A Diary of Baby Kate's Journey
During Kate's lengthy stays in the hospital, her mother, Krista, kept a blog about Kate's condition to keep family members and friends up to date. Following are excerpts from that blog:
October 05, 2006 - We are thrilled to find our that we're pregnant with child #2!
June 6, 2006 - I have a normal, uneventful pregnancy with 2 ultrasounds...all looks good.
June 26, 2006 - Katherine Anne enters the world at 7lbs 10oz....all is good...Apgar scores are 9. All the family meets Kate. Doctor gives good report. Kate has hip dysphasia, but it can be fixed with a soft cast.
June 27, 2006 - 6:00 a.m.: Nurse comes in to tell Krista that Kate's color is bad, her oxygen levels are low and they can't get them up. Kate is sent to Neonatal Intensive Care Unit (NICU) and gets an echocardiogram. They discover a serious heart defect, start her on medicine and intubate her. 10 a.m.: We learn that she is missing her pulmonary artery. There are 3 tiny collateral arteries that God miraculously gave her, but those don't supply enough blood. Surgery is imminent. 1:00 p.m.: Kate is rushed by ambulance to St. Vincent Hospital in Indianapolis. It's the worst moment so far in my life as my daughter is whisked away. I am amazingly discharged from the hospital less than 24 hours after giving birth and we drive the 2 hours south to Indy. 5:00 p.m. We meet with a cardiologist in Indy...he explains her situation and tells us he needs to do a heart catheterization in order to determine the next steps. Her official diagnosis: Tetralogy of Fallot with Pulmonary Atresia. The cardiologist is optimistic and tells us after a couple surgeries, she will lead a normal life.
June 27-July 12, 2006 - We spend the next 15 days in the NICU in Indy. The heart catheterization shows that they would like her to grow some more before pursuing surgery. She sticks around a few more days until she consistently starts gaining weight. I'm terrified to bring her home.
Mid July 2006 - We find out that Kate's heart condition is due to a genetic disorder. Kate has a deletion in her 22nd chromosome. The disorder goes by several names: DiGeorge, VCFS or just 22q. We are devastated. The hardest thing is that so much is unknown. There are over 180 anomalies that go along with 22q and we have no idea how many will affect Kate. We spend countless hours on the internet...but we still know nothing as we will only know as symptoms develop. Right now...her heart is our major issue.
July-September 06, 2006 - Kate is home for the summer on no medicine, oxygen or monitors. She develops REFLUX and it takes her a long time (over an hour) to take a bottle as she tires so easily, so eating is our biggest task. Our pediatrician, Dr. Steigmeyer, keeps a close eye on her (weekly trips to the doctor).
September 28, 2006 - Kate has her 1st heart surgery in Indy at the age of 3 months. All goes well with the surgery and the surgeon was able to unifocalize her 3 collateral arteries and bring them together into a shunt. He connects the shunt to her pulmonary arteries and keeps the VSD open in her heart.
September 29-October 18, 2006 - Kate spends 3 weeks in the Intensive Care Unit at St. Vincent's. She developed a lung infection and has a hard time coming off the respirator...she failed after the 1st attempt a week after her surgery. They do a CT scan to check for stroke...no stroke but they find her brain is "abnormal." More devastation. The MRI shows that she has Polymicrogyria and the right side of her brain is not as developed as her left. We met with the neurologist...and again, more unknowns. We will not know what this means to Kate until symptoms arise. Her brain may compensate and "learn" new ways of communicating with itself. We are told she is prone to seizures and most likely will have some sort of developmental delay....but we won't know until...? This is frustrating for us as we want answers now! After two weeks on the vent, Kate comes off and breathes on her own. Now, we have the issue of getting her to eat again.
October 18-28, 2006 - Once her heart was stable, we transferred her to Ft. Wayne to Lutheran to deal with the eating issues. Andy had to go back to work and we needed to be home with Seth (our 2 year old). After a week of dealing with and learning to feed Kate with a feeding tube through her nose...I beg the doctors to take the tube out and let Kate try and eat without a tube down her throat. After a swallow study that came back normal, they pulled the tube and Kate began eating! We spend another week and half at Lutheran.
