June, July, August, September & October Update

We are way behind on writing an update on June. I kept putting off writing, thinking that June might have some significant progress after her surgery that I would be able to write about. Unfortunately, things have been status quo in regards to June's digestive system.

June, July & August

We actually had a wonderful summer! We got out more since we didn't have to worry about germs and viruses with the warm weather and being outside. Most of June and July were spent outside at parks and the pool. June absolutely loved going to the pool. She enjoyed the kiddie pool, but was very taken with floating in the big pool too. While we would hold her upper body, she would kick her legs like a frog and laugh. June also enjoyed being at the park with the rest of the kids. June doesn't get much social interaction, so it was great to have her out around others. We enjoyed going to a wedding as a family, and June tore up the dance floor. We even managed to have a fun day at the St. Louis Zoo, celebrating birthdays with family and godparents without any medical emergencies.

In July, we went to Chicago for testing. We attempted a mini family vacation since we had a couple days of testing. The first day, we met with a pediatric pulmonologist in the north Chicago suburbs. Since June wasn't sick, it wasn't necessarily a productive appointment, but our surgeon wanted us to get connected with one since she is so sick so often in the winter months. The pulmonologist explained that June's constant illnesses could be explained by a couple reasons, and that he would want to meet with us more often closer to the winter months. Last winter, we used June's breathing treatments as a reaction to her getting sick. The doctor recommended that we start her breathing treatments at the end of October/beginning of November and give them twice a day until April. The rationale behind this was that the medicine would stimulate June's airway to keep it open. With June's tracheomalacia (where the tracheal support cartilage is soft that the trachea is able to partly collapse - in June's case, this is where her esophagus was detached from her trachea), a common cold, runny nose, or cough quickly becomes a serious upper respiratory infection leading to June not being able to breath. Last year, June was sick from November to April - we would get her over an infection, only to have her catch another one. She ended up on an oral steroid every month and even multiple times a month. Her pediatrician told us that the negative side-effects of oral steroids being prescribed so often is that they can stunt a child's growth.


After the appointment at the pulmonologist, we headed to Chicago for a speech appointment. At this point, they don't think June is aspirating, but they wanted us to continue to add Thick-It to her water just in case. After our appointments, we went to the Maggie Daley Park. Sawyer had a blast running around on the playground, and June enjoyed the swings. While swinging, someone told us they were giving away pints of ice cream (gelato). June loves ice cream, and can actually it eat, so it didn't take very long to convince her to ditch the swings for some vanilla gelato. For dinner, we were able to meet Andy (Jason's childhood friend and groomsman), Alicia, and kids for pizza.

The next day, the girls dropped the boys off at the park again and headed to June's surgery appointment. We had June's tubes changed. June hadn't been vomiting or spitting out her food for about three weeks, so it seemed like the nissen had finally loosened and everything was going as planned. Of course, the next morning, June vomited five times as we were trying to leave the hotel, including right in the middle of the lobby floor (facepalm). After the appointment, we were able to meet up with Jeanne and meet baby Collette since they were on the Northwestern Medical Campus for a class. We then headed to Lincoln Park Zoo with Kelsy and had dinner at the Rainforest Cafe with Spike and Kelsy. It was awesome to see the possibilities that we have ahead of us when it comes to taking a vacation. I had an entire suitcase dedicated to June's medical supplies and still managed to forget her feeding bags. Luckily, we were able to get some bags from our surgery appointment that we could use to feed June. So note to self, triple check the packed bags!

Throughout the summer, the vomiting has continued. We would have two to three weeks of nothing, and then one day, June would vomit more than seven times. Although we haven't made much progress with June's eating, we started to see her excel with her speech. By the end of summer, June was stringing a couple of words together for short sentences. June also recouped her lost physical skills from her hospital stay in the spring and got back on track.

