Easton has been doing great since his repair.  We have had to fight a cold or two that big brother and big sister wanted to share:)  We went to see Dr. Shah our Cardiologist yesterday and don't have to go back for 3 months.  This is great news and means that he is doing very well.  Today will hopefully be the last time we will have to come to the surgical area at the Childrens Hospital.   Easton gets to finally be circumsized.  Ready to get this  over so we can be recovered by Thanksgiving.  Thank you all for your continued prayers and support.  We pray that today goes as well as the other proceedures have.  Ready to get this show on the road.

Well today started off pretty much like the rest.  Easton had a really good night.  He ate really well yesterday after he had his motrin.  His poor little throat is still sore.  The nurse practioner came in before the doctors rounded and asked me how I felt about going home today, I was surprised but told her that yes we were ready.  I had actually been thinking about it because we were only on antibiotics and he only had the one line left but really didn't think it would be possible.  After the doctors.rounded they decided to send us on our merry way.  after all they do we finally left the hospital at 2:15 pm.  So tonight we are home!  It is so nice to have everyone under the same roof!  His brother and sister sure missed him:  and I think he missed them too!  We are so blessed.  We will have several doctors appointments in the up coming weeks but he is healing very nicely.  We pray for continued healing as he is a little sore still.  I will continue to update just not as frequently.  Thank you all for your support!

Easton had a good night last night.  They took his arterial line out this morning so he only has one line left.  Hope to be heading home this weekend but depends on how he eats.  His throat is very sore from the suctioning that was done and it made his throat raw.  He has done pretty well this morning while I have been here.  Eating was the focus for today, and so far we are off to a good start.  He is now also canula free!

Easton had a good night last night.  However when I got to the hospital this morning he felt a little was and was borderline running a fever.  They decided to give him an antibiotic and think it may be the start of an ear infection.  By the afternoon he was back to his old self even smiling at some of the nurses:).   I finally got to hold him today as I haven't held him since last Thursday.  Tyler came over and he smiled at him today and that made Daddy feel very good:).  Hoping that he sleeps well tonight.  Think he may be getting his days and nights mixed up.  Thank God for his continued healing!  Blessings to all.

Easton had another good night last night.  He got a new cousin in the mix as well!  Very happy for his safe arrival.  They took out one o Eastons Ivs and is now on the regular canula as well.  He was able to have a "bowel movement so he is feeling much better.  He has been able to eat some which makes him very happy.   God is good!

Easton had another good night last night.  They took the drainage tubes out today.  Hopefully his cathater will come out soon.  The doctors are very happy with how he is doing!  We are very thankful for that.  The did decide to put him on a high flow canula but are starting to wean him off of that to a regular one then nothing.  Thank you for your continedb prayers!

Easton had another good night.  Tyler and I were able to be there when they took the ventilator out today.  Right now he is on a regular flow canula.  Depending on how he does with this, they may try feeding him in a few days.  If he doesn't tolerate it well then he will need to go to a high flow canula.  Praying that all goes well and that he stays on the regular flow canula.  He is currently on IV food.  So he is getting nutrition ,but has an empty belly.  God is good!

Last night Easton had a good night.  They took him off them paralytic so he is starting to twitch.  The Doctors are very happy with how he is doing.  He has a small stenosis in the pulmonary artery but nothing of great concern.  Just a small narrowing of the pulmonary artey.  He still looks great.  We are very blessed to have such great care.  God is good.

Easton had a good night or he"behaved himself" as Dr. Fotuna puts it.  His oxygen levels are at 98 which is great.  He looks very good.  We found out today that during surgery they take his body temp down to 64.4 degrees.  They are still trying to keep him cool today and will slowly start waking him up tomorrow.  He is on 45% oxygen and had an echo done this morning.  We are praying that looks good.  Thanks for the contined thoughts and prayers.

Tyler and I were able to see him and kiss his head.  He is on a ventilator and will be for the next couple of days.  He is still very handsome:)  We both were happy to see his oxygen levels at 96% rather than his normal 75%.  We are both very exausted and emotionally drained but praise God for taking care of our son!  Many prayers have been answered!  I have learned what it means to pray without ceasing!  God is Good!   We appreciate all of you inspiring messages ,prayers and thoughts.  God bless you all.

