Mac
TrachKid Profile
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Mackenzie is a 26 weeker and one heck of a fighter. After a very high risk pregnancy due to chronic hypertension which became increasingly difficult to control, two emergency trips to the hospital's cardiac unit, and 9 weeks of bedrest, Mackenzie was born via c-section at 8:14am on September 13, 2008. I had ultrasounds every 3-4 weeks to check on Mackenzie's growth and as of my 24 week ultrasound, everything was perfect - Mac was measuring ahead in her growth and doing great. I went to the hospital on September 11th with sharp pains in my upper abdomen. An ultrasound revealed very little amniotic fluid, severe IUGR, and decellerations in Mackenzie's heart beat. We were told that I may be induced that day, but they wanted to wait two days to give me steroids for Mac's lungs. Thankfully I was able to get the injections.
Our journey was typical of a 26 weeker. She stayed on the ventilator for about a week and a half, then came off onto a CPAP. In November we thought we were getting close to having her home. Unfortunately, she got incredibly ill with pneumonia and went from a nasal cannula to being intubated. When she came off the vent for the second time, there was an audible stridor that continued to worsen. After a flexible scop at the bedside, it was determined that Mackenzie had laryngomalacia. We were told that it would correct itself and so we continued to work on getting Mac home. She was nippling all her feedings and back onto a nasal cannula in no time.
In December, Mackenzie's stridor had become incredibly loud. She had intense work of breathing and could no longer nipple - she just had no energy. On the 10th of December I was at her bedside and she looked up at me in terror. Suddenly her respiratory rate plumited, along with her heart rate. My baby was crashing right infront of me and no one knew why. The neonatologist intubated her and sent us to a university hospital for fruther evaluation.
During Mackenzie's bronch at the university, the ENT team discovered a large mass in her airway giving her approximately 1mm to breathe through. They performed a tracheostomy and sent the mass to pathology. It turned out to be a hemangioma and we anticipated it growing back, so the trach was left in. Since her trach, Mackenzie has become ventilator dependent. She also has a Mic-Key button for gavage feedings and is able to nipple 2 ounces a day when she feels well. Her most recent bronch has shown the hemangioma has grown to occlude 90% of her airway.
Five months into our NICU journey and we have yet to take her home. We're hoping May will be our month, although only time will tell.
History
- Blog
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- Member for
- 1 year 26 weeks
Location
- Country
- United States
- State/Province
- North Carolina