September & October

The month of September swiftly brought us back to reality. By the middle of the month, June was very sick. She was coughing so hard, she could barely catch her breath between episodes. Nights were rough - many nights, we were back to her sleeping on my chest while I sat propped up in a chair so she could breathe. It started on a Friday when she woke up slightly warm. At this point, we had already started doing breathing treatments with a steroid twice a day, but June was starting to develop a harsh cough. Although June only had a temperature of 99°F, I had a sinking feeling we were heading toward something more serious. Our pediatrician gave us amoxicillin and an oral steroid. After a week and a half of medicine, she wasn't getting any better, in fact, her cough was getting worse. She was coughing so hard she was vomiting several times a day, and she wasn't able to keep food down because the thick mucus was clogging her esophagus.

We ended up on another oral steroid. Since she was so sick, we also made a trip to Springfield to see June's pulmonologist. (Oh, yeah, we decided to change June's pulmonologist to one closer to home since we anticipated a rough winter. Our surgeon recommended a pediatric pulmonologist in Springfield who she works with on difficult cases residing south of Chicago.) He decided that we should get some testing done with June. The first round included a sweat test to see if she had cystic fibrosis and blood work to test for autoimmune disorders. Since we were headed up to Chicago in October, he wanted her labs done at Lurie's Hospital. He also discussed ordering an airway clearance therapy vest. The vest is designed to assist with the mobilization of retained secretions that, if not removed, may lead to increased rates of respiratory infection, hospitalizations, and reduced lung function. It would simulate the respiratory therapy June receives when she is hospitalized. The therapy vest is very expensive (in the range of $15,000-$20,000), so we are hoping we can get it cleared through insurance and prevent future hospitalizations.

With the exception of a day or two of reprieve, June was sick for most of September and all of October. At the end of October, we headed to Chicago for June's surgery check-up. After talking to June's Speech and Feeding Therapist about tube feeding, we decided to ask to switch from Pedisure to blended diets. In her experience, kids' bodies created a lot less mucus on blended diets (potentially too much diary?). We met with a dietician, and she was on board. While Pedisure has all June's vitamins and nutrients to supplement her inability to consume enough by mouth, it has a lot of unnatural ingredients. June's new blended diet, although pre-made, would be from all organic ingredients.

At this point, we are desperate to try anything that will help June stay healthy and out of the hospital. We are also worried about being able to provide June a "typical" life of a toddler. We want her to be able to go to preschool and be enrolled in some activities, but right now, that doesn't seem possible. Last year, June was sick from November to April - she was on an oral steroid every month (which is concerning because she is building up a tolerance and it can stunt a child's growth). This year, her illness have started earlier and so has the medicine even though June has limited exposure to other kids.

At the end of October, we also had June's re-evaluation for Early Intervention services. June did really well in her evaluations. She is communicating well above her age, so we decided to stop speech services. June's speech therapist is also her feeding therapist, so she will continue to work on speech during her feeding sessions, especially on days when eating isn't going well. June is also caught up in her physical abilities. We are continuing physical therapy service over the winter because when June was hospitalized last winter, she lost about 10% of her physical abilities.
If June is hospitalized this winter, we want to make sure she has services in place to help her gain lost skills. Obviously, June is still behind on her feeding skills, so she will continue to receive feeding therapy twice a month.

Thankfully, June managed to get healthy in time to enjoy some Halloween fun before she caught another cold:

April & May Update

The last two months have been a whirlwind as I wrapped up the first school year at my new job, so I am way behind posting updates on June. Unfortunately, her progress has seemed stagnant to us. While she has been able to keep her J (intestine) tube feeds down at night, she has continued to vomit multiple times a day during meals. Some days she won't vomit at all and eat a lot of food (in June's case that means eating two meals and a snack a day), and other days, she can't keep a puff down, vomiting seven to ten times a day. At our April check-up, we were told that the vomiting was normal as her esophagus was recovering from the surgery. The surgeon also explained that she made the nissen very tight so it may not be letting food through. June came home from her hospital stay with RSV, so they thought  all the vomiting was because of the congestion from her illness that she couldn't get up or down. 

