First Surgery (Continued)

After about 2 hours of sitting in the waiting room and roaming the hospital, one of the nurses finally came out and told Tasha (I was in the gift shop buying him Steve) that the surgery was over and that everything looked excellent and that we would be heading up to a room shortly.  When they first brought Reis out on his gurney, we were in a little shock.  It wasn't that we didn't like the work that they had done, it really was the fact that we were used to the way he looked before and he was swollen quite a bit from the surgery and he didn't even look like our little man that we were used to.

One nurse took Tasha, Reis and I all up to the room where we were going to be staying for the rest of the day and over night and another nurse took everyone else up to the room to meet us up there.  It seemed like he was just going to sleep forever but finally he decided to wake up and when he did, he wasn't really all there from the pain medication that he was on but it was a great feeling to see him awake and in pretty good spirits.

Reis had to wear elbow restraints so that he couldn't move his hands up to his mouth and mess with the fresh stitches and glue that was on his lip.  He was also fitted with a pair of nose stents that were about an inch and a half long and stitched into his nose so they would not come out along with tape across the bridge of his nose (not sure why, maybe for swelling??).  The nose stents were used to keep his nostrils shaped so that his nose did not go flat.  He had a little heart monitor patch on his chest and a vital sign hookup attached to his foot so that they could monitor his vitals at all times.

Feeding was interesting.  We had a little rubber tube that was hooked to the end of a syringe (Breck Feeder) that we had to draw up the formula in the syringe and stick the end of the tube in his mouth and push out  the formula and let him sallow it without him choking.  This really worked pretty good right at first, but then when he decided to get his apatite back, it was very difficult to keep up with how fast he wanted to eat.  What we ended up doing was one person would draw up the first syringe full and while one person fed him, the other person would draw up another syringe full of formula and that seemed to work pretty good.  The only time we really had any trouble feeding him, was when Tasha and I were on our way home and we had to pull over on the side of the road and try to feed him in our vehicle.

Throughout the day and into that evening, things kind of went a little downhill.  Reis decided that he would be upset and when he would get to crying, he would hold his breath and then the monitors would show that and the nurses would come rushing in to see what the problem was.  We even had a little incident where the held his breath so long that one of the nurses broke open the emergency oxygen case that was beside his bed and just about jambed a tube down his throat so that he could breathe, but before she could get that done, the other nurse told her to stop and he was fine.  I'm not gonna lie, it scared the hell out of me, not the fact that I thought he was not going to breathe, but the fact that this nurse was going to ram that tube down his throat and that our overnight stay was going to turn into a week stay.

As the day came to a close, the hospital wanted to get the majority of the visitors out of the room so that we could settle down and prepare for the night.  Most of the night we took turns holding Reis in the rocking chair beside his bed because when he was laying in the bed, he was not sleeping very good so that made for a pretty long night.  Finally around 3:00 in the morning, I was able to lay Reis down in the crib and get some good shut eye.

The next morning we were scheduled to get out of the hospital around 11.  Most of the family came back early that morning and helped get everything ready for our departure.  The nurses made sure that all of Reis' vital signs were in good order before they would discharge us and finally around 12:30 we left the hospital and headed to Eric's house.  We decided that we would stay another night in KC since we really didn't want to have to drive all the way back to SC with Reis just getting out of the hospital, so we just went to Eric's and hung out there for the rest of the day.

Our trip back to Smith Center went as good as it could have given the circumstances.  Reis slept most of the way back home, which was great for us.  We did have to stop a few times to feed him and this was the first time that he was able to have his bottle back since the surgery, which was a lot easier than feeding him with the Breck feeder.  When we arrived home, we have lots of visitors that were really anxious to see Reis.

For the first week we had to leave the tape on the bridge of his nose, the elbow restraints had to stay on at all times except to take a bath and to let him move his arms around and the nose stents were stitched in and had to stay in until we got back to the hospital for our one week checkup.  Reis didn't seem to mind the elbow restraints too bad since he wasn't really mobile yet at this point.  With the nose stents, came irrigating the nose stents.  This was a pretty rough procedure since we had to take saline solution and draw it up into a syringe and with a IV needle attached to the end of the syringe we stuck the needle up in the nose stents and squirted the saline solution into his nose to keep the stents cleared out so he could breathe.  As you can imagine, he did not like this at all since one of us had to hold his face still while the other one squirted the solution.

