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Hotel California

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You can check out anytime you like, but you can never leave….or at least it feels that way sometimes. We are just praying that the fourth time is a charm because the third wasn’t solid enough.

Before I get too deep into Sutton’s not so great news, we do have so much to be thankful for.

Sutton turned six months old on April 14! She has made so much progress over the past month and a half. She is gaining weight and growing strong better than she ever has. She is over the 75 percentile in height/weight. This is great news since she has been hovering at the 50 percent mark at previous doctor visits. Study’s show that if they are at or above 50 percentile at age one, their lung function at age 18 is significantly better than if they have slow growth in the first year. We all had a big cheer for our baby girl when we got the news, and we finally have some of those trademark Burnett cheeks!

Hiatt and Sutton grow closer every day. It is so amazing to watch the two of them interact, although we do have to remind Hiatt that she still can’t do some of the things he does or eat the same food. He will often try to share his snack or feed Sutton. He is constantly making silly faces and they will laugh at each other. He shares his toys with her and will many times cover her up with his own blanket. We have caught him doing everything from reading to her, talking to her and checking her vital signs with the thermometer and stethoscope. He wants to be a part of her treatments and we make sure to give him the important role of turning on the machines we use. Many times, he just wants to hold her and give her hugs and kisses. He is such a good big brother and she loves him the same. They will be best of friends.

Some of you are probably thinking from this picture that Brittany’s dad, Britt, has jumped the gun and already has Sutton in a life vest to go kayaking down the river! That would be a good guess, but we actually got approved for a Chest Percussion Therapy(CPT) vest. We were originally told that we would not see the vest until around age two, but given all of the hospitalizations and viruses, the doctors thought it was better to start early. It is a much more effective way of her pat therapy we were doing by hand twice a day for twenty minutes. It takes the same time, but now we just hold her with her vest on and let the machine do the hard part. So far she doesn’t seem to mind it and it does seem to be much more effective. It sounds like a helicopter flying by, so I keep getting flashbacks of being in the middle east. The most important part is that it is pink and maintains fashion while performing function.

We have been searching for a plan to help raise more money for CFF. We have resorted to the fact that sometimes products sell themselves when placed in front of people. We are in the full swing of fundraising for our spring CFF fundraiser, the Great Strides walk on May 18. We have been putting lots of effort into raising money towards a cure for CF. After the Cycle for Life event last year, we had so man people interested in being a part of our effort, we decided to make Team Sutton Grace our permanent team name for all events and have everybody be a part. We have had great success so far getting people to join our team for the walk and already have people on the team for the bike ride in November. We have big plans for Team Sutton Grace and invite anybody who wants to be a part to take a look at our Team Sutton Grace page on this blog. We always want to make sure that you all now, no matter how formal your involvement is, that each of you is a part of the team through your support. Its not too late to join us on May 18 at Georgia Tech for this years Great Strides walk. We have hopes to raise $10k as a team and are well on our way. We want to end this crazy disease for all of those who have CF and especially our little Sutton.

It’s hard to tell through the mask, but Sutton has a big smile on her face. That smile is our motivation. It is our reminder that if you look through tough times, there is always something to smile about. It reminds us why we spend over two hours a day keeping up with treatments and medicines. It reminds us that we have been blessed with a beautiful gift, a grace, in our lives that touches the hearts of so many.

This past week has been a little rough. Hiatt and Sutton started with croup a week ago and had a few days of that infamous cough. Hiatt continued to get better, but Sutton just couldn’t kick it and the cough slowly turned into a respiratory mess. ER on Monday, mild runny nose on Tuesday, bad runny nose on Wed and another ER visit with respiratory distress, a better Thursday with a manageable runny nose and then comes Friday. We started off in the ER on Friday morning with more respiratory problems and severe congestion. I took three diapers, one bottle and had a plan to be back home by lunch so I rushed out the door without breakfast. After a few breathing treatments and some deep suction, not much improvement was being made so we went for an X-ray. The X-ray showed pneumonia in the lower sections of both lungs and a culture from her Wed ER visit showed bacterial growth. There was no turning back at that point and we made the transition to be admitted to the hospital which can take a while. We were placed in a temporary room for about three hours so that we could wait for a room on 5 West. As I found out later, the nurses on 5 West knew she was there and put in a little extra effort to get a room cleared, cleaned and ready for Sutton. It was such a warm welcome and it is comforting to see such familiar faces.

