2016 Wrap Up

June wasn't sure about Santa so her turkey had to come along

I'll start this update with the positives because they are always more fun to write about than the challenges. The day after I posted June's last update, she said her first word: "Da-Da". She puts a lot of emphasis on those two syllables, and bobs her head up and down when she says them with a big grin. I think she will be able to get anything she wants from Jason for the rest of her life :) She hasn't learned any words since then, but she is mimicking words we say. She uses a lot of her sign language (her favorites include "please", "more", "music", "want" and "eat") and pointing to communicate with us as well.

June hit another big milestone this month: walking. She still is mostly getting around by crawling, and only walks when she is venturing from one piece of furniture or person to another, taking at the most 10 steps at a time. We love her adorable Frankenstein walk - she doesn't really bend her knees - and how excited she gets when she gets about two steps from her destination. Her eyes light up, she opens her mouth really wide, scrunches up her nose, lets out a squeal, and dives forward.

June is also getting lots of new teeth. Up until now, she had just her two bottom teeth, but over the last month, she is up to 10!

Although June was very ill over the holidays, we enjoyed celebrating Christmas with each of our families along with our own. Although, I can't say June was enthused about waking up early (9 am) to open presents - I see noon wake-up calls in our little bug's future :)

Right after our surgery appointment in November, June started vomiting once to twice a week. It was always around 3 am and (this is a little graphic) was the contents of her undigested dinner. We let our doctors know but knew that we weren't going to get any kind of solution. The next step is surgery, and while they don't like that she is vomiting as often as she is, they don't want to rush her into surgery until exhausting all the options.

As I mentioned, June was very sick this month, but we were able to avoid the threat of hospitalization, which has been hanging over our heads for the past week. The second weekend of December,
we noticed June was developing the nasty, barky cough that has been plaguing so many this fall and winter. Unfortunately, with June's tracheomalacia, respiratory infections hit her a little harder than most children. We immediately started breathing treatments of Albuterol to relax the muscles in her airway and open the passages to her lungs. When we didn't notice an improvement to her breathing, we added in Budesonide, which is a steroid and decongestant. We have both on hand since our pediatrician always likes us to start with inhalation medicine first because June gets so much oral medicine. (Writing oral medicine always seems ironic to me since she doesn't take any of it orally.)

After four days, we still weren't seeing an improvement. In fact, June was getting worse - she could barely breath without coughing to the point of vomiting. June's early morning vomit sessions were now daily. Our first stop was our pediatrician. We ended up with an oral steroid over five days. The oral steroid would help her for about six hours after given, but as we started decreasing the doses, she began to get worse again. By day four she wasn't improving, and we were headed into another weekend. Our pediatrician decided we should try an antibiotic for five days, along with the inhalation steroid twice a day and Albuterol every four hours.

After the antibiotic, June was still very sick and struggling to breath. She was exhausted from being up all night coughing and vomiting (as were her parents). A couple nights we just held her upright in a chair. We continued to decrease her food until we could find a rate she could tolerate for at least three to fours hours at a time. We ended up decreasing feeds to 25 milliliters an hour (about 1.5 tablespoons worth of formula), when she was use to getting 70 milliliters an hour (about 4 tablespoons). June had also stopped eating for us - when she had been up to eating three meals and two small snacks a day. Naturally, with the drastic cut in nutrition, June's weight was beginning to drop. She got put on 24 hour feeds at a rate of 25 milliliters to at least make up the amount of calories that she got during her nightly tube feeds. Every week, June was dropping about half a pound - she went from 20 pounds to 18 pound, 3 ounces. We were almost to a point of breaking out her 9 month clothing again.

The Friday before Christmas, we took June in to see her pediatrician again. It was the first time I have seen him concerned about her since March. We never got a definitive diagnosis but he mentioned walking pneumonia. Between her weight loss, and the fact that she was now wheezing/breathing with a heaving chest, he wasn't sure we were going to make it through the weekend without her ending up in the ER. He didn't want to issue her another oral steroid because multiple doses of the drug within a short time period can affect her growth hormones, stunting her growth. In the end, he decided to give it another try in hopes that we wouldn't end up in the hospital. We made a plan in case she got worse over the weekend. He gave me his cell number to text him so he could make the preparations to airlift her to Chicago if we ended up in the ER over the weekend.

