Month: August 2004

Tuesday, 31 Aug 2004

Tuesday, 31 August:

Big News # 1 Gabriella has topped the 9 pound mark and is still growing!

Big News # 2 We now have a date for Gabriella’s heart surgery at Stanford – 28 September 2004.

The surgeon who will perform the operation, Dr John Lamberti, is in Hawaii this week and we are scheduled to meet with him this Thursday. We have great faith and confidence in the Stanford medical team, as they are exceptionally skilled in this type of surgery.

Please take a moment to read the following story about an operation the Stanford team performed on a tiny baby: Packard Heart Surgeon Performs Operation on Smallest Infant.

This morning we headed to Tripler Army Medical Center (TAMC) to meet with Gabriella’s Cardiologist, Dr. Mahnke, regarding her elevated temperature and the associated tests. All of the tests came back negative, so it is doubtful she has an infection. Nevertheless, we continue to give her Tylenol to keep the fever in check and that seems to be working.

Thank you for your prayers.

Monday, 30 Aug 2004

Monday, 30 August: Yesterday’s “Day of Rest” was followed by a busy Monday. Gabriella wolfed down this morning’s 0600 (6 am for the civilians) feeding of 75 ml and then dropped off to sleep.

About 2 hours later she was making lots of noise and acting fairly unsettled. When she failed to settle down after her 0900 feeding we knew something was wrong. By the time we reached the hospital, her temperature was almost 102 F degrees – well beyond the 100.4 F, “return threshold” set by the doctors when she was last discharged.

The doctors gave her Tylenol to bring down the fever while she underwent testing to look for infections. Sample collection, which included two blood draws and a catheterization for urine, left Gabriella worn and tired and Dad a little grayer. Initial test results appeared normal in all areas, so an infection is probably unlikely – Whew!

We return to hospital tomorrow for further evaluation. On the brighter side of things, Gabriella’s weight is up to 8lbs 12 oz.

Thank you for your prayers.

Saturday, 28 Aug 2004

Saturday, 28 August: 28 August: We had a bit of a rough day today as we tried to keep Gabriella in balance. She seemed to be running a bit of a fever and her breathing seemed slightly labored – thankfully both remained below the “return to the hospital immediately” criteria, set by the doctors when she was discharged.

On a positive note, Gabriella continues to eat well each time she receives a bottle. The doctors continually stress the importance of continuing her bottle feeding, even though she has the feeding tube, as it will be important for her to feed manually following her operation. All for now.

Thank you for your prayers.

Friday, 27 Aug 2004

Friday, 27 August: New Photos Gabriella was discharged from the hospital late today once the doctors were able to evaluate the test results from her blood work – OUCH.

As always Gabriella was incredibly brave, barely letting out a yelp as they tried to find her vein. Once home we reestablished the feeding, monitoring, medication, and sterilization stations we use to look after Ella.

Our kitchen more and more resembles a M*A*S*H unit, as each time we return from the doctor’s there is an additional medication or piece of equipment. Still, we manage to smile while we keep all of the balls in the air.

Thank you for your prayers.

Thursday, 26 Aug 2004

Thursday, 26 August: Gabriella continues to gain weight (3.60 kg or 8 lbs 8 oz) as the doctors “fine-tune” the medication portion of her treatment plan. Ironically, it is the increases in Gabriella’s diet that are the driving force behind the need to fine-tune her medications. Gabriella literally receives twice the volume of formula – 600 ml vice 300 ml. That increase, which enables her weight gain, places extra demands on Gabriella’s already fragile heart and circulatory system.

Previously, her “resting” heart rate was 140 bpm, now it is up to 160 bpm. To address this, the doctors use diuretics to reduce the volume of fluid in Gabriella’s system; as well as drugs, known as “ACE inhibitors,” which dilate certain key blood vessels in her body to reduce her blood pressure. In short, they are able to reduce the workload on Gabriella’s heart by managing volume and pressure.

