The Unexpected (9)

Life was as normal as could be for the family. All the visits from OT & PT finally stopped and the little heart warrior was doing great....considering his health history. The family of 6 had become a very close family. The couple lost many friendships along the way, and even some family had a hard time grasping the "germ" spreading. It was crucial for everyone that came in contact with their warrior to get a FLU shot per his Cardiologist. Since he was born with (1/2 a heart) and a non-functioning spleen......simple colds and viruses that a health person would get could be fatal for their lil warrior in a matter of days. The parents went into OCD mode.....they sanitized toys regularly, always washing/sanitizing hands anytime they were out in public. They knew they couldn't stop all viruses but they did the best they could. One time they took their Warrior to a birthday party when he a little over 2 years old, it was in January at a YMCA building. It was cool in the party room but not freezing by any means. The little warriors lips/nail beds were blue as could be, he was so cold. The mother had to take him out to the car and turn the heat on full blast just to get him to (pink) back up. After they came back inside, the couple explained to the parents of the birthday boy that it was too cold in there for their son and he's turning blue....they didn't "get it"....and seemed a little upset that they had to excuse themselves from the party just to warm their son. Sadly that was the last time they saw those friends, no more calls from them. The family went into "LOCK-DOWN" mode from late October to April each year. Meaning that the two boys rarely went out in public and the two girls went out very minimal during this time. The mother taught the kids home-school and didnt work, the father had a full-time job outside of the home. This put a "MAJOR" strain on friendships. People inviting the family to birthday parties or Holiday parties and the family not being able to go. Slowly the invitations & calls stopped. The couple just had each other. As almost all of their friends stopped coming around. The couple often wondered....did they really care to begin with? Why didn't they take the time to understand their new lifestyle? It hurt....but in the end they knew they were doing what they had to do for their child. It was hard not seeing some family over Christmas because they couldn't get their FLU shot. But its a sacrifice the couple had to make. Year after year the same rules applied. The two daughters had issues about wanting to go to sleep overs or hang out with friends...this was a challenge each fall "lock down" time. The mother would lay in bed at night and cry, knowing that sleepovers and hanging out with friends was normal and she knew her girls needed it. But then on the other hand "lock down" meant exactly that. They decided if the friends family had their FLU shot then it was ok for their daughter to sleepover and rarely were they allowed to bring a friend over to their home during this time. Over the years the girls grew to understand their "lifestyle" and it wasn't so much an issue. To be continued....

HAPPY FATHER'S DAY!!!

The Unexpected (8)

The 2nd open heart surgery was scheduled and all went well. The baby was released from the hospital in just 3 short days....which was AWESOME!! The Mickey button was removed from his stomach as he was eating well on his own. He continued to grow and complete milestones, although he was labeled as "failure to thrive". The family was very active at church. But this took a toll on the little guy. He contracted every illness there was, despite the sanitizing of toys. The mother and child would stay at home more & more often...especially in the RSV/FLU season (Upper respiratory illness)....October-April. This caused many problems for the family as there were some of the church congregation spreading rumors that there must be another reason that the mother & child were not attending church, back-sliding, etc. Even though they knew the real reasons. This caused a strain on the family feeling this wasn't the church for them. Then the family gets the news....... YOUR PREGNANT!!! This was a shock to the couple. They immediately got in contact with the Doctor so that this baby could have his/her heart check out completely. Everything went well with the pregnancy. The mother would see a high risk Doctor for ultrasounds and following the babys progress. About 4 months into her pregnancy she was scheduled to go to the local Childrens Hospital to have an extensive two hour ultrasound of the babys heart that was in her womb. After what seemed the longest two hours they were relieved to hear that the baby she carried was completely heart healthy and a BOY!!!! Not long after wards their two year old started looking very blue, his lips, fingertips, his general color was very dusky. The parents called 911 and when paramedics arrived, their little guys O2 levels (oxygen) was extremely low, and he needed to go to the hospital. After the longest time in the emergency room, the Doctors told the parents that their son contracted Rotovirus. He spent 3 days in the hospital fighting this illness. This was contracted from a little girl in the Nursery at church. This was the finial blow. The church acted like they understood but when concerns were addresses....nothing was done. The parents felt they could NOT set and watch their little fighter struggle with this any longer. The mother stopped attending with her little heart warrior as the rest of the family continued going. The mother was talked about and ridiculed as being a "sinner". She would receive calls from church elders asking what was wrong and people are thinking your back-sliding and you really need to return to church for your family. The mother struggled with this along time. She figured it was the elders job to straighten the gossipers out....sadly that wasn't the case as the elders were the instigators of it all. Their new baby arrived with a unexpected emergency C-section as he decided to flip around and wasn't in the correct position for a normal delivery. The little family was now complete.....two girls & two boys! To be continued...