The surgeon decided to use a swallow study and esophagram to exam the function of her esophagus. June is very familiar with the room where they perform the studies, and she was not thrilled to be there. She didn't cooperate for the swallow study, but they did see her aspirate (breathe into her lungs) thin liquids, so they recommended that she no longer drink water. They weren't sure if the aspiration was because she was upset or if there is something wrong with her swallow. She was sent home with instructions to drink liquids the consistency of smoothies or nectar. We bought Thick-It, which is a product that helps people with dysphagia drink liquids. The dry mix thickens liquids without adding flavor or texture so she can drink water without it going into her lungs. The esophagram showed that her esophagus isn't working "normally". The surgeon said that this isn't surprising - her esophagus (and any TEF baby's esophagus) doesn't contract regularly because the nerves from the two different sections never learned how to communicate correctly; however, her esophagus function did seem to be struggling more than they originally thought. They plan to keep an eye on it, and depending on her progress, will determine next steps that need to be taken. Worst case scenario is that June's esophagus will need to be replaced with a section of her intestines, but we were assured that she was a ways away from this procedure.

In May, we traveled up to Chicago for another appointment. June was still vomiting multiple times a day but was no longer sick. We have gotten really good at knowing when it is coming so we can dive across the room and catch it, and we were able to catch it on video so we could show June's surgeon. When they saw the video, they agreed that what was happening was not normal. We also mentioned our concern about how often June gets sick. This past winter she had RSV twice and pneumonia. She had some sort of a respiratory infection every month to the point that she was on some sort of an oral steroid or inhalation steroid most of the time from November to April. We are not sure how we are going to manage school for June because she has very limited exposure right now and is constantly sick during the winter months. 

At the May appointment, we went through our cleaning routine with the surgeon, and she suggested that maybe June isn't getting sick from exposure but from aspirating, which is then complicated by her inability to fight off any sort of bug. They decided they want to admit her again this summer to perform another bronchoscopy to look at how June is swallowing. We've been noticing that she is gagging on her own spit throughout the day, and the surgeon feels that there is something "off" about June's swallow. June's doctor also discussed having another echocardiogram (ultrasound of her heart) done and setting June up with a pulmonologist. Unfortunately, we are having some issues with getting in to see some of these doctors until October, so we are hoping for some guidance on how to everything scheduled in a more timely manner at our appointment next week. Despite all of these complications, June still continues to express interest in food and wanting to eat. We try to make meal times fun and inclusive, but we are very concerned her eagerness to eat will start to subside since she vomits anytime she eats more than a few bites. A couple weeks ago the vomiting stopped for two weeks, and we thought the nissen was finally loosening, but this past week the vomiting came back with a vengeance. There are days I wish we had some sort of a diagnosis because that might mean more structure and some sort of a procedure to follow to treat her. It seems like as soon as we find a solution for one thing, something else develops that wasn't previously presented to us as a concern or possible complication. I don't think a diagnosis would make anything any easier - it just might provide us with some more resources. With all our time in hospitals, we have noticed the committees of medical professionals or parents who have children with certain diagnosis that have dedicated amazing energy to efforts such as resources and treatment for those suffering a similar diagnosis. It seems that the TEF community is smaller and more variant, and we just haven't had the time to research as much as we would like since we are just trying to get through the day-to-day. We did get connected to another woman in the area who has a daughter who has followed a similar path to June. The little girl is a couple years older, so we are hoping this might provide some more guidance on what to expect as a parent. I met her briefly one evening, and she gave us a wealth of information already to look into. We like our doctors, but I think it is hard for them to understand why we are so concerned - they see a lot of different cases varying on degree of complexity, while we just see what June is going through and our inability to provide her a somewhat normal day. Luckily, we have a supportive community that has been overwhelming and amazing in what they have provided our family. We cannot thank everyone enough for their contributions to June's medical expenses and meals. Your words and follows are encouraging enough, but the support we received after June's most recent month-long hospital stay helped alleviate some stress in our lives.

