Abigail Hope was born September 8, 1999 at LDS Hospital.

She was five weeks early and very small - she hadn’t been growing well and doctors figured it was best to deliver her. Abigail was born weighing 2 pounds 15 ounces. The NICU team took her from the room immediately and Dad followed. Within minutes, Dad and Abigail were back - and I was able to hold her. She was fine - breathing on her own, doing GREAT! This was an incredible moment for Mom because our other children had been born early and had been taken immediately to NICU and it had been hours before I had seen any of them. I had never been able to hold them right after they were born. And to have Abi in my arms and being so small was the first of many blessings and miracles!

Abi stayed in the NICU for the first month of her life. But she was healthy, just very small and needed time to grow and learn to eat and maintain her own body temperature. She was around 3-½ pounds when we brought her home. Nursing was still a struggle for her, it took so much energy, but she finally caught on and could nurse all of her feedings. She wasn’t a big eater and I would have to nurse her often during the day and night.

January 1, 2000 - Abi hadn’t been sleeping very well and her sister hadn’t been feeling well, so we took the two of them to Nighttime Pediatrics. Her sister had an ear infection, and they sent us across the street to a hospital to get chest X-rays of Abi. When we got back from getting X-rays, a nurse noticed Abi started to look blue and they checked her sats and immediately put her on oxygen. Within minutes there was an ambulance on it’s way to transport she and I to Primary Children’s Medical Center. She had pneumonia. She spent 5 days in the hospital and then came home. She came home with oxygen, but was weaned off after a few more days.

By the end of January, we were back at Primary’s with another pneumonia. During this hospital stay they began running tests to figure out what was going on. She came home on oxygen again, but this time there was no time line to wean her off. We were tossed back and forth between pulmonology and cardiology, neither one thinking it was their problem. In the middle of March, she came down with RSV and was hospitalized. Her condition continued to worsen and she ended up in the PICU. They kept saying it takes a few days of getting worse before they get better, but then she just kept getting worse. They had to intubate her and let the vent breathe for her. They decided to do a heart cath to see if they could figure what the problem was and why she wasn’t getting better.

After the heart cath the doctors told us that she had pulmonary vein atresia, which meant that she was missing some of her pulmonary veins - 3 out of the 4. She had no pulmonary veins on the right side and only one on the left. So, she basically didn’t have much use of her right lung. Her heart would send blood to that side to be oxygenated, but the lung had no way of sending the oxygenated blood back to the heart. We were told it was very rare - they had never seen this type of problem before and did not know of anything they could do for her. She remained on her ½ liter of oxygen and we started her on high calorie formulas trying to get her to grow well, so that her left lung would be strong and grow well, so as to do the work of both lungs.

By May, she was doing well and had made it up to over 9 pounds at 8 months of age! We were busy with cardiology clinics, follow-up nutrition clinics, pulmonology, and we had a nurse, and OT that came to our house twice a month. She was still a slow eater and could only seem to handle about 2 ounces every two hours. But she was doing well and making some progress. She was behind in some of her large motor skills.

In July, she started coughing up blood, so we rushed her to PCMC. She was immediately checked into the PICU. They did a bronchial scope, echo and heart cath and found she had some collateral veins that were causing the problems and they coiled most of the larger ones. They also found that her one vein had started to collapse, so now she also had pulmonary vein stenosis. Once again they told us there was nothing they could do and basically sent her home to die.

In August, the panel of cardiologists at Primary’s met and discussed Abigail’s case and options. In September, we had a consultation with our cardiologist and he recommended that we try open heart surgery. Her surgery was scheduled for Oct. 3, 2000. They would attempt to cut out the piece of vein that was narrowing, then fillet the vein open as it entered the heart to allow for greater flow and then put a sutureless patch over it. The doctors felt that our biggest risk was in whether or not her vein would close again after surgery, not necessarily the surgery itself. All studies they had found had indicated that within weeks of surgery, the veins would start to narrow and collapse again. They gave us about a 40-50% chance that this surgery would work. Those were the best odds they’d ever given her, so we decided to go for it! She celebrated her first birthday while we vacationed in Park City.

It was a long day on the day of her surgery, arriving early and then the long wait in the surgery waiting room. Both sets of grandparents waited with us and we had a few friends drop by to check up on us and her. The surgery went well and we even got pictures - the surgeon took a few, since he hadn’t ever done this before. It was literally a textbook surgery - he also gave us a copy of the procedure that he did, right out of the textbook! The only setback associated with that surgery was that she refused to eat, so she came home with an ng feeding tube. Now she not only had oxygen tubes to navigate around, we also had a very short feeding tube leash! Abi was on continuous feeds - 24/7! The only thing she would take orally was water.

By the time Abigail was 15 months old, she weighed just under 15 pounds. Reflux was becoming a bigger problem - in regards to weight gain, her wanting to eat and there was also the risk of aspirations to her lungs and causing pneumonias. In May of 2001 she had surgery to keep her from vomiting - the Nissen fundoplication. She also had a g-tube and ear tubes placed. Once they opened her up, they also found a malrotation of the intestines and fixed that, along with taking out her appendix to boot!

Abigail now had the g-tube for feedings but was still on continuous feeds which made learning to crawl and walk very difficult! But she has adapted to these obstacles and done so well. We had a great summer! It was spent camping, canoeing, and we even braved a trip to Alaska with her and all her equipment. She is so patient and sweet. By August we were able to start bolus feeds during the day which was a wonderful blessing and gave both Abi and myself much more freedom.

Her doctors are continually amazed that she is doing so well. She loves her brother and sister and is so happy when they come home from school. She is a Daddy’s girl! We don’t know where she gets her long, curly red hair from, but we love it! She loves to watch Barney, Blue’s Clues and Pooh Bear. Abi still continues to have feeding issues, but we're working to overcome those. A year after heart surgery, she continues to beat the odds and her vein still looks good and open. We know that we have been very blessed. We’re so grateful to our Heavenly Father for every day!