Pray for Sophia Day

On Wednesday, May 29 Sophia will be admitted to the hospital around 9 am for her first attempt in pulling her trach for permanent removal. Sophia has reached the point in which doctors feel comfortable in starting the decanulation process. We have a 50/50 percent chance of succeeding or failing. The process will consist of a sleep study with her trach out in which they will pull her trach, cover her stoma, and connect her to many monitors. She could and most likely will not pass on her first attempt at decannulating. The doctors are optimistic that she is ready to TRY. This is either going to be a quick day or a long anxious day. This could be a ugh there is always next time kinda day or this could be a take your breath away kinda miracle day. All we can do is pray. Believe in miracles. And allow our hearts to fill with hope. I am going to try and mask my self in courage and a shield of self awareness so not to be overwhelm with despair or heartache if she does not pass this time. I will keep my heart open for possibilities. So I am asking, that on May 29th for you all to keep Sophia in your prayers throughout the entire day. She is a little girl who deserves big amazing things.

I Don't Say It Enough!

I really don't say it enough but I am so so lucky to have Sophia as my daughter. I am so lucky to be her mother. I grow each day as she does. I learn to see the world with my generous and wondering eyes. Simply watching her play, gives me great joy. She is learning so much daily. She is so smart. She knows more signs than I can count, learned to ride her car, and just yesterday she learned A B C in sign letters. Sophia is more than just smart. She is so sweet. She shows love so purely. I was getting frustrated last night because it was well past bedtime and she was refusing to sleep. She would fall asleep and as soon as I laid her in her bed she would be awake. I picked her up for the 4 or 5th time after having her asleep and said now Soph this needs to stop and then she just wrapped both of her arms right around my neck and hung there tightly. Melted my heart. I quickly realized that it is in those late nights, I can be overwhelmed with true love.....


I have so much love for Sophia. I have so much love for my husband. Watching her love Sophia so much as made me love him even that much more. So if I haven't said it enough, I am so blessed beyond belief to have them both. I draw strength from them daily. We may have hard days and nights, but they are getting easier. Rough days make the good ones even more sweet. This weekend we went on our first family venture to the zoo. It was a success. We went into the dolphin show. They don't allow strollers but because we have it packed full of her gear we asked if we could bring it with us. They put out chairs for us in the front of the bleachers. Sophia was a hoot. She was smiling and waving at the crowd. When the music started for the show, she began clapping and watching. It literally brought tears to my eyes knowing the pure joy she was having. I can not wait to create more of those memories with her and the hubs. We are better people because of Sophia. She lights our world.

Inquiring Minds

We, as a family, are always growing and always learning something new. Yesterday, I learned the sign for weather and about ankle braces. Things I never thought I would have to learn are now things I am most curious to find out. Everyday for our whole lives, we will be learning and adapting to the new normal of what is our lives. I've learned so much medical stuff that I easily have my lpn or cna. Too bad my credentials won't land me a job. There are so many things I am starting to think ahead about. I was talking with our PA and she was mentioning things about how deaf or hard of hearing people can not or have a difficult time when calling into 911 because they can't hear to talk on the phones. How there are relay systems deaf and hard of hearing people have to use when making phone calls. That technology is going to be our best friend when it comes to adapting to Sophia's hearing loss. Who would have thought?! I need to look into things like flashing smoke alarms, light up alarms clocks, flashing doorbells, call systems, etc. Wow, where do I start? Does insurance cover these things? It may be a little down the road but they are in sight. We were even talking about school programs for hard of hearing kids. Are there preschool programs and/or daycare programs for deaf and hard of hearing kids. What types of school will I send her too? So many questions... Right now, we are discussing putting Sophia in an ankle support brace to kick start her walking. She has very low muscle tone and her balance is wobbly. Our PT and doctors believe this will be the ticket to getting to walk quickly. She is cruising all around the furniture but is still too unstable to stand. The doctor said she often puts kids in these types of supports when they are at Sophia's stage and they take off walking in just a few weeks! Ill take that. Sophia will be so fun as a walker:) Currently, I am awaiting the results from the cardiology study. I am assuming at this point no news is good news. Also, we are still in the waits of this sleep study. Things keep pushing us back. I am eager to get on with it but at the same time I know the more time we wait the better chance Sophia may have to succeed. This post is a little rambley but that is often how my mind works these days. One minute I am thinking about what medical supplies we need to order, how does Sophia secretion seem today, what should I make for dinner, I wonder if we can go to the park today, why haven't they called me for the interview yet, I wonder how you say giraffe in sign language, I just wish I could make cookies for Sophia to eat, I wonder when her trach come out, daydream about taking our baby to the beach, remember sand and trachs don't mix or water for that matter, I need a better solution for the bath tub, I wonder if my husband and I can go on a date this month, I should go for a run, run I mean walk, I wonder if Ellen has read my blog, I need to learn to sew and the next minute I am thinking of a new game or activity to do with Sophia. Then I start thinking if I am doing enough for her, what can I be doing better at, are there different exercises to do or toys that will help her learn this or that. It's really a vicious cycle of thoughts in my mind.

