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

May's Update....In June

We are long overdue for an update. Things have been a little hectic with Jason's new shift assignment and wrapping up at my current job and preparing for my new one - not to mention the purpose for this blog: June's medical care.

In April, June had another evaluation by her developmental therapist through Early Intervention. She noted that June was starting to fall behind in her speech milestones - actually, she is falling behind in all of her milestones except for her social skills. Her social skills were developmentally ahead of her age. After a speech assessment in May, her case manager added speech therapy twice a month to her care plan. There are only a certain number of EI speech spots in the area, so June has been on a waiting list for the last month until a therapist has an opening. We will start therapy with Easter Seals soon, and we are very happy she did not have to wait too long for her services. June was also suppose to have a feeding evaluation in May, but it was a week before her airway procedure so we had to reschedule. When she has her evaluation, the therapist will determine what feeding therapy services she will need and how often.

Back in March when June lost weight and was struggling with breathing, a scope showed that she had cysts on her trachea from being pulled on and off the ventilator. In May, we headed back up to Lurie's Children's Hospital to have the cysts removed. June has tracheomalacia, which is where the support cartilage around her trachea is not as strong, allowing the trachea to collapse. The cysts only blocked her airway further as it collapsed so removing them would help with her ability to breath. The procedure took about an hour, where her ENT doctor removed the cysts and soldered where they were so the cysts wouldn't grow back. Because her airway was altered, she had to spend the night in ICU. By the time they brought her up to her room, she was awake - groggy but awake, which was a very nice change. She had a good rest of the day, resting and cuddling. No matter what she goes through, our June Bug has one heck of a positive attitude. She laughed and smiled with her nurses, doctors, mom and grandma all day long.

We were discharged the next day, but had to return a week later for another scope. They used a bronchoscopy to make sure her cysts had not grown back and the structure of her airway was sound. Since they did not have to alter her airway, Jason was able to bring June home after an hour of observation. After the procedure, June's loud breathing decreased significantly. She is still slightly loud on her exhale, which is a characteristic of tracheomalacia and something she will eventually grow out of.


With June's weight loss, her feeds have been increased. She is now being fed continuous through her J tube (placed in her intestine) for 21 hours a day at a rate of 43 milliliters an hour, which is about 1.5 ounces. We had to add Elecare back into her milk to fortify it. After increasing her feeds and fortifying her milk, June finally started gaining weight again. At the end of May, she weighted 16 pounds, 8 ounces - we finally made it to nine month clothing! Unfortunately, we had to go to the doctor this past week, and she has started losing weight again. Her breathing is getting loud again, and she started grabbing at her chest and holding her breath until she turns bright red. We are concerned her acid reflux is getting out of control again. Our doctors now have us alternating her two antacid medications so she is getting a dose every six hours, and they have increased her dosage amount to the most she can receive on both. The reflux could be causing her loud breathing because as her esophagus expands to accommodate the reflux, it puts pressure on her trachea, causing it to close more. It is definitely a concern that she is refluxing up to her neck when she gets fed all the way down in her intestine and her stomach is drained all night.

June should also be getting a new accessory soon. Our PT noticed that the shape of her head has started to change with her recent hospital stays. We were referred to Comprehensive Prosthetics and Orthotics to get her head measured. We are still waiting insurance approval, but the doctor felt confident that June would be approved for a helmet to help shape her head as she continues to grow. Basically, the right side of her skull has shifted forward.

Sawyer turned 3 this month

Helping big brother celebrate - June loved the balloons