The doctors came by late evening and got us up to speed on all that is in store for this round of treatment. Due to the pneumonia and the bacterial growth, the plan is to treat her aggressively with antibiotics to get her all cleared up. They are placing a picc line in which is a more secure IV that has much safer access to administer antibiotics. They are also planning to perform a bronchoscope on Monday to get a better idea of what is happening in her lungs and obtain a culture of the bacteria growing to make sure the treatment plan is precise to her needs and clear any bacterial growth from her lungs. We expect at this point to be at the hospital for about two weeks in hopes to clear her up completely.

We feel like we are in good hands with both the doctors and nurses with hopes of getting her past this rough season for all of us. We will continue to keep you updated as things progress. We can’t thank you all enough for everything you do to support us. We are Team Sutton Grace.

To join Team Sutton Grace on May 18 or to donate follow the link below.

http://www.cff.org/great_strides/brittanyburnett

Seeing is Believing

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Many of us have always wondered where our donations actually go when we give. There are many times results that we see that show that the "majority" of our dollars go to a specific area. We are all about the numbers as they apply to results. We want to know if our money is being directed to the right areas and if we are fighting a good cause or just keeping hope alive.

There is no need to wonder about giving to CFF. They are fighting for us every hour, every day, every year until we cure CF. They often say that "We will not stop until we find a cure". The we includes you and I and every single dollar that is donated to the foundation. There are some remarkable milestones that we are reaching and its because of every walk, ride or just simple dollar we raise to find a cure. It doesn’t matter how the dollars get there, it’s the plain and simple fact that they do get there and then are put to work to make a difference.

Our family has put effort into gathering every penny possible to help raise funding. I often get asked what the best idea to raise money and awareness is and I will say that the best idea is yet to come. My dad is putting together a table for awareness and donations at his neighborhood festivals. Brittany’s family recently asked that donations be given in honor of her late grandfather. My niece has organized a bake sale that she has created around the idea of raising money for CFF. It was her own idea and she has done all the work. I should probably give some credit to my sister and brother in law, but it was my niece’s idea. They set up at a big auto-cross event and keep improving the idea to make even more the next time. She is dedicated to something that she believes in and has an emotional attachment to. She is only a young teenager and could be into much more exciting things, but she sets it all aside once a month to create more tomorrows for Sutton and all the other CF patients fighting to win. It doesn’t matter how, it just matters that it happens.

Drugs and treatments are constantly in the works to help better the lives of those with CF. Kalydeco™ is a new oral medication for the treatment of cystic fibrosis, approved by the U.S. Food and Drug Administration (FDA) in January 2012. Kalydeco™ is such an amazing breakthrough for CF. It allows the production of the protein, CFTR, which is the root defect that gives a person CF. One could basically say, that it pretty much, cures the disease.

Kalydeco was named by Forbes as "The Most Important New Drug of 2012"

The most important thing to note here is that it wasn’t necessarily because some drug company believed in it, although it couldn’t happen without them, it was because CFF put forth the funding and determination to make it happen. Forbes goes on to say "Kalydeco™, for cystic fibrosis, is a triumph of genetics and drug development, the first medicine to directly affect the genetic defect that causes the disease." It only affects 4% of the CF population, but it is a start, and it’s not the first breakthrough treatment that CFF has financially backed. They are dedicated to putting your dollars where they count and curing CF. I want to add that while CFF has the rights to the drug, they do not use it for monetary benefit. for example, the rights to another drug funded by CFF were sold in order to make Kalydeco™possible. In reality, your dollars are essentially being recycled to go even further. There are many other drugs and treatments in the works that are being targeted in the same way as Kalydeco™. We have a cure in sight and can’t slow down now, not until we have 100% of CF patients accounted for.