Home again...Again.

What an incredibly long week this has been. I am utterly exhausted and currently running on very few hours of sleep in days. Sleep is hard to come by when you have a sick child and even harder to come by when in and out of the hospital and answering constant monitor alarms. We are finally back home, again. We are hoping to stay here longer than a day this time. Last Sunday, Sophia came down with an awful awful virus. She was sick. Very very sick. For three days all she did was sleep and diarrhea. When she did wake she barely had the energy to open her eyes. She would look around the room for a few minutes then fall right back to sleep. It was awful seeing her soo weak and soo sick. Wednesday came around and she was perking up. Not significantly but more alert and able to stay awake for hours at a time. They took her iv off and wanted to see if she could maintain her levels without help. She was able to do so and by Thursday morning the diarrhea had finally stopped. However, Tuesday night her heart rate kept dropping very low. Around  60s and 50s. I brought it to there attention that this was not normal and they said they would watch her close. Wednesday around bedtime, Sophia dropped her heart rate even lower 50s and 40s while asleep. They ordered and EKG immediately. She had three done from 10pm til 9 am Thursday. The referred us to cardiology. Cardiology came around and said something's about sinus bradycardia. Asked about history of heart disease and pace makers?! They reviewed the EKG and concluded that they weren't seeing anything too alarming but insisted Sophia wear a heart harness for the next 24 hrs. They said due to her improved health from the virus and because insurance wouldn't cover wearing the heart harness as an impatient they felt comfortable discharging us Thursday evening around 4pm. We went down to cardiology and they connected sophia to the monitor. So around 5 we finally had the green light. Though Sophia was in better spirits she was still not very playful but we were heading home. As soon as we got home, John and I started to feel horrible. John was dazed and aching all over. I had the chills and was burning up. I got a low grade fever. I put Sophia to sleep and sent John to bed. I tried breaking my fever all while getting up and down every 10 mins all night to silence Sophia's alarms and make sure she was ok because her heart rate was dropping too low again. It was by far the worst night of this whole week. I called the doctor in the morning and she said to watch her closely and since she wasn't symptomatic then I could bring her into clinic first thing Monday but if her heart rate dropped again throughout the night to bring her back to Riley. So around 2 am we packed her up and headed back to Riley with no sleep for us. They admitted us to the heart center and connected Sophia to telemetry. Telemetry is where someone is continually watching her heart rhythm through a monitor. They kept us over night to get a "good" reading. This morning they came in and said it didn't record anything too significant. Lowest averaged in the 60s which they were okay with and oxygen levels were between 94-100. This is all great. They will want us to follow up as outpatient by the end of the week when the results from the heart harness are back. I truly hope this is all stemming from Sophia being completely worn out from the virus and nothing more. I really really hope that she sleeps ok through the night tonight at home and no more low alarms. I truly do not want to be back at Riley anytime soon. Prayers to continue.... I am going to nap. Wait, moms don't get to nap. Do they?

