Sunday, October 17, 2010

Isabella's first attempt to bottle feed. 2 ounce bottle looks huge.
First day of Kindergarden and 2nd grade

Special visit with Christy

Oh Ashlynn is so silly

Isabella's first outfit

Friday, October 15, 2010

The light at the end of the tunnel

    To begin by saying, “It’s been so long since my last post” would be the understatement of the year.  It's been months since I've posted and I have no good excuses... I know...I am ashamed. I am willing to accept carpal tunnel as a possible consequence of my negligence, and attempt to update you with ALL of the fine details. Okay, I've wallowed in self pity for long enough, I suppose I should get to the nitty gritty. I will be as informative as possible. I wrote this post a few days ago but didn’t post it, so, the dates will seem a bit off. 

    99 days thus far, of heart wrenching anxiety, never knowing which way this roller coaster will turn and praying that it doesn’t derail.  Each day of facing the unknown has slowly and painfully crept along, but the past 3 months seem to have flown by.  38 weeks adjusted, puts Isabella two weeks shy of being a new born. I’ve been sitting in my room, counting my many blessings and reviewing all of the photos we’ve taken. I pause on a horrifying picture that takes me back to a day when I could see no end in sight.
    Bella was rushed to Primary Children’s Hospital just hours after my last post on August 15th. She had an emergency, exploratory surgery in her gut to asses the damage caused by NEC.  Within 4 hours of having the disease, her entire Colon had died and needed to be removed. Fortunately, 99 percent of her small intestine was completely free of disease. Bella was so ill at the start of surgery, that her chances of surviving through it, were less than 40 percent. She went into cardiac arrest during the surgery, giving us an intense 2 minute glimpse of the sorrow felt when a newborn passes away. We were blessed with an amazing surgical team and a feisty daughter that refused to give up. The doctors were able to bring her back and complete the surgery.  Her abdomen was left open with a portion of intestine sitting on her stomach in a small pouch that was sewn to her skin. The edema from such a traumatizing surgery was so abundant that it quadrupled her body weight. She was NPO (unable to eat) for weeks. The swelling was putting an immense amount of pressure on her internal organs, exacerbating every complication. We were told that this would be a frustrating waiting game for both her and us.  The healing process was slow but consistent.Her strength and will to live through the next few weeks gave me hope that she could survive.
     Isabella lost over half of the water weight, and was doing very well. All of the doctors were pleased with her progress and decided that she was strong enough to endure another surgery. On August 26th Isabella's abdomen was closed. She was given an ileostomy bag, which she will need to have until she is eating full, solid meals.  After this, her third surgery since birth, we'd begun the waiting game once again. We waited anxiously for her to be ready to digest and shed more water weight. 
    On September 5th, the nurses inserted a feeding tube in hopes that she would eat but her digestive system wasn’t quite ready. Another try on the 7th, failed...then the 8th...failed again. She had emesis episodes of bile and blood, so her feedings were stopped. One week had passed and she began taking tiny steps up hill.  Moving up hill, no matter how slow and rocky, is still up hill. Nate and I were so grateful for her progress.
    Finally, on september 20th, she tolerated a feed and was breathing well enough to be extubated for the first time. We were ecstatic. She was receiving 5 ml’s of breast milk fortified with calories and fat, every 3 hours.  She did great for about three days, then stopped tolerating her feeds once again. The doctors also found another heart murmur and a dome shaped pulmonary ventricular stenosis.  Days later, our spirits were lifted when we heard that she was holding her body temperature without being in an incubator.  She was able to move into a crib on September 27th AND she wore her first pair of jammies that same day.  She looked so cute and cozy.  
     After many failed attempts to feed, and a pleural effusion (excess fluid that accumulates in the pleura),the doctors put her on the Enfamil formula, Enfaport.  She did quite well on this until they mixed it with breast milk. Eureka!  She is in the 1percent of babies that cannot tolerate mom’s milk club. Once  my milk was eliminated from her diet, she was overall much healthier. It was heart breaking to know that I was making her ill but I rejoiced in the fact that we could begin moving forward. Meanwhile, the cardiologist followed up with an echocardiogram and found no sign of a murmur or a ventricular stenosis. A MIRACLE.
She was doing great, although, we did have another small setback.  The Opthamologist stopped by on October 6th for her routine eye exam and discovered ROP ( Retinopathy of prematurity).  The damage to her retina was extensive enough to require surgery within 72 hours. ROP is measured in 5 stages of damage to 3 levels of eye development.  Isabella’s eyes were in the 2nd level of development and in stage 3+ of ROP. She had laser eye surgery on October 8th.  The surgery went very well and she recovered beautifully and was taken off oxygen completely. It takes two weeks of healing before a proper prognosis can be made. 

     It is now the 15th of October and Isabella is doing very well.  She is working with a physical therapist to re-learn how to feed orally without having apnea spells. It may take 4 to 6 weeks for her to get the hang of bottle feeds. She has an eye appointment on friday the 22nd to determine if she will need an additional surgery.  Our Isabella is a fighter and we are so excited for her progress. Now that she’s almost full term, we can see an end in sight and fantasize of bringing her home.