Adrenaline or too Much Epinephrine

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It was my turn to sleep in the bed at the room overnight while Kelsea stayed with Hayden Saturday night. Although he had an increase in mucus on Saturday, things were pretty good when I left for the night. Hayden's vent settings had come way down and as I had mentioned in last night's post, there was a very, VERY specific plan put in place in order to effectively take away the narcotics and replace it with a different analgesic (drug that produces an anesthetic like state) so he wouldn't be in pain, but could still breathe on his own during the Extubation Readiness Test.

I woke up around 5 and read a message Kelsea had sent shortly before that. They had done a trach aspirate  (culture checking for bacteria) due to his increased mucus and it came back showing some bacteria growth. This basically means that there were signs of bacterial growth in Hayden, and possibly even his lungs. Kelsea also said that Hayden's heart rate and blood pressure had dropped significantly at one point because he was too sedated, so they stopped the analgesic to bring him back.. When I showed up, the resident stated that these don't necessarily mean they wouldn't extubate, but they would have to have a serious discussion about everything during rounds. He said we don't want to hurry things and cause problems. I agreed, but I was heartbroken. I went to bed thinking the next morning was going to be great and woke up struggling because I thought God's plan was leading us in a different direction than what I wanted. I know, I should be used to that by now, but I wasn't! I could tell in his voice that the doctors didn't think it was going to be a good idea, so I texted mom and dad the disappointing news and started my morning ritual of standing by Hayden, talking to God, and waiting on rounds.

As the discussion got under way, I don't think I even had my notebook of questions, daily goals, data, and notes with me. I was just kind of there. As they discussed the overnight happenings and looked at the morning x-rays, I was only half paying attention because I knew what was coming. When the resident brought up the culture, the Attending Physician, as they always do on rounds, just like you would see on any medial show, started presenting scenarios and asking questions about different outcomes. He asked a little more in depth questions about the results from the culture and asked a resident what that suggested. His response was, "Correct. Ventilator Associated Pneumonia which the biggest way to prevent that is to yank the tube." When he said this, and acted like he was ripping something out of his mouth, my ears perked up. It was one of those moments (Kelsea could describe them for you) when I was overcome with joy. It was like a ton of bricks being lifted off of my shoulders. I called her in the middle of rounds and told her to get over here. I was kind of a nervous/excited mess and the adrenaline was flowing through me because I was so excited to be able to hear Hayden again. Within 30 minutes, the tube was gone!

When somebody is extubated, they have to make sure that the person can do several things. These include breathing at a normal pace, keeping heart rate at a normal pace, keep there blood oxygenated, and not struggle to breathe. Well, Hayden was struggling with several of these. He had a lot of bubbles/fluid coming from his mouth, elevated heart rate, and was working really hard to breathe. After about 20 minutes, I suggested Kelsea holding him might help to lower his heart rate. Boy, was I wrong! Kelsea was a trooper though and did her best to console Hayden as he struggled, and cried, and twisted in her arms. He was not happy! Part of the problem is that he was given two doses of epinephrine to help open up his airways and help him breather. A side effect of this is increased heart rate.


As time went on, I was afraid we were heading down the path or being intubated again. I didn't know exactly what was going to trigger the decision to do this, but I felt it was close. After about 90 minutes of him struggling, one of Hayden's angels (a doctor in disguise) came to the rescue. The same fellow who I wrote about Wednesday (who made the decision to bring him from the Surgery floor back to the PICU just in time to get him intubated) consoled Hayden for about 35 minutes straight encouraging him to suck on his pacifier which was dipped in "Sweeties" (sugar water basically). He was able to get Hayden to calm down so his heart rate dropped from about 228 (it was above 200 for at least an hour) to around 165. So many times, we have gotten to see the human side of doctors down at Children's. Looking at him trying to console Hayden, you would have thought it was his own son. He wasn't just pulling for him as a patient, but he was pulling for him because he wanted to see him succeed. I know this is there job, which they get paid for, but I can never thank everybody down here enough for what they do. His nurses. Wow. As they always have (especially in the NICU...ahem....shout out....kind of since I'm not naming names!) show their human side and love for their job day in and day out.

At 12:30 pm, after three hours, Hayden had calmed down and was doing well. Even though Kelsea and I really didn't do anything, we were completely worn out and emotionally drained. His tube was out and we finally felt like he was going to be succeed this time. Kelsea sent me down to grab lunch and I called dad and gave them the ok to come down. Hayden's Aunt Kelle was in town and wanted to see Hayden. She hadn't seen him since the first of February, so I was really hoping that things would be good enough for her to come down. While eating, his heart rate slowed even more and mom was able to go get something to eat. She also tried to go take a nap (since whoever stays in the room with Hayden usually doesn't get much sleep), but it didn't work for her! Hayden was worn out, but couldn't sleep. He was very restless and just wanted somebody to hold his pacifier in his mouth for him. He wanted to suck on it, but didn't have the energy to do both.

