The Frederick Family Weblog

2007-12-05T23:12:00.000-06:00

It been about a year since we've used this thing, and we've got a LOT to share, so it's time to fire it up again.

We hope each and every one of you had a wonderful Thanksgiving. We are looking forward to Katia’s adoption day on December 8 [home for four years!!], Katia's birthday on December 11 [Eight years old!!], and Christmas.

Nora is scheduled for her major surgery on December 11th, the only available date before the end of the year, and unfortunately - Katia’s birthday. We have chosen the Colorectal Center for Children in Cincinnati for her procedure.

While planning for what we thought was a 'simple' procedure to correct a urogenital sinus with the medical team at Children's Hospital in St. Louis, we consulted with another surgeon for a second opinion who emailed a digital photograph of Nora's condition to a former colleague in Cincinnati. Hearing little else, we proceeded with the plans to correct her condition as planned. A few days before the scheduled surgery, we consulted with the surgeon who was suddenly going into more detail about his plans and aroused our suspicions.

We emailed Cincinnati that evening and received an immediate response from Dr. Levitt. He advised us that he immediately recognized Nora's condition [even from an e-mailed image!] as a rare posterior cloaca - a term NEVER used by the St. Louis surgeon. Dr. Levitt explained that his team has patients from all over the world, and they have treated 40+ posterior cloaca while St. Louis Children's has statistically treated 2-3, and probably not by anyone who would be on Nora's surgical team. He advised us that we were fortunate not to have gone through with the surgery in St. Louis. His team currently performs more corrective procedures than initial surgeries, and receive several frantic calls a year from inexperienced surgeons in the middle of operations seeking guidance. We are so lucky we found him. The misdiagnosis and the effects from the surgery in St. Louis could have affected Nora for the rest of her life.

Nora had a 3D scan in Cincinnati on November 30th that will allow the team to 'virtually' plan Nora's surgery. We will be leave December 9th and Nora will be admitted the next day. She will be heavily sedated on morphine and/or an epidural for several days and then in recovery, for a total of 14 days in the hospital. She may also have a colostomy bag for two months but we are hoping that is not the case.

Melyssa will stay in Ohio and Dave will travel back and forth, bringing Katia for the weekends. We are so happy to have our mothers and friends to help care for Katia while we are away from her and we know she will be spoiled rotten by the time we get back. The plan is for ALL of the Fredericks to be back in Ballwin before Christmas. Nora will then have to travel back within two months to go through anesthesia again and make sure everything is in working order and remove the colostomy bag if she has one. Then hopefully she will be completely finished with surgeries and Dr. Levitt reports that nobody will ever know from her body that there was ever a problem. We will be so glad to be finished and move on from Nora's weekly doctor visits.

We will keep everyone updated on her recovery and we thank you in advance for your thoughts and prayers!

Love, Dave, Melyssa, Katia and little Nora.

2006-11-10T12:38:00.000-06:00

Time for a LOOOONG overdue update!!

Thank you SO much for all your words of support and encouragement in my time of transition. My 'computer focus' has been on finding the next step in my career, so I haven't updated in a while. The good news is that I've accepted an account manager position with Gulf South Medical Supply [gsms.com] and am looking forward to the challenges and opportunities that come with an undercultivated sales territory.

Enough about me.

Nora and Katia are doing WONDERFULLY!!

Nora has grown into a beautiful little 4-1/2 month old.

She is hitting all of the milestones she should be. She is giggling, following objects, recognizing Mom, Dad & Sis, and giving the biggest smiles you can imagine. We are still working on getting her schedule regulated. She's pretty erratic with her napping, and she has gotten in the habit of 'snacking.' She will eat tiny quantities numerous times throughout the day instead of four or more ounces every four or more hours. She still is getting up 2x a night, but we're stretching that out, too.

Katia is an AWESOME big sister. She is very helpful, and actually postponing her rationed 'TV time' to 'hang out' with Nora. She is very supportive and encouraging to Nora's progress, but a little cranky when Nora inevitably wakes her when it's time for the 5:30 feeding.

