(...Watch this space for January, February, and March, whenever Nia gets around to writing about them...)
April 17
Corinna took Nia to a paediatrician in Fulda for a
routine check-up. The doctor closed her eyes as
she listened to Nia's heart through the
stethoscope. She heard a murmur and recommended
that we eventually get an ultrasound of Nia's
heart. Because we were only in Germany on
vacation, we had it done immediately. The
ultrasound showed oxygen-rich blood flowing back
out of her heart's left ventricle through the
mitral valve into the left atrium (and back toward
the lungs). Also, the muscle of the left ventricle
looked very weak. We were immediately referred to
Dr. Bauer, a paediatric cardiologist at the
Children's Hospital at the University of Giessen
(a regional medical centre for children's cases).
We left from the Fulda hospital and drove directly
to Giessen.
April 18
Doctors inserted a catheter into Nia's thigh and
snaked it through an artery to her heart. They got
a close-up look at the problem and confirmed that
it was
Bland-White-Garland Syndrome (only her right
coronary artery originated from the correct
source--she did not have a properly functioning
left coronary artery). Surgery was scheduled for
first thing the next morning to make a bypass to
function as her LCA.
April 19
Nia got a morphine injection in preparation for
her operation this morning. Surgery, performed by
Dr. Akintuerk, lasted over 3 hours (they had
estimated 5 hours). We went to Nia at the
intensive care ward. She was deep asleep, knocked
out from a combination of morphine- and Valium-
like sedatives. She also had IV's to thin her
blood, regulate her heart, raise her blood
pressure, and feed her glucose and minerals.
Doctors told us the operation went well. We held
her hands and felt her squeeze back.
April 23
Nia left the Intensivstation and was moved to the
Station Czerny recovery ward. At Czerny, she
continued to receive a blood-thinning agent via
IV. She seemed quite unhappy. Maybe she was hungry
or had pain. She eagerly drank some formula late
in the afternoon, but spit it all back up. Later
she was able to keep down a full 8 oz. bottle of
formula. After that, she seemed calmer and enjoyed
playing with her toys. It got dark around 8:30.
She drifted off to sleep.
April 24
Nia finished a prescription of blood thinner today
and was IV-free for a while until she got some
anti-biotics this evening. She showed a wider
range of emotions and was more interested in toys
and other distractions. In between, though, were
long periods of quiet staring.
Dr. Bauer did another ultra-sound. He said the
heart seemed to be pumping with more strength now,
though the mitral valve was still weak and the
middle wall wasn't completely flexible. He said
the duration of those repairs could be up to a
year. Mostly because of her bypass, Nia will need
an ultra-sound every few months.
May 3
(continuation of Nia's Easter Stay in the
Hospital)
Dr. Schranz, professor and chief doctor of the
cardiology clinic, inserted a catheter to inspect
Nia's heart. In the evening, he sat down with
Corinna and me to explain things. The operation
was a success, and he showed us the video of the
catheter probe to prove it.
He showed us the bypass, and how it functioned
compared to her normal (right) coronary artery
(RCA). Before the operation, the RCA had provided
all the blood to the heart muscle. However, the
blood was being shunted out of the heart through
another artery. During the surgery, the shunt path
was closed.
One of Nia's mammary veins, commonly used for
bypasses, was removed. It was connected to an
artery leaving Nia's left atrium, attached to the
outer wall of her heart, and connected to the
tissue of the heart muscle. We could see in the
video that blood was flowing through the bypass
and into a small portion of the network of
capillaries (collateral arteries) in the left side
of the heart muscle. We also saw how the right
side's network of capillaries had extended to
supply the left.
We saw the function of the mitral valve. Contrast
solution flowed back and forth between the
ventricle and the atrium (mitral
valve regurgitation), indicating an insufficiency of the valve. Dr. Schranz said the
problem had been worse before the operation, and
may continue to improve. The current severity is
between 2 and 3 (3 is worst). He has prescribed
Captopril and Tenormin (Atenolol) to reduce the
load on the heart, to help it strengthen itself.
Nia remained in hospital for 24 hours after the
catheter examination, then was released.
May 11
We visited Dr. Schranz for one last ultra-sound
before leaving Germany. He said the mitral valve
was not showing improvement, but all other heart
functions were fully recovered and now normal. He
added Lanitop (Digoxyn) to her prescribed
medications. He recommended close observation over
the next several months to witness the development
of the heart muscle in relation to the volume of
blood flowing back through the mitral valve.
May 17
Nia was seen by Dr. Burch, the paediatric
cardiologist from Oxford responsible for Milton
Keynes patients. He made an ultrasound of Nia's
heart as an initial observation. He said that he
was surprised how well the mitral valve
functioned--from reading her report, he had
expected worse. He recommended monthly general
exams by her paediatrician, and an exam by a
paediatric cardiologist such as himself every 3
months.
June has been a month of parties for Nia. Corinna thanked her co-workers for all their support during Nia's hospital stay and after our return to Milton Keynes by inviting them over for a barbeque on the 14th. Unfortunately, she failed to invite good weather, so we all had burgers broiled in the oven.
Father's Day was celebrated on the 17th with John getting a subscription to F1 Racing magazine from Nia (Playstation F1 2001 game free with the subscription!).
We had a party on the 18th for some reason. Oh yeah, Nia's first birthday (how could I forget?). Actually, two parties: Mama and Papa presented gifts from the family in the morning. In the afternoon, Nia's friends came to celebrate, including Imaan, Anna, Vanessa, Mohammed, Caroline, and Charlotte.