Being in the hospital during this process offers decreased risks and precise monitoring of how Gabriella responses to the adjustments in her medications. For Mum and Dad, the choice was simple. Lucy continues to do remarkably well despite all of the disruptions in her life. She enjoys playing with all of the toys in the “playroom” each time she visits “Gabi – Ella.” All for now.

Thank you for your prayers.

Wednesday, 25 Aug 2004

Wednesday, 25 August: In most instances, admitting one’s child to the hospital is an emotional and upsetting ordeal. We felt none of that, primarily because of the outstanding people working on Tripler’s Pediatrics Ward. When GG returned to Ward 7B yesterday, she was greeted with open arms and lots of smiles.

The doctors, nurses, medics, and other staff members are exceptionally professional and yet, incredibly personable. We feel so very blessed to have them on our team. Please take a moment to remember Gabriella’s caregivers in your prayers.

Photos of GG with her many caregivers are now posted.

Thank you for your prayers.

Tuesday, 24 Aug 2004

24 August, Tuesday: Brief update (1 PM, Hawaii Standard Time) – Last night Gabriella had a rough patch…high heart rate and respirations.

Unclear at this time if related to new medication or just increased heart failure. Met with Dr. Mahnke this morning and he re-admitted Gabriella to the hospital for further evaluation. Both Mom and Dad are pleased with Dr. Mahnke’s decision, as it is the low-risk course of action.

Bottom line: this is not a crisis, just prudent medicine. Visitors are welcome: Room 10, Pediatrics Ward, 7th Floor (Oceanside), Tripler Army Medical Center – No need to call first. Finally, GG’s weight was up again today another ounce…another step forward. As always, thank you for your prayers.

Monday, 23 Aug 2004

23 August, Monday: Lucy stayed at home with her new best friend Michelle, while Mom, Dad, and Gabriella went to TAMC for the check-up with Dr. Mahnke. Gabriella’s weight today was 3.76 KG or 8 lbs 4.6 oz) Great News…”Praise the Lord and pass the formula.” That was the “2-Steps Forward” portion of this update, now for the “1-Step Back.” Dr. Mahnke is concerned the severity of Gabriella’s heart failure may be increasing.

Now don’t panic, the term “heart failure” in this context is not the same as in adults – where heart failure means your heart stops and the harps start. In this instance, the term “heart failure” refers to the lack of efficiency when Gabriella’s heart beats. We all remember from high school biology that human hear has 4 chambers. Two of those chambers – the Ventricles (left & right) – do the majority of the pumping work. The right ventricle pumps blood to the lungs and the left ventricle pumps blood to the rest of the body.

The hole in Gabriella’s heart, which is known as an “A/V Septal Defect,” is in the interior wall that separates the two ventricles. At birth, muscle tissue surrounding the lungs keeps the blood pressure in the lungs higher than in the rest of the body. Consequently, blood tends to travel to the rest of the body vice the lungs, since the blood pressure in the body is lower than in the lungs.

However, as Gabriella gets older, the muscles surrounding the lungs dissolve. Consequently, the pressure in her lungs decreases and more blood flows to the lungs instead of the body. In order to meet her body’s blood and oxygen needs, Gabriella’s heart must beat faster and faster. That increasing inefficiency is what is meant by the term “heart failure.”

Lastly, it is important this process occurs prior to surgery, as those pesky muscles surrounding the lungs, if present, may cause problems during and after surgery.

Dr. Mahnke prescribed a medication, CAPTOPRIL, which should lower the blood pressure in Gabriella’s body, thereby reducing the workload on her heart. We meet with Dr. Mahnke tomorrow to evaluate all of these issues. Details to follow…

Thank you for your prayers.

Sunday, 22 Aug 004

22 August, Sunday : Today was a quiet and restful day. Gabriella ate and slept well throughout the day. Dad and Lucy managed to sneak away for some swimming pool time while Mum looked after Ella.