Katia did really well with soccer this year...

...and is now active with Brownies (junior girl scouts) and Kindermusic.

Thanks for reading. We look forward to hearing from you!!!

2006-07-21T22:59:00.000-05:00

Nora came home today!

Thanks to the support, thoughts and prayers from our wonderful family and friends, and of course the talent and drive of the medical team at St. Louis Children's Hospital, we finally brought our 17 day-old daughter home to her family. Her eating has increased, and her recovery from the procedures she has had to endure has been stellar.

Katia is excited about mentoring her little sister, and Mom & Dad are excited about irregular sleep patterns and lots of laundry.

There was some apprehension from cardiology in the early hours of the day because of these 'episodes' she has been having. They have been calling it SVT. Essentially, her (machine-monitored) heartrate, which should be 120-150 BPM, would register 250 and higher. They had to shock her out of it by placing an icepack on her forehead. This happened 3 times in the last week. After a full exam by cardiology, they determined that it was probably a read error by the monitor. Wow - thanks for freaking us out, though!

So we're home, and as I'm writing this, Nora is squeaking in her sleep in her bassinet next to me, because it's getting close to the midnight feeding.

Thanks again for all of the cards, emails, comments, thoughts, hopes, prayers. Every one of them means so much to us. Keep reading and I'll keep writing.

New picture tomorrow!!

2006-07-21T17:20:00.000-05:00

Nora's Coming Home!!!

They've cleared her, and she is all set for release today at noon!!!

2006-07-18T20:46:00.000-05:00

Great News!

Nora's MRI scan results came back and she passed with flying colors!

The spinal scan showed no tethering as was expected from an initial examination upon her admission to Children's. Tetheringcan be a symptom of children with VATER diagnoses, but they found her spine to be healthy and without abnormalities.

The brain scan showed minute calcifications that could have been a result of a virus that she had in early fetal stages, but give the docs no cause for alarm.

All in all, FANTASTIC news.

On a sour note, she had another 'episode' where her heart rate rose above 200 and they had to shock her out of it by placing an ice pack on her forehead. They seem to think that this is, well, not common, but not uncommon either. Sometimes little ones are "wired" with multiple signals, and her heart receives the cue to beat from two sources, and usually it works itself out within a month or two. As long as the cardiology department at Children's Hospital is not concerned, neither am I.

All of her nurses love her. One of them gave her a blanket that was hand knit and shipped from her Gramma in Minnesota. Another one brought in a handmade quilt. In addition to their being very caring and knowledgeable, they are sweet as well.

They all keep insinuating that she's going to be leaving soon (!!!)

2006-07-17T23:01:00.000-05:00

Coming on Tuesday: Ureterocele relief & MRI results

Today Nora had an MRI on her brain and spine.

Her medical team is keeping an eye on a lot of different systems within 0ur little girl because she has symptoms of VATER syndrome. The acronym represents anomalies in the patients' Vertebral, Anal, Tracheo-Esophageal and Renal systems. The A is fairly mild at this point and only presents as a shortened perineum, which is merely cosmetic and will be repaired as an outpatient surgery in the future. The T & E was repaired on her birth day.

The R has taken the form of a Uretercele, which is basically a pouch in the wall of her bladder that prevents free urine flow. There is also a duplicated removal system from the kidney to the bladder which can 'back up" and cause infection. Tomorrow the urology team will make an endoscopic incision in the pouch, so there is no reflux. This too will be repaired at a later date with an outpatient procedure.

That leaves us with the V. We will have the MRI results tomorrow.

Our thoughts are with our little one tonight.

2006-07-15T15:15:00.000-05:00

Tube Free (Mostly) and Open-eyed

Our little firecracker had both chest tubes removed Today!!

She already seems SO much more comfortable. Before we could just feel her pain radiating from her tiny cries. This afternoon, when she cried, we just put a bottle in her mouth, and she happily drank her lunch. We even tried to encourage her to try the milk straight from the source, but she was just too hungry to be patient, so we stuck with the bottle for now. Katia was so overcome with emotions from seeing her baby sister cry that she started a little herself. After comforting her, we assured her that there will be quite a bit of crying in the months to follow.