Thanks to all of you who support, not only Sutton, but the foundation and all of those fighting with CF. We will not stop until everybody has a cure and we are on the right path!

Below is a current CF Drug Pipeline showing the current state of drug and treatment development:

Read the Forbes article here : Forbes : The Most Important Drug of 2012

Home Sweet Home, Part III

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Home again and all is well. We had a good day. We had great start with the Cycle for Life Board Meeting. It was great to hear everybody express their excitement, not to have just a great event, but to raise as much money as possible for a cure. The passion in everybody’s voice was so evident as everybody gave their inspiration to fight against CF. I have to say that I was overwhelmed and had nothing to add except that we fight, everyday with everything we can think of, to make sure that Sutton and every other Person with CF will say goodbye to these days. The hours of care and treatment that those fighting against CF go through every day will be gone. People are passionate about many things, but I have never encountered a more passionate group about curing a disease. One day, very soon, CF will stand for Cure Found! We have such great momentum, we can’t slow down.

We got the good word this morning that we were headed home. The process took the better part of the day in order to get all of the prescriptions lined up and all the paperwork in order. I am also willing to bet that it was delayed so that everybody had a chance to say goodbye. It was almost like the end of week at summer camp. We were ready to come home, but the nurses and staff on 5 west are like family to us.

As I was packing and taking everything to the car, I left Sutton in the care of the nurses in the room. WhenI returned to pick her up, she was gone. The shades were open and the room was in an orderly fashion, almost as if we hadn’t been there. I stood there for a second, wondering where my Little Button had gone and then went back to the hallway to find her in the arms of the nurses. They were loving on her and saying their goodbyes. They said they can’t wait to watch her grow up. Wile they don’t ever wish her to have to return, chances are that she might have another stay at some point having CF and they already imagine her running the halls, playing and having a good time.

I’ll try to do better with updates. Probably not as often as the past week, but will keep important news posted. Thanks again to all of you who support us. We are happy to be home together again.

Egleston… Eat, Play, Stay.

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It can’t all be work and no fun at the hospital! We have had several volunteers stop by to see if we need anything. Often times they have great stuff for kids to play with, but mostly older kids. We have had clowns, football players and even dogs stop by for a visit. They are very kind and usually speak to us for a minute and then move on to the next kid who might be a little older and their entertainment is probably a little more fitting.

This morning a young volunteer knocked on the door and asked if she could play with Sutton. She came in carrying a baby toy probably for a child a few months older than Sutton. She began to explain that she had searched through everything they had with Sutton in mind in order to find the best toy they had for her age. She had gone out of her way just to spend some time with Sutton, much more than just a hello. We spoke while she was here and she is a student who volunteers to be around children. She has applied to nursing school and is waiting on her acceptance. She already has the heart of these pediatric nusrses that is so special. She stayed for about 20 minutes and even let me sneak away to get a cup of coffee. She was so engaged and showed such ginuine care for spending the time here. She will go far and I have no doubt that she is in the right place. Hopefully one day, if we ever have to return, we will see her here as a nurse.

As for Sutton, we are making some progress. She has had her Ph probe in for 22 hours and 54 minutes, but who is counting. It is an small computer attached to a probe inside her throat. She has done well with it and we have been very dilligent at pressing one of nine buttons at any given moment over the past 24 hours. Hopefully we will see the results quickly and start working on our exit strategy.