The Hospital Life

Here we are again, admitted back into Riley hospital. We are getting far to comfortable with hospital life. Sophia is in very lousy shape right now. I have never seen her this weak since the first couple weeks of her life in the nicu. She's very weak, sleeping all day and night. No energy for anything. Thursday morning, I was subbing and got a call from our nurse that Sophia was throwing up nonstop, which is not usual for soph. I called her pediatrician right away and made her an appointment. She ended up getting a slight fever that broke with Tylenol and by the time the appointment was she was in better spirits, of course. As soon as we got home from the doctor she had another fever and more throwing up. We got both under control and she went to bed sound. Friday she seemed a little better until the afternoon. Then the fever returned, we called the doctor for the third time and he said it was normal when fighting a "bug" to have low grade fevers. Saturday, Sophia slept away the afternoon and then had constant diarrhea all evening. She tolerated her feeds and pedialyte but just seemed miserable. She slept the night and woke up in the morning and looked completely different. Sunken eyes, dry mouth, blue hands. It scared me. She looked like a different baby. We then got in the car and headed straight to the Riley ER. I felt horrible seeing Sophia in that condition. I felt like I had failed her. She was admitted with severe dehydration and then later we found out she is working through a nasty virus called rotavirus. They said I brought her in right on time because it could have gotten much worse. She lost 2 pounds so quickly. I thought I was doing everything right at home; keeping her fever down, giving her fluids and her pedisure but it wasn't enough. We are looking to be at Riley for probably a week or until Sophia can get all her levels back to normal and come off the IVs. She has been sleeping for two days straight. When she wakes, she is very "out of it". Weak and not her happy little self. It breaks my heart to see her like this. We hibernated all winter to avoid getting the flu or any kind of bug because we feared this the most and look here we are. We have no idea how she contracted the virus but it reinforces the need for everyone to always wash their hands and to be aware if you've been around anyone sick. Heck we could have picked it up visiting the doctors office for our checkups or at the park or who knows. It's pointless to find the source. What is important is trying to get Sophia healthy and home again. In addition to Sophia being so ill with this yucky virus, we are also at risk of getting it too. I really pray our immune systems are strong enough to fight it than Sophia's. the last thing she needs is a sick mommy and daddy too. Please say a little pray for Sophia to fight this virus quickly and for her to get back to her healthy happy playful self and that her parents stay healthy. It is so sad seeing her so uncomfortable. I feel helpless knowing I can't do anything to make her better and even worse that I couldn't prevent her from getting it in the first place even with all the precautions we take daily. Right now, Sophia is asleep. Her levels are getting back to normal however she is still having diarrhea and some vomiting. We will be at Riley until everything is back to normal. Prays for a speedy recovery and a soon homecoming.  Speaking of homecoming, today is the one year anniversary of the day we finally got to bring Sophia home from Riley. It was such a joyous long anticipated day. We were thrilled and anxious for getting her home. It has been a wonderful year of growing and change and love. It is amazing what time does. However, it is quite ironic humor to be celebrating our one year homecoming back in Riley. I guess Sophia wanted to celebrate with her peeps. I will say staying in the new side of Riley is a luxury compared to where we lived for 5 months. I have a cot and a couch and a chair and a TV and a fridge and its just like a hotel hahaha. As I said, we are getting far to use to hospital life.

Side note update: Sophia did have her 8th surgery and procedure on her nose. Her airway looked great during the scope. The doctor wants to wait a few weeks before we schedule the sleep study. This virus is setting us back a bit. However we are still on the right track for trying to get the trach out. I am still not hopeful she will pass the first time around but we are a family the believes in trying our best.

Please say a pray that Sophia pulls through this fast. And say a pray for the hearts of this world. This is the second time in a few short months that my heart is broken for people of this world suffering losses for senseless acts of hatred.