At our one week post operation checkup, they took off the tape from his nose and they cut the stitches out of the nose stents.  They then showed us how we were going to have to tape the nose stents in his nose since they had to be in for at least 12 hours per day.  We decided that we would put them in while he slept so that they wouldn't be bothering him during the day while he was awake.  They told us that after about 3 months of doing the nose stents we would probably be able to stop doing them.  Along with the nose stents, we had to go get some scar cream that we had to rub on his lip a couple of times a day for several months.

Throughout the next several weeks we took a couple trips back down to KC for post operation checkups and Reis was progressing just as they had predicted.

First Surgery (Lip Repair)

When we were first told that Reis would have his first surgery in November, it seemed like that was a long time away and that it would be forever until then. Well, November got here faster then I could even believe.

Wednesday, November 4th, 2009, we woke up knowing that we would be heading to Overland Park, KS to get prepared for the surgery that would take place around 7:30 am the next day.

With our truck loaded up with all of our bags and everything we might need for the next few days, we hit the road and headed for my brothers house in Olathe. Troy decided that he would leave the same time as us and would just follow us down there since he wasn't as familiar with the area as I was. The trip out seemed to go by rather quickly. Reis did real good all the way out there, as he slept from Smith Center to Salina, where we stopped for lunch at Long John Silvers and he was awake for around 30 minutes or so then we hit the road for the rest of the trip and he fell back asleep. When we arrived at the Motel 8 that Troy was staying in, Reis decided to wake up and eat finally after not eating for 5 and a half hours.

That night we had made plans to go out to eat at Texas Roadhouse in Olathe near Eric's house. Louise and Darrell, Dave and Trish, Eric and Becca, Troy, Merry, Tasha, Reis and I all went. After supper, Eric, Becca, Merry, Tasha, Reis and I all went back to Eric's to crash for the evening since we had to be up fairly early to get to the hospital.

Reis was supposed to eat his last meal until after his surgery around 3:30 am on Thursday morning, however, when I woke him up to feed him his bottle, he wasn't hungry and only ended up eating about 2 ounces, which was about 4 less than he normally eats. Since he wasn't eating, I put him back to bed and laid down for a few more hours of sleep. Around 4:30, Tasha woke up to start getting ready while I slept a little longer. Around 5 o'clock she came out of the bathroom and woke me telling me she had blown the breaker to the basement so I went to switch it back on. Since I was up at this point I just decided to get ready as well. My mom was upstairs getting ready so she could follow us to the hospital.

It was around 6:00 when we left my brothers house and headed for Children's Mercy South in Overland Park. We arrived around 6:20 and got unloaded and checked in with the security and they directed us to the Surgery department where we had to get registered. Around 6:40 a nurse came out to the waiting room and called Reis' name.  Tasha and I went back to the prep room where we would have to be for the next hour with him while they Surgery team prepared him for the surgery.

When we got to our room, the nurse gave us a little green hospital gown and some little yellow no-slip socks that we had to dress him in. We got him dressed in his gown and socks and then we had to go to a different room to take his vitals, weight and measurement.  This is sort of where things started to go downhill.  Once we got in the room to do vitals, Reis started to get a little cranky.  We were able to get his weight and height, but then the nurse tried to get his blood pressure and nothing seemed to work.  As she was trying to get his blood pressure he was sitting on Tasha's lap and decided it was time for a morning bathroom break.  The nurse started to freak out because he poop was pouring out onto the floor and nearly made a mess all over Tasha's jeans.  After we got his diaper changed and cleaned up all the poop that was on the floor, we headed back to our room to finish filling out our pre-opt questions and to meet with the other doctors.  After we filled out everything and talked to the anesthesiologist, Reis decided he was going to be cranky and started balling which lead to a whole lot of emotional stress from both Tasha and I.  We finally gave in and gave him his pacifier to calm him down enough until they were ready for him.