The Annual DaimlerChrysler Ball was on June 23. Oma flew from Germany to baby-sit for the evening and enjoy some time with her granddaughter. She brought along Nia's birthday present: a doll named Pia. Nia and Pia instantly became best friends.
We saw the Argentina Club Cup polo match on the 30th. Los Indios/AMG won the third annual Cup at Beaufort Polo Club. They defeated Hurlingham/Laird 7½-6 in a match which, played earlier than usual in the season, saw perfect weather conditions. Prince Harry stopped by - he was likely checking out the field for his father, who played the next day. The Prince of Wales helped the Beaufort squad to a 5½-5 victory over Dexia in a charity tournament.
Nia's visit on the 5th with her paediatric cardiologist, Dr. Oliver Stuemper, brought good news. Her oversized heart is not growing, but she is. That means she's growing into her heart, as expected. No change in the severity of her mitral valve regurgitation. Dr. Stuemper doesn't want to see her again until October. The sense of emergency regarding Nia's condition is finally fading away.
Nia drove (a little bit) on the 6th as we made our way to the Goodwood Festival of Speed, near Portsmouth. Corinna worked there (a little bit) on the 7th, and got the tee-shirt. The highlight of the event was the Little Tikes Centre.
While we were near the coast, we decided to take a quick peek at the English Channel. We stopped by Bognor-Regis and walked along the boardwalk.
Happy Birthday, Millennium Babies! Our antenatal group got together for a group birthday party on July 8.
Oma visited for a couple weeks beginning on the 12th. Opa flew from Germany on the 17th to join Oma.
Friday the 13th: A mobility milestone! Nia has begun to sit up on her own.
The Lucius ladies (Nia's aunt Sonja and niece Luisa) visited us. We spent the first weekend of August up North to see the Peak District and visit Chatsworth House.
Sonja and Luisa toured London alone a few times, including a visit to My Fair Lady. The Schells made the journey with them to London on the 9th. We rode the Docklands Light Rail, then walked under the Thames River to Greenwich. In the early evening, we rode the London Eye.
Frank, Silke, Daniel, and Michael Maloney flew from Stuttgart to visit us for a week. We spent some fun time at Willen Lake, Warwick Castle, Woburn Safari Park, and London.
Corinna borrowed a very pretty car over the Bank Holiday weekend (last weekend in August). On Monday, we drove to Blenheim Palace, birthplace of Winston Churchill.
(Also finishing up a bit of August.) Nia shared her workbench with Anna N. When Nia's not playing, she's working hard in Papa's office, usually trying to disassemble furniture or stereo equipment.
We flew to Stuttgart at the beginning of the month and stayed at the Stella Suites for a week. The whole family caught up with their old friends.
Nia has discovered almost everything in our house, including the fascinating world of closets.
Summer's over, and the weather is turning English. Time to play inside. "Play" means something entirely different once you're walking! Nia earned her Walking Award at GymBabes on October 17.
Oma, Mama, Papa, and Nia drove west on the 18th and did a tour through the Cotswolds. At the Cafe Dijon, Nia was fascinated by a leather head. Later in the day, she made friends with a giant bird.
Oma flew back to Germany on the 20th. Before Oma left, Nia demonstrated how to climb in and out of a box. Of course, she was too fast for Papa to get a camera. By the time the camera was ready, she looked quite innocent.
Nia went to her friends Anna's first birthday party on the 21st. As Anna's birthday is so close to Halloween, it was a Halloween costume party. Nia went as The Ballerina Ghost!
Nia hosted an NCT meeting on the afternoon of the 26th, so she began making plans over lunch at her desk. Mama helped her with the planning. Then she reviewed her skills: the Couch-Climbing Circuit, and Inserting Blocks into the Bucket. Finally, her guests, Isla and Daniel, arrived, and seemed to have a wonderful time.
Omi is visiting! On the 6th, Omi, Papa, and Nia went to Willen Lake. Nia fed the the ducks, then played on the train at the playground.
For Papa's birthday on the 7th, we went to the Iron Trunk Aqueduct carrying the Grand Union Canal. The aqueduct carries the canal (the water, boats, people, everything) over the River Ouse in Milton Keynes.
It's getting colder, but we can still enjoy walking outside. We talked to the ducks, geese, swans, and seagulls at St. Albans on the 10th.
Nia, Mama, and Omi went to Mead Open Farm on the 11th. Nia made plenty of friends, including a strange-looking... ram?
Our youngest daughter has been having a rough month (in a rough year). She started the month by staying at Birmingham Children's Hospital for a couple nights to undergo an investigative catheterization. We were not pleased by what we learned: Nia's bypass is not functioning properly. She will need to have more heart surgery.
While she was in the hospital, she contracted bronchilitis. Yuk! She coughed and cried for over a week. We thought it might cheer her up to get her Christmas present from Omi as a Nikolaus Day present (Dec. 6). She is crazy about her Smartronics computer. Now she can use the computer without being scolded!
After recovering from bronchilitis, Nia could finally get out and see the outside world again. Soon afterward, she got back to her silly self again.
Christmas
We wish you a merry
Christmas
We wish you a merry
Christmas
We wish you a merry
Christmas
And a happy new year!
(also, happy Hanukkah and 'Id al-Fitr)
We're celebrating Christmas in England with Oma and Opa. Click here to see all the photos.