The Hope Journal 2004

Photo Album	Date	Description
	January 7, 2004	Regular pediatric appointment. Age: 5+ mos. Weight: 9 lbs 1 oz. Length: 21.75 in. Given "Synagis" serum.
	January 16, 2004	6 month birthday. Weight: 9 lbs 4 oz. Length: 22 in.
	January 22, 2004	Hope had her first physical therapist appointment today. Debra will be working with her every Thursday for a half hour--playing, exercising, and massaging, with the aim of strengthening her muscles and improving her motor skills. This was also Hopie's first Chinese New Year celebration.
	February 2, 2004	Hopie passed the Automated Auditory Brainstem Response (AABR) hearing test in both ears. This was a follow-on test 6 months after the first good test.
	February 4, 2004	Regular pediatric appointment. Age: 6+ mos. Weight: 9 lbs 5 oz. Length: 22.5 in. Given "Synagis" serum and also vaccination boosters. The pediatrician is concerned about her condition ... she's had very labored breathing for a couple of weeks; she ran a temp of 100F over the weekend (which has since subsided). She consulted her cardiologist and they think it might be pneumonia or congestive heart failure. They want her admitted to the hospital for a few days of observation.
	February 5, 2004	Baby Hope admitted to B Children's Hospital.
	February 6, 2004	She has a virus, but not deemed to be pneumonia. She has congestive heart failure - they've scheduled open heart surgery for March 2nd to close the 2 holes in her heart. Her weight is still short of 10 lbs, as such they've put her on a feeding machine with a tube thru' her nostril to feed her 24 calorie/oz milk formula directly into her small intestine, dispensing a few drops every few seconds. They are starting her at 10cc/hour and gradually increase it to 30cc/hour (1 oz/hr.). Weight: 9 lbs 8 oz.
	February 8, 2004	Not going too well - she was vomiting a lot (green stuff) and they found that the end of the feeding tube had curled around, causing reflux.
	February 9, 2004	Forced feeding temporarily halted. Baby Hope has a fever of 102F. Weight: 9 lbs 5 oz.-- lost it all!
	February 10, 2004	Forced feeding restarted. Still spitting up some. IV administered for dehydration.
	February 11, 2004	The criteria for Hopie's discharge is stabilization of her temperature and of the forced feeding, and consistent weight gain. Their goal is to get her feeding 30cc per hour; and send the feeding machine and tubes home with us to keeping plumping her up for the (surgical) table.
	February 14, 2004	Baby Hope spends Valentine's Day at the Hospital while her brothers and sisters meet the "Cow".
	February 15, 2004	Baby Hope was discharged from B Children's Hospital this afternoon, just in time to celebrate Serene's birthday. Weight: 9 lbs 12 oz. That was a much longer stay than we anticipated.
	February 20, 2004	Hopie was re-admitted to B Children's Hospital this morning at 4 am with a temp of 106.3F and labored breathing. She's in for at least 24 hrs to see if they can bring the fever down. Also, several kids at home started getting sore throats, coughs, stuffy noses and sneezing in the last couple of days - that's not good for Hopie.
	February 21, 2004	We attend a local DS Support Network gathering and meet many other families for the first time. Many have children born with heart defects, and tell of their experiences. Dr. Hines operated on many of these children and gets rave reviews. We were told amazing stories about his work, including rebuilding the heart chambers of a baby born with practically no chambers, who is now a bubbly 2-year old. Baby Hope is discharged from B Children's Hospital tonight, her temp kept down by strong medicine.
	February 29, 2004	After returning from the hospital, Hopie seemed listless and cold for a day. Since then, she has had a good week ... she's been quiet and patient; no fever or problems with the feeding machine, no effect from her siblings with sore throats, coughs, and snoochies.
	March 1, 2004	Hopie went to the hospital for "pre-op". They checked her out and did blood work. She's just shy of 10 lbs. (still!). It's incredible that we've been pumping milk into her about 20 oz a day, everyday for 3 weeks, and she has hardly gained 1/2 lb. Where did it all go? The surgeon tells us all the risks of the procedure and we sign stacks of forms. Then we're sent home.
	March 1, 2004	It is the night before surgery, and it is quiet all thru' the house. All the "littles" have been put to bed, and the "bigs" are spending time before the Throne of Grace, fasting and praying for Hopie's healing and complete recovery.