Mom, dad, and Kelle arrived around four and were able to spend a couple of hours here. Hayden continued to relax and adjust to the oxygen that he is on now. They will continue to try to lower and lower the oxygen he is on, but at this point, I don't care if he have to strap a tank to the roof of Kelsea's car! He is still getting treatments every 2-4 hours from the respiratory therapist for junk in his lungs. He doesn't mind the tube they put on his chest which uses sound waves to break it up, but he DOES NOT like the mask they put over his face for the Albuterol. He is acting like putting a mask near his face and having him inhale 5-6 times is the worst thing that has ever happened. However, I guess I can't blame him because everything since Tuesday has been about his face.

He is sleeping now and I think he is going to sleep good tonight. This afternoon, there were several times it smelled like he dirtied his diaper, but hadn't Still good news though because it means things might slowly be waking up down there. His catheter was removed today as well as two IV's (not by choice.....more from him thrashing around). He has his PIC (we are only using one "C" at the end since it is technically not a Central line) and an IV in his neck. However, his nurse tonight is certain the neck IV has run its course and won't hold up much longer. That means he will have to have another one put in tomorrow in a foot or hand, but I am ok with that. They need the access.

They are going to monitor him in the PICU for at least 24 hours. We told his doctor this afternoon that we are ok if it is 48 or even 72 hours. Right now, we are in no hurry to leave the PICU. However, we will be ready for the next step and goals. Not exactly sure, but these will include trying to wean him off of the oxygen and hoping his intestines "wake up" so that we can see if he will eat/digest food and start getting him to put on some weight.

I think there are at least ten things I wanted to say tonight, but forgot. However, the one thing I know is that God is watching over us. While Hayden was struggling, I know for a fact there were so many people and churches as a whole group, who were in deep discussions with our Father. He heard every single one of them and His path for us was once again laid out before our eyes.

Coming out both Ends

No extubation today, but hopefully he has a good night and will pass his ERT in the morning. I'm sooooooo ready for him to join us in the works of the "awake!"

Big news of the day is......Hayden FARTED!!!! Big time thing since this means that we might start to see some life in his intestines. Anytime intestines are "bothered" they "fall asleep" and wake up whenever they are ready. Nothing can be done to speed up the process. 

Night rounds just finished and his "very specific plan" is in place. His vent numbers have been excellent today and I have a very good feeling about tomorrow!

We are also very excited that Frankie was extubated this morning and should be heading to surgery floor tomorrow. Exciting news for Alex, Joe, Lulu and Frankie! We hope to join them shortly!

Prayers tonight and in the morning for a restful and peaceful night and a successful ERT!

Sunday morning update:

Extubation is a go and Hayden farted more on his own....so it really is coming out both ends!!

Big Brother and God: Being Watched and Watching Over

It is amazing to see the continued and growing support and prayers that are being given for Hayden. I continue to be amazed day after day. I have written before about what it has done to Kelsea and I over the past 8-9 months to see others put our family at the front of their thoughts and actions. It has made me revaluate how I treat others and makes me more aware of friends, loved ones, and even strangers that are in need, even if it is a simple note saying they are loved or being thought of.

First off, if you are reading this because you subscribed to get daily updates, then most of the time, the post is from the night before. However, sometimes I add information the next morning, or the same day the e-mail is sent.

Much improved overnight. God answered prayers and eased Hayden's suffering and, at the same time, eased Kelsea and my suffering.... What a difference 24 Hours makes.....we've heard that one before!!!

A couple of days ago, Kelsea posted a video on Facebook and it was a perfect representation of how we felt. As my post last night showed, I was struggling. I know we are to put our worries and trust in God, but it is tough when you see your little one struggling so much. As Hayden and I were talking to God last night, we told Him that we know things will be alright and that eventually, probably before I know it, we will be home and back in our routine. However, we also asked Him for that little sign; that glimpse that would show us He is in control. I am sure God has been showing us that non stop for the past three days, but it is hard to see the good sometimes when you THINK all you have is bad. Well, the past 24 hours, HE did give us a glimpse and reassurance that He IS leading us through this! And about 5 minutes ago, before I started writing this post, Hayden and I were listening to the song on my phone. He is still heavily sedated and his left hand has been holding on tight to his vent tubing all day. Halfway through the song, on one of the chorus repeats where he sings, "Let me know the struggle ends".....Without moving his body, opening his eyes, or stirring, his left hand shot straight up and grabbed my pinky finger until the end of the song. I think it goes without saying what that did to me at that moment. Hayden had a few tears of joy dropping on him because I know God was telling me and showing me things are good. He was reminding me that He has a plan and that He is still here. It was pretty powerful.