Several Pulmonologists, and ENT, and a GI doctor walk into a bar….well a conference room anyway. They discussed the wheezing and the other issues with reflux and the overall concern of CF to decide how best to move forward. They have determined that Sutton has Tracheomalacia which is a common issue with infants around her age. It is basically a loose or floppy wind pipe that she will grow out of. It is the cause of the wheezing sound and actually sounds much better today. The reflux can aggrevate it, but she has been on reflux meds for a couple of days now and everything seems to be getting better. They are a little more concerned with all of the issues as they relate to CF so they want to be sure everything is looking great before we move to the next step and return home.

My mother was explaining to her mother, my 87 year old grandmother that she had tracheomalacia. My grandmother was concerned and said “They actually gave that poor little baby one of those?” My mother then explained that it wasn’t a tracheostomy. Sometimes the miscommunication over the phone entertains us all.

Many of you have offered to help us in so many ways. It means the world to us. We have so many moving pieces right now, we don’t even know where we need help and to top things off, Hiatt is home sick today. Many of you have just jumped in and suprised us and that has been amazing. Sometimes just knowing that people are so caring and generous is enough. We have been blessed with amazing friends and family. We like to think we have this under control, but the truth is that you all have us under control. Thanks again for thinking of us.

We aren’t in Kansas anymore…

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We have all had a good couple of days bonding if nothing else. Grandparents have been taking care of Hiatt. Grandparents have been hanging out at the hospital. Brittany and I got a date night! We have to look at the bright side of life to keep our head up and drive ahead.

We seem to be getting a lot of news. Good and not great, but definitely nothing bad. It’s been difficult to update due to the fact that there are so many factors in motion and the updates change faster than I can write. They have even changed since I began to write this post.

All of the tests so far are coming back negative for virus and bacteria. This doesn’t mean for sure there is nothing, there is just nothing showing up. The issue is that Sutton still has the “wheezing” and there are a lot of things that could cause it. The doctors believe they know what is causing it, but I’ll wait to be sure before I update any more on that.

The next concern is the aspiration. We are back to rice cereal thickened formula for now, but there still seems to be some aspiration. Sutton also seems to be having some reflux issues which would explain the aspiration. They have started her on reflux meds to help. She will also undergo a Esophageal Ph test to determine the amount of reflux and best determine how to treat it. It is a 24 hour test that she will hopefully start early tomorrow. As for now, she is a little restless with the reflux but still manages to smile most of the time.

The most exciting thing today was that we had a tornado warning tonight. It was quite a sight to see the entire 5 east and wet floors move into the center of the building. Every CF child had to be kept 6feet from the other while staying clear of all windows. There were also the other patients, some even in hospital beds, moving into tight quarters. I can only imagine the logistics behind that, but the nurses and staff had it down to a science and it was flawless. On top of that, Brittany and Hiatt showed up in the middle of the the move. Hiatt was very sure to let everybody know that Sutton was his sister and she was sick in the hospital. After the warning was over, Hiatt and I went for dinner and Brittany got some one on one time with Sutton. In the end, it was a great day.

5 West Called….

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Possible phone conversation today…
4West:” Hello, 4 West”
5West:” This is 5 West. We heard you have our baby. We want her back
4West: Silence…..
5West:” She’s the cute one that smiles a lot.”
4West:” We’re sending Sutton up right away.”
5West:” Go ahead and send her parents with her.”

Word got around that we were at Egleston and 5 West made a request to have their baby back. We are moving back to our 5 West Home! We have enjoyed the nurses on 4 West, especially Michelle and Suzanne, but it will be good to be back with familiar faces on the CF wing. The nurses on 4 West very good at what they do, but it takes a special nurse to understand the daily grind of a CF patient.

Sutton’s viral test came back negative! Thats partial good news. They only test for the 8 most common virus strains, so she could have something they didn’t test for. She is still wheezing some throughout the day and they have been able to treat that. She seems to be doing well overall. The big news will be the results of her CF culture to see what bacteria is growing. They will then determine the best antibiotic to treat her with which also determines our ability to go home. If we don’t need an IV antibiotic, we will more than likely be headed to the house. The bad news is that her IV line came out this afternoon and they will have to stick her again to start her antibiotic this evening. That is traumatic for all of us, including the nurses. We will make sure we get it in good this time.

