Bowling for CHARGErs

Crystal, a good friend of ours, has done a lot of work organizing a day of bowling, raffles, food, face painting, and much more to raise money for the CHARGE Syndrome Foundation in honor of her daughter Eva, and in memory of Joshua and Ava. Please join in the fun this Saturday!

Joshua's Journeys #11 Trach-e-what?

Today is the anniversary of Josh's tracheostomy. Dr. Morganstein was the ENT that performed the surgery. He wanted to do it when it was previously scheduled and seemed upset as well about the surgery not happening. We have years to discuss a lot of the details going on behind the scenes, and perhaps I am in a very good mood today, but I don't want to get into the politics behind things. Besides, we were so excited the surgery was going through and we would see Josh off the ventilator soon.

The surgery happened, we saw our baby boy's face free of tubes and tape. Before surgery Phil went in to see Josh, then I proceeded after he came back to be with Joey. We both used holy water to make the sign of the cross on Joshua and say a prayer of our own with him. I was able to hold him and walk him to the elevator. On the opposite side of the elevator is where I was to leave. The door opened and Tina went and got Phil and Joey. We put Joey and Josh's heads together as a good luck brotherly love tap, and it was off to the OR for Josh and a long wait for us. When he first came out of surgery his face was bloated, his tongue kinda pushed out, and he was very sleepy. It was Josh's "surgery face." We learned it well. He had sutures underneath the trach and we kept wondering what the stoma (the hole under the trach) looked like. Josh came back with the ventilator on his trach and would remain that way for a few days to adapt to his new airway. He officially became vent free on 9/15/08. It was a great day- celebrated by the NICU staff with a Mickey Mouse and Disney friends sign over his crib to congratulate him.

The first trach change was done a week after the surgery by the ENT. After that it was up to Phil and I to learn Josh's trach care. So much for the simple things new parents struggle with: when to feed, being up at night hearing their crying baby, we were now faced with a new airway in which we had to learn how to change the trach, gauze dressings, clean trachs, suction, and learn all the new sounds or silences of a trached baby.

It was interesting to learn the new sounds we would hear, and it made us feel like we had a closer bond to Joshua than anyone else. It was interesting to us that after time it was still hard for others to discern a sneeze over a hiccup or cough, a cry when he was mad, or when he was trying to talk. Many people complain of no sleep at night with a new baby, let alone twins. We learned after Josh came home to sleep with one ear open because he wouldn't cry we would have to know his cough over the monitor and react quickly to go in and suction him. It was a sixth sense that was picked up quickly. I am glad I am able to sleep longer than an hour or two at a time each night, but I would take it all back in a heartbeat. We will go into his trach care at another time. It is very involved, but something that we don't want to forget either. We learned it, and learned it well, and would instruct and insist on our way of doing things when Josh was re-hospitalized at CDH or Children's. I miss the sound of the suction machine, the sound of Josh coughing for attention, the relaxed look on his face during trach changes showing us total trust, his noses (humidifying vents put on the end of his trach to filter out dust and keep his airway moist like our noses do for us) scattered about the room, and the quacking of his voice when he first found it. It was definitely a unique experience and a challenge of parenthood. We had learned of many parents that did not or could not care for their children on their own out of fear, lack of confidence in their ability, and many other reasons. I was amazed to see Phil (having no prior health care experience) jump right in and do whatever was needed, he is an amazing father to two amazing boys.

Another cousin!

We are so excited to help spread the GREAT news that Christy (Joey's godmother, my sister) and Chris (Josh's godfather) are expecting baby number 2! Andrew will be getting a run for his money with a sister or brother around, but he sure is proud to become a big brother! We are so happy for all three of them and can't wait for their new arrival due in April! Congratulations Christy, Chris, and Andrew!

Parks and Picking

Every once in a while we realize we've given the camera a break and decide to go snap happy with Joey. Thursday was one of those days. I actually remembered to take the camera with me when we went to one of the many parks we visit in our neighborhood. I don't want to sound like a total hippie here, but I love our town mostly for its parks. We have a great parks and recreation district (not just because I work for them too!). I love the park behind our house that we can walk to- one end with more age appropriate stuff for Joey, the other for when he gets older, and of course Josh's tree is there. But we have to many other great parks around us. It is just nice to see Joey playing outside, without all the sounds and lighted toys inside, being a boy playing in the dirt, and of course getting some bumps and bruises. Joey met the asphalt earlier in the week at a different park when he was trying to push his wagon without looking in front of him. He took it well though, getting up quickly and heading back into the dirt! He also enjoyed waving at people and their dogs as they passed by.



On Saturday we went apple picking! This is Joey's second time out there, but last year he was carried in the Baby Bjorn and slept 95% of the time. This year he did pretty well at matching Andrew apple for apple. He didn't pick all that many because he was so interested in eating his apples. He would get upset if it fell on the ground and we wouldn't let him continue eating the same one. He also had a fun time feeding Daddy apples too. The weather was perfect, and going so early in teh season was great because it was not crowded at all. We were able to go into the country store and walk around, look at the little train that passed overhead, and of course pick up Daddy's favorite apple cider doughnuts! Joey enjoyed a bite or two of that too, as well as some fresh cider! Daddy also got into the spirit of things with Joey and Andrew on the tractors...they sure looked like country bumpkins!