He slept very well last night, which meant I did too. The diuretics (Lasix) helped tremendously and his morning x-ray had improved. His lungs and heart looked much smaller due to the swelling going down and they decided to hold off on the CT Scan. His face is almost back to normal, minus the mullet he has because they had to shave both sides of his head since the PICC line didn't work on the first side. Hayden has done pretty good today on the vent. Not perfect, and still struggling, but there is talks of extubating again. Kelsea and I are in no hurry. We have nowhere to be and want to make certain Hayden tells us he is ready. The doctors said they will do the ERT again tomorrow, but it will more than likely be Sunday or Monday. His new night Fellow (the one who was awesome Tuesday night and made, what I thought was, a lifesaving decision said he would want to keep him in the PICU for 24-48 hours after extubation, just to make sure he was ready. We are good with that!

Longo stopped by the hospital last night, saw Hayden and hung out with us while we ate dinner. Mom and dad were able to make it down today with a few minor supplies, Jimmy Johns for lunch, mail, and bills. They didn't stay long, but glad they got to see Hayden in a better light today. Not much is on his plate for the weekend except to continue to try to wean him from the ventilator. I have a feeling Hayden will be coming home with oxygen (whenever that may be) due to the Tracheomalacia and Bronchomalacia, but hey, that is ok! Not what we wanted, but it's not about what we want!

All for now, I think Hayden and I are going to waste an hour and watch something I look forward to all year long....one of the few Reality shows I can actually watch (besides Duck Dynasty).....Big Brother!

Vicious Cycles

I struggled today. I questioned people. I got angry. I got upset. I got emotional. I got discouraged. I got sad. I got a little pushy. I got exhausted. I got humbled. And I got put in my place.

After some miscommunication overnight and early this morning, I was not a happy camper. However, things got better. I think I just needed to vent a little frustration. I have to remember that things don't always go perfect in one of the best hospitals in the country and that there are going to be hiccups. However, I want the best for Hayden. I am still happy that we are here and feel that very first night when I searched the phrases "Omphalocele" and "St. Louis," God led us here. Go ahead and click HERE.....see what happens when you search those and experience what I saw back on September 17th, 2012.

As Kelsea and I were sitting in the surgery pre-op room on Monday, I was telling her that I couldn't believe the "luck" we had ending up where we did. I know luck had nothing to do with it. This was the path that God led us down the entire time. I couldn't believe that 9 months and 1 week earlier I had searched the three phrases and the first website I came across (as hopefully you did when you clicked on the link above....if you didn't...do it now by clicking HERE, and then open the first website and read "Blair's Story." Actually, if you open several of the websites on that Google results page, you will come across quite a few familiar names, places, and people that I have mentioned over the past few months) mentioned the guy who was going to be walking through our door any minute. There were close to 6 general pediatric surgeons, and 40 specialized surgeons who could have been the lucky one, and the one who first worked on Hayden's Omphalocele after he was born, followed him for the past 5 months, and was now going to make him better was the first name I read about that night. There is no way that is a "coincidence" or luck of the draw. That was something that God had planned all along. Too many things fell in to the right place (or the stars aligned as some say) for it too be anything less than that.

Anyways, back to today! We haven't taken any pictures of Hayden in a couple of days because he is so swollen. He really doesn't look anything close to himself, which has been the hardest on Kelsea and I. I think we could make it not holding him and hearing him, but when you take away his looks, it has been really tough.

For the next part which will bring us up to speed, I am just going to copy and paste from a couple of e-mails I sent. There is a lot of information (and there are still a lot of unknowns), but it gives an excellent account of what has happened and what they hope to see happen overnight.

 

E-mail #1

 

"Ok....Hayden is getting the blood "transfusion" right now. However, it is not as scary as it sounds. His hemoglobin was low (anemia) which could be from a number of things. First off, it could be from the surgery. They said intestines can easily lose a lot of blood when they are in open air during a surgery.

Another possible cause is due to his swelling. He is really retaining water/fluid and it got kind of worse today. They are giving him Lasix (water pills/diuretic) to help release the fluid. Now, why is he retaining fluid? Could be from "trauma" from surgery. It could be the breathing tube agitating him. It could be due to him being immobilized. It could be due to his heart working "differently" than normal. They are investigating some things with his heart. They think he could have what is called Pulmonary Hypertension (which is a common thing associated with Omphaloceles. On an X-ray he had, the tech thought his heart looked enlarged. It is not enlarged, it is actually just something called the Thymus that is on top of the heart that the X-ray machine can't see through.

