We are long overdue for an update - by about five months! The beginning of the school year brought a new routine and we are still trying to keep up with going in several new directions. The last couple months have brought a few downs with mostly ups, and here's to hoping the ups keep coming!
July aka Birthday Month
For June's first birthday, we had planned a big birthday to celebrate, but after her hospitalization following her baptism, we were a little hesitant on whether it was a good idea. In the end, we ended up going ahead with the party. In true June-fashion, her birthday weekend was a record - the hottest weekend of the year. We had planned to host her party at a park but managed to secure a last-minute indoor location thanks to our church. Her flamingo-themed birthday party meant pink everywhere as well as hand sanitizer :)
It was an amazing day, thanks to our friends and family. The neatest part of the day was reuniting June with all her amazing NICU nurses. We are so blessed these seven people and their wonderful families have become part of our lives - we would never have brought our beautiful baby girl home without them!
Since June couldn't eat by mouth, we opted for a ringer-painting mess instead of a cake smash.
As far as medical updates...we started Erythromycin. We give her four doses a day, once before each meal and then again in the evening. The medicine stimulates the nerves in her stomach so that it will drain. If this medicine works, June will be on it for as long as it takes for the nerves to drain her stomach on their own. Our surgeon said that some of her patients have been on this medicine for years. There is a possibility that the medicine can stop working, if that happens, June will need another surgery.
August
We started giving June pureed baby food in August. We started with five baby spoonfuls once a day. As June began to figure out how to eat and her stomach could tolerate her food, we were able to increase the number of spoonfuls to 10 as well as increase from eating once a day to twice a day. It was recommended by our doctors to start with fruits so June would like food, but June's favorite foods have turned out to be sweet potatoes, squash, peas, and prunes. At the end of the month, our feeding therapist gave us clearance to add puffs and crunchers to practice chewing. June still only has her two bottom teeth so chewing a little tough for her.
In August, we also got the wonderful news that June no longer needs to wear her helmet! At June's July appointment, the measurement difference between her left and right side of her head had gone from a ten millimeters to a three millimeters. Since the measurement decreased so quickly, the doctor wanted her to wear the helmet one more month to make sure there weren't any more drastic changes. From July to August, June's measurements decreased to a difference of one millimeter, so she was cleared to take the helmet off, and we scheduled one more appointment in September for a final measurement check.
At the end of August/beginning of September, we ran into some difficulties with June's tubes. On day, June was playing when she reached forward and the balloon in her intestines, which holds her J tube in, popped. Over the next two weeks, seven J tubes broke. June's surgeon had just recently increased the tube length because the tube was getting tight against her skin and causing some irritation. Since we had another appointment in a month, our surgeon wanted to wait to see how the longer tube worked for her before ordering a backup for us. When the new tube broke, we didn't have a backup but still had the smaller size to replace it. The popping J tubes caused a lot of stress because we are only sent a backup J tube every three months. With her J tubes continuing to pop, we had no replacement or way to keep the hole to her intestines open, which typically closes within an hour. There are no local pharmacies or hospitals that have June's type of tube, so without driving to Chicago, we were struggling to keep a tube in her to avoid another surgery and continue to be able to feed her. We ended up in the emergency room after one of June's tubes popped during her nap because it was out for too long and the hole in her intestine started closing.September
The month of September brought another visit to Chicago. They ended up changing the type of tube they were using for June. The new tube had a different shape balloon that her surgeon thought would work better. Once again, we heard the familiar phrase, "we have never had this problem (J tubes repeatedly popping) before", so they thought her intestine was putting too much pressure on the balloon as it grew. June sure does love to give doctors a run for their money :)The exciting news was that June's surgeon was so pleased with her weight gain, she decided to decrease June's tube feeds from 17 hours a day to 13. At 14 months, June was weighing in at 19.5 pounds, which put her in 35th percentile for weight. At this point, it is a fine line between making sure June stays a healthy weight in case she needs another surgery, and not increasing her weight too quickly.
June's biggest accomplishment this month was that she is now crawling!
June started crawling while she was still tube feeding 17 hours a day. It was a struggle to keep her IV pole near her. She was too small yet to wear the backpack to carry her feeds in (plus, that is better for walking so air bubbles don't get in her tubes), so unless we followed her around during those five hours (since she was sleeping for about 12 of the 17 hours), there was some risk of her pulling out her tube. Luckily, when June would get to the end of her "leash" she would stop and scream to let us know she was stuck. June also mastered pulling up on furniture about the same time she figured out crawling. We finally had to put the baby gates back up - much to Silvie's chagrin.
October
June got clearance from both her surgeon and feeding therapist to start eating solids - soft ones since she still only had two bottom. We would cut up small chunks of bananas, apples, and avocados, but June quickly let us know that she wanted whatever was on our plates - not her own separate meal. She was now eating two to three meals a day with us and continuing to gain weight. On our own accord, we cut her time on the tube back to 8 to 9 hours at night. June weighed in at the beginning of the month from 20 pounds 4 ounces.
In the middle of the month, June got an ear infection and infection around her J tube. She also seemed to be battling some type of virus. She ended up losing a little weight between her illness and constantly being on the go; June dropped down to 19 pounds and has stayed at 19 pounds since, which now puts her in around the 20th percentile.
June also started standing unsupported in October. She loves to stand on her own and then stare at you - almost to see how long it takes you to recognize that she is not holding onto anything. Everyday we see more and more of June's personality - not that she was ever shy to express her preferences from day one. When she smiles, she likes to tilt her head back, open her mouth real wide, and scrunch up her nose. Sawyer's and June's relationship is also starting to develop - they have little fights. June makes sure Sawyer knows that although she is smaller, she is not afraid to have her voice heard :) Despite the fights, Sawyer loves to help out with his little sister.June enjoyed celebrating Halloween as a flamingo - the perfect costume for our little bird lover.
November
The month of November brought June's reevaluation for her Early Intervention services. Because of her diagnoses at birth, June continues to qualify for services. She got a glowing report from her physical therapist, speech and feeding therapist, and overall evaluation therapist. All of her skills were at least at that of a one-year-old. We could have discontinued services, but decided to continue them since she has some major goals to achieve in the next six months and not knowing when/if she will be hospitalized. 
June went back up to Chicago for a check-up this month too. G and J tubes are generally changed every three to four months, so June got new tubes. She also got cleared to start drinking soy milk or her formula that she is fed through her J tube. We tried the formula but only got one sip down. We moved to soy milk, which she enjoys and drinks. We are hoping we can get some more calories in her through the soy milk. Our surgeon said she is not concerned about her weight at this point, but depending on her next couple weight checks between now and her next appointment, we may have to increase the hours that she is being fed through her J tube.
