Things were very touch and go for a while. It was hard getting used to the hustle and bustle of the NICU. All the tests, medications and equipment - brain scans, heart scans, heel sticks, constant IVs, TPN, ventialtor settings; The people telling you what you can and can't do with, and when you can and can't see your baby; All the monitors going off everywhere - wondering what it meant when Haley's montior went off. I found myself constantly looking up these foreign words I had never before heard, that I heard used in the NICU about my precious little baby. I bought a book about prematurity and read it in every moment I wasn't in the NICU with Haley. My need to understand what Haley was going through and to find people who had been through it, and most importantly, survived it, was overwhelming.

Haley seemed so fragile laying on the warmer. I wanted so badly to love her and hold, yet I was afraid to even touch her for a while. As the days passed, I became more comfortable and began to ask if we could hold her. To my disappointment, the answer was always, "No, she is too sick and unstable." Well, on December 3, we got to hold Haley for the first time! It was "the happiest moment of my life" as I said that day when I was holding her. My husband and I each held her for about 10 minutes, and it was wonderful!!! The next day her primary nurse was on, and she let us do her first Kangaroo Care, ventilator and all! It, again, was wonderful! Then, Haley 's condition started to worsen, and we were not allowed to hold her. I ached to hold her. Some days all I could do was sit next to her isolette and cry. I wondered if life would ever be "normal" again, and if I would ever feel like a "real" mom.

On December 6, she was diagnosed with a fungal infection known as Aspergillis - she had lesions all over her skin. I later came to find out that this was a very rare infection and one that had a very high mortality rate (60%). The prognosis was not hopeful. (The neonatologist would later tell us that Haley was not expected to survive after this diagnosis.) She was put on a very harsh antibiotic called Amphotericin. Due to the harshness of this medication she had to have a line put into her chest called a Broviac, which she would have until February 2, 1999. She got the Amphotericin for 14 days, and miraculously overcame the infection. She has an ugly scar on her chest and neck from the broviac, and scars on her belly and groin from the lesions now, but she made it!

Haley had many problems, as most preemies do, especially with earlier gestations. She developed a Grade I, and a Grade II IVH (intraventricular Hemorrhage-they range from grade I to grade IV) which would not grow or cause her any problems! She had great fluctuations in her blood pressure which they were concerned would cause a high grade brain bleed, but never did. She gave us a scare with her kidneys, she quit producing urine for 5 days. I was very scared, I knew her little body couldn't last for long in kidney failure. But, with a little time and some diuretics, she began to produce urine again. She had a grand total of 5 blood transfusions. For 3 weeks she lost weight, dropping down to 1 pound 5 ounces, which is a normal thing for a preemie, and in fact all babies, to do. Her feedings were turned on and off numerous times - too many to remember - for suspected NEC (Necrotizing Enterocolitis). She had a few x-rays of her intestine come back with dark spots on them which can be indicative of necrotic (dead) bowel. She definitely had some gas build-up from her feedings, but it was resolved by turning them off for a while. Eventually, her feedings were slowly increased and she began to gain weight at a steady pace. (And thank goodness, because mommy and daddy's freezer was becoming a war zone with "milk bombs" from the frozen breast milk in it!)

She was on the ventilator on and off for a month, when she finally came off it for good and onto the CPAP (continuous positive airway pressure), which kept her lungs expanded. The CPAP gave us a few opportunities to see Haley's sweet little face. Here is a picture of one of those rare but oh so cherished moments. She stayed on the cpap for another month and a half and finally graduated to a nasal cannula. On February 1, she was moved to an open crib, and had her first meal from a bottle! We were so overjoyed at all she had accomplished, even though we knew there was still a lot left to accomplish.

She struggled with trying to get off of oxygen for a couple of weeks or so, and then she was diagnosed as having ROP, Retinopathy of Prematurity. She got to stage 3 PLUS and it was decided that she needed to have laser eye surgery so that her retina would not detach and cause her to be blind. She had the surgery on February 4. After she had her surgery, she came right off all the oxygen. Go figure! She was on caffeine to keep her heart rate from dropping and to "remind" her to breathe. When the doctors thought it was about time to think about her going home, they took her off of that to see if she could remain stable without it. If they go home on caffeine, they have to go home on a heart and breathing monitor known as an apnea monitor. As it turned out, Haley did not do so well off the caffeine, so she was put back on it and monitored a while longer in the NICU. She also had a sleep study conducted to see if she had reflux, which she did, so she was put on Zantac and Cisapride for that. On February 16, we were told that we were going to room in with Haley in the hospital, and that if all went well, she would go home on the next day. Oh, imagine the excitement we were feeling! We were finally going to bring our little girl home!

The next day as we were packing to go home, we were told that somehow there had been some miscommunication. The day we roomed in, apparently Haley had an oxygen desaturation that had required she be given oxygen to recover. So, we were told that Haley had to go back to the NICU for another sleep study, which meant that I could not even hold her. So the disappointment was very overwhelming, and after spending the night with my daughter I didn't know how I would be able to go home without her for another night, and more than a week of nights after that.

She had the sleep study and it was not good. It showed that she was having many, many desats that were not showing up on the monitor. She was poked and prodded by them trying to figure out what was going on, only to no avail. Maybe all she needed was a little more time in the NICU, or maybe the fact that they increased the amount of caffeine she got had something to do with it, we will never really know, just as we will never know for sure why she came so early. But on February 26, 1999, weighing 4 pounds 12 ounces, we finally did bring our precious little miracle home (apnea monitor and all)!

All Graphic and Web Design was done by my mommy, Holly Curtis.
All the contents of this page are ©2000-2002 Holly Curtis.
They may not be retransmitted in any form without express
consent from the owner, Holly Curtis.