While we have once again realized that this latest surgery is still not the cure-all for June, there are some positives. June is now down to continuous feeds for only 12 hours, so she is essentially on them only during the night. Although she looked adorable in her little backpack, we are happy that some of her constraints are off. She has also been able to maintain her weight. She went from a malnourished 16 pounds to 23.5 pounds in two-and-a-half months. And although it is still a little big on her, she graduated to 18-month clothing before her second birthday. The warmer weather has also allowed us to get out more with June. The summer is in full swing, and June has been going to watch her brother attempt to ball t-ball and soccer as well as taking her dogs for walks (we provide a lot of entertainment for the neighborhood with mommy walking two dogs and two kids) and going to the pool.

She is even getting to participate in an activity herself - the Fun Runs. She loved her first run. It took her a little longer than the others since she took off in the opposite direction, but she was insistent on running the whole thing herself and crossed the finish line in style with a dress, flamingo crocs and flamingo sunhat! 

We also made it to see her cousin Abby graduate from high school (a rare and sometimes nerve-

racking event to be around so many people at an indoor event and not know their health status :)):

We are hoping for a summer full of answers, but hopefully, one we can enjoy as well!

Surgery Update

Let me start with the most important news: WE ARE HOME!!! June was discharged yesterday afternoon - a month after she was first admitted. This was the longest stay we have had since back in the NICU days and triple the travel time. Whew!

Time to backtrack to the day of her surgery and everything that has happened since we've had little time to post much of an update. June's surgery was scheduled for Thursday, March 9. She was put on the schedule for 12:45 (the last scheduled surgery for the day) so our surgeon would have plenty of time to address what needed to be done, especially since this was the first time June's surgeon had operated on her GI tract. We also had no idea how long the surgery would be since they didn't know if they would be cutting her open and performing the surgery laparoscopically. June had a fun morning playing on the 12th floor in the Family Life Center and walking the halls. She started getting hungry, and unfortunately, she started pointing the the cabinet (where she knew we kept the pretzels) and signing for "more food please". At 12:30, we went down to wait in one of the surgery prep rooms. We met with the anesthesiologist and surgeon to answer last-minute questions. They took June back at 1:30. They gave her of dose of "happy juice" so she wouldn't get upset when they took her back. We would get a call from our surgeon's nurse when they made the first cut and then every hour with an update. There was a still a lot of unknown with this surgery, so the update calls were a welcomed relief. At 2:30, the nurse called to say that they had just made the first incision. This incision was at her belly button to insert a camera so that the surgeon could look at her insides. The last hour had been surgery prep and positioning. At 3:30, I got the call that they ended up needing to cut June open instead of performing the surgery laparoscopically (by camera). The incision would run from her naval to her sternum. At 5:00, I got a call that they were starting to close June up, which would take about 45 minutes to an hour.

Waiting to go into surgery

The surgeon came out to meet with me at 6:15 pm. Everything had gone well. June's stomach was on the smaller side but not the smallest stomach she had seen. She was able to pull the stomach up around her esophagus to tighten the opening so that it would be harder for June to vomit. Imagine taking a towel and using your forearms to wrap it up around your shoulders. She also moved the interior placement of June's gastrostomy (G) tube. The button on the surface of June's stomach stayed in the same location, but the balloon inside June's stomach that holds the tube in place was pushing on her pylorus (connection between her stomach and intestine). June had an atresia (blockage) at her pylorus that was repaired in the NICU. The surgeon decided that the balloon pushing on the repair was putting unnecessary pressure on it, and the balloon might be blocking the stomach's ability to drain properly. We also discussed what the future would hold for June. It will be important for June to learn to take small bites (no hot dogs - ever) and wash down the food with sips of liquid. June will need lots of time to eat meals in slow, small bites.