Joshua's Journeys #10 Just Breathe

It is so hard to believe that we are approaching so many anniversaries of Joshua's life. And sadly, it is unbearable and so hard to believe that this month we will be approaching 6 months from his passing. It feels like it was just yesterday, and in some respects it seems so long ago that I held my baby.

As we come to different milestones in Joshua's life we wanted to take the time to remember his surgeries (even the frustrations that went along with them), the unique care we were able to provide him, and of course all of the love and fun times we shared.

In the last Joshua's Journey we talked about how Joshua had an emergency baptism because he was going to have a trach and g-tube placed. It was important for us to have both surgeries done at the same time in order to limit his anesthesia exposure since he was so tiny, and we knew he had more surgeries ahead.

Joshua was born 7/3/08 and from that day until 7/15/08 he was on a c-pap (Continued Positive Air Pressure) to help him with his breathing. He seemed to be progressing well and was placed on a nasal cannula from 7/15-7/25. Joshua continued to have oxygen desaturations and was eventually demoted back to the c-pap 7/25 until 8/7/08. On 8/7/08 it was determined that Joshua needed to be put on a ventilator. Joshua had trachealmalasia, a floppy airway so to speak where he would stop breathing and desat every now and again. He needed something to keep his airway opened, which the ventilator did, but that would not be a long term solution. It was determined that Joshua would have a tracheostomy. To jump ahead a little bit, Josh had also been ng tube fed (nasogastrically- nose to stomach). As a matter of fact, Joey was also ng tube fed for the first few days of life. They both received 100% breastmilk, just a different route than the average term baby. Joey was able to start bottle feeding after a few days, however Josh was going to need some help for a while. Instead of the discomfort of the ng tube Josh was going to receive a g-tube so the milk could go directly into his belly. It was decided that both the gastrostomy-tube and tracheostomy could be done together. We were planning on this all happening on Monday 8/11. This was why the baptism became an emergency for us.

So, Phil (taking off of work once again), Joey, and I headed to the hospital. Joey was greeted by many nurses since it had only been a few weeks since he'd been home they were all over him. Bethany had set up a room for us in Peds with a crib for Joey, a card welcoming him back, and all the fixings he could need. Tina came in on her day off to make sure she was there for Josh on his day of surgery. Josh had the best of the best when it came to primary nurses. He had the ones that cared and loved him as if he was their own.

We signed the papers, Phil took his time with Josh while I watched Joey, and then we switched so I could watch Josh go into dream land and be taken away. When I went back to hold Josh before the surgery the look on Tina's face said something was very wrong. Without many words she shook her head and said "Its not happening." Apparently there was some confusion going on where the anesthesiologists were not comfortable with Josh because of his heart conditions. Dr. Kumar, one of the best cardiologists came up and spoke to the doctors and anesthesiologists saying she thought he would be fine with the surgeries and anesthesia. Many conferences and hours passed. The anticipation of the day and the stress behind it was elevated beyond belief. The procedures were supposed to have started at 9am, now being 3pm Dr. Morganstein, the ENT who was to do Josh's tracheostomy came in. He was just as disappointed as we were and was going to work on trying to do his surgery that day even if the other did not happen. Dr. Geisler the gastric doctor came in and after hours, and days of anxiety Phil hit his limit. Phil swore and told the doctor his disappointment with him. The director of the NICU followed in to apologize. Neither surgery would be happening that day. It was apparent that the NICU was embarrassed for this oversight, but it still did not make things right. The anesthesiologist that was on was not comfortable having Josh under their care, even with all the other doctors' approval. It was the beginning of many frustrating, enraging, adrenaline filled days. From this point on Phil decided to call doctors by their first names. They should not be put on pedestals but kept at our human level. Yes everyone makes mistakes, doctors included, so everyone should be treated with the same respect. The only positive of this day was that we were able to sneak Joey into the NICU to see his brother. Joey went home after 2 weeks (7/21/08 to be exact), and once out of the NICU a baby can't return even if its for a sibling. But, under the ridiculous circumstances of the day the best nurses were able to help us get Joey in for a few minutes of much needed brother time. Thank goodness Jeff and the other docs didn't find out!

Without moving ahead at this point, Josh was to remain on the ventilator until his trach surgery could be rescheduled. Josh was on a ventilator from from 8/7/08 until 9/10/08 when he finally had his tracheostomy. Next week we will talk about his trach surgery and what we had to learn in order to care for him.

Update on Eva

Eva successfully made it through her surgery and is doing well. She is in a bright pink cast from the waist down. She is in the hospital overnight, and will hopefully be home tomorrow. I'm sure it has been a long day for Eva, and her parents. Now to hope for a speedy recovery!

Eva's Having Surgery

Please keep Eva and her family in your thoughts and prayers today. Eva is having surgery on her hips. Her hips were starting to dislocate and the muscles were really tight, so they are going to do a surgery which will require her to be in a cast from the hips down for a few weeks. We hope she has an easy surgery and a speedy recovery. Eva is a CHARGE kiddo that has had her share of surgeries (heart surgery, g-tube...now out!, and ear surgery to name a few), but every surgery a child has is a big deal. We are thinking of you Eva. Josh will be watching out for his girlfriend.