 

So, they did an Echocardiogram yesterday, and found what looked like a flattened septum. The septum is the wall between the left and right lower chambers of the heart. The right chamber pumps blood (w/oxygen) to the body while the left chamber pumps blood (w/out oxygen) to the lungs. Normally, the left chamber pumping blood to the lungs requires less pressure than the right side, so the septum pushes away (curves) into the left chamber because the right chamber has greater blood pressure. However, his is flat (or actually straight) which could possibly mean there is increased pressure in the left chamber, pushing the blood to the lungs (pulmonary hypertension). However, his "numbers/figures" don't necessarily agree with the echo, which doesn't make the doctors think they need to treat it immediately. However, it also raises a question about if the heart is having to work harder to pump the blood into the lungs, and if so, what about the lungs makes this true. It could be because there is some underlying issue with his lungs, it could be due to his newly diagnosed Tracheomalacia/Bronchomalacia. It could be a number of other things.

Originally they were going to do a CT scan on his chest today to investigate the lungs more, but surgery is not ready to do that. They want to rule out a few other things first before they subject him to more radiation with the CT scan. In just the time that I have typed this e-mail, Hayden has "peed" out almost 250 ml of clear fluid.....and his face is looking better. The doctors said everything is a vicious cycle and they just have to find the thing that breaks the cycle. Once his blood transfusion (which again, is not as scary as it sounds) is complete in about 90 minutes, then he will get started on his TPN, which will be the first real calories he has had since 4:30 Monday morning.

Surgery's goal is to get him off of the ventilator and they feel the TPN, as well as the released of some of the retained fluid (hopefully) will help him move towards this goal.

 

Email #2

 

Just had a good conversation with nurse, PICU drs., and surgeon via phone! First time in several days that I am not uptight, stressed, and I am smiling. I am not sure why, but I have a good feeling. PICU doctors were doing rounds as nurse was emptying his urine bag (sorry....all of the medical terms and I can't remember the simplest one!). He had a little over 250 ml of urine that were emptied out (almost 350 ml now) and his face looks a TON better! The doctors on rounds said they were going to push surgery, radiology, and Cardiology to sit down in the morning and come up with a plan. He said I am ok with letting him rest tonight and seeing if the diuretics help, but we are not going to go another day without a plan. He was very adamant! My kind of guy! As they were talking, surgery called on the phone and checked on his swelling. They were pleased with the fluid output in his urine and hope to continue to see if that helps with the swelling. They are going to increase the sedation medicine so he gets a good period of rest without interruption from pain (hopefully) and in the morning, do either an ultrasound or another x-ray of the chest to reevaluate and take to surgery to decide if they need a CT scan or not.

I have not been a happy camper with (what seemed like) lack of communication. However, I feel good now. Prayers for the continued effectiveness of the diuretics which will allow the doctors to really get a good evaluation of his heart and his breathing/lungs tomorrow!

 

After sending those two e-mails, Dr. Warner and Dr. Fialkowski (I finally got her last name right....I'm believe there were several posts from January/December that not only spelled it wrong, but completely had the wrong last name....sorry Elizabeth if you ever happen to see this!!!) stopped in to check on Hayden and they said he was doing very good, surgery standpoint. They were very pleased with his fluid output and Elizabeth said his face looked a ton better (she had seen it a couple of hours before when it was really bad). We are going to do a CT scan on Hayden's chest in the morning to hopefully rule out any issues with his heart and the pressure.

Transfusion just finished. So far no problems. I know he doesn't really see things, but it is such an awesome feeling the few times Hayden has opened his eyes.Prayers were heard today because God calmed my nerves and eased my pain. I also didn't realize it, but our nurse snuck in at some point and turned down his oxygen. One thing he needs to shoot for is breathing at "room levels" of oxygen which is 21%. For the past 36 hours, he has been at 50%. However, it is down to 40% and he is doing great!

Hopefully he will get that good night of rest with minimal discomfort, continue to drain the fluid, and be ready for the CT scan in the morning.

Living for Today

After a rough 12 hours, things seemed to settle down yesterday. Hayden was heavily sedated most of the day while they tried to stay on top of things and let him get back on track. A PICC line was put in his head. This is a central line that is more durable and can last longer than a regular IV. It also runs through the vein and ends near the heart and is going to be primarily used to deliver his TPN (Total Parenteral Nutrition....I think this is what I remember the name standing for) which will give him his nutritional needs until his intestines "wake up" and decide they are ready to start working. However, I just found out that they were not able to get it far enough and they cannot deliver the full nutrition. Not too happy about this because this took over 3 hours and it didn't achieve what they were hoping to accomplish.

Hayden still battled a lot of mucus and secretions in his lungs, so a respiratory therapist started treatments last night that would help break these up in the different lobes in his lungs. Kelsea is stayed with Hayden last night and I went back to the room to try to get some sleep.