We couldn’t get through this without our family and friends. You all are our support line, phone a friend and part of Team Sutton Grace!

The Epic Novel (Update)

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How did it get so late so soon? It’s night before it’s afternoon. December is here before it’s June. My goodness how the time has flewn. How did it get so late so soon?
~ Dr. Seuss

Exactly what I was thinking! Where has the time gone? No matter how much I remind myself to update our blog, I somehow find something else to do. I can always do it tomorrow seems to be the recurring daily theme.

A lot has happened since my last post so I’ll break it down in chapters with clever titles so you can skip around. Just be sure not to skip to the end and miss the good parts.

Back to Life, Back to Reality

February was mostly uneventful. We had a few minor issues, but nothing we couldn’t squash. Especially after January! Sutton had a minor issue with the rice cereal and digestion. Her little body wasn’t quite ready for the heartier food and she was spitting up a lot of what she was eating, only 3-4 hours later. A very small dose of an antibiotic with a side effect of digestive increase and we were back on track. I have never thought about using medicine for it’s side effects. I always thought side effects were something you looked at before taking a drug and decided if the good outweighed the bad. Now that I think about it, there are medicines out there that the primary use is for side effects and not the use they were developed for. I’m sure we will learn more about medicine than we ever thought.

Rollercoaster! Of Love….

Sutton may appear to be getting ready to for an amusement park ride, but she is in fact getting ready to leave the rice cereal in the past and move one step closer to normal. She had her follow up swallow study and received her first perfect score in testing. The follow up showed a perfect swallow with no aspiration and she was put back on her normal routine of liquid gold. Next stop, solid foods!

I want to ride my bicycle, I want to ride my bike!

As if we didn't have enough on our plate already, we joined the Executive Board for the CF Cycle for Life. No matter what, we will always have room for something that gets us closer to a cure for CF. We are excited about the opportunity to raise awareness and make this the best CF'n event in the country!

The CF Cycle for Life 2013 Kickoff was a success! We met with fellow board members and several other riders at One Midtown Kitchen to get this years event off to a great start. We met a lot of great new people and made many new friends. Team Sutton Grace received an award for best new team in fundraising efforts. It was great to have my co-captain, JV, there with me as we were recognized. We have high hopes of increasing our team size and fundraising efforts to new heights.

We have, yet again, experienced a welcoming by others involved in the CF community. While there, we made a realization that there are four types of connections that can tie you to the CF community. CF patients, Parents of CF, Relatives, Family members and close friends, and finally those who have no direct connection, but have been touched enough to get involved. No matter what part you play in this connection, when you are touched, you become a part of the big CF Family. Every person is just as important as the other, no matter what your connection. We are all in this to find a cure and make CF a memory.

I, want to rock and roll all night….

I know what you are thinking, …and party every day, or at least thats what it may seem like with all of the fun events! We promise that we have not been in a constant party mode for the last month, but rather take opportunities to have some fun while raising money and awareness for a cure.

We attended the ShamRockin For A Cure event at Verizon Amphitheater early this month. It was a lot of fun. Free food, free beer and a silent auction all for the fight. There were about 1000 people in attendance and we watched people open their hearts and wallets in an amazing way. Once again, we saw the CF Family in action and it was such a good feeling. If we have to be a part of something bad, why not make it great!

Don’t worry, be happy

Be Happy is the signals that Sutton is sending to us. No matter what happens in this little girls life, she is always happy. Many of us would be angry, annoyed and probably even tired at this point, but she constantly reminds us that we are doing this all for a reason. After all, she is the one who deals with the traumatic experiences of tubes, needles, wires, pills, masks, more pills, a dropper of this and that, not to mention we pat on her lungs twice a day for 20 minutes. As hard as it seems, if she can smile through it all, so can we.

