on medications. Mommy is still tossed and will post the question on the T18 board and see what other moms think. Rachel was 6lb 5oz on the Ped's office, gained only 5oz in one month. She's getting 55-60cc/3-4 hrs. 30-60cc Pedialyte/day. 3mg Furosemide/twice daily. Mylicon as needed. |
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| Week 14 | November 4, 2003 to November 9, 2003 |
| Nov 9 | Another small spit after the 4AM feed. Some of Rachel's uncles decided the drop by to visit the little 3 month old. Rachel was able to stay awake for a couple of hours with them. Daddy went with the uncles to visit Grandma who is still at the hospital. Some good news about Grandma...she can say a few things now...like her name, complaints when irritated. It's not much but definitely an improvement. Hope she will get better real soon. |
| Nov 8 | Rachel spit up a couple of cc at 1:30AM probably because Mommy overfed her (gave her 65cc) at 12:30AM :-) Guess the little munchkin was just not ready. She was a little fidgety after the spit up, but eventually drifted off around 2:00AM. Rachel witnessed her first lunar eclipse...alright, she really could care less :-)...but Mommy thought the moon was extremely bright and pretty afterwards. |
| Nov 7 | A typical day for Rachel. She lost a couple of ounces since Tues, probably due to the diuretics. Just hope the little munchkin will tolerate more formula soon so she can gain some more weight. Some trouble with the tube insertion today...Rachel was too alert after her bath. Daddy had to wait an hour before she was drowsy enough for the tube to go in without much fuss. |
| Nov 6 | Another uneventful night for Rachel. The Hospice Art therapist...she encourages people to express their emotions through art, came by and painted Rachel's footprints. Rachel did not like her feet painted and pressed at all. It took three tries to get a decent print. The therapist will come back next week to do an imprint, if Rachel will let her :lol: Rachel spit up once after her 9PM feed. Still getting reflux actions once in a while. |
| Nov 5 | Rachel continues to be really good at night! Mommy's been letting Rachel decide when she wanted to be fed at nights. Daddy feeds Rachel 60cc at 12AM and she gets up around 4AM for another 60cc. She likes to stay awake for a bit afterwards...not fussy, just lie quietly in her snuggle nest (a little portable bed that is placed between Mommy and Daddy) next to Mommy. She drifts off to sleep at around 5:30/6AM and wakes Daddy up at 8AM for her next feed. Rachel was up between 12PM and 3PM, so she was still sleeping when the PT showed up at 5PM. The PT, back from 3 weeks of honeymoon, managed to work in some tracking and ranging in between dozes. The pharmacy sent over the generic Furosemide instead of the brand Lasix...started it at night. 3mg/twice daily. |
| Nov 4 | 3 Months old! Happy Birthday! Pediatric cardiologist follow up today. Basically no change from last visit...EKG about the same...breathing is slightly higher. The Doctor was content to continue monitor but Mommy and Daddy felt it's better to start Rachel on the medication. The Doctor suggested to start on the diurectic Lasix first. This drug gets rid of excess fluids in the body and may help Rachel's breathing. Followup in 4-6 weeks. No spit up today, still some reflux actions. Rachel's 6lb 4oz on Daddy's scale...gained only 1oz from last week :-( |