October 28, 2006 - Kate finally comes home from her surgery...this time on some medicine and with an oximeter for us to keep an eye on her oxygen levels. Kate is basically pumping mixed blood right now...the blood is never completely oxygenated and her stats run in the 70% instead of 99-100.
October-January, 2006 - Kate, heart wise, is doing well. However, she is not gaining weight. We up her formula to this nasty thickened 30 calorie. With the combination of the fact that she doesn't drink that much since it tires her so easily and the fact that she refluxes a bunch of it...she gains only a pound in 3 months. We pretty much keep her at home so she doesn't catch a nasty virus. It is a long winter with many sleepless nights trying to get Kate to eat. Cabin fever sets in. She remains remarkably healthy...except for a nasty respiratory infection around Christmas.
January 2007 - Kate begins physical and occupational therapy through 1st Steps. Two therapists come to our house and work with Kate and me. She is delayed for several reasons:
1. Her genetic disorder
2. Her heart condition
3. She spent 6 weeks of her short life in the hospital flat on her back!
We work hard on getting her to utilize her left hand as much as her right (this is probably due to the brain issues).
February 2007 - We meet with a surgeon to discuss putting in a Mic-Key button (a feeding tube directly into her tummy)! We are hesitant to go ahead with it because she had finally had a decent weight gain the week before. We decide to wait and see....Praise God Kate has continued to gain weight and we dodged that bullet. No feeding tube!
March-June 2007 - Kate begins to blossom! Feedings get much easier. She is consistently gaining weight. She begins to sleep for more than 3 hours at a time. Therapy sessions are working and she learns to roll, sit and utilize both hands. The weather gets better, flu season is over and we can go outside! YEAH!
June 14, 2007 - Kate has a heart catheterization in Indy, her arteries have grown and her final repair surgery date is set for July 25.
June-July, 2007 - We pack in as much summer as we can in 6 weeks. Kate turns 1 and loves her cake. We take a family vacation to Lake Michigan and she loves the beach. We took many walks...spent hours on the swing in the backyard and ate lots of ice cream and Popsicles.
July 25, 2007 - Kate has her 2nd open heart surgery at the age of 13 months...her "final" repair. The surgeon puts in an RV to PA conduit and closes the VSD. Two days later they discover that there is a residual VSD. They do an emergency heart catheterization and the cardiologist and surgeon agree that she should be able to come off the vent and it shouldn't cause a problem. Several days later, Kate's attempt at extubation fails and they go ahead and schedule another open heart surgery.
August 1, 2007 - Kate has her 3rd open heart surgery in attempt to close her residual VSD. She makes it through fine...but again in a post-op echo they find yet another VSD. However...Kate is able to come off the vent within a couple days...spends 10 more days recovering and comes home on August 18...on 8 prescription drugs! YUCK!
August 21, 2007 - Kate is throwing up a ton the 3 days we have been home and is not eating anything. We take her to our local hospital where they decide to fly her by helicopter back to Indianapolis. The minute the nurse takes her off my lap in Indy...she arrests. She is without a heartbeat for 20 minutes while the doctors attempt to get a central line placed. The line finally gets placed...and Kate responds to the epinephrine and her heart begins pumping again. She quickly opens her eyes and looks around which encourages us all that there is no brain damage.
She spends another 25 days hospitalized as they continue to adjust her meds. Kate has lots of issues with fluid retention and is very dependent on her lasix. We are told by a cardiologist that her heart function is not improving and that her prognosis is not good. We once again are devastated. Another cardiologist assures us that her heart will recover...it just takes time and she just needs to grow. We ask for a 2nd opinion and they refer us to University of Michigan at Ann Arbor.
September 14, 2007 - Kate once again comes home...on only 6 meds...but on oxygen full-time.
September 18, 2007 - We spend 3 days back in Indy after a 3am ambulance ride because Kate is throwing up again. Some IV lasix and a good "poo" and we're back home again. Kate loves being outside and we go to the zoo, the apple orchard, take lots of walks and swing in the backyard.
October 2, 2007 - Again...Kate is throwing up constantly. This time....we spend 5 days at Lutheran. The overall consensus is that she has the flu...but she just has NO HEART RESERVE and the basic flu pretty much takes it all out of her. She needs IV fluids to stay hydrated.