	March 2, 2004	Surgery was scheduled for 07:30 a.m. local time. Hopie ran a temp of 102.9F at 04:00. We got to the hospital by 06:30. Temp of 102.7F. Given Tylenol. Yesterday's pre-op showed no bacterial infection or RSV in the blood; chest x-ray was clear. An ENT doctor tried to look into her ears to see if it's an ear infection. But she could only see the eardrum in one ear, which was fine. (As you may know, DS kids have abnormally tiny ear canals and are very prone to ear infections.) They can't find the mysterious cause of Hopie's nasty fever that has plagued her for 3 weeks. 08:00 Dr. Hines and the surgical team decided it was too dangerous to go thru' with surgery. A nasal swab was done to test for RSV again - this will decide how soon they can reschedule - if it's RSV, they'll have to wait at least 3 weeks, if not, then sooner. (They have not called about the result - I doubt it is RSV. She gets "synagis" monthly against RSV, and she has not tested positive for RSV yet.) Surgery to be rescheduled for when Hopie's fever has subsided and there is an opening on the surgeon's and surgery room calendars. She's on the short-notice list though.
	March 3, 2004	It's been a struggle with Hopie's nasty fever. First 24 hrs after coming back from the hospital, it went back and forth between 101F and 105F. Gave her Tylenol and cool sponge baths.
	March 4, 2004	Hopie's temperature has slowly come down to 100F. The other kids seem to have gotten over their coughs and colds. The surgeon's office called to reschedule the surgery for Tuesday, March 9th at 07:30.
	March 5, 2004	The mysterious fever is back at 102F - 105F. The pediatrician wants to see her to run more tests. Blood test showed an elevated white blood cell count, which usually means a bacterial infection. (At last, a cause maybe?) Through consultation with the cardiologist, they decide Hope should be re-admitted to hospital to deal with the fever before surgery. She still weighs 9 lbs. 15 oz.
	March 6, 2004	Hopie is re-admitted to B Children's Hospital this morning.
	March 8, 2004	Hopie's temperature is back to normal. They run more tests on her - CT scan to check for sinus infection, a fine scope to look at her eardrums. Tests show no infection. Doctors surmise her fever is from inflammation of the lungs, a condition not unusual for patients with heart defects. The cure is surgery to patch up the holes in her heart, but the catch-22 is she can't have surgery with the fever popping up. This is the best small window of opportunity we have, as her temp. has come down to normal and the surgeon will be on vacation next week.
	March 9, 2004	We arrived at the hospital at 06:30 and the nurses already have Hopie ready. She's wheeled down to pre-anesthesia and the anesthesiologist gave us a brief overview and then she's taken away from us at 07:15. Then began the hardest time - waiting (im)patiently. At 09:30 we get a call from the surgeon's assistant that the surgery has begun - it'll take about 1.5 hrs. At 11:00 we get another call from the surgeon's assistant that surgery was over. The surgeon met us personally and said it went well, he did everything he had planned and tells us a little about what he did. At 11:30 a.m. we got to see Hopie briefly as she was wheeled on her way out of surgery and into ICU. She was still unconscious and tubes were coming out of her every which way. Now, she'll just have to recuperate and we'll know by and by the full extent of her recovery. One item of concern: she is on a pacemaker because her heart is beating irregularly. Although this is standard practice to put the heart surgery patient on a pacemaker to restart the heart, there is a real concern here. Before the operation, the surgeon warned us that he'll have to sew pretty close to where the main heart nerve usually is to close one of the holes. With DS kids, often their parts are not where "normal" people have theirs, so the main heart nerve's position may be off. If that nerve is damaged, it would disrupt the beating rhythm of the heart permanently. If her heart does not beat regularly by itself within 8 days, then she would need a pacemaker for life. Please pray for a good outcome, for full recovery, that Hopie's heart will beat regularly on its own.