Rounds this morning didn't bring a ton of new information, except for the information that the PICC line is not technically considered a "central" line. They are going to do a CT scan on Hayden's chest to check for a couple of things. First, they want to make sure that there is no blockage in his lungs that is preventing a consistent pressure from the vent reaching all lobes of his lungs. Second, he had an echo yesterday which showed signs of a flattened septum, which would be a result of increased pressure on the heart and possibly pulmonary hypertension (another thing that is common in babies who have Omphalocelese), but the numbers didn't reflect this. The dr. this morning though wanted to make sure.

The goal is still to wean him off the ventilator, but he is not ready yet.

We will see what today brings, but right now, we are not worried about it. We are just living for today and will get there when we get there!

Update

After being extubated yesterday morning and doing great for several hours, Hayden was transferred out of the PICU and to the surgery floor for continued monitoring. Once we arrived there, he was fine for an hour or two, but then he started to go downhill. It began with him being a little more agitated than he was earlier in the day and his breathing became very loud and sounded obstructed. Over a period of 5 hours, he was given pain medication, which did nothing for him. Finally, after feeling like the nurse and dr who checked on him several times weren't taking his conditions/symptoms seriously, Hayden's face started to swell up. At this point, "father knows best" came out in me and took it to the next level. I am not sure what his name was, or where he fit in on the "food chain." but he took one look at Hayden and said he agreed with me and told the nurse to call "rapid response." Rapid response is pretty much a call for help where doctors and nurses from several floors/specialties all respond.
We experienced this in April, the night of his hernia surgery, but it wasn't very rapid. Last night, it was rapid. Thankfully so as well.

His room quickly filled with 10-12 doctors and nurses who quickly assessed him. The surgeon ordered chest and abdomen x-rays while the Pediatric doctor prepared him to be transported back to the PICU. Kelsea was back sleeping in the room and I called her and as softly as I could, told her she needed to slowly wake up and head back to the 10th floor (surgery recovery floor). The pediatric doctor made dad VERY happy with the next decision. X-ray was coming into Hayden's room and the doctor knew he was struggling. He said x-rays could wait and said it was more important to get him back to the PICU. As soon as he got to the PICU, he needed to be intubated again. At the same time, he started to vomit and aspirated a little. They are monitoring that and will stay on top of that.

At 3:30, Kelsea and I got a little bit of sleep. I was back in his room again by 6:30 and Hayden was doing good and sleeping peacefully. About 7:30, after rounds, his heart rate dropped as well as his oxygen saturation. It brought the attention of MANY nurses and doctors again. They unhooked the vent and hooked up the "bag" to manually give him breaths. I can't say it enough about every single person involved in his care at Children's and how amazing they are. However, I have to give a shout out to Eugene (today) and Michelle (yesterday), the respiratory therapists who manually pumped the bag to give him his breaths for close to 15 minutes until his levels came back up to normal. It was a very emotional time and I am not sure if it was me being scared or me being grateful to see somebody single handedly keep your son breathing with their hands. Pretty powerful stuff, and every single person in his room, all 15 of them, took it in stride as if it was no big deal. I wanted to give each and every single one of them a high five and a bear hug. However, they probably didn't want a crying 34 year old to hang all over them!

Hayden is going to be kept on the vent and monitored and will be reevaluated tomorrow. He will also have a PICC line put back in so he can get his nutrients since he hasn't eaten in several days. So much for the little bit of hair that he grew back on the side of his head for the past 4 months! Oh well. I think there are more important things to worry about....or not worry about!

I know many people are following Hayden's progress and I will try to continue to update as much as possible. Kelsea and I are struggling, not going to lie, but we are doing good. It's a rough patch, something that we really haven't had to deal with Hayden. We are still blessed and it is still in God's hands.

Hayden was also extremely happy to see one of his favorite NICU nurses and LOVES the gift that she brought him.
's
We also felt very lucky to meet Alex and Joe DiFranco yesterday (Frank the Tank's parents) who have also documented their journey with Frankie's Omphalocele at Baby Frankie's Journey. His omphalocele closure surgery was just 24 hours after Hayden's and is now Hayden's neighbor.

God and Lint (not Lent)

God is so good to us. It is so hard to comprehend how He can continuously show us love when I feel like it is much more than what I give in return. I can't remember if it is grace or mercy (Bob Cowman had an excellent definition/illustration a few months ago either on his blog or Facebook and maybe he can re post it!), but it is such an amazing feeling when you receive it from God. Hayden is doing so much better than we ever could have expected or dreamt and he is resting peacefully right next to me.

My mind is running a million miles a minute and I am not even sure where to start. Kelsea and I decided to drive down to St. Louis last night so we didn't have to fight traffic early this morning. The drive from Troy to Kingshighway was absolutely horrible. We had heavy, heavy rain, thunder, and lightning the entire way. We probably averages 40 mph the last 40 miles. I couldn't get over how much water was on the highway in so many different places. Cars continuously were hydroplaning and sliding all over the place due to water on the road. We made it and checked in to the hotel around 7:15. After getting checked-in and Hayden fed, we were hungry and decided to get food from the Applebee's that is in the hotel. Well, to make a long story short, for those of you who know what happens when we (particularly Kelsea) dine out, the curse continued! For those of you who don't know, Kelsea CANNOT eat/order food from a restaurant and expect to get the correct food delivered/placed in front of her!