October 7, 2007 - We come home...only to have her develop a fever again within 2 days. Panicked parents that we are...we're back at Lutheran for 3 days until the fever is gone! After her arrest in August...we learned that she is very fragile and we don't take many risks with her healthcare.
October 24, 2007 - We go to University of Michigan at Ann Arbor for a consult, echo and heart catheterization. The team there is optimistic about condition...but definitely feel that surgery is necessary to repair the VSD, repair her leaking tricuspid valve and replace her leaking conduit. Plus...the docs highly recommend she gets a g-tube to both get her calories and strength prior to surgery and allow for a quicker recovery. Surgery gets set for November 27. We leave U. of M. after 3 nights encouraged and optimistic about Kate's heart.
October 31, 2007 - Kate goes trick-or-treating and LOVES it! She is the cutest little monster you'll ever see! She loves chewing on all the candy. It was a great night. But...Kate is not eating well...and begins to lose substantial amount of weight...weight she can't afford to lose.
November 9, 2007 - We're back in Indy for her g-tube placement. In addition, the surgeon does the Nissan Procedure to help control her reflux. During surgery, the surgeon found and repaired a hiatal hernia and dilated her constricted esophagus. Poor thing...had so much stuff going on in her tummy....no wonder she didn't want to eat. We spend 6 days in the hospital as she adjusts to her tube feedings and we work up to her feeding goal.
November 19, 2007 - We've been home about 6 days and Kate is retching more and more. She isn't tolerating her tube feeds at goal and gets sweaty and lethargic. A trip to the pediatrician and he recommends a night in our local hospital with a good couple doses of IV lasix to clear out her lungs.
November 21, 2007 - After spending 2 days at Lutheran...Kate doesn't get much better. She continues to retch and has a few episodes of turning blue. We make the decision to go ahead and transfer her to U. of M. early so that the heart docs there can really assess her and get her in great condition for her surgery a week later. Kate and I ride in the ambulance while daddy follows behind. We're admitted to the floor of U. of M. at 9:00 p.m.
Kate decides she isn't ready for surgery and has several breathing episodes, a fever spike and more retching that concerns the docs. There is "talk" about pneumonia and she spends 2 nights in ICU being watched...and surgery gets postponed until December 11. We spend the next 3 weeks on the heart floor...just hanging out...adjusting feeds...and trying our best to keep Kate happy! The only way that is done by endless walks around and around the floor.
December 11, 2007 - We're so ready for surgery...Kate has been eating more than ever...BUT...no room in the ICU so we get bumped!
vDecember 13, 2007 - Finally...the day is here and Kate goes back for surgery to repair the VSD, repair the tricuspid valve and replace the conduit. The surgery takes 5-6 hours and the surgeon, Dr. Bove is optimistic afterwards. He is aware of a small VSD he could not assess...but everything else looks great. We see her and we think she looks great!
December 14, 2007 - Once again...a post op echo shows that there are still residual VSDs and the pressure in her heart is still way too high.
December 17, 2007 - Kate goes to the heart catheterization lab...and they determine that nothing else can be done...and the pressures still remain high. There is a chance she might improve...but her pulmonary arteries are just too small to manage all the blood flow from the heart. Their goal...get her off the breathing tube.
January 1, 2008 - Kate comes off the vent (after a failed attempt on December 19). She continues to battle complications from her weak heart and requires lots of medical care and interventions over the next 2 weeks including chest taps, chest tubes and extra IV medicine. Her heart continues to grow in size and the leaks continue to grow. The pressure is just too high and she is not able to pump the fluid away from her heart and lungs.
January 14, 2008 - After countless talks with many cardiac docs we are assured that there is nothing more medically that can be done for Kate's heart. After many talks with family, our pastor, each other and God...we decide to not pursue any further interventions. We place her in God's hands...and do all that we (and the medical team) can to keep her comfortable.
January 15, 2008 - Kate drinks a bottle of milk, rolls over and peacefully joins her heavenly father. No more tubes, no more pokes...no more tests....no more shots...no more medicine...no more pain!
January 19, 2008 - Kate is laid to rest in Portland, Indiana. Her body buried...her spirit living forever in eternity with her Heavenly Father.
Kate blessed our lives for 568 wonderful days. We were told we must be pretty special people for God to bless us with Kate. We've learned...Kate has blessed us more than we could ever have imagined. - Krista Layman