Meet the Liver Team

Tuesday's check-up in Ann Arbor went as smooth as can be expected. Sara and I have decided anytime Olivia doesn't end up hospitalized makes for a good visit. :) We met with pretty much the full complement of practitioners involved with Olivia's Liver care. This team consists of a Registered Nurse (Vicki), a Social Worker, a Clinical Psychologist, a Nutritionist, and of course Dr. Lopez. From what we gathered, Vicki seems to be the lynch pin to this team, coordinating and organizing everything.

Meeting with the Clinical Psychologist was interesting. He was interested in how we've been dealing emotionally with all of Olivia's problems. We had a good conversation about our hopes and fears concerning our Little Diva. Of course Sara and I have talked about these issues quite a bit, but it was good to

have a 'neutral'

party become part of the conversation and validate our feelings about our dearest Olivia. It sounds like we will meet with him every time we come for a Liver follow-up.

Dr Lopez popped in for a couple minutes, took a quick look at Olivia and was gone again. He did seem happy with her overall progress, since she'd put on just over 1lb since her last visit 1 month ago and her blood values have been stable.

Kila, the clinical nutritionist, came in after Dr. Lopez and spent a good 15 to 20 minutes talking to us about Olivia and her weight progress. It was decided that Olivia was still at the bottom end of her growth curve - -not surprising due to the combination of Heart and Liver problems -- but that they would like to see her move up

some percentiles by her next visit. We will be starting Olivia on a higher energy formula -- 30KCal vs the 26KCal she's eating now. This will hopefully allow Olivia to put on weight faster taking in the same volume of food she has been eating.

Before we left the hospital, Olivia had to leave a blood sample for a full work-up. This blood work showed that her liver is doing 'well,' with all her liver values improving slightly across the board. The only concern at this point is that her Potassium (K) continues to be elevated. The increased BiCarbonate hasn't reduced the Potassium as much as we'd hoped. The new plan of attack now involves changing her formula to a lower mineral content formula, hopefully she will take to this food quickly w/o much difficulty.

As I mentioned earlier, overall the visit went well, at times though we felt as though not everyone was on the same page. The extent and rarity of Olivia's medical condition(s) are most likely the cause of some of the confusion/contradictions we ran into talking to the Liver team. For example the nutritionist was initially under the impression that Olivia's heart had been fully repaired, when we explained this was not the case, she had to change her assessment... Hopefully

as they all become more familiar with Olivia during her subsequent visits, everyone will be up to speed and we'll have less confusion about what's

been done or still needs to be done.

One final picture of Olivia with her new best friend: Charly -- picked up at the Chelsea Michigan Teddy Bear Factory on the way home from the Hospital.

Happy Birthday Olivia 2/19/09

Olivia Anne Huelsbergen was born Thursday 2/19 tipping the scales at whopping 5lbs 14oz.

The first 36 hours in the hospital were very unremarkable, each member of a new family getting to know each other.  Feedings, diapers, crying, burping, little sleep, everything thst goes along with adjusting to a newborn.

A Trip to the Pediatrician 

Aside from a slight case of  

Jaundince on her discharge exam from the hospital on 2/21, the on-call 

Pediatrician did note a mild heart murmur (Grade 2/6). A chest X-Ray was ordered along with Blood Pressures, which both came back normal.  Up to 60% of newborns can have benign or functional murmurs at the time of birth, so no one was overly concerned due to the 'Lower Grade' of the murmur and the normal radiographs.

We took our little bundle of joy home to start a new chapter in our life as a family of 3 ( + Zoo of course). Olivia quickly helped us settle into our new roles as parents. She cried when she had a reason; hungry, dirty diaper, burping, comfort.  When she was clean, dry, fed,

 burped or held she was content.  She'd sleep 2-3 hours at a stretch, then let us know when she was ready for more. Af far as we could tell she was a healthy and happy Newborn; Eating, Sleeping, Drinking, Pooping, Peeing, and Crying.

On day Monday 2/24 we took Olivia for a follow-up visit with our Pediatrician to evaluate her Jaundice and overall well being after leaving the hospital. At that time Dr. Lee confirmed a Grade 2/6 systolic murmur and felt her Jaundice deserved some follow up bloodwork.  Dr. Lee did reccommend arranging a Cardiologist consult to make sure her Murmur was benign. 

Her labwork continued to show elevated Bilirubin levels, both Direct Bilirubin and Total Bilirubin. The contined elevation of these values, especially her Direct Bilirubin suggested close monitoring for any Liver/GI issues with a possible Gastroenterologist consultaion.  Olivia's (aka Little Peanut's) medical chart was starting to take on a life of its own at 10 days old.

A Trip to the Cardiologist

For Olivia's two-week birthday (3/5/09) instead of a big party, She wanted to see a Cardiologist, to make sure everything was ok. We took a sort drive to Kalamazoo to Bronson Hospital for an echocardiogram.

 To our shock and suprise the echo revealed that Olivia's heart mormur was associated with a quite severe Congenital Heart Defect (CHD) called Tetralogy of Fallot. Our Little Peanut wasn't done with surprises yet, because the ultrasound revealed she also has a malformation of her Pulmonary Ateries called Pulmonary Atresia.  This combination of Heart Defects occurs in about 1 in 10000 or less births. We knew our little Olivia was special, but we had no idea how special she really is.

Olivia was immediately admitted into the Pediatric ICU at Bronson Children's Hospital in Kalamazoo. She was started on IV's, medications and monitors to make sure she remained stable. As I am writing this (3/8/09) we are waiting on a transfer to University of  Michigan Hospital in Ann Arbor to further evaluate her heart and prepare her for the first of multiple surgeries to 

correct blood flow to her underdeveloped lung circulation. 

We will try to keep this blog update with any new developments as they happen to our sweet little girl. Initially things have been happening fast and furious, but we must soon settle into a rhythm, but will continue to use this site as our meeting space.

Thank you so much for all the support and love we have received over the last 3-4 days since Olivia's diagnosis.

Peace,

Ben, Sara & Olivia