Surgery is Complete!!

Today finally ended after a long 10.5 hour surgery.  After they got in there they found there was more that needed repaired then they originally thought.  They put in a new pulmonary valve.  He had to carve out quite a bit of muscle to make way for the pulmonary valve.  He also put in the left pulmonary artery and then had to put in a right artery as well(as I understood.)  They had originally only done the left but then when they took him off the heart lung machine he struggled quite a bit.  He also closed the hole between the bottom two chambers.  He then had to create another small whole to help at this point, but not in the same place the other one was.  This hole they can close in a cath lab if they need to.  They will keep him very sedated for the next few days as the first 12 to 24 hours is the most critical.  Dr. Fortuna is very happy with the surgery and doesn't expect anything to happen but they will be monitoring him very closely.   v

Well he is still in the operating room.  They decided to make a few more repairs.  We arent sure what they are yet it will probly be a few more hours.  He has been in there since 9:30 this morning and it is now 6:30 pm.  We are ready for him to be done but also want them to do what they need to do.  Keep on praying!

Repair surgery

Well today is going well so far.  We had to be at the hospital at 6 am.  They took Easton back at 8.  Surgery started at 9.  They have been giving us updates periodcally throughout the day.  They are now starting to take him off the heart lung machine which bypasses his heart and lungs during the surgery and gets blood and oxygen to the rest of the body.  They are doing what is called warming  and bringing his body temperature up so they can start taking him off heart lung.  This is one of the first steps to this.   I will update later when I know more.  Prayers have been and are being answered.  Keep sending them as we have a few days to get through to make sure everything is working properly.

Where to begin...  Easton had a cath lab on August 16th.  This is where they go in through the groin and up that artery into the heart.  While in there, they put some dye in to take some pictures of the heart.  they have decided that in 2 to 4 weeks they will schedule his surgery.  His Cardiologist is recommending they do the repair, but they will discuss his case on Monday as a team.  I am relieved to know that my Kiddo will soon be repaired for a few years.  Dr. Shah thinks that they will put in a new valve and a new left artery becasue the arteries are small.  The right one is slightly bigger so I am not sure if they are going to do anything with that at this point.  He is getting so big!  Love it! 

Easton had his Cardiologist apointment on the 3rd of June.  I know, I am a little behind.  Dr. Shah is very happy with his progress.  He even took him off one of his medications.  He is very pleased with how he is doing.  We still are not sure when his next surgery will be.  His levels are starting to slowly decrease the bigger he gets so the shunt is working as it should and this is what the plan was so I guess we are going according to plan:) 

He is getting to be such a big boy!  Almost 13 pounds now!  He has been sleeping through the night so mommy and daddy are getting more sleep!  He still has crazy hair!  I just can't bring myself to have his hair cut yet!  He is a very happy baby and we couldn't ask for more!  Big Brother and Sister really think it is great that he will smile at them now, so of course they want to be more involved now!    I told Ely the other day that one day he is going to want to go everywhere he does . Not sure if he really believed me:)  Can't wait to see his reaction when that day arrives! I can't believe that he is already 3 and a half months old!  Where has the time gone. 

 All else is well at the Horner House,  we are busy with tumbling and T-ball right now and love every minute.  Along with going to the Doctor, but that all seems second nature now.   We feel very blessed, God is good !  Until next time! 

Easton had his cardiologist appointment last Monday.  They are very happy with his progress.  We are still not sure at this point when he will have his surgery.  We did find out that if they think that he will need his next surgery this winter that they will do it this fall because they do not like to do it when there are so many more germs.  He is a big growing boy!  He weighs over 10lbs now!  I can't believe he is already 2 and a half months old!  One of the nurses that we had up on the PICU was in with Cardiology so that she can become a nurse practitioner so it was nice to see her and catch up with her.  She couldn't believe how big Easton had gotten and how big his hair was:)  He also had his 2 month check up and started his shots:(  We had to check with the cardiologist to make sure that it was ok for him to get them because sometimes they don't want you to due to the stress that it can put on the child, but Dr. Shah said that Easton was doing so well that he should have them.  Hate to see them cry but am glad he is doing well enough to have them. 

We have been busy at home.  Easton went to church for the first time on Mothers day, it was pretty special :)   I started back to work today and the other two have been such a big help!  I think this will help to make a more structured schedule for us with house duties (that is my goal anyway:) So thankful for the support we have including our family!  Grandma Krehbiel is watching them three days this week and Grandma Horner will have them on Wednesday.  We feel very blessed for all of the prayers we have received and have seen what the power of prayer can do!!!!!  Blessings to all of you!

Easton is growing like a weed!  Newborn clothes no longer fit!  He has really started smiling and you have to love all of the involuntary reflex movements.  He sometimes scares himself.  I thought he might wear 0-3 months for a while, but he is so long now that he is close to start wearing some of the smaller 3-6 month clothes!  Monday is going to be a busy day for us as he has 3 doctor appointments that day.  He does very well sleeping at night.  I know we will get him sleeping through the night and then it will be time for his next surgery:)  Hopefully it won't take too long to get him back on track after that.  We still don't have a set time when the next surgery will be. It will all depend on him and how he grows.  I hope that it will be this fall if not later rather than sooner so he has more time to grow, but we will see!  He has (knock on wood) been a very good baby this far.  He doesn't cry much unless he is hungry and then he wanted it yesterday:)  I will update again after our cartiologist appointments on Monday along with his  pediatrician appointment where he will begin his shots.  Can't wait for that:)  God is good!

Easton had his second cardiologist appointment today.  His doctor was very happy with how he looked and sounded.  He weighs about 8 1/2 lbs and is now 22 inches long!  Ty thinks he is going to be nine feet tall at the rate he is going:)  The shunt is working great, and the PDA arteries have not closed yet, which may actually work to our advantage.  It may allow him to grow a little more before the next surgery.  Still not sure when that will be.  Will just depend when he outgrows the shunt.  Sure can't believe that he is already 6 weeks old already!  The kids are sure glad to have him home.  They both are very helpful (sometimes too much:))  They sure love their little brother!  I go back to work in a few weeks so trying to findsome one to come baby sit a few days a week.  He is such a good baby.  Only gets up once to eat in the middle of the night so really can't complain!  Since it has been so nice out we have been able to go outside for walks.  I keep a bottle of hand sanitzer in the stroller!  I don't think I ever thought I would be a germaphobe!  God is good and continues to bless our family.  With God all things are possible Matt 19:26

Whew!  Made it through our first week at home!  I think we now have some sort of a schedule down!!!  We have 3 doctors appointments next week so that is going to be interesting trying to get to those on time!  He is doing very good.  His heart rate and oxygen levels have all been where they were at the hospital.  He is now over 7lbs!  Big Boy!  He is getting long.  He is still very skinny though!  I am going to have to get the three month clothing out and washed up since he is about too long for the newborn clothes.  Still wearing newborn diapers though.  Hopeing that the remaining weeks go as smoothly as this one did!  Ely is enjoying calling him "Mini Me" since he looks so much like he did when he was a baby!  He thinks that is pretty cool!  Ella just wants to mother him!  But that is pretty much what I expected. His hais is hilarious!  Not sure if it will ever lay down, but I guess time will tell!  We are a very blessed family!  God is good!

We are home!  We were discharged on Friday and are now home.  It went well the first night home.  He slept well, not sure how well I slept.  I think I was worried about not hearing him.  The next day was a little rough:)  We are trying to get into a routine, along with weighing him everyday and taking his oxygen levels.  I then have to email these to the nurse each Monday.  Today was our first visit to the pediatrician's office.  He was very happy with Easton's progress.  He weighs 7lbs now and is 20 1/2 inches long.  It was quite the ordeal to get out of the house this morning!  I forgot what it is like to have an infant.  I decided later that I should have packed the diaper bag the night before:)  Hadn't really thought much about it until we were ready to walk out the door.  I was also trying to figure out when he would need to eat next, which of course happend to be when we would not be at home, so I had to pack a bottle as well:)  Had to make a run to McDonald's Drive-thru for hot water to heat it up!  I must say I was glad when we got home!!!  Please continue to keep us in your prayers during this time for healing as well as for my sanity:)!   Praise be to God for he is good!   I am a firm believer that God only gives us what he knows we can handle.  We feel very blessed!

Yesterday was a good day!  Easton is doing very well with his feedings.  Daddy gave him about an ounce and a half yesterday afternoon, and he kept that all down.  I think we found the secret to feeding him:)  He wants to take it down so fast, but we give him a little then burp him and then give him the rest and that seems to be working. 

They have said they think that we will be home on Friday!  Yeah!  Which will then mean we will start the rounds of doctoring until our next surgery.  I will keep updating the blog so that everyone can see how things are going.  Hopefully this guy is as content at home as he is up here in the PICU.  All of the doctors and nurses have been so wonderful.  I sure can't imagine being anywhere else.  I am ready to be home, but have sure met a lot of really great and talented people, who we will continue to see!  God is good and has healed Easton enough to bring him home until our next surgery which we will find out more when that will be after our follow up cardiologist apointments.  Thank you all for your thoughts and prayers and continue to pray for us in the months and weeks to come.  I will update next week after our first cardiologist apointment. 

Easton had a good day yesterday and today.  Today they started his feedings again!!!  Yeah!   They also talked about taking his arterial line out, but decided to wait, incase he doesn't do well feeding.  He is still getting his nutrients through the IV until we get him to full feedings.  Hopefully that won't take too long.  He continues to gain a little more each day.  It is always confusing because they weigh him in Kilograms, so I think he now is about 7lbs.   I found out about his little temper yesterday:)  The nurse had to change his dressing on one of his PICC lines, and he was not happy about it one bit.  Even after she was done, he was just mad!   Learn a little more about his quirks each day.  The doctors are happy with everthing else otherwise.  So we are thankful for that.  Praise God!!!  We are so blessed and are thankful for all of the prayers that have been answered this far. 

Easton has had a good couple of days.  The doctors are happy with his progress.  They are waiting until Monday to start feeding him due to the rise of his lactic acid levels earlier.   The levels have gone down, but they just want to play it safe.  So for right now, he gets tylenol and sugar water.  He still really likes his binky though too!!!  I got my CPR class taken, so we just need to have Daddy take his before we can bring Easton home.  Please continue to send those prayers up as we are not sure when he will have his next surgery, but it could be sooner than we originally expected, but will know more once he has another echo done. 

Easton had a good day today and Mommy got to hold him for most of it!  Yesterday we took a step back.  He started produceing lactic acid, which is an indicator that something wasn't right.  They stopped his feedings and his lactic acid levels came down.  Which was good, but they are going to continue to just feed him via the TPN.  This is an IV that he will get all of his nutrients from.  He gets a little agitated since he doesn't have anything in his belly, but not too bad.  Which is good.  I told Tyler that he is already very spoilied because he knows when I am there and fusses until I hold him and then he is fine:)  Funny how quickly they figure that out:) 

Today his levels and heartrate were back down where they would like to see them so that was also good!  God has answered our prayers again!  We are very thankful for that.  He seems much less agitated then he has the past couple of days.  Please continue to pray for us.

Easton had a great day!  The ventilator is out!!!!  Yeah!  Rounds went well this morning!  Doctors all think he looks great!  May even start feeding this afternoon or tomorrow!  Our prayers continue to be answered!  We had to laugh as the nurse told us yesterday that he probably won't have much of a scar and we think he will be disapointed that he won't have anything to show anyone:)  We are very blessed!  He also got an ounce of milk which he took down right away!   He was not very happy when he got done because he wanted more:)  I was able to prop him up, not quite holding him, but getting closer! 

Easton had a good night last night.  Hopefully the ventilator will get to comeout today!  He is tolerating the lowering thus far.   So we are keeping our fingers crossed. They took the drainage tube out yesterday and the nurse said a lot of times that helps them breath a little better.   All of his levels are good.  They also put in a feeding tube yesterday and he is getting 4ml of milk.  This does not go into his stomach, but they are basically priming the intestine to get it to work again.  I was able to be here for when the Doctors came yesterday learning a lot about the heart more than I ever thought I would!!!

Easton had a good day yesterday!   The nurses said he looks great!  All levels are where they would like them to be.  They hope to take the ventilator out today.  He was tolerating them turning it down last night, but they left it at the level it was on because he was breathing a little faster then they wanted him to.  The nurses have been awesome!  The nurses are wonderful!  His nurse yesterday explained how they would start taking lines out.  He will come home on a few meds, but all else looks good!  We are so thankful to be at the Children's hospital it is a great place!  Please continue to keep us in your thoughts and prayers.

The surgery went very well!!!  Praise God!!!!!  We could not have gotten through today without him!   Thank you for all of your prayers!!  The surgery went as expected, the doctor is concerned that possibly when the PDA arteries close, that it may narrow the pulmonary valve.  What this would mean, is that he may just have to have his second surgery sooner rather than later.  We will know more in the days to come.

Ty and I spent the morning with him and were both able to hold him for quite a while. We both were glad that we were able to do that.  You would never think that you could be tired from sitting around, but we both are absolutely exhausted!  The nurses told us to go home and get some sleep that he was in very good hands!!!  We are so glad that we are in the best place that we can be!!! 

He has a lot more lines then he did in the NICU, but that is to be expected.  The nurse said that he looked good!  Very strong pulse.  They have him on meds to keep him quiet, and comfortable.  He will be on a ventilator for a few days, and they will slowly start taking him off of things.  I warned them that he tried pulling out the tube when he was down in the cath lab and that he really doesn't like it:)  He is going to be my little stinkpot:) 

We are so blessed with all of the love and support from our family, church and friends!  Please continue to pray for us as we still have a road ahead of us. 

Easton had a good day yesterday!  He took down 39ml milk at his feedings today and loved every drop! He took it down very fast practically inhaled it!  Eats just like Daddy!   We laugh because they call him porkchop down in the Nicu and he is under 7lbs!  But he is definitely their biggest right now.

He got a new picc line in his arm and they took out the one in his belly button, which makes it much easier to hold him!  Yeah!  We both got to hold him yesterday and I fed him. 

After today will will be upstairs in the PICU.  I am sure the nurses and Doctors are just as nice, but will miss the nurses downstairs!  They have been wonderful! 

Say lots of prayers for us today!  God is good and will continue to bless us!  Thanks for all the prayers and support!  We are overwhelmed by your generosity and thoughtfulness!

Easton had a good night last night and day today!  They took out the Canula so he is breathing on his own without anything.  He ate 21ml at lunch today which Daddy got to feed him!  We both were able to hold him today.  It was a great feeling to hold him. We are ready to have the first surgery behind us to be able to bring him home.  He is strong and that is good!  We thank God for the blessings that he has given us and prayers have been answered and will continue to be answered.  Please continue to pray for us. 

Easton had his Cardiac Cath at 9:00.  It went very well!  He was already only on the Canula once we got back to his room and Dr. Patel said that he could be fed today as well.  She said she wanted him to like her again:)!

The Cath showed no new surprises so that was good news!  He will have a shunt put in to take place of the PDA arteries that he was born with.  The PDA arteries are something that they are born with and normally close anywhere from a few hours to days after birth.  Luckily his stayed open, and they are keeping them open with a drug called prostaglandin.  After this proceedure is done, we will wait until he is around 6 months old, giving his heart time to grow and then we will have a second surgery to repair the heart and at that time, the shunt will be removed.  They will then put in a conduit to correct the blood flow.  Once he outgrows that one, he will have to have a new one put in.  Hopefully this will only be a few more times throughout his life. 

We were glad to hear that nothing new was found and that we will proceed as planned.  His surgery will be at 1:00 on Thursday.  God has blessed us and will continue to bless us and has answered our prayers!  Please continue to send those prayers up!  One down and one to go!

Easton was back up over his birth weight yesterday. They also took him off the Canula.  He will have to have a  respirator today for the cardiac cath.  So hopefully after that is over with he will only have to have the canula until he has his first surgery.  He took 6ml by nipple yesterday as well.  His main source of nutrition still is from the IV.  This is to keep his intestines working.   Not sure how long he will go without the stomach priming after the cardiac cath.  Will update after the cath this morning.   

Easton had a good day yesterday.  I was able to hold him and feed him!  Mommy needed that! Daddy kissed him on the head.   He took 6ml last night by bottle so he was able to get a few more ml then he was.    He will have the Cardiac Cath done on Monday at 9:00 am.  And then they will decide exactly what they are going to need to do later this week.  We are not yet sure when that will be as it will depend what they find from the Cardiac Cath.  Everyone is still very positive.  Dr. Patell had me listen to his heart murmer.  I have learned things that I never ever dreamed I would be learning about the body.  We are very overwhelmed by the outpouring of support from just about everywhere.  It is wonderful!   Thankyou all again for all of the thoughts and prayers and please continue to pray for us. 

Easton had a good night in the NICU last night.  They took out his feeding tube and have been nippling him with the bottle.  He took 4 ml last night and did very well!  We will only be in the NICU a couple of more days and thenn once he has his first procedure, he will be moved to the Pediatric Cardiac ICU.  It is just one floor up from the NICU.  The nurses have all been wonderful in the NICU. 

The Pediatric ICU is a little intimdating to me as it seems like many more machines, but each patient has their own room, with sofa and bathroom.  Ty and I feel very fortunate to have all of this so close to home as there are many families who are far away.  We have some of the best cardiologist in the country to take care of Easton and are so thankful! 

We talked to a mother of a little girl yesterday and she had nothing, but great things to say!  Very encouraging. 

Our Journey Begins

Our story begins early on March 3rd.  About 1:00 in the morning the Easton's nurse was supposed to bring him to me for a feeding.  She came to inform me that while doing the normal 24 hour pku she found that his oxygen levels were low and that they had put him under an oxygen hood.  She had called the pediatrician on call.  I went down to the nursery and when I got there, the pediatrician had called the neonatalogist.  She said that they may have to take him to the NICU pending his findings.  When he came up he said they would take him down to the NICU but he originally thought pulmonary hypertension.  I went back to my room to shower and then go down to the NICU to be with Easton,  as I was getting ready to leave, the Dr. came in and said that Easton has what is called Tetralogy of Fallott (TOF).  It was very amazing to me that in that 20 minute window they had already called in the pediatric cardiologist and were able to diagnose. 

Tetralogy of Fallott is a birth defect that the heart doesn't form properly.  Easton has a hole between the bottom two chambers of his heart, and his valve to the 1st  upper chamber is narrow.  This then makes the blood flow not get to where it needs to properly to the rest of the body to get the oxygen it needs.    They ran some other test, and all other organs are fine.  Just his heart,  so from the outside he looks just like a normal little boy. 

On Monday, he will have a Cardiac Cath done, which they will take and put a little camera in and take pictures of his heart and lungs so they know exactly what they will need to repair.  At this point, they are planning on putting in a shunt to direct the blood to where it needs to go.   Then he will have another surgery when he is 6 to 8 months old he will have another surgery to repair the heart.  We need to let him get a little bigger so that his heart is easier to work on. 

After the 1st procedure is done, it will be about a 2 to 4 week healing time before we are able to bring him home.  He will be just like any other baby, just a little different in color.  After he has his second surgery at around 6 months,  he will have a few more surgery's throughout his life to replace the valve and more doctors visits. 

The Doctors have all been very positive.  They say he will be like all other little boys and should have a normal life.  One of the cardiac nurses sons has the same thing and is a 16 year old soccer player.  So everything we have heard has been very encouraging. 

Once we bring him home from his first surgery, we will have to be very careful with Germs for the first 6 weeks and on, but the first 6 weeks will be very important, we will pretty well be homebound with very little visitation to our home.

We appreciate all of the thoughts and prayers.  Please continue to pray for us.  We will keep everyone updated.