The Unexpected (7)

Day after day for 42 days the parents rarely left her babys side, except for the few short hours they had to run home and spend time with their girls. It was a very hard time. The mother felt she needed to be here with her baby she felt if she left and something happened she would never forgive herself for leaving him. Yet she knew her girls needed her just as much. The baby would lay in his bed and just watch her, the mother spent countless hours just sitting beside his hospital bed holding his hand or rubbing his forehead. After his stomach surgery he was given a (Mickey button), this was attached on his side of stomach that went straight to his stomach. The parents had to be trained to run a feeding machine attached to a pole for feeding times. The formula would be poured into a bag hanging from the pole and the cording was ran thru the machine, the end connected to his Mickey button. After his feeding they would need to take a plastic syringe and burp the baby thru the mickey button.....this happened at every feeding. He was doing great and was finally discharged from the hospital. Going home....what an adjustment. The couple was trying to get back into some kind of normal routine with getting their kids up & ready for school, the husband getting back to work from his requested OFF time. The baby was sent home with oxygen (if needed), his feeding pole with all the extra items needed, a Oxygen Sensor machine (this had a button that was taped to the babys foot that read his oxygen level) A normal O2 reading is 99-100. On their baby the Doctors wanted at-least 70. Anytime the baby moved while asleep with this on and alarm would sound because maybe the O2 level would be 69. As the parents slept this alarm would go off and the parents would jump out of bed and race to their baby thinking the worst. Many sleepless night, too many to count times they would walk over to their precious sleeping baby to put a finger under his nose to feel his air to confirm hes still breathing. Laying beside the baby and listening to his heart....beat after beat knowing that his lil heart is sick and you CAN'T FIX IT! OT (Occupational therapy) & PT (physical therapy) and a RN would make their visit each week to work with and check on babys progress. The mothers calendar book was scheduled week after week of these appts. The baby did well. Growing and laughing, rolling over, crawling, and finally walking. All of these were a few months or so delayed due to his complicated lil life so far, but they were achieved and each day was treated as a CELEBRATION. He had his first birthday and doing great then a few months later, they got the call...... Its time to get your son scheduled for his #2 Open heart surgery. Which would be operation #4.......Oh the dreaded feeling all over again, at this time he was alil over 1 year old. To be continued...

The Unexpected (6)

This was a stressful time for the parents. The mother trying her best to be strong for her girls that needed her too, realized this was so much bigger than she could handle on her own. She felt like she was going to have a nervous breakdown. She dropped down and prayed like she never had in her life. God, I need you so bad. I cannot do this anymore. Please take away this stress and lighten my load, I give my baby to you, you know what he needs more than anyone. You are the only one in control of his fate. The mother felt an immediate weight lift from her shoulders. Thats when she changed.....thats when she knew, God was waiting for her to come crawling back to the Father. Recovery was slow, the Doctors tried numerous time to wean the baby off the ventilator but the baby wasn't handling it well. After more than 5 tries the Doctor did some exploring of the lungs and noticed that one side of the babies diaphragm was stuck in the (up) position. So he needed a surgery, Diaphragm Plication.....this would basically tack that one side down so that he could breath on his own. Surgery date was set and at 1 month old the baby was ready for surgery #2. This was the point that the mother decided she could not emotionally sign papers. When the anesthesiologist came in for consent all the papers talked about is please sign but understand "YOUR CHILD COULD DIE".....is all the mom seemed to see. After having her lil baby have cardiac arrest in her arms weeks prior this isn't something she could sign. Thankfully her wonderful husband again held the pen and signed. He had been her rock during these weeks, when she felt like she couldn't take anymore he was right there the whole way to hold her up.....keeping her going! Surgery was done and recovery went well. Baby was removed off the ventilator shortly after with no more breathing issues. One day as the couple was sitting in the babys hospital room. One of the attending Doctors came in and explained that since their son had been on ECMO during his open heart surgery that he could have developmental delays and since he was on the ventilator so long it may have affected his voicebox. By this time...that all seemed minor to the couple. They would learn to deal with and help their son with any delay or issue that came his way. They we're in for the long haul, they were determined to give their son whatever chance they could at survival. The Cardiologist came in, she was the same lady that first told the couple about their baby diagnosis. She sat with the mother one day in the room and the mother explained...."my husband & I have completed faith in God that he will take care of their baby, we believe that God sent us this Miracle and he is in NO WAY done with our baby". The Doctor set there and patted the mothers knee and said, Well Im sorry but Miracles DON'T happen, she said her goodbyes and left the room. The mother was NOT going to let someone try to destroy her faith in God. She knew God had this! A few weeks later the baby wasn't tolerating his formula well so the Doctors said he need a stomach surgery, GT-Fundoplication- Surgery #3, this was to prevent stomach contents from returning to the esophagus. All went well and baby was doing great. A few days later the Cardiologists came to visit again, her & the mother talked about concerns and she expressed how well the baby had been doing and she said......HE IS........ A MIRACLE BABY! After she left the mother cried while holding her little babies hand. The Doctor had finally understood! To be continued....

