After Sarah’s summary update last time, I decided to start this update with my own overview of the major events of Julie’s short life…
Julie is making slow steady progress. What a difference a year makes!
Today marks one year since Julie’s first surgery. We were just getting into the rhythm of life in the NICU after Julie’s surgery. Sarah was under doctor’s orders to rest as she recovered from the delivery because they were convinced she had abrupted and that’s why Julie was born so quickly. Sarah also had an episiotomy (the obgyn had to cut Sarah to get Julie’s shoulders out and then stitch Sarah up afterwards). According to Sarah, the stitches hurt more than the delivery! As a result of Sarah’s body getting so beat up, the obgyn arranged for her to stay three days in the hospital instead of two days.
Once Sarah was released, she was under strict orders not to drive for a few weeks. As a result, she spent hours each day pumping milk for Julie while I was trying to balance school, work, and midnight milk runs to the hospital. Sometimes Sarah came with me at night and sometimes she stayed home too exhausted for the hour round trip and the anxiety of seeing Julie full of tubes and wires.
Julie had been gradually recovering from delivery. She was steadily losing weight from the excess fluids, so each day she lost a few ounces was a reason to rejoice. She was looking so good that I insisted Sarah come the next night and we invited my brother and sister-in-law to see/photograph Julie, too. It was the night before surgery and Julie had taken a turn for the worse. She was retaining fluids, her color was bad, and her breathing was harder. We were all surprised and worried.
The next day started with a phone call from the hospital. The doctors wanted to operate in the next couple of days, so we needed to come into the hospital to meet with the surgeon and sign the papers. Before we got to the hospital, the plan had changed at least three times. Julie was to be operated on immediately while still in her room in the NICU. She was too sick to wait any longer or to be moved down to the surgical rooms.
We had just enough time to see her for a few minutes before we were kicked out as her room was transformed into a surgical theater. Since she was so sick, they had to move everything out to make room for all the equipment. The surgical staff had to wait in the hall.
Sarah and I were waiting just down the hall. I tried to peek inside the room during the surgery, but they wouldn’t let me near. Pity. We were convinced that the surgery was the right thing to do and were equally convinced that Julie would survive. It was fairly tense for a while, but by the time we heard that the tumor was out and we could see it, we were laughing and joking with the staff. One of the few times anyone heard laughter in that place.
Today, Julie is resting peacefully as I’m writing this update. We have our favorite music in the background. She threw up just a little this morning during the end of her first feeding. She is throwing up or spitting up just a tablespoon or less most mornings. Some days she has more than one morning episode. This is much more manageable than January when we spent hours venting her stomach each day. Sarah is doing a great job dealing with Julie’s needs.
Did I mention how Julie ended up on prevacid? Sarah put it together. She remembered that Julie had been exhibiting signs of acid reflux while still in the NICU. We did the nissen in part to reduce the effects of the acid reflux, but we stopped the medication after the surgery. Sarah realized that Julie was having bouts of acid reflux and that this was causing her to vomit. Sarah confirmed with the pediatrician (who had also noticed that Julie had a very red throat) and helped him write the prescription for prevacid. We also assumed that this was causing the Mickey button to leak more than normal and was a contributing factor to Julie’s coughing/gagging episodes.
We are now feeding Julie 5 times a day for 30 minutes at a time. We restarted the probiotic drops and the vitamins, but we give the vitamins in the afternoon when her tummy seems a little more settled. The crib is still inclined and we kept the non-dairy formula.
Julie still isn’t eating by mouth, but she doesn’t have the strong rejection to food or drink. She just turns her head and whines a little. One big problem is that she won’t swallow her own spit. Instead of drooling, she holds it in her mouth until she can’t stand it anymore and then coughs and gags as she tries to clear her mouth and throat. She usually has a frown on her face while she is holding her spit, so we try to distract her so she will swallow naturally.
Occasionally, she actually enjoys drinking from an adult cup or glass – smacking her lips and sighing heavily. I had no idea how advanced she is to be able to drink from a cup until I started talking to other parents. So, she is very advanced and very, very behind at the same time. Poor kid is as confused as her parents!
We have a new physical therapist. He just started last week, but is making some progress with Julie by increasing her strength and balance. Julie is freely playing on the floor with her toys in the sitting position. We still keep the boppy close by to soften the blow when she occasionally loses her balance and falls backwards. Julie is readily rolling from side to side now, but not rolling over completely or crawling yet.
Julie got a clean bill of health from her pediatrician on the day after her birthday. Her one year vaccinations were especially difficult since she is becoming more aware and anticipates the shots from the time she is put into the car seat. As we were warned, she has run a fever on and off, she has little chicken pox marks and she is especially tired. She should get over all these symptoms this week.
Her Mickey button was looking wonderful for a couple weeks. There was no redness around the button and just a small disturbance at the wound. Unfortunately, she is producing more goop which irritates the skin and causes redness, itching and some bleeding. We think that this is just part of her normal cycle.
Our insurance is paying for Julie’s formula, bags for the feeding pump and syringes. We spent several days going back and forth to have the provider supply the new formula and some 6 cc syringes. They don’t supply 1 cc syringes, but we found them cheap on the internet. Also, we learned that they can supply the tube which connects the pump bags to the Mickey button. The tubes get stiff after about a month and are next to impossible to clean once they get dirty. When they are stiff, they pull on the Mickey button during feeding. Looks like we need to contact a different doctor to have him write a prescription for the tubes. More paperwork – my favorite!
Sarah finally got out for the first time in awhile yesterday. She bought some toys for Julie and some clothes for herself. The good news was that she really enjoyed herself. The bad news was that she really enjoyed spending money. Time to hide the car keys!
While she was out she decided to stop by the Dunkin’ Doughnuts place. While she was picking out her dozen, they gave her some fancy ones (éclairs and apple fritters) for the same price saying that she was the most pleasant customer they have had for a long time. It always pays to be nice.
Our lease expires in May, so each year for the past five years I’ve looked around for another place to live. Last year, with Julie in the NICU and Sarah unable to lift anything, I didn’t even try looking. But this year, we renewed our quest. We searched the area for a month and found the “perfect” house, but we learned that we are ineligible for a loan because of our old house in Albuquerque. We sold it over a year ago, but we will have to wait at least one more year before we’re eligible for another loan. We were disappointed, but we figure God has a better plan.
In the meantime, we’re looking at rental houses because we are desperate to reduce the rent and pay off the credit cards. We took some of the down payment we had saved up and paid down the credit cards. The rest we are holding in reserve to cover the move and my tuition at DTS. I did set aside a small amount to buy some things we’ve been putting off for a while.
Although things aren’t progressing as fast or in the direction we planned, things are moving and we continue to be grateful to God for all His blessings. Especially for Julie!
Andy & Sarah and Julie Horn
Our new PT has helped Julie more in two weeks than the previous PT did in as many months. Julie rebels against whatever he wants and only reluctantly complies. Then the next week, she masters the exercise without problems.
Her extended nausea problem mostly ruined whatever progress she made in feeding therapy. She has begun to make some progress now that the prevacid has taken hold. Her progress seemed limited to fluids rather than solid foods.
After nine months, we expected Julie’s mickey button to look better and require minimal maintenance. It still required, at least, twice daily cleaning and looked ugly more often than not.
Getting a fresh supply of extension tubes became a turning point for us. Flexible tubes reduce the tension on the button and Julie’s stomach wound. Stiff tubes stretch the wound out of shape causing irritation and more leakage (which leads to even more irritation). I spent hours each week cleaning this small part to extend its utility. With a regular supply of fresh tubes, Julie can heal with more comfort.