Oct 16, 2011
Sorry I havent written in so long, I've been coming back and forth from the hospital, and have barely been on the computer to give you all an update on my baby girl.
As you know my baby was born on Aug 23, 2011, at 29 wks bcs I had preclamsia. She was thriving on the NICU, 4 days after she was born, they took her out of her C-Pap and was put on a canula, she was gaining weight and almost on full feedings. Then on the morning of my birthday, Sept 1st, we got a dreaded call from the NICU, she was diagnosed with NEC, Necrotizing Entercolitis. A gastrointestinal disease that mostly affects premature infants, NEC involves infection and inflammation that causes destruction of the bowel (intestine) or part of the bowel. Although it affects only 1 in 2,000 to 4,000 births, or between 1% and 5% of neonatal intensive care unit (NICU) admissions, NEC is the most common and serious gastrointestinal disorder among hospitalized preterm infants. (http://kidshealth.org/parent/medical/digestive/nec.html#)
We were blessed with a wonderful nurse who was able to diagnose it really quick. She was transfered to a different hospital, with a higher level NICU, just in case she needed surgery. Seeing my baby gone from feisty, eyes open, and fighting with the nurses, to sleeping all day and night, limp, lethargic, and pale, had my heart on pins and needles. Many sleepless nights, waiting for the result of the bloodwork, hoping for numbers to go down.They were taking more blood out than what her body could replenish so she had to be transfused at least 3 times. Finally almost two weeks later she pull through, her bowel did perforated in a tiny spot, but her body heal itself and she was able to start her feedings.
We were ecstatic, she started eating, but it got to a point where she was not toleratng her feedings. This whole process of starting and stoping feedings lasted three weeks, until finally Drs did a contrast exam and where able to find the obstruction. Surgery was schedule for Sept 27th. The obstuction was because when the intestine healed itself created scar tissue that was pulliung together her colon and her appendix. Surgeon got out her appendix, and cut off a tiny piece of her colon, surgery was a success according to surgeons, but they way her tiny body reacted to surgery, was another story.
Although Drs didnt wanted to say anything especific, buy they were dealing on a matter of life and death or even permanent damage. Her body was not able to expel carbon dioxide, making her blood acidy. Dr spent more than 12 hours trying to stabilize her, moving her from a ventilator to an occilator, medication, etc. I took several days for her blood gas to be considered normal, and be put back on the ventilator. After 2 days on the ventilator, she decided it was time to get it out, and at 3:00am, they found her with the tubes on her hands..! Dr decided to put her back on the canula, and on the 5th of october she was breathing on her own again.
Right now shes on full feedings, taking them by bottle, and tolerating her feedings no problems. She has an ostomy and in aproximately 6 weeks they'll do a follow up surgery to reconect her. She's weighting 5lbs 7ozs and measuring 18inches. Feisty, strong and gorgeous, as much it hurt me to see her being poke, she never complained, wouldnt even cry. When they tell you that the NICU is a rollercoaster ride, they're not lying.....,
Drs. are even considering to let us take her home before the second surgery, if she keeps progressing the way she's doing.
Thank you all for your thoughs and prayers, and sorry for such a long post...