We were joking the other day that every time I give a positive update on this blog, we hit a road bump. So I waited a little longer, thriving on the procrastination of having too much fun and pushing back the blog until tomorrow. Well, we figured out that we don’t have to worry about the blog post jinxing us.

Early this week, Sutton started to have signs of breathing issues again. From one night to the next morning, she worsened to a point of concern and we came to the ER at Egleston. After several hours and some breathing treatments, she seemed much better and we went home. Around 9:30pm that evening, she was much worse than originally so we came back. A few more breathing treatments and several hours of care, we were sent back home due to the hospital being full and there were no beds. The next day was off to a rough start and with the hospital being full, we decided to head to our pediatrician. They were able to provide the same care there that we were getting at the hospital and it was yet again, successful. Not to mention, we got to spend time with Aunt Brooke and that always makes it better. That afternoon, we were on our way to the CF clinic for our normal visit which couldn’t have been better timing. They assessed her there and felt it best to admit her to the hospital for treatment. We were placed on the waiting list for a bed and sent home. About an hour later we got the call that they had a bed and we were on our way after a few logistics at home.

Our visit in the hospital has been off to a rough start, mostly logistics with the hospital. First, we are not n 5 West but rather on a floor designated for Gastro issues. The nurses are nice, but they don’t seem to have the same understanding of CF and the feel is much colder. We have to explain a lot of things and they are much slower to respond. Just getting Creon so that she can eat takes a while and they aren’t sure what to do with it. CF parents and patients become pros as we do this daily so we just need to stand strong that we know how to do this and advocate for Sutton so that this stay doesn’t feel any longer than it will be. The bright side is that Sutton is happy and still getting the care she needs in the end.

We have had several tests and cultures so far and are still waiting on results. In the mean time, the doctors want to keep that proactive stance with CF treatment and Sutton will be on IV antibiotics and her normal treatments until results come back and we figure out next steps.

I promise to keep updates posted on the blog and not wait until tomorrow to post them. After all, tomorrow is a funny word. As long as you say tomorrow, nothing will happen today.

Rice, Rice, Baby

After one week at Club CHOA, we are home again, all together, under one roof. Everybody is in their respective beds, including the dog. It feels like family. We even managed to have dinner together at the dining room table in the midst of minor chaos getting Sutton’s meds picked up from around town. We have a new plan for Sutton and as complex as it seems to others, the alternatives were much more complex.

During the last couple of days, we discovered that Sutton was aspirating formula into her lungs. Basically, she is inhaling formula into her lungs as she feeds. She had a feeding tube inserted into her stomach through her nose as a solution to the problem. The plan was to feed her for a few weeks through the tube and then re-evaluate to determine if she had improved to return to regular formula. The feeding sent her into fits so we went in for a swallow study. The study determined that she was in fact aspirating, but thicker formula changed the time it takes her to swallow just enough to correct it. This was good news as we weren’t going home with a feeding pump or tube at this point. The feeding process is a little more involved, but we will take it over the alternative feeding tube. The therapist seemed to believe the aspirating is due to her virus and congestion and hopefully will be gone at her follow up in four weeks. In the meantime, she gets to have rice cereal as a part of her formula. She isn’t complaining. She is also on a reflux med to ensure she isn’t aspirating from reflux.

When we arrived home, we got settled in and were greeted soon by Hiatt and Mommy. Hiatt gave Sutton a get well soon card he made for her at school. It was such a good feeling and a proud moment to see our little boy speak of concern for his little sister. He would constantly make reference to her being in the hospital and include her in his prayers. He is going to be a great big brother.

We are taking a new approach to illness for the rest of the cold season. We are going to steer clear of as much sickness as possible. We are probably going to turn into germaphobic parents and constantly clean everything. The main reason Sutton was in the hospital was for the dual viral infection, but not necessarily CF related issues. She would have been in the same situation, CF or not. It’s a bad season for colds, especially for infants. We just don’t want another hospital visit.