Tomorrow we head back to TAMC for another weigh-in and visit with Gabriella’s cardiologist, Dr Mahnke. We are especially eager to see Dr. Mahnke, as he was on the mainland during GG’s hospital stay. We will post the results of that visit as soon as possible.

Please know that your kind words and prayers are an inspiration to our family.

Thank you for your prayers.

Saturday, 21 Aug 004

21 August, Saturday : Gabriella’s progress while in the hospital was finally confirmed during today’s weight check. She weighed 3.680 Kg or 8 lbs 2 oz. As such, her weight gain was much closer to the one ounce per day expected of little ones her age.

After a final round of poke, prods, and listening, the doctors said she could go home. As usual, paperwork and bureaucracy slowed the discharge process. Nevertheless, we still managed to escape by mid-day.

Once home, everyone settled in for a well-deserved nap. When we woke, we saw that GG had managed to completely remove her Nasal Gastric Tube (NGT). The wonderful staff of the Pediatrics Ward agreed to help – they re-admitted Gabriella and re-inserted the NGT.

Once the position of the NGT was confirmed by an x-ray, we were discharged again. The whole process took just over 3 hours – Gabriella now wears little mittens so she is unable to repeat that little trick.

Back home by 9 PM, we settled in to our nightly routine. It was wonderful to have our little family back together again in Kailua.

Thank you for your

Friday, 20 Aug 2004

20 August, Friday: Today was a relatively slow day, with lots of naps and plenty of eating. GG shattered all previous records by sucking down an amazing 650 ml – approximately twice the volume she consumed just days ago. Gabriella’s weight continues to be a mystery, as today, she again weighed 8 lbs 5 oz. While none of the doctors or nurses believe she could have gained 7 oz in 36 hours, the fact her weight remains at 8 lbs 5 oz for a second day has them scratching their heads.

Regardless, Mom and Dad are both relieved to see her weight finally moving in the right direction. Gabriella did so well on yesterday’s tests that the doctors decided to hold off on the “modified Barium” exam. Ella was especially pleased, as she was not looking forward to drinking the Barium cocktail for the test.

Finally, the doctors have hinted that Gabriella may be discharged tomorrow, if things continue to go well. So we are all saying our prayers for a family reunion this Saturday. That’s all for now.

Thank you for your prayers.

Thursday, 19 Aug 2004

19 August, Thursday: GG’s first evaluation today was with the Speech Pathologist, Lorna, and the Occupational Therapist, Sandy. They watched Gabriella bottle feed in order to evaluate her ability to suck, swallow, and breathe. They were very impressed with her abilities in all areas and gave GG high marks overall.

However, Lorna cautioned that the ease and convenience of NGT feedings may reduce “GG’s” desire to bottle feed.  Accordingly, they recommend 15-20 minutes of bottle feeding prior to the NGT feeding, so that her suck, swallow, and breathing skills continue to develop.

Next, the nutritionist, Major Desrosier dropped by to explain the process he will use to develop the optimal diet for Gabriella. His task requires balancing calories and volume against Gabriella’s ability to tolerate the volume and process the high-protein formula. After just a short while, Gabriella captured his heart and all he wanted to do was play with her. They became fast friends and the Major gave “GG” one of his secret foot massages. Gabriella was asleep in minutes and the Major went off to crunch some numbers.

The final test of the day was the upper gastrointestinal (upper GI) exam. The radiologists injected Barium into Gabriella via the NGT in order to evaluate her esophagus, stomach, and the first part of the small intestine. Bottom line: No problems were detected. Tired from all of the day’s activities, Gabriella spent the rest of the day napping.

Yesterday, Gabriella “ate” 530 ml (17.5 oz) of formula – topping her previous high of 425 ml. Gabriella’s weight today was off the charts and as such, probably inaccurate. She weighed in at 8 lbs 5 oz. Ideally, she should gain 1 to 1.5 oz per day on this diet. Thus ends another busy day.

Thank you for your prayers.