A Glimpse into our Day

I thought I would share with you all a glimpse into our daily routine with Sophia. Normally our day starts pretty early, as does most days when you have young children. In the morning, before I get Sophia out of her crib, I have to disconnect her from the trach collar and unwrap the oximeter probe from her foot. I then turn off the humidity, the oxygen, and the monitors. Then we are free. I usually spend a good few minutes of the morning suctioning Sophia's airway clear. She tends to have a lot of secretions in the morning. After that, I get her a new HME to protect her trach and give her some humidity throughout the day and then put in her hearing aids. The suctioning continues throughout the entire day. I suction Sophia every 5-10 minutes a day. The suction machine goes where ever Sophia goes. It is usually always within mere feet from here and it always requires an outlet to be plugged into. The internal battery on the suction machine (if it is working properly) can last anywhere between 2-4 hours unplugged. I have gone through 4 suction machines already because they just tend to stop working, which is a big problem for us. At 7:30 am, Sophia gets her first feed of the day via her gtube. Sophia only eats Pedisure by gtube 5 times a day. She eats every 3 and half hours. We have another swallow study this month and we hope to be able to introduce foods by mouth. With her morning feed, Sophia also gets her morning medicine. She takes an antibiotic daily for her kidneys, a vitamin daily, and a medicine to help with her secretions. We have already eliminated two prior medicines from the list. It usually takes between an hour and 40 minutes to feed Sophia, each feed. We feed her slowly to help avoid aspiration. We also follow her Pedisure with 2 ounces of water daily to ensure Sophia does not become dehydrated during the day. After her morning feed, I then get Sophia ready for the day. This consists of cleaning her trach site and gtube site, removing and placing new gauze, changing her trach ties, and then getting her dressed. Then depending on the day and time, Sophia normally has therapy with First Steps for the next hour. Sophia see 5 therapists a week for an hour each session. The therapists include: PT, OT, Speech, Developmental therapy, and a parent advisor to work on sign language. In addition to her therapies, the nurses and I work with Sophia daily on her exercises and therapy activities. These include, neck stretches, balance exercises, learning games etc. I truly love having First Steps involved with Sophia. It is like having early preschool and they give us so many ideas we wouldn't have thought of alone. Sophia also really enjoys each of her therapists. By the time therapy is over, it is nap time. Followed by her next feeding and medicine. We also squeeze in lots of play and loving time.  Play, Eat, Play Eat. In the evening, I give Sophia her bath. She loves bath time. Which is great, except it makes mommy nervous because she likes to splash which is unsafe because it could get into her airway. We are very careful. I still use a baby bath with very little water. I am like super hero speed in the water and out. After we get all squeaky clean. I normally change her entire trach depending on the day or otherwise I change her trach ties, place new gauze (Her gauze if changed as needed throughout the day as well), then the usual lotion, pjs, brush hair routine starts. We then start our bedtime routine. Last feed, read, cuddle with lovey bear, and rock to sleep. After Sophia is good and asleep, I take her to her crib and then very carefully connect the probe around her foot, place the trach collar around her neck, turn on the oxygen, monitor and humidity and then turn on baby monitor. Sophia usually sleeps throughout the night. However, I am still up two-three times a night answering false alarms, reconnecting the trach collar hose or generally just checking on her. Then REPEAT. Many times Sophia has at least 2-3 doctors appointments a month. I normally receive at least 1-3 calls a day regarding Sophia for either her medicine, doctors, supply orders, nursing agency etc. I do get nursing help during the work week so that I may work and do our daily tasks to keep the house afloat. The busiest part of our day is suctioning Sophia. It is a 24/7 job. A very important job. I am very grateful to have nursing assistance. I also have to continue to have someone in the car when I do travel with Sophia. Someone has to sit in the back seat with her to suction and watch her in case of an emergency with the trach should occur. Below I am going to post a few pictures of what our day looks like....

 Our second oxygen tank. It stands about 4 feet tall. 