I got back to see a snoozing June at 7:00 pm. We got her back up to the room and settled in her bed. Since they were able to remove the breathing tube, she did not need to go to the Pediatric Intensive Care Unit and could go back to the room we had been staying in. They did, however, give her a nasal cannula because they wanted to make sure she took deep enough breaths and didn't stop breathing because of the pain from cutting into her abdomen. The first night was very rough for June. She was in a lot of pain - anytime she moved or her bed was bumped, she screamed and shook. There were some hours that she screamed out in pain every couple minutes. She was on a continuous morphine drip and had a pain button that I could push for her every eight minutes. Some hours she was able to tolerate the pain with just the continuous drip, but there were several hours where I had to stay up to push the button every eight minutes. June was also very congested, and she started vomiting thick secretions that she would gag and choke on because she couldn't swallow them with the swelling in her stomach or throw them up because she was in too much pain to wretch.


In the morning, our day nurse helped tremendously with getting June more comfortable. She got her pain medication switched to a different narcotic that made a difference in less than an hour. She also contacted the doctors regarding June's respiratory problems. They prescribed breathing treatments every six hours to thin the secretions so June could breath and have an easier time of geting them out of her body. Once June's pain was under control, we got her out of bed and into my lap so we could cuddle for seven hours. The next night was rough for June too. She spent most of the night gagging and vomiting. She had a desaturation of her oxygen levels after one session, so they increased her oxygen and took a chest X-ray.

Each day, we started seeing more and more of our little girl's lively personality coming back. She still struggled with the thick secretions that were lodged in her throat. She ended up with the nasal cannula being put on at night because that is when she struggled the most with breathing. After 48 hours (Sunday), they tried giving her Pedialyte in her G tube. Two bags were connected to her G tube with a splitter - one held the Pedialyte and the other was where excess Pedialyte, gas, and air could escape. All of the Pedialyte ended up in the excess bag, so they stopped feeds. The next day (Monday), they tried again to give her Pedialyte. The same thing happened again; however, after they gave her erythromycin (the medication we give June four times a day so her stomach nerves are stimulated and work properly), her stomach started processing the Pedialyte. On Tuesday, they switch her to Pedisure and started working the rate up slowly. June was also cleared to eat soft foods, such as yogurt, applesauce, mashed potatoes, and smoothies. June didn't eat much but would have a few bites three times a day. We hit 35 milliliters an hour by Friday, and that is where the problems arose. June started having breathing issues and was vomiting again. On Sunday, she was vomiting Pedisure, which she shouldn't be doing because the Nissen was suppose to prevent vomiting. We had been set to be discharged on Monday (March 20), but with the new developments, June's discharge date was pushed back. June's surgeon switched her feeds to her J tube. Since June was expressing interest in eating, her doctor didn't want to suppress that interest if she continued vomiting. The goal is to get her enough calories to continue to grow while taking pressure off the stomach. We also started draining her stomach 24-7.

On Wednesday, we met with June's surgeon. She felt that June was getting close to being ready for discharge. They were planning to keep her one more day (which would be two weeks out from surgery) but were willing to let her go that day if we were comfortable with the plan. We were more than excited and willing to bring our baby home that day. To give you an idea of where June should be, our surgeon said that typically by two weeks out from an abdominal surgery, kids are cleared to eat regular food. June is still on a very limited soft food diet because her stomach cannot handle the stretching at this point. She will also never end up getting continuous feeds in her stomach because the surgeon doesn't think with her stomach size that she will be able to handle it. June receives feeds 20 hours a day to get the calories she needs and can eat foods (yogurt, applesauce, baby food) for breakfast, lunch, and dinner. Her stomach is also drained 24-7. To make matters a little easier (since the last time we were on continuous feeds June was just taking her first steps and now she is running wild with her brother), June now carries around a backpack with her food and drained stomach contents. She actually does really well with the bag and doesn't notice that is on most of the time. We have a long road and a lot of work ahead of us, but the moments that have followed since we brought June home on Wednesday, March 22 is more than worth it.