The nurse finally came in and told us that they were ready for him.  It wasn't easy for Tasha and I to see him leave with the nurses on his little gurney, but we both knew that it would soon be over and it was all for the best...

To Be Continued...

Fast Forward

Well, Since I didn't think to start this blog until recently, and Reis is now just over 4 months old, I figured I would fast forward through the last couple of months and bring everyone up to speed.

Within the first few of months of Reis' life, we have already made several trips to Kansas City.  During these trips, we met with the team of people that would be doing his surgeries as well as the ENT, Audiologist, Nutritionist and other people that will be following his progress as he grows and gets older.

We have made several trips to Fales Pediatric Dentistry to get his palatal expander fitted, and to have a few more checkups to see how much further it could expand and then finally our last appointment with them, Dr. Fales told us we could stop expanding as it was out as far as it would go.

During the past 3 months, things have been basically normal, with the exception of the frequent trips to Kansas City.  We have had some issues with ear infections, but other then that, everything has been fairly normal.  We have been to the lake, been to Wichita to see my dad and step mom who live down there a couple of times and even been out of town shopping like normal since we have had Reis.

On September 12th, 2009, Joe and Darla Conaway, with the help of some others held a benefit for Reis at Pooches in Smith Center.  They had a 70's costume party with all of the proceeds from the door entry going to an account that we had setup at the Peoples Bank.  This benefit went very well, and we raised quite a bit of money to go into the account that we had setup.  We have decided to use this money exclusively for travel, food and lodge (when needed).

Reis is scheduled to have his lip repair surgery this week, November 5th, 2009 at 6:30am and as you would probably assume, we are very nervous about how it is all going to play out.  We are confident that Dr. Singhal will do a wonderful job with it and we don't expect that when he is done on Thursday, everything will be hunky dory, but we know it is all going to work itself out in the end.  Our biggest concern is giving up our little man for the 4 hour or longer surgery.  Once the surgery is over, I will be sure to post more pictures and if time allows, I will post another segment on how everything went, so please stay tuned and thanks so much for keeping us in your thoughts.

First Trip to KC

Our first trip to KC was about a week and a half after we got home from Salina.  July 9th, 2009 Tasha, Reis and I along with Louise (Tasha's Mom) and Merry (my Mom) headed for Kansas City.  We had made plans with the Ronald McDonald House (RMH) to stay there since we really didn't know what to expect when we got out there.  His first appointment was scheduled for the next day at 8:00 am.  We arrived at the RMH and got checked in.  The RMH was very accommodating, we had to fill out some papers, and make a small donation to stay and then they showed us to our room.

Later that evening, we met up with Eric and Becca down at the plaza to go out for supper.  We had decided on Buca di Beppo for supper with a followup cheese cake from the Cheese Cake factory for the ladies that wanted it.  It was Reis' first real experience at a restaurant, which he seemed to do fairly well.

When we finished eating, we walked around for awhile enjoying the plaza for the night.  We headed over to the fountains and took a few more pictures and the gals decided that it was time to go get their cheese cake, though I don't know how anyone would be hungry after the feast that we had at Buca.  After stopping at the Cheese Cake Factory, we decided we had better get headed back to the RMH so we could hit the sack and be ready for the next morning.