Luckily, we made it through the weekend, and got June in to see her pediatrician first thing Tuesday. He was very pleased with how she sounded. He did want to talk to our surgeon about one more inhalation medication to help June avoid the hospital. Later that afternoon, our pediatrician called us back after talking to June's surgeon. We were headed up to see the surgeon the next day so they wanted to discuss the medication with us then; however, they asked our pediatrician to let us know that we should pack an overnight bag - they were concerned about how long she had been sick. We were blessed with two nights of June not vomiting, and we were able to work her feeds up to 60 milliliters an hour.

Another bird to love :)

On Wednesday, December 28, I took June up to meet with her surgeon. She was looking and sounding much better within the 24 hours, so we escaped being admitted to the hospital. However, it now looks like another surgery is definite for the year 2017. Dr. Rowell, June's surgeon thinks that her stomach is starting to function with the help of the antibiotic she takes before every meal and bed. However, the constant vomiting indicates that June will need another fundoplication surgery to re-stitch her stomach up around her esophagus. Since June's GI track is a straight line from her mouth to her stomach, essentially when she gets too full, it is easier for the food/formula to go up instead of work itself through the rest of her system. There is a definite risk of complications since this is the second time she has had this surgery. We haven't started to discuss all the specifics yet - our surgeon is hoping we can hold off on the surgery until at least the spring, if not summer so that with the warmer weather, June would less likely to be sick heading into surgery.

Unfortunately, the two night reprieve from vomiting ended Wednesday night. Since December 28th, June has been vomiting multiple times a night. Her surgeon believes she struggles with feeds while lying down (even though she's propped up at a 45 degree angle). We have tried to break up her feeds, giving her some during her nap and some time off in the middle of the night to help her system digest the nutrients that she needs. At this point, the variations of feeding are not working, but our surgeon also wants us to attempt bolus feeds in her stomach after each meal. We will start off slow - a half an ounce in a sitting and work up. The hope is that we can eventually reduce feeds at night. We know that June's body cannot tolerate more than three hours of feeds in one setting. We will continue to work with surgery and our feeding therapist to find a happy medium for our June Bug.

2016 presented us with many challenges, but we have enjoyed witnessing June's major milestones and accomplishments. June has the most amazing spirit encompassed in her little body. No matter what she is going through, she tackles it with a smile, scrunched-up nose, and giggle. She helps keep us strong when it feels like we cannot handle another medical demand. Sawyer has been amazing through this adventure as well. Sadly, he is use to being left to his own devices as we tend to June's needs. He keeps tabs on his sister's health, letting us know when we need to take her to the doctor because "she has a bad cough". It's amazing to witness how two little people who seem so dependent on you can be the ones to carry you through some of life's biggest upsets. Here's to 2017!

July, August, September, October & November Update

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.

June's June Update

The month of June was busy for our family. We were finally able to get June's feeding evaluation scheduled and completed. The therapist started with bananas. Usually, doctors recommend starting with vegetables and then working to fruits, but the feeding therapist said that we would actually start with fruit to encourage June to enjoy eating since it is an act that could have some negative association for her. June was actually excited to eat. At times, she was grabbing the spoon to bring it to her mouth. After putting some bananas on her fingers and pacifier for taste and four to five bites from the spoon, the therapist moved to carrots for another texture. June had a couple tastes from her fingers and two bites of carrots. Each time she shivered but she opened her mouth for more.

June's new sleeping contraption
to help with her reflux

Unfortunately, it was at that point that the session went downhill quickly. When June went to open her mouth for more carrots, the food she had just tasted and eaten over the last 30 minutes started coming back up. The therapist was also concerned about how June was progressively sounding more "wet" as the session continued. We went ahead and wrote an Early Intervention goal with our coordinator, so June could get on the waiting list for feeding therapy services, but the goal included that June needs medical clearance from her surgeon to start services. I called our surgeon after the feeding evaluation, and we set up appointments for early July to have more studies on June's GI tract. We ended up needing to vent June's stomach for the rest of the day, as she continued getting sick hours after the evaluation.