June loves her new flamingo hat - it is perfect to hide from the nurses:

 Home At Last!

She's ready to roll:

January/February Update

As you can tell by some photo posts, June Bug landed back in the hospital. Despite all our efforts, hand sanitizer, baths, changing clothes, and Clorax wipes, the nasty winter bugs got to June. With June's ongoing struggle to keep food in her system, she lost too much weight and our surgeon decided it was best to hospitalize her until she was well enough for surgery. But I am skipping several moments along our rollercoaster of a medical journey, so I will go back and share updates on what these last two months first. The first week of January was busy as we started learning about what medicines and medical supplies wouldn't be covered by insurance. To me, that aspect of this journey has been the most frustrating. While, I hope that the doctors will figure

out how to help our daughter have a somewhat normal life when it comes to eating, I am really tired of calling to schedule a medical supply delivery or going to pick up a prescription (both which are necessary for June to live under her current treatment plan), only to find out that insurance is no longer covering something we have been using for the last 18 months. We end up spending a great deal of time on the phone with doctor's offices and the insurance company trying to align June's medical needs and what our insurance will cover.

The first week of January was June's annual cardiology appointment. At her last appointment the doctor didn't hear a mumur or see any holes. He thought that he would likely be discharging her in a year. However, this year he did hear a slight heart murmur when listening to her and could identify three holes still in her heart from her echocardiogram. To be on the safe side, he told us to bring her back when she is four for another echocardiogram and exam. He is hopeful by that age he will have a more clear picture of how to proceed with treatment. June was not a huge fan of the appointment, but things started looking up when the nursing staff brought out goldfish. Sawyer also enjoyed the goldfish and loved the crayons, coloring book and stickers he scored out of the visit.

The rest of January was uneventful. She had weekly weight checks, but we didn't see much gain - she would lose a couple ounces one week, gain some more the next, only to lose it all again the week after. We still had daily vomit sessions during the night. We typically set a 3 a.m. alarm to try to set her upright or draw fluids out of her stomach to prevent the throwing up, but we didn't always make it in time. If June is awake enough, she knows to roll over and get up on her hands and knees so she doesn't get anything in her pretty curls. The J tube seemed to be causing issues - we had reached a point where after three hours of J tube feeds at 12 milliliters (2.5 teaspoons) an hour, June was getting sick. Our surgeon decided to try having her drink Pedisure to promote calorie intake and retention. We also experimented with it in the G tube, but her reflux was too strong to continue any type of tube feeds overnight. Through phone discussions we came to the conclusion with our surgeon that surgery was becoming a must. Our surgeon was hoping to get her to late spring or summer to decrease the chance of her catching an infection.

In the middle of February, June wasn't keeping anything down at night. She had a slight fever and had developed a barky cough going into one of her weight checks. She had lost over a pound in a week. They tested her for RSV, but the test came back negative. However, she did walk out with a 10-day oral steroid to treat her double ear infection. June showed signs of recovery from her infection, but the next week she ended up getting sick after every meal. We were headed in for a weight check where she had lost more weight, so the doctor tested her for the flu. He went ahead and prescribed Tamiflu to be on the safe side. We desperately needed to get more calories in her body, but tube feeds had become impossible without vomiting. We were concerned that the vomiting was only going to cost her more calories. 