The next morning came and we all hurried around to get over to the hospital, which was just across the street.  This proved to be a little bit harder than any of us had thought.  We ended up walking pretty much all the way around the hospital on the wrong side, and then ended up going into the ER door because we were pushing time as it was and didn't want to be late.  It took us a good 30 minutes to get from the RMH to the correct floor where he would have his first clinic. The clinic was setup a little like, first come, first serve.  We had to check in at the front desk and wait for them to call us.  After about 30 minutes of waiting or so, a nurse called our names and we followed her down to a lower floor where we were set to see the surgeon.  We then waited a few minutes in that waiting room and were called back to weigh and measure Reis.  It was all really kind of confusing for us and several nurses came in and back out.  We first talked with Amanda, the nurse practitioner, then with Beth and Margie who are the surgeon's nurses.  They asked all kinds of questions and asked us if we had questions, which we did, but at the time couldn't remember what all to ask.  Finally we got to meet Dr. Singhal, the plastic surgeon that would be working on Reis.  He is a very nice man, very quite spoken.  He held Reis for a minute or two and looked him over and asked us if we had questions.  We asked several questions about how many surgeries Reis would have to have and about eating and everything else that we could think of and he was pretty straight forward with us.  He told Beth to contact Dr. Fales, a pediatric dentist in Olathe, KS, to see if we could see him that same day since we lived so far away.  Dr. Fales makes the appliance that we would get for Reis to act as a temporary palate.  This device was called a palatal expander, and is designed to re-shape the palate and bring the premaxilla forward for better results when they do the surgeries.  When we were done with the questions he told us that he would see us again in a few months for his pre-operation appointment.  Beth and Margie then showed us how to do the Lip Taping that we would have to do for the next 4 months.  The lip taping seemed pretty easy and once you got the hang of it, it was pretty easy.  Beth had contacted Dr. Fales and they were going to see us around 2:00 that day.

When we were finished seeing the surgeon, we headed back up to the clinic waiting room to wait to see the audiologist and the nutritionist.  After another small wait in the clinic, we were invited back to a room where we met the nutritionist.  She asked several questions about how his feeding was going and we let her know that the feeding was going pretty well.  We finished talking to the nutritionist and she called in the audiologist.  The audiologist did a couple of hearing test, and then decided that he needed an ABR (Auditory Brainstem Respons).  This test seem to take forever.  They hooked several wires up to Reis and she had her laptop recording what his brain was sending back through to the computer.  After what seemed like hours, but really only about 1 hour, the test was finished.  The results were pretty much what we had expected to hear since he had failed his other test.  She said that he had some slight hearing loss in his left ear but was ok in his right ear.  The loss in his left ear might be from the fluid that was in his middle ear and she told us she wanted to do another test at some point when we were back out for something else.  As the test was finishing up, the 2 moms headed back over to the RMH to get everything packed up since it was getting close to 1:00 and we were supposed to be in Olathe by 2:00.

We finished up at the clinic and hurried back over to the RMH to help get everything packed up and then we took off towards Olathe to go see Dr. Fales.  We arrived right around 2:00 at Dr. Fales' clinic and they were there waiting for us.  It was kind of nice, because they weren't really open because he normally does his surgery on Friday, but since we lived so far away, they agreed to see us to get Reis fitted for his expander.  Dr. Fales and Konnie, the practice administrator were very nice and happy to see us and to meet Reis.  They had us keep Reis in his car seat and they got ready to create a mold of his mouth, which was very painful looking but didn't last long and surprisingly was perfect on the first try.  They finished that up and let us know that we would need to come out about a week later to pick it up.

After leaving Dr. Fales', we were all starved by that time since we hadn't ate anything, so we decided to grab a quick bite.  After lunch, we did some other shopping and then headed for home.

Tasha's Hospital Revisit

Since this Blog is about Reis, I won't go into too much detail here, but I thought that it was a big part of what happened in Reis' life so I had better make note of it...

Just as we thought everything was getting better and our lives were getting back to normal, Tasha was put into the hospital two days after we got back from Salina.  At first, we were not sure what the heck was going on with her, but it was thought to be an infection of some kind.  Due to the amount of blood that she lost and everything else that went on the previous 5 days, she ended up with UTI (Urinary Tract Infection) on top of her hemoglobin level being very low.  They put her on IV meds and pumped her full of liquids to try and bring her hemoglobin back up to normal.  I don't remember exactly where it was, but I know it was too the point that she was very weak and ghostly white at times.  We spent most of the first week of Reis' life in Hospitals and this was weighing very heavy on both of us.

Just when we were thinking we were going to have to get a permanent room at the hospital, Tasha started to come around, and just in time since the 4th of July was only a day away.  Tasha was released on the Third and we were able to enjoy the celebration with the rest of the family.