 After getting everything straightened out, we finally ate dinner around 9:30, got Hayden to sleep, and tried to go to bed ourselves. I'm not sure about Kelsea, but I know I struggled. My stomach was turning every way possible. I know I did get some sleep, but not certain how much. Kelsea probably had less than I did. He woke up at three and Kelsea fed him. At 4:30, I gave him a little more to eat as this was the cutoff time for feeding him.

While getting ready this morning, Hayden did awesome. He was hungry, but was still his happy self! Talking and playing with toys on the bed while we took turns showering and getting ready. It wasn't until right before they took him back to the OR that he started to fuss a little bit. In the pre-op room, we had the normal gamut of questions, repeated 7 times! Mandy Murphy and Fox 2 is doing a follow-up story on Hayden, so her film crew was in the room shooting a little footage of Kelsea, Hayden and myself. They were also in the operating room for his surgery. More on that at a later date. Dr. Warner met with us first and told us there were really three options and he didn't know yet which method he would use for Hayden until they were able to get in side and see how he responded to different situations. The first was full muscle closure which is what we were wanting. This would be a one time surgery and he would be able to stretch the muscle and skin together after putting all organs back inside. The second option was partial closure utilizing mesh. The mesh would be used to connect the muscle fascia and then the skin would be closed over this. The third would be a reduction in size of the omphalocele which would lead to another closure surgery at a later date.

As Dr. Warner said, "I can be the hero and get full closure today. However, this could compromise his ability to breathe and wouldn't help us achieve what we want." We were ok with Hayden dictating what his body could handle! We obviously wanted to have everything back inside and have full closure, but if he wasn't ready, then we were fine with that too.
 

Next came Hayden's ENT dr. that we met with last week. I have praised God so many times today for pushing us to meet with a GI doctor in St. Louis a week ago. It was His plan all along for the GI doctor (we met with her to look into his vomiting/feeding difficulties) to miraculously hear his wheezing while breathing and refer us to an ENT last Thursday. We also almost didn't keep the appointment last Thursday because I wasn't wanting to make another trip to St. Louis, plus we had another appointment in Quincy at the exact same time. Well, it was a true lifesaver we did. His ENT didn't find anything last week, but wanted to do a short procedure before his surgery this morning. She found out that Hayden has Tracheomalacia as well as Bronchomalacia which means his trachea and bronchus collapse when he breathes. We don't really understand this completely yet, and how it will play in to Hayden's recovery, but his ENT didn't seem too overly concerned at this point. She said most babies outgrow this by two years of age. I also think, from my quick research I did while he was still in surgery, that this is a fairly common associated "thing" with babies that have Omphaloceles. Why...who knows. What does that mean....who knows. She will follow in the background this next week and watch Hayden while he recovers.

About 2.5 hours after Hayden was taken back to the OR, which was one of the hardest things I have had to do......watch Kelsea hand him over to the nurse.....Dr. Warner came out. He was able to achieve full closure!!! We were floored. Kelsea and I thought there was no way that would happen. They almost didn't leave him on the ventilator either, but wanted to give him 24 hours to see how he does. Right now, he is on the ventilator, but breathing quite a bit on his own. The plan is to continue to wean him off tonight and if things continue the way they have, then they will look at extubating him tomorrow.

Hayden is currently resting peacefully and has a 1,000 tubes and wires hooked up again. I am doing better than what I thought I would be at this time. However, when Hayden is startled, he does "come to" somewhat and even though you can't hear him, you can see him "crying." This is infrequent and usually doesn't last long, however it still breaks our heart to see him looking at us, him attempting to cry, and his arms restrained. His abdomen looks absolutely amazing. Dr. Warner said it was flat, but we still planned on him having a bulging belly. Boy were we ever wrong. It's flat....as in flat! I'm still floored at what he was able to accomplish in the OR!

I napped this afternoon and am hanging out in the PICU with Hayden tonight. Kelsea stayed with him this afternoon and is back at the hotel getting some rest (hopefully). Our first goal right now is to get Hayden off of the ventilator. Our second goal is for him to increase his urine output. So far, he has had very little output and they have increased his IV fluid intake. Hopefully that will help shortly. As Dr. Warner said after the surgery, we are not out of the woods yet. He has come a long ways, but we still have huge hurdles to cross. We are asking for prayers for Hayden's continued success with breathing as well as getting fluids to pass through his body. The next request is for his GI tract. Since his organs grew in different shapes and sizes outside of his body, when they are put back inside, things are necessarily in the right place so babies with Omphaloceles potentially have continued feeding issues. The surgical team will be looking at that some time later in the week.