	March 10, 2004	From the bottom of our hearts, we appreciate everyone's pulling for us ... it's been a stressful several months, but we feel like we've crossed over to the other side of the mountain, now that Hopie's surgery itself is over. Besides the surgery, the next few days are going to be critical. At this time, the staff says that Hopie is doing better than expected with her post-operative recovery. They've stopped the sedation and she's awake, and kicking up a storm--kind of messes with the tubes and wires. If fact, she ripped out the "art line" in her right hand. Instead of putting it back, they are giving her nitric oxide to breathe, which opens up the alveoli. They have detached the big respirator this morning and she's breathing fine on her own. They will detach more of the artificial aids by and by.
	March 11, 2004	This morning, the doctor turned down the pacemaker and Hope's heart has been beating on its own to its natural rhythm ever since! The staff says that Hopie is continuing to do well with her post-operative recovery. One by one, the artificial aids are being taken off. At this rate, they think she can be moved out of ICU during the weekend. Thank You, LORD! And thank you for praying.
	March 12, 2004	Hopie misses Joyce's "Sweet Sixteen" birthday celebration during "March Madness".
	March 13, 2004	Hopie is continuing to do well with her post-operative recovery. This afternoon, she was moved out of Pediatric ICU and into regular room #663. She still has wires and tubes attached to her body as a precaution, but the pacemaker is off, she's breathing on her own, she's being fed by mouth and not through the feeding tube. At this rate, they think she can be released from the hospital this week.
	March 15, 2004	Baby Hope came home late this afternoon! Praise God! We were completely surprised by how soon it was, but she's been recovering so well, her doctors saw no need in keeping her in the hospital. All the wires and tubes were removed this morning, and after 3 hours of observation, they were ready to kick us out. She needs to heal from her wounds, and gain weight, for which she is taking 27 cal/oz. formula every 3 hrs, but other than that, she's "better than new". Thank You, LORD! And thank you for praying. Your prayers, assistance, cards, thoughts, and concern have helped to pull us through this ordeal. Frankly, I feel emotionally spent like a deflated balloon. After months of hoping for good news only to be given bad news at many turns, the incredible way things fell together in the last 7 days have been amazing. I'm certain it's because of the prayers of His people. Again, thank you from the bottom of our hearts.
	March 16, 2004	It's Hopie's 8th month birthday and all is well.
	March 26, 2004	Hopie has a follow-up checkup with the surgeon, Dr. Hines. He pulls all the bandages out and gives her a clean bill of health. Says there might be a little leakage in the right valve and may require a follow-up surgery when she's 40 years old.
	April 25, 2004	Since Hopie's heart surgery, she's now like a real baby - she kicks her feet, smiles, plays with her rattles, and rolls over. We think her breathing still sounds raspy; she's still not gaining a whole lot of weight, and she's still plagued by mysterious fevers up to 102F that come for a few days and goes. She left the hospital at 10.5 lbs, now she's 11 lbs.
	April 26, 2004	It's Hopie's first post-surgery examination with the cardiologist. They run a battery of tests to find the cause of the fevers, but with no definitive result. He's not concerned if they stay below 102F. He says the raspy breathing is from her upper respiratory system, which is not of a big concern. He gives Hopie a clean bill of health. He takes her off all her heart medicines. He doesn't think her right valve will need further work, but she'll always be a heart patient, needing check-ups at least once a year for the rest of her life. This is a good report ... this is as good as it gets ... the Lord be Praised!
	May 16, 2004	It's Hopie's 10th month birthday and all is well. Weight: 11 lbs 4 oz.
	July 16, 2004	It's Hopie's 1st birthday today! For a while we weren't sure we would see this day, but thanks be to God, we have arrived at this milestone. Since her open heart surgery in March, she has gained 2 lbs, not fantastic, but is still progress. She's thriving, and now feels like a "real baby" - active, happy, rolling around, playing with toys. Developmentally, she's only about a 5-month old. Weight: 12 lbs 6 oz.
	July 30, 2004	Hopie has a second post-surgery examination with the cardiologist. They run another battery of tests. Her lung capacity is still low and there is a small leak in her valve, both of which he feels will correct themselves with time. He gives Hopie a clean bill of health and won't need to see her again for a year.
	Sept. 16, 2004	Age: 1 yr. 2 mths. Weight: 14 lbs 8 oz. Hopie guzzles down her bottle in no time, starting to take solids, crawls into everything, but still can't sit up. She can play "so big", clap her hands on cue, wave bye-bye, blow bubbles and kiss. She hasn't had a fever for some months.