Wednesday, 18 Aug 2004

18 August, Wednesday: Gabriella was admitted to the Tripler Pediatrics Ward at around noon today. “FAILURE TO THRIVE” – the official reason listed on the admitting paperwork – provides a painfully accurate synopsis of Ella’s situation. Now 8-weeks old, she has just managed to climb back up to her birth weight of 7 lbs 14 oz. The purpose of this hospital visit being two-fold: 1. To determine if there are any physiological reasons, other than her heart defect, that are impeding Gabriella’s ability to eat and gain weight. 2. To determine whether Gabriella will gain weight if her caloric intake is increased.

Shortly after arriving on the Pediatrics Ward, a Nasal Gastric Tube (NGT) was inserted into Gabriella’s stomach via her right nostril. She bravely tolerated the procedure and received her first “low-effort” meal just minutes after the position of the NGT was confirmed by an x-ray. Once her little belly was full, Ella settled in for a well-deserved nap. Meanwhile, Mom and Dad met the Pediatrics Ward doctors and learned about the tests and evaluation Gabriella would undergo in the next few days. These tests, which include: an “Upper Gastrointestinal” exam, a “suck, swallow, and breathing” evaluation, a nutritional evaluation, and a “modified Barium” exam, all focus on answering the two key questions above.

On the lighter side, the nursing staff immediately took to Gabriella. They dubbed her “Gee Gee.” (the same nickname Dad uses for Gabriella). When we inquired why “Gee Gee,” our nurse explained that since Mom had checked the “do not release personal information” box on the admitting forms, the staff was not even allowed to put her last name on their status board. Instead, they opted for her initials “G. G.” Dad loved it and so did GG! Tomorrow will be a busy day of tests and lots of feeding.

Thank you for your prayers.

Tuesday, 17 Aug 2004

17 August, Tuesday: Late this morning we took Gabriella to TAMC for a weigh-in. She tipped the scales at 7 lbs 12 oz, a loss of 2 ounces. Given the recent “dip” in her eating, Mom and Dad were not surprised by the loss.

Our next course of action is to admit her to the hospital tomorrow for several days of evaluation and testing. A key component of her treatment will be a nasal feeding tube. Ella will receive supplementary amounts of formula via the tube, if she does not eat a specified amount in 30 minutes.

Continuing to feed “manually” for 30 minutes is import because Ella needs to develop her swallowing coordination and muscle tone. Mom and Dad are hopeful and fairly confident that Gabriella will “plump-up” rather nicely during her visit.

Dad will be with Gabriella throughout her stay in the pediatrics ward, Mom and Lucy will provide logistics support – Starbucks for Dad and Snuggles for Ella – during their frequent visits. Details to follow…depending upon internet availability at the hospital.

Thank you for your prayers.

Monday, 16 Aug 2004

16 August, Monday: Gabriella’s flight path over the last few days has been somewhat erratic. On Saturday, she came close to going over the 400ml (13.3 oz) mark. She fed consistently throughout the day and ended up with a grand total of 395ml – Mom and Dad were both pleased.

On Sunday, Gabriella embraced the “day of rest” philosophy – eating only 250ml (8.3 oz, a two-week low) and sleeping for most of the day. Her listlessness and lack of appetite raised concerns but since she showed no other negative symptoms we just monitored her closely.

On Monday, Gabriella returned to her “normal” eating and sleeping patterns, consuming 350ml (11.6 oz) and napping after each meal. Looking back on the last few days, it seems Sunday was just another example of the “Two steps forward, one step back” progression we are experiencing on this journey.

Although Mom and Dad are both getting better at identifying and coping with these occasional “air-pockets,” we still get “white-knuckles” during the weightless moments of the freefall.

We plan to take Gabriella in to TAMC for a quick weigh-in and check-up on 17 Aug, since her next scheduled appointment is not until 23 Aug – details to follow. Please know how much your words of encouragement in the “Guest Book” and your Emails mean to us.

And as always, thank you for your prayers.