The Beginning

Well, I guess I better start this blog off with a little background about Reis since this blog is about him.  I won't go into all the details, but I do want to give everyone a first hand look at what all has happened from the beginning until now.  So, please read on and enjoy our journey with us. 

Everyone always says, "Your life will change completely once you have children".  This is true, your life does change when you have children, and for Tasha and I, it changed in a blink of an eye.

Wednesday, June 24th, 2009 was the night that Tasha and I, well Tasha, was admitted to Smith County Memorial Hospital.  Just as every induction goes, they put you in the hospital the night before or the day of to give you good rest and some drugs to help the labor process start.  We really didn't get much sleep at all between Tasha have cramps or contractions and the excitement of soon having our very first Baby!

Reis was born June 25, 2009 at 9:35 am at Smith County Memorial Hospital weighing 8lbs 3oz and measuring 22 inches long.  Tasha and I both suspected that we were going to have a boy, but we did not know for sure because when we had the sonogram done, we told the "Radiologist" that we didn't want to know what the gender was.  When we got the pictures of sonogram, we thought we seen something around his nose area, but we just went on about everything thinking that our child's nose was just a little big or whatever.  Up to the point of his birth, we were told, and assumed ourselves, that we had had a healthy pregnancy and we were going to have this baby and a few days later be home to enjoy our new little gift.  Much to our surprise, when Reis was born with a Bilateral Cleft Lip and Palate, which was a HUGH shock to us, not that we were going to love him less, but just the fact that we were not prepared for it at all, physically or emotionally.

After all of the normal labor procedure was over, Dr. Overmiller stepped out to make a few phone calls while the family that was at the hospital came in to see Reis, Tasha and I.  When he returned, he told us that Reis would have to be transferred to Salina Regional Health Center in Salina, KS because Smith County Memorial Hospital was not equipped to feed or take care of a baby with a cleft.  The good news about this was that since everything else about Reis was in perfect condition, they were going to let us take him down there in our own vehicle.  However, the bad news was that Tasha would have to stay in the hospital there at Smith Center because she had lost quite a bit of blood and they wanted to make sure she was stable before they would release her.

We didn't really have a lot of time to discuss because he would soon be getting hungry and with no way of feeding him, he would just have to cry until we got him to the Hospital at Salina.  After a few moments of talking and contiplating how we were going to pull this off, not to mention, that I was about to have an emotional breakdown, my mom and I decided that she would drive us down there and Tasha's mom and dad would stay with Tasha and drive her down when she was released from the hospital there.

While I ran home to try to pack a diaper bag and my own bag for a trip I had no idea up until then that I was taking, Tasha got to have a little quality time with Reis.  The worst part about me having to try to pack a diaper bag was, well, I had absolutely no clue where anything was, what all I would need to take, how many diapers to pack, what to take for formula or what to take for clothes for him.  I did what I could and grabbed a little bit of everything and threw a shirt and some other clothes for myself in a bag and we headed out the door and back to the hospital.

When we arrived back at the hospital, things had calmed down a little bit and I knew by then that everything was going to be OK, it was just still an emotional shock for us.  Tasha got him put into his car seat for me to take and we said our goodbyes and got on the road to Salina.  Paula Hayes, one of the OB nurses at Smith County Memorial rode to Salina with us to monitor Reis on the way down there to make sure his vitals were fine.  Terry McDonald, another OB nurse, followed us down there to pick Paula up when we did arrive at Salina.

After our agonizing two hour car ride to Salina, which Reis handled like a Pro, we had finally arrived at the front entrance of Salina Regional Health Center.  We unloaded and went inside to figure out where we were supposed to go.  We headed to the registration desk and told them that we were transferred from Smith County Memorial and they had all the paper work ready and all I had to do is sign in and head up to the sixth floor to the ICU.  Paula and Terry stayed around until we got on the elevator to head upstairs and then they too got back on their way.  When we got to the ICU the nurses there were very helpful and this is where I first met "Aunt Cathy".  She was a very very nice woman that had been working in the nursery and ICU for over 30 years.  Aunt Cathy was so kind to us and she really helped out with everything.  She was even so kind to let me change the first poopie diaper!

