"Short List of complications"
Diagnosed with VACTRL Association
TE Fistula (Esophagus/stomach not connected & esophagus attached to trachea) (repaired 12/17/12).
Tethered cord (repaired 5/9/13)
Fluid on the spine
Heart Murmur (benign)
Menigocele on skull – leaving a whole in his skull (Spina Bifida) (repaired 5/9/13)
Vertebral Anomaly – (Semi-segmented hemi-vertebrae) (repaired 11/4/14).
Seizure disorder – (last seizure July 2013)
Recurrent (4) Pneumonias due to tracheomalacia
Our little hero was born on December 16, 2012 7 weeks early. He was 4lbs 8oz and 18.5inches long. From the first second he was a miracle. My placenta abrupted – had we not been in the hospital he probably wouldn't be here. On day of life 2, he had surgery to connect his esophagus to his stomach. He was under a paralytic and he had a feeding tube for the first couple of weeks, soon after that we were able to hold him for the first time. We spent a total of 40 days in the NICU at the University of Minnesota Children's hospital. Due to the TE Fistula repair he had GERD (extreme reflux), was on a heart/apnea monitor for a month after we got home and had to be in a Danny Sling while he slept to prevent aspiration.
Before he turned one, he had 3 major surgeries - TE Fistula repair (Disconnect trachea from esophagus and attach the esophagus to the stomach), Tethered Spinal Cord repair, and Menigocele Repair (spinal fluid came through a hole in the skull) and was hospitalized over 5 times for MRIs, illnesses, and other tests. He suffered two seizures in the summer of 2013, and was put on medicine to regulate them.
In 2014, he was hospitalized 4 times for serious pneumonias. He underwent multiple tests to determine the cause, and it was determined to be caused by his tracheomalacia (soft trachea). He currently is taking two steroids twice a day to strengthen the trachea. Gavin was in Physical Therapy on a weekly basis, and Oral (feeding therapy) every-other week. In November, Gavin underwent surgery at the U of MN to remove semi-segmented hemi vertebrae in his lower back. It was by far the most pain we have ever seen him in, and the hardest part was not being able to take it away.
As time goes on, Gavin is getting stronger and stronger. This winter we were thankfully pneumonia-free, (thanks to his compression vest treatments) and managed to stay out of the hospital! We also got great news that the hole in his skull is almost completely closed, and the fluid on his spine is going down. Gavin has thankfully been seizure-free since July 2013, and is no longer taking the seizure medicine. Our trips down to the University of MN Children's are becoming less frequent, and we rejoice in that. However, we are beyond grateful for the love, care, support, and elite medical care we have received there.
Each day is a gift. No one ever expects to have a child with medical complications, but God has given us the strength we need to physically/mentally handle it. We find joy in the simple things, and because of this journey, I can honestly say that I haven't taken any moments for granted with him.
It is out of our experience with Gavin, and deep passion for the families in the NICU, that we founded LifeSong Ministry. Our time in the NICU was a roller coaster, and I know many who have been in the same position will agree. The good days were really good, and the bad days seemed to outnumber the good. However, we couldn't have come out of there unchanged.
We were in the NICU over Christmas so we received a number of sweet gifts from previous NICU families. Many of them blessed our hearts so deeply, and encouraged us to keep going.
The heart of our ministry focuses around providing support through prayer, and care packages. Each care package contains handmade blankets, hats, water bottles, and many other items that often get left at home when the unexpected happens. In our case, there wasn't time to prepare for our time in the NICU – it just happened, so we try to provide families with items that are a necessity or will bring comfort.
For more information on our ministry, visit our website: www.lifesongministry.org
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.