Nora's intake of milk is averaging about 35mils per feeding but it needs to be about 50-55 before she can come home to us. There is still a PICC line in her foot for the oh-so delicious Intralipid fatty emulsion solution filling in for the other 15 mils.

Here we can finally behold her beautiful eyes:

2006-07-12T23:46:00.000-05:00

Mom Juice

Today we were able to feed Nora her first bottle of mother's milk. She's still working out the timing of sucking and swallowing, so she ended up missing out on half of it. It's comforting to know that she's getting something into her stomach.

2006-07-11T22:14:00.000-05:00

Two Steps Forward One Step Back

In the early morning hours Tuesday our little girl, was so filled with the passion that fills little people that her lung bore a leak. Evidently she was inconsolable and crying quite a bit. A void was forced through the wall of her lung and air passed into her chest cavity. They had to re-intubate (and we had just gotten used to seeing her without that damned breathing tube.) Nora didn't want anything to do with the respirator, however and self-extubated. They found that her breathing was strong enough that she didn't need assistance and just left it out. Another chest tube had to be inserted to release pressure buildup in her chest. Now she has two.

2006-07-10T22:00:00.000-05:00

Big Monday

Today Nora drank from a bottle for the first time!!
Not Mom's milk- YET. It was only colorless, flavorless Pedialyte, but at least she has something in her stomach. This also means that the procedure to correct the esophageal fistula was successful. There is evidently a 'narrowing', which is normal. We don't yet know what that means for the future, but we DO know that she can swallow!!

In other fantastic news, the testing today has proven that her kidneys and bladder are just fine. We are still eagerly awaiting updates on the plan for the next phase, the reconstruction of her urinary tract.

Thank you so much for all of the kind words and especially for keeping our little girl in your thoughts. It really means the world to us!!

2006-07-09T22:39:00.000-05:00

Big Day Tomorrow

Our thoughts go out to our little girl for her big day tomorrow.

We like to think she's smiling

Daddy's Girl

Momma's Girl

2006-07-08T22:40:00.000-05:00

Anticipation...

Melyssa is home today. Her doctor released her Friday morning. It's nice to be home, but it feels incomplete without Nora. We have seen her everyday this week and the only thing that is keeping us from being completely distraught, is our confidence in the medical team at Children's Hospital. They have been completely forthright and honest from the beginning. And we know that besides ours, Nora is in the best hands she could be.

She came through Tuesday's procedure with fantastic results. As of Thursday she is off of the ventilator and off of the pain meds. The only tubes in her now are a chest tube draining fluids from the surgery, and an IV which is feeding her.

Monday she has a VERY full day. They are going to give her a 'Barium swallow' to test the results of Tuesday's procedure. And do testing to determine the layout of her urinary tract.

2006-07-04T12:57:00.000-05:00

Our Surprise Fireworks

Nora was born @ 6:03AM on July 4th 2006 by Cesarean Section. at Missouri Baptist Medical Center. She weighs 6 pounds and is 19-1/4 inches long.

She is afflicted with Tracheoesophageal Fistula and Esophageal Atresia, a condition that affects one in 4,000 births. Essentially, her trachea is not attached to her stomach. As it it not a rare condition, the expected results are very positive. She was transported to Children's Hospital of St. Louis, the top children's hospital in the Midwest. Following her surgery, she will be tested for further internal complications, such as cardiac or renal that are often present with this affliction. Her strong reflexes, and general apperance suggest that her neurological development is normal.

Melyssa is resting comfortably, and may be released as early as Friday.

2006-06-14T21:23:00.000-05:00

World, this is Nora.
Nora, this is the World.
You two play nice.

2006-06-14T21:14:00.000-05:00

Hi everybody. This is how we're going to communicate every little fragment of minutiae about what's going on in our family. Actually, I'll do my best to be concise. You're welcome. I think you can 'subscribe' to this blog and get emails when I create a new post. Stay tuned. I'll let you know. Thanks for visiting.