We were very fortunate that Reis was able to eat from a bottle, however, it was a special bottle called a Mead Johnson bottle.  The reason for this bottle was because with Reis' cleft, he had no way of sucking on a regular bottle so this bottle was a soft plastic bottle that we could use to squeeze the milk out of it so that he could eat.  At first, feeding was very scary and a little bit challenging, especially since I had not had much experience feeding babies anyways, but after a few feedings, I was well adjusted to it and I even taught most everyone how to use it.

Later on that evening Tasha was released from Smith County and headed down to Salina.  Tasha's dad Troy drove her down and her mom Louise and sister Stasia followed them down.  When she arrived, I was never happier to see her.  We spent most of that night holding our new baby boy and enjoying every minute of him.  Most of our family had decided to drive down to Salina as well so there was no lack of family around as well.  My dad Rick and his wife Tish drove down from Wichita, my brother Brian, who was in Holdrege, NE earlier that day drove all the way down to Salina, in record time not to mention, and my sister Brenda and her husband Jason were in Hays for a checkup with her new baby girl (Fuzz) that she had just had 2 weeks prior.

Finally around 1:00 am the next day, June 26th, we all were exhausted and decided it was time to get some sleep.  The hospital had made arrangements for us to stay at the Rebecca A. Morrison House that they have just across the street from the hospital, which was very convenient.  My mom road home with my brother and Louise, Stasia, Tasha and I stayed at the house.  Troy decided he would just rent a motel for the night since the room only had four single size beds in it.  As soon as the lights went out, I was out cold.

It was a very strange feeling knowing that our baby was sleeping in a completely different building then we were and was being taken care of by people that we didn't really even know, but I was so exhausted that it didn't really sink in until the next morning when I woke up in a strange bed and with no Reis around.  We all got ready so that we could get over to the hospital in time to talk to the Dr. Rosales, who was the ICU doctor that would be looking after Reis the next few days.

We talked a little while with Dr. Rosales and he assured us that everything was going to be OK and he had made some phone calls to Children's Mercy Hospital in Kansas City, MO and they would be contacting us in the next few days.  Later on that day, Brian and his wife Lynnae showed back up as well as my mom and her husband Glen.  While Reis was resting in the ICU we all decided to go grab a quick lunch.  Since the ICU had other babies in it, we were really only supposed to have a few people in there at a time, so we all took turns holding and rocking and feeding Reis throughout the day.  As quick as night turned to day, day had then turned to night and the night staff assured us the everything was fine and that we should go rest for the night, so we did just that.

Saturday was our last full day at Salina and they actually put us in a room for the day and night so that we could take care of Reis all by ourselves that way when we got home, we wouldn't be lost. This was the best day for us in awhile since we were actually going to be taking care of our son on our own.  My oldest brother Eric and his wife Becca came down for the afternoon along with my mom and Louise and her husband, Darrell.  It seemed like time just flew by and before we knew it, it was time for our visitors to leave and us to get settled down and get ready for bed.  Sunday morning we woke up and were able to give Reis his first "Bath" together as a family.  He did pretty good sleeping through the night, waking up about every two hours or so which was good because it gave us the opportunity to get used to him waking up throughout the night.  After his bath he went back to the nursery for his going away present (circumcision) and we were finally ready to get out of there and get home.  We loaded up all of our belongings and one the the nursery nurses walked us out to the front lobby to make sure we got to our vehicle safely.  We loaded up and headed for home.

Upon arrival to our house, we noticed our house was decorated with balloons and streamers galore. As we pulled into our driveway we seen a sign that Stasia and her grandma Irene had made for our homecoming.  It was very nice to be home and to see how much we were missed, or at least how much Reis was missed.  We spent most of the day Sunday just relaxing and trying to get our lives back in order.

Everything seemed to be going pretty well up to the point that Tasha started to feel hot, then cold, then hot again.  GREAT!  Just what we needed.  Seems as though the hits just keep on coming.  I will save that story for the next post...