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.