The Unexpected (5)

WARNING: This is graphic.... Over the next few days, their lil baby remained on a breathing ventilator. The Doctors came to the parents and said we understand your daughters Birthday is August 1st and thats the day we were going to do his Norwood, (his 1st open heart surgery), do you want to choose another day or go forward with the surgery on that day? They were concerned if the baby didnt make it, the sibling would always associate that with her birthday. After the couple discussed it they decided that no matter the outcome a day or so wouldn't matter. If something happened it would still be associated with her birthday and this surgery was crucial to get done asap. The surgery went as planned apx.6 hours the couple sat in the waiting room. Every so often the Nurse would call with updates, 1st, hes nice and asleep, next all the extra IV lines are put in, next they cooled down his body and put him on ECMO , (it takes over the work of the heart & lungs while they are being worked on), next was they got the chest open and are exploring, next the rerouting had begun, then they got the call the mattered the most......SURGERY was done! The surgeon came down and talked with the family, he was very calm saying that everything went as expected and baby is in recovery. He explained that the babies chest would remain open for apx a week, due to swelling and such then the chest would be wired closed, inner stitches to close the inner skin area and the chest stapled closed. Again the couple just shook their head a lot in agreement. This was all so much to take in. Still can't believing this was all real. Surely it was a bad nightmare. That night the hospital let the couple sleep in the Ronald McDonald room which wasn't far from the PICU where their sweet baby was. The PICU decided which parent got a room based on the (condition) of the child each night. Around 4am the couple got a call to come to a certain area of the hospital ASAP. The couple flew out of bed like never before and went to the room they were told. Not knowing why the sudden urgency. The worst of thoughts going over & over in their head as they quickly walked the halls of the hospital. They get in the room and there was two Nurses nonstop stripping these tubes that were coming from their little babies chest into a container that held blood. His little chest was puffed up and all the bandages were soaked in blood. The Doctor explained they had to take the baby back into surgery due to a overabundance of blood pooling. (Basically his chest with filling with blood). Things were looking very grim as this wasn't good at all. The couple called their Pastor from church and they got the prayer chain going. Everyone spread the news to the next and so many of the people at church were in prayer for this lil baby. After a few hours they got the call that the baby was stable and they found the problem that was causing the blood loss. What a BLESSING! THANK YOU GOD FOR HEARING OUR PRAYERS! This was the point that the mothers prayers started going from WHY HIM GOD? to THANK YOU GOD! Thank you for guiding the Doctors hand during surgery, thank you God for giving my lil baby a chance, thank God for one more day, thank you God for making this little boy the strongest fighter I know! To be continued....

The Unexpected (4)

This is a emotional post......BEWARE! As they sat there waiting, the dad needed to smoke a cigarette. The bad thing was you had to go all the way outside of the hospital and cross the street to be off the property. He left and was only gone about 15 minutes and they called the family's name. The mother jumped up and went to the Nurse. She led her back thru the double doors past all the rooms with full length glass doors. Inside she saw some rooms had tiny babies, some rooms had small children, machines beeping everywhere. Doctors & nurses everywhere moving about but all the mother could think about was her baby. As they continued thru the PICU. They finally came to a room and there laid her lil baby. The IV needle still in her babies head among other IVs now in her babies hand and foot, Her lil 2 week old baby was wrapped up laying in the mini hospital bed. There was something taped to the babies toe that lit up. This all being new to the mother she didn't know what any of it meant. There was a machine that had various numbers on it that was beeping steadily. The mother needed her baby, she needed to wake up from this dreadful dream. She just wanted to start this day over. She asked the