We want to thank all of our family and friends for all of your support. So many people have offered to help us in many ways. It is easy for us to stay encouraged when we feel the love and support of those around us. We can’t express enough gratitude for everything. Many people say that Sutton is lucky to have us for parents, but she is lucky to have such an amazing support group behind her. Thank you from the bottom of our hearts. We are all Team Sutton Grace.

Amazing (Sutton) Grace

We have music that we play in the room that just calms the whole environment. It is piano music from a radio station on spotify. I was just sitting down to write this post and wasnt sure what to title it and the song Amazing Grace came on. I was holding Sutton in my arms. She was a little fussy, so I began to sing to her. She calmed down and I began to think about the song. “How precious did that Grace appear…” Very precious I thought to myself. She is more precious to us than words can describe. When you meet her, she will touch your heart as she has so many people already. I try to fathom how she is able to stand all of the uncomfortable treatments and end with a smile on her face. It’s almost like she is telling us she understands and forgives us. She is precious to all who encounter her.

We have had a rough few days of ups and downs. She seemed to be under control, getting better, but then we have another difficulty show up. We went through a spell of vomiting where she would eat, a small amount, and then moments later start a coughing fit and up it comes. There was a class of nursing students who were helping out on their first day and she managed to give them a nice coat. From there we changed a few things with her meds and all seemed well, until this morning and them it was all over me. After speaking with the doctor, we decided to have speech therapy come in to admire her ability to say her ABCs in four languages…ok…not exactly, but they did determine that she is inhaling a measurable amount of formula when she eats. That was causing her to basically be in a loop where she would clear up and then fluid would get back in her lungs. We are pretty sure it is due to congestion and trying to breathe and eat at the same time. We will know more over the next few weeks for sure. The fix for this problem is a feeding tube. Not fun…but its there. They started the feed tonight and after about 30 min, she was very upset and uncomfortable. We gave her some gas drops and stopped the feeding for a while and she seemed content and fell asleep. They are going to slowly get the feeding tube running again throughout the night. Hopefully she will take better to it as we progress.

I have a new appreciation for Moms as they deal with sick little ones. They have a special heart for this. I have been staying with Sutton while Brittany goes to work and it breaks my heart to see her go through this. I wouldnt trade the special time to be here with her and for her for anything though. They are precious moments. How precious does Sutton Grace appear every time we look at her.

Welcome back to 5 West

Just when we thought we were out of the woods, daycare happened. After discussing the possibilities for which Sutton could have gotten sick, we are convinced it was the toddler classroom.

Let me take you back a week where this all started. Saturday seemed a little rough for Hiatt with a runny nose and Sutton seemed a little congested. Not too worry, we just kept them both home from church on Sunday and let them catch up on rest to feel better for the week ahead. Sunday night was a disaster. Hiatts nose was flowing like a garden hose and Sutton could hardly breathe. Off to the ER for a deep suction, a breathing treatment and some TLC and Brittany and Sutton were home by 2am. The holiday from work and school turned into a trip to the pediatrician where Sutton received more breathing treatments and back home with two sick kids was the plan. Sutton had a visit to the CF clinic which went well, but she was still breathing pretty rough so we started an antibiotic just for good (CF) measure.

After the week out of school, Hiatt went back and Sutton was still not doing too well. She was having trouble keeping anything down and she was having a really rough time breathing. A quick call to the pediatrician and she sent us straight to the ER. They worked really hard and got her cleared up and after a few hours decided it was best to admit us so they can suction and give breathing treatments. Of course the nurses were all pushing to get into the room since they heard Sutton was coming back to 5 West. It was a warm welcome. She is such a blessing to everybody.

A quick side note: Tuesday was our last visit with DR Schecter as he is moving away. We were so lucky to have him for our doctor for CF. He will continue his work and we hope to one day link back up with him pending our possible move in the future. Big thanks to Dr Schecter and we look forward to our new doctor soon.