r. Whiteman recommended we treat Aspyn as if she had an immune deficiency. He explained if she would get sick, with everything else she had going on, it would take too much energy, which her body couldn't spare to fight off any infection. So I took a leave of absence from work and stayed home with her. (Best days of my life :) We started all the medicine and had a heck of a time trying to get her to take the awful stuff. Most of it was in pill form, so we crushed it and tried many, many different ways of giving it to her. After a few days on all of this medication, Aspyn didn't trust anything we gave her. Aspyn's appetite slowly started decreasing, her stomach was so full of medication. When we weren't doing medicine she was her chipper little self, with her big blue eyes sparkling as she pulled on our hair, and played with her toes.
Several weeks passed and we noticed she wasn't gaining weight and the medicine was starting to make her throw up. After many nights in the ER making sure her lactic acid was at a safe level, and many visits to the doctor, we were told all was fine. We just always had a gut feeling that things weren't as goods as they were telling us. We had another echocardiogram done, and it looked good, her heart was unchanged (not getting any worse). So we just went on believing everything was good.
On July 3rd, Aspyn was weak and when I gave her the heart medicine she threw up and became very limp. I called Aspyn's doctor, who was on vacation, so I called another doctor who was not available so I spoke with her nurse and asked her if Aspyn could be getting an overdose of the Lanoxin? The nurse had the nerve to tell me that she doubted it and to wait it out another day or so to see (without even talking to the doctor). So I called Mayo and talked with Dr. O'Leary the Pediatric Cardiologist, who told me to get her in right away and have her degoxin levels checked. So we took her in and the levels came back just a little bit high so we lowered her dose of Lanoxin. July 4th, Aspyn's first Independence Day, she was laughing and happy, we went to the parade, and even watched the fireworks, everything seemed ok, even though she was only eating very small amounts...maybe only 10oz a day. (She was 7 1/2 months old and only weighed 11lbs 4oz.) That night we got her to eat a full 4oz in one shot and her medicine was going in and staying in. July 5th she drank another 4oz bottle in one shot, we were so happy, we thought YES everything is going to be just fine. She got a little bit fussy so we assumed it was her teeth, so we tried giving her some Tylenol, and immediately she threw up. Everything she ate that morning and early afternoon came up! So we asked ourselves why isn't this digesting? We called the clinic right away and once again they told us it must be a virus. So we called Dr. O'Leary and he told us to get her in and when we got there to have the doctor call him right away. So we took her in, to another doctor we had never seen before, and the doctor looked at us and said this isn't a sick child, she looks great, she is smiling and talking, and standing. We asked her to call Dr. O'Leary anyway, so she did. Dr. O'Leary asked her if she thought that Aspyn's sugar levels or lactic acid might be off? The doctor told him "no way, she looks and sounds good." After the doctors conferred for a few minutes, Dr. O'Leary convinced our local doctor to admit her to the hospital. More blood tests were ordered and they placed an NG tube, she desperately needed calories. On the following day, Aspyn's doctor came in and apologized to us. She told us that Aspyn was very deceiving, and that her levels were kind of strange. It was decided that Aspyn should remain hospitalized so they could continue pumping the calories into her. The NG tube was feeding her less than 1oz an hour, and when they checked residual they found out she wasn't digesting the food, it was just sitting there. They eased off the feeding for a short time, and then started it back up. Her stomach kept filling up, and then she would throw up everything. Food just wasn't staying down and neither was her medicine. They attempted to start an IV, however, once again her little tiny veins just couldn't handle it and they would collapse. They finally got an IV to hold after way too many attempts. Our poor little girl was just a pin cushion, the nurses left the room crying. One nurse even asked us how we could bear to stand there and watch her hurt our baby? It was our incredible love for Aspyn that gave us the strength to stand by. We never left her side. It broke our hearts to see her agony. It would be great comfort to us to not have those scenes play over and over again in our minds. Those vivid memories don't seem to be fading.
On July 9th, after talking with the doctors at the Mayo Clinic, it was agreed upon, we'd fly to Rochester. Surgeons there were much more familiar in placing permanent feeding tubes. We wanted the best of the best to perform her surgery. Due to our delayed flight into Minneapolis, we missed our connecting flight to Rochester and had to take a cab. We were so scared. Aspyn had been released from the hospital at home without her NG tube and she had difficulty eating much on her own. We had to get to St. Mary's Children's Hospital ASAP. They asked us to stay in a hotel and we could take the early flight in the morning, but that was not an option! So we finally found a taxi to take us to Rochester. What an agonizing 70 miles. We finally arrived at the hospital at 2:00 a.m. on Wednesday, July 10th. They admitted her and said the doctors would be in to see us in the morning. Dr. Whiteman was the first doctor we saw, once again he was so impressed with how Aspyn looked and responded. He said he was waiting for the surgeons ok for the feeding tube and that he would be in to see us later. In the meantime, we continued with the NG tube, it seemed like we just couldn't get enough food in her, every time we tried to give her more than an ounce an hour she would throw up all the food and all of the medicine. At that point, the doctors thought it best to switch her from breast milk plus milk fortifier to a formula they made up. This formula was supposed to be higher in calories, and hopefully easier for her to digest (this upset me, as they had commented from the start that they believed the reason she was doing so well was because she was being breastfed). On July 12th, after arguing with the doctors we decided it was worth a shot to see if it would work. They also needed to start drawing blood from her every 12 hours to check her levels, so she had to now suffer through arterial sticks twice a day, we now hated the times of 6 a.m. and 6 p.m. I am not really sure right now what levels they were checking, everything is kind of a blur at this point.