Over Presidents' Day weekend, I went on a trip with some amazing women ;-). June seemed sleepy but also showed signs of recovering from her bug. (The flu test had come back negative as well.)  When I came back on Monday, she was very cuddly, but mom's wishful thinking convinced me that she had just really missed me. Tuesday our sitter reported that she was very tired and just wanted to sit and cuddle. By Tuesday night, the only movement she would make was to blink her eyes. Something was very wrong. Tuesday night she got sick around 4 a.m., but she barely reacted. Usually, June cries until her clothes and bed are changed and she is cleaned up. This time she just blankly watched me clean her up. I ended up calling the on-call doctor because she had me so worried, and I was home alone. The doctor was concerned with June's complex medical history that our local ER wouldn't know what to do with her. I was better off getting her in to see Dr. Traeger later that day. When the office opened up, I called and made an appointment. 

In the meantime, our surgeon's PA called to check in on June Wednesday afternoon. We had an appointment on Friday to get her tubes changed and discuss surgery options. They had been getting the weekly weight checks and were very concerned when I explained how June was acting. Our surgeon wanted to admit her that day but wanted us to go to the pediatric appointment first. After our appointment, we were told we could try waiting until Friday when she headed to Chicago for her appointment but to expect to stay. Since Jason has Wednesday and Thursday nights off, we decided we might as well get a jump on the hospitalization without costing us both too many sick days. The hospital was crowded, but they were able to get a bed for June. She checked into Lurie's at 9 p.m. on Wednesday, February 22. 

The next morning, they scheduled her for a short procedure to have a central line placed in a vein in her arm that leads to her heart. Through the central line, they give her TPN and lipids (essentially formulas that deliver calories and fats straight into the blood stream when the gastrointestinal track needs to be avoided). June was on TPN for the first 12 weeks of life and again during one of her hospital stays, so we are very familiar with this process. That evening she was allowed to eat, but ended up getting sick at night so they stopped oral feeds the next day. Our surgeon stopped by to discuss game plan. Initially, the thought was to keep her for a week to get some weight back and return at the end of March (mommy's spring break) to have the re-do surgery for her nissen fundoplication. The Nissen procedure will wrap part of June's stomach around her esophagus to treat her severe Gastroesophageal reflux disease (GERD). She has had this done once before but the stitches came out so there is an increased risk with a re-do surgery.

Unfortunately, the doctor felt that it was going to take June two weeks to hit the goal weight before surgery could be done. She wanted to keep June until she reached 20 pounds (essentially got back on the growth curve at the third percentile) and then operate instead of sending her home and risking more infections. June was again allowed to eat, but has been vomiting most nights. As you can see in the picture to the left, June has this hospital gig down - she even manages her machines, feeds, and medicines herself.

Last week, June had a swallow study and esophagram. Every time June drinks water or milk, she coughs and sputters. There was concern she might be getting the liquids in her lungs. Through the swallow study, they found that while the liquid isn't going into her lungs, it is dripping across her vocal cords. After surgery, we will work with speech to determine if she needs her liquids thickened and the best approach to giving her liquids. The esophagram showed that June's esophagus isn't constricting properly. After surgery, we will attempt to train the esophagus to properly constrict in order to push food through. However, there is a chance (worst case) that June will need to have her esophagus replaced if it cannot be retrained.

We are nearing the end of week two-with several trips back and forth to Chicago as mommy, daddy, grandparents rotate to keep June company 24-7 while trying to maintain some sort of routine for Sawyer. Although June hasn't hit 20 pounds (she has plateaued at 19 pounds 10 ounces), she will have surgery tomorrow (Thursday, March 9). The surgeon is planning on doing June's procedure last so that she has plenty of time to determine what will be best for June. Right now, they don't even have a prediction on timing because of not knowing what they are going to find. I do know that they will start by putting a camera through June's bellybutton to look an her internally. They will then determine what exactly they need to do and if they can do it laparoscopic (through small incisions in her bellybutton using a camera) or if they will need to cut her open. Since this is a re-do surgery and because of the number of surgeries June has already had on her abdomen area, there are some more risks when it comes to infection, inadvertently injuring something internally, or negative reaction to the surgeons working on a already sensitive area. Future post on her surgery and post-opt to come, but for now, just enjoy the pics: