| Week 3 |
August 17, 2003 to August 24, 2003 |
| Aug 24 |
Rachel was very good today (or maybe Mommy and Daddy did not notice because Rachel had many visitors). She still strains very hard and was fussy at night.
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| Aug 23 |
Rachel had another apnea episode today at 11AM. She was in the car seat making her pooping noise. Daddy was on the phone. When Mommy took Rachel out, she noticed Rachel wasn't breathing. Her face was blue and her heart was beating slowly. Mommy and Daddy thought they had lost Rachel when she gasped and came back. The episode lasted longer this time (maybe 5-10 minutes). Mommy and Daddy took Rachel to see the pediatrician again. She suggested the apnea may have been triggered by the act of pooping since it occured both times while Rachel was trying to poop. She also discussed with Mommy and Daddy about having a DNR and things to do in case Rachel does not come back.
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| Aug 22 |
Rachel had her first apnea attack at around 4:15PM today. Daddy and Rachel's aunt were taking pictures of her in the bassinet. When Daddy noticed Rachel's face turned blue. She came back after Daddy shifted her position. She was not breathing for abount 30 seconds. Mommy and Daddy took her to see the pediatrician. The pediatrician thinks the apnea may have been caused by reflux. The nurse showed Mommy and Daddy a few things they can do to stimulate Rachel when it happens again. Mommy and Daddy decided not to do anything else for Rachel and let her go when she's ready. Mommy and Daddy gave Rachel her first bath at home today.
Rachel had another bad night! She still had alot of gas and was straining very hard to poop. Mommy and Daddy kept Rachel in the car seat all night. Daddy recognized the sound she makes when trying to poop and takes her out before she gets all worked up.
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| Aug 21 |
Rachel's first appointment with the pediatrician. Everything is good. Her weight is still 4lbs 2oz.
The house central AC stopped working after the visit to the pediatrician and the garage door spring broke as well. Good thing Rachel's uncle was here to help Daddy fix the problems!
It was a rough night for Rachel. She has been fidgety all day after feedings (we now know it was gas). Daddy was not able to finish her 12AM feed. He decide to keep Rachel in the car seat as she seemed to find it more comfortable. At 2:30AM Rachel woke up and was very uncomfortable. Daddy pick her up and she screamed in his arms. Mommy and Daddy never heard Rachel so loud before. She relaxed after her soiled diaper was changed. Evidently, Rachel was having trouble pooping. She did the same at 6AM but it was not as intense.
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| Aug 20 |
The visiting nurses stopped by and checked Rachel. She is 4lb 2oz. They will make sure Rachel gets her feeding supplies. They will also start the early intervention process.
Daddy increased Rachel's feed to 36cc/3hrs as instructed by the neonatalogist. Rachel did not take much by the bottle. Mommy now knows Rachel makes noises while sleeping so she did not get up to check every 5 minutes so everyone had a good night. ;-)
Rachel's aunt, uncle and little cousin from Massachusetts came to visit and stayed for a couple of days.
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| Aug 19 |
Rachel is coming home today! Mommy and Daddy went to ToysRus and bought her a bassinet with the gift cards Rachel received before picking her up from the hospital. She is now back to her birth weight of 4lbs. She took 22cc from the bottle at 12:30PM. She passed the hearing test and received the HepB shot before going home.
Rachel was an angel on the first day home. She ate, slept and pooped just fine. However, Mommy was up all night because she was not used to the noises Rachel makes while she sleeps. At 4AM, Mommy finally picked Rachel up and took her to the big bed for the rest of the night.
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| Aug 18 |
Rachel is two weeks old today! The neonatalogist told Mommy and Daddy Rachel can go home tomorrow! Mommy and Daddy are ecstatic! The formula was switched to NeoSure 22 cal/fl oz sometime before 12PM today. She is getting 35cc/3hours.
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| Aug 17 |
Rachel is doing fine in the NICU. There is still not much success with the bottle. Mommy and Daddy decided to bottle feed her only twice a day for at most 30 minutes.
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| Aug 16 |
Rachel got her first bath. Her weight is still at 3lbs 14oz. She took 16cc at 12PM , 15cc at 3PM and 12cc at 9PM from the bottle. Mommy inserted the NG-tube today! She's ready to take her baby home!
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| Aug 15 |
Rachel is out of the isolet and in a regular crib today. Daddy was unsuccessful with the NG-tube because Rachel gave him a hard time. The tube kept coming out her mouth. She cried so hard that Mommy saw tears coming out of her eyes. Finally the nurse was able to insert the tube successfully, after doing the same thing daddy did making the tube come out her mouth. Rachel took 26cc from the bottle at 12PM and not much at 3PM and 6PM. She's 3lb 14oz today.
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| Aug 14 |
Rachel weighed 3lb 13oz today. Daddy passed the NG-tube today! twice because Rachel decided to pull the first one out :-o
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| Aug 13 |
Rachel was lazy today. She only took 17cc at 11PM and 2PM and almost nothing at 5PM. It was decided to cut back on the bottle feed so Rachel's little heart does not get taxed too much.
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| Aug 12 |
Mommy tried bottle feeding today. Rachel took approximately 25-30cc at 11AM and 2PM. This is very encouraging to Mommy.
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| Aug 11 |
One week old today! Mommy took Rachel's temperture and changed her poopie diaper for the first time. Mommy also tried to check the NG tube placement but had the stethoscope upside down so it didn't work too well :-). Mommy and Daddy fed her then left for some lunch. They came back at 2PM to feed Rachel and end up staying until the 5PM feed as Rachel was alert for the 3 hours.
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| Week 1 |
August 4, 2003 to August 10, 2003 |
| Aug 10 |
Rachel was transferred to the hospital closer to home! The other hospital did not even call Mommy and Daddy to let them know she was being moved. That was outright unprofessional of them since Mommy and Daddy could have drove 60 miles for nothing. Rachel is doing just fine in the new environment. She even had an outfit on! The nurse showed Mommy and Daddy how to check the NG tube. They fed Rachel 33cc through the tube. Rachel is on 33cc every 3 hours feeding schedule
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| Aug 9 |
Rachel has the NG (naso gastro) tube in today. The OG tube was interferring with the bottle feed. She takes about 15cc by mouth and 15cc by tube. She is off the IV fluids. She is breathing well, poops and wets diaper regularly. Many of Rachel's aunts and uncles came to meet Rachel today. (probably too many as the nurse was a little bit annoyed)
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| Aug 8 |
Mommy could not make the 60 mile trip down to see Rachel today :-( Mommy found some comfort in reading about other T18 babies' journeys online. While Daddy made the trip alone to see Rachel. Rachel had the OG (oral gastro) tube in. She was taking some formula by mouth and the rest by tube totaling 30cc. The hospital closer to home does not have room for her yet.
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| Aug 7 |
Rachel moved to the NICU annex. She is still on IV fluids and started to take a little formula. The geneticist stopped by to speak to Mommy and Daddy. He confirmed the diagnosis of full trisomy 18 via the FISH test. All 20 cells tested had an extra 18 chromosome. It is not a translocation and likely occurred during the mieosis stage of the egg due to Mommy's age. Spoke to the Neonatologist. Echo cardiography confirmed the VSD, double outlet right ventricle. Outlook can be months or longer. She will work on transferring Rachel to a hospital closer to home. She will also give the order to start tube feeding so Mommy and Daddy can take Rachel home as soon as possible.
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| Aug 6 |
Mommy and Daddy held Rachel for the first time! They went home without Rachel.
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| Aug 5 |
Rachel is still in the transitional nusery because the NICU is full. She is on an IV and no other machine for life support. She is kept in the isolet in the NICU to keep warm. Mommy's family came to see Rachel. Unfortunately, the nusery was very busy and not every got to see her. The geneticist stopped by Mommy's room after examining Rachel. He informed Mommy and Daddy he is 99% certain Rachel is T18 based on his clinical exam. She has many of the T18 physical traits: clenched fists, rocker bottom feet, malformed ears and skin folds on the back of her neck. This diagnosis will be confirm by blood test in 48 hours. He told them the outlook is very grim. Most T18 children don't leave the hospital. Mommy and Daddy's world suddenly collapsed. They cried for hours and were sorely in need of information on T18. They did not want to talk to the geneticist who had only statistics for them, so they decided to go home as soon as the doctor could discharge Mommy. That means they had to leave Rachel in the NICU :-(
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| Aug 4 |
Rachel was born @5:59PM weighing a little over 4lbs a was 16.5 inches long. She was on the C-PAP for a couple of hours after birth
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