We started speech therapy in June and had two productive sessions. During the first session, June just intently starred at her therapist, observing and absorbing all that was happening. But by the second session, June knew that these appointments were all about talking and would not stop babbling.

This month, June also got her helmet. With the extended stays in different hospitals, June developed some flat spots. The right side of her skull protrudes slightly in the front left side. It is not very noticeable, but the measurements were significant enough to qualify her for a helmet and with some possible upcoming hospitals stays, we decided to pursue it. After our initial appointment, June had to come back so they could take measurements to create a helmet specific to her and, more importantly, pick a pattern. We picked up the helmet at the end of the month. The first five days, June worked up to wearing the helmet for 23 hours a day. She gets a 30 minute break in the morning, and a 30 minute break in the evening, when we gave her a bath and cleaned her helmet. The first couple days she sweated profusely as she adjusted to the helmet. We bought a couple fans to help keep her cool, which has helped.

We have started venturing out more as a family, and we were even able to have June's baptism at the end of the month. Unfortunately, with more exposure, June ended up getting very ill following her baptism. About four days after her baptism, June got a stomach bug. Even though she is fed in her intestines, she was not tolerating feeds. We had to stop feeding her and switch to Pedialyte at a reduced rate and work our way back up to full feeds. After a couple days, it seemed like she was back on track, but over the holiday weekend, she developed a bad cough and she would continue coughing until she started vomiting green. Nights were the worst between her not being able to breathe and having coughing fits until she was gagging or vomiting. After a couple visits and late night phone calls to our pediatrician, our doctors decided it was best for us to take June to Chicago to be monitored and run some of the tests that she was scheduled for at the end of the week anyway.

After being admitted last Tuesday, we found out June had parainfluenza virus. Since she was struggling with feeds and losing weight, her surgeon decided to place a PIC line on Wednesday morning to get her nutrition for a couple days. In the afternoon, June went down for the longest esophagram ever (maybe not ever but it certainly felt like it). First the radiology team injected barium through her g tube to see how the stomach was draining. Unfortunately, after 15 to 20 minutes of monitoring, the barium wasn't draining from the stomach. Injecting the barium into the stomach was also suppose to show how her intestine looks after her LADDs procedure last August. Since the barium didn't drain from the stomach, it was difficult to see the intestine between the stomach and j tube. However, after speaking with our surgeon later that day, it sounded like the corrected rotation of her intestine was still in the correct place. During a LADDs procedure, the surgery team stitches all of the small intestine on one side of the body and all the large intestine on the other side (which is why June's appendix was removed). Since the intestine isn't as closely intertwined, it is less likely the intestine will twist again.

The radiology team then stuck a feeding tube down June's nose to inject barium in her esophagus to see how liquids and foods moved through it. The barium also pooled in June's esophagus, even after another 15 to 20 minutes of waiting and tipping the table June was strapped to vertical. Next, they injected barium into June's J tube. Good news finally! The barium moved through the rest of June's intestine and down into her bowel without any problem. Since the barium was still pooling in June's stomach and esophagus, they ended up pulling it out with a syringe (which meant the tube went back down June's nose). June had to have several more X-rays every hour throughout the afternoon and evening so radiology could see that the barium was working its way through her system. Based on the results, June's surgeon explained that she has Gastroparesis, a disorder where the stomach empties very slowly. It can occur after stomach surgery, which June had a few of those. Instead of immediately taking June back into surgery, her doctor prescribed Erythromycin, an antibiotic that is used to treat or prevent different types of infections but potentially could use to regulate the rhythm of her stomach so it will drain properly. Four times a day, we inject .25 ml of Erythromycin through June's G tube. In about two weeks, we will start trying taste feeds (no more than two baby spoonfuls a day) to see if June can tolerate eating food by mouth. If it doesn't work, we will need to consider another surgery in the upcoming months.

  

 Family bike ride to distract from helmet time - June was happy to see everyone else in helmets.

10 Month Photos