Kelsea and I so blessed. WE feel like little kids on Christmas morning. The tears of fear after hearing from his ENT after her procedure this morning quickly turned in to tears of joy. They have been on and off all day, yet we know God is still on our side as we start this next leg of our journey. It is scary figuring out the PICU life (especially if you have a nurse who is great at what she does, but not so great at explaining what she does), but we know he has absolutely the best care possible as well as the biggest cheering/praying section available to him!

We are also asking that you say a quick prayer for Frankie and his family. He is another baby, from St. Louis, who is having his closure surgery tomorrow morning. They have had a long journey to get to this point and we are so excited for them. They could possibly be on the same floor, and it just hit me....considering we are the only room in the PICU that is a "double" room (every other room is single) is it in the cards that Hayden and Frankie will be bunkmates??? How crazy would that be!!! Either way, we are sending love, prayers, and good vibes to Frankie, his parents Alex and Joe, and his sister. We know, as Hayden was, Frankie is in good hands with the surgeons, nurses, and doctors at St. Louis Children's. 

Oh yeah...almost forgot...if you read yesterday's post (6.23)....God gave the thumbs up on Hayden collecting belly button lint!!

Belly Buttons

This time tomorrow, Hayden will possibly have a belly button! Just Sayin! If he doesn't, then we will take what the good Lord said he needed....or didn't need!

Last bottle at 4:30. Check-in at 8:30. Surgery scheduled at 10:00 (depending on Dr. Warner's surgeries before Hayden's). Estimated to last 3.5 hours. Will update as we know. Thank you for your prayers. God has heard them and answered every single one!

It's the Little Things

277 days ago, at this very moment, I was looking at pictures that I had never seen before. I was reading hospital websites and scholarly journals about a medical term I couldn't pronounce. I was completely overwhelmed trying to grasp the new knowledge I was ascertaining regarding something I didn't realize people could survive. 277 days ago, the path Kelsea and I thought we were following took a turn. 277 days ago, we were lost. 277 days ago, we experienced what we thought was the worst feeling somebody could ever feel. 277 days ago, all of the important things, weren't so important.

154 days ago, at this very moment, I was looking at my son for the second time. 154 days ago, we experienced what I know as one of the best feelings a person could ever experience on earth. 154 days ago, the path that Kelsea and I were following took a turn. 154 days ago, all of the important things, weren't so important.

3 days from now, at this very moment, I will be looking at my son in a whole new light. 3 days from now, I am afraid we are going to experience a very troubling and emotionally draining experience. 3 days from now, the path that Kelsea, and Hayden, and I have been on will take another turn. 3 days from now, all of the important things won't be so important.

As the hours pass and Hayden's closure surgery draws near, a flood of emotions continue to rage through my body and my head. We are ready. We are nervous. We are scared. And we are excited. We are blessed.

At originally was thought to be something that would take place around one year of age, Hayden's surgery will take place at 10:30 Monday morning, just 5 short months and 6 days after his birth. I am scared of what we are going to experience because it will be several days before we get to see Hayden's beautiful eyes and smile. It will be several days before we get to hear his comforting sounds. And it will be several days before we get to hold him. However, as much as I am scared of the unknown, I am also grateful for the love God has shown. God has made this possible and He has told us that His son is ready for this next step. We are putting our faith in Him because it is out of our hands. God has led us to this and He WILL lead us through it.

We are so thankful for the prayers, the love, and the support that hundreds and hundreds of people have given us. We are so blessed to have the family we have and for everything they have done, and will continue to do for us. We are also VERY excited that Hayden will get to meet several of his family members tomorrow and Sunday as Kelsea's extended family is travelling to Quincy tomorrow for a quick visit.

It really is amazing how our lives change at the blink of an eye. The past few months, trying at times, have passed by just that quick. The ups and downs, even though we know there are still quite a few more we will encounter over the next few days, weeks, and months, don't seem like the mountains they once looked like. Looking back, in the rear view mirror, the farther we move away, the smaller they seem....just as Hayden's "O" has gotten smaller.

There is so much more I have been thinking about that I wanted to say, but I will leave it at this. God is great and even though our sins have been forgiven, it is hard to not feel like we are forever in debt for every person, event, and trial He has placed in our lives.

Below is a 2:12 video of pictures of Hayden's O and its progression over the past 277 days. They are not for everybody, which is why I haven't posted many on here. However, to see God at work, there are roughly 32 pictures that show just what He has done in our lives!

 

  

 

Insight

Emotions are on a roller coaster tonight. I was able to make it out to one of the Summer 25 for Blue Devil Soccer and it felt good to be out there and watch a little scrimmage. Even though I am officially not on the coaching staff, I have a feeling I will be hanging around and giving my two cents worth whenever it is allowed!