 Gtube and syringe

 Vent stand, humidity, trach collar set up, and other oxygen tank by crib side

 Monitors

 Sophia's room with all her medical stuff

 Sophia's Trach

 The emergency bag and oxygen tank that go with us everywhere

This Could be the Start of Something Good

Well, this could be the start of something good, wouldn't you agree... Tomorrow Sophia makes her 8th trip to the Operating Room. She will be put to sleep yet again to have her airway checked and her nose dilated again. This means she will have an instrument go up her nose and stretch and widen her nasal passage and she will have a bronch scope go down her throat to check to see if her airway is open and no longer collapsing. The past scope showed that her airway remained open when they performed the scope so we are optimistic that it will look good again. After her last trip to the OR, we were able to bring Sophia home that night. We hope that to be the case again for this trip. She will be very sore and tired afterwards but we can manage that at home granted everything else is good too. She normally has bleeding afterwards from her nose and trach, it looks scary but it doesn't last long. I am sure it doesn't feel good either. Prayers are appreciated for a smooth 8th trip to the OR and great outcomes. After the results from scope in the OR tomorrow, doctors will then be scheduling that long awaited sleep study in which they will pull Sophia's trach and see if she can breath without it. Scary thought. Therefore, hidden in tomorrow, could be the start of something wonderful. The official start to working towards getting Sophia's trach out. During our last appointment to pulmonary, the doctor informed me of something I had never been told before. Something that somewhat, floored me. She came in stating, "I must tell you forehand, that many children with CHARGE do not ever decannulate (get their trachs out)." What?!?!? I never have been told this. She then went on to tell me, "However, with that said, developmentally and physically Sophia looks great. Many children with CHARGE syndrome that do not decannulate have very serious heart conditions and do not come off the vent as quickly as Sophia has. With that I am optimistic for Sophia, and it is worth a try now." She then went on to say, that "I needed to tell you that upfront so that you are not devastated if this does not work, and I honestly do not think it will work on this first try but like I said I am optimistic about Sophia. If she fails, we will try it again 6 months later." I then asked her why she thought she was going to fail this time around and she explained to me that it could simply be that her airway still isn't strong enough and by age 2 the airway grows wider on its own despite the floppiness that it will most likely be wide even to stay open. Very worse case scenario is that it is a cranial nerve issue attributing to her breathing issues, in that case, well in that case I will just cross that bridge if we come to that. I cannot let my mind wonder down that path right now. So basically, with that said, the doctors our very optimistic that it is time to start this process with Sophia given her continuing improvements, but the reality is that she simply may not be ready at this time, but it is worth a TRY. I certainly believe you will never know how something turns out unless you try, so try we will. I honestly think it would take a miracle and many prayers for Sophia to pass the sleep study the first time around. We could use them. I cannot imagine our lives with Sophia without a trach. Actually, I can. I daydream about it all the time. Being able to drive around with Sophia on my own, the freedoms it will bring, the less worry and sleeplessness for all of us. It would be a beautiful change in our lives. We could go where ever we want and need, we wouldn't have to worry about having an outlet near by or the battery life of our suction machine. We wouldn't have to haul around an emergency bag and oxygen. We wouldn't have to worry about oxygen running out or ordering more medical supplies. We would be able to freely stay over night places. We wouldn't have to have a nurse with Sophia all the time (granted I love having my nurse support) but what people don't get it is that I would love to be able to have Sophia with me without a need for a nurse. A nurse isn't a free babysitter. She is present because at any moment an emergency could occur with Sophia and it would be neglectful on our behalf not to have a nurse with Sophia, especially when I cannot be there. I do need to work and sleep some times lol. Having the trach out would mean Freedom, on soo many levels. Thinking about those days ahead of us brings tears of joy to my eyes. So I ask for many prayers, that this truly is the start of something good, that perhaps she could pass the first sleep study, that she continues to grow stronger and stronger, that her airway heals, that she can decannulate in the near future, I pray for freedom. I pray for good changes. I pray for the wonderful healing days ahead. I pray for miracles. I thank you all for doing the same.

On a side note, I would also like to ask for prays for myself and my career. I had an initial interview for an art teaching position starting in August. I was told I could expect a second interview and my resume was at the top of the stack, however the second interview wouldn't be until May. I really need this job, so prayers are welcome.