After talking to Eric at Flinn tonight, I got to thinking a little more about what we/Hayden will possibly be experiencing over the next few weeks and months. Well, I turned to our "old" friend Kelly Davis from Texas. If you would like a little insight in to what could be in store for us, Kelly, as always, has a great blog detailing what she, her husband, and their son when through with his closure surgery 15 months ago.

Before surgery - http://obabydavis.blogspot.com/2012/01/farewell-to-big-o.html
Post surgery - http://obabydavis.blogspot.com/2012_01_01_archive.html

Nothing funny or witty to post tonight. Just some reading material for those of you who are so inclined!

Closure

I wasn't expecting you so soon!

 

If the shoe fits



He wasn't too happy with these glasses...

 

Couldn't pick a better ending to the day

 

I'm getting a little crazy today and mixing things up! I'm put the pictures first instead of at the end! When we were in the NICU, I was able to integrate the pictures into the body of the post, but it took so much time because for some reason, the Blogger application makes it very difficult to accomplish (resize and move the pics).

Well, it happened. We got the green light! More of that later shortly!

We stoped at Babies R Us on our way through St. Louis yesterday and had some fun. Hayden didn't care for the glasses too much, but I promise you this, he will have several pairs of those Puma shoes once his feet get a little bigger! Those things were sweet!

Dr. Brittany, one of Hayden's neonatologists in the NICU, met us a Dr. Warner's office and got some snuggling time in with Hayden! She was always Hayden's favorite!!! This was the first trip that Kelsea made to St. Louis where Hayden was not throwing up, in pain, or in the back of an ambulance!

Dr. Warner was very happy with Hayden's progression. After taking a quick look at things, pushing here and there, he asked us what we thought and if we felt he was ready! We kind of joked and put it back on him! I don't think we are qualified to make that decision! However, as they have always done at SLCH, the parents play a major part in the decision making. We both felt he is ready, and Dr. Warner agreed. In our casual conversation discussing the surgery, our 7,000 questions were mostly answered before we even had a chance to go through my list!

There are a lot of unknowns at this time regarding the actual surgery itself and what method specifically will be used. It is called component separation and the goal is to cut the muscles that are on the side of the omphalocele and pull them together. Sometimes this can be done naturally, sometimes mesh is needed to bridge the gap (just like a hernia surgery sometimes) because it would be too tight without. He doesn't know what path he will take until he actually gets in there and checks things out. The procedure will take somewhere around 3 hours, give or take depending on what he encounters once Hayden is put under.

Post surgery is where I am worried right now. There are so many thoughts going through my head. Due to the pressure of Hayden being closed up, he will possibly have breathing and feeding difficulties. He will probably be heavily sedated and intubated for oxygen, as well as having a feeding tube inserted. This is where I am struggling. Yes, he will be in some pain and I don't want him to be in pain. However, the selfish part of me knows I am going to struggle not hearing his sounds and his laughs and every other little noise he makes. Even though I know this is the road to Hayden getting healthier and stronger, I feel as though we will be going backwards for a few days (hopefully just a few days) because we won't see or hear the things we have grown accustomed to.

Kelsea and I have been trying to prepare ourselves the past few weeks and keep turning towards God and prayer. Once again, as the title says, I know God is taking us here because He is ready AND He will lead us through this, just like He has with everything else. This is a very exciting time in our lives because we are moving forward, but these next two weeks are also going to be hectic and nerve racking! Hayden is a fighter and has pushed through everything God has presented so far so I have no doubt that even though he will struggle a little the first days, he will prevail and He will prevail.

We are also excited that several members from Kelsea's side of the family will get to meet Hayden for the first time, the weekend before his surgery. We are very excited for Hayden to meet another set of great grandparents and his Aunt Kim, Uncle Gabe and cousins Mia and Benjamin.

We know this story is not coming to an end, and we know that there will be more trials and tribulations, but we also know that on June 24th, which is two weeks from Monday, this story will have at the very least, a little "closure."

Checks

Diaper bag packed. Check

50 questions printed. Check

Prayers sent. Check

Good night's rest. TBD!!

Well, it seems like it has been 6 months, but we head back for our follow up with Dr. Warner tomorrow. We are so excited for him to see Hayden and we're pretty certain he will be very pleased with Hayden's progress. 

According to Dr. Warner at our last appt, tomorrow is the day we will schedule Hayden's surgery. We are praying that Hayden is ready for this next step. As the possibility of his surgery nears, I get a little more nervous. I know the good that will come from this, but I am also scared of the bad Hayden could experience to get there. 

However, I also know God wouldn't take us down this path if He knew we couldn't handle it. We will know a lot more this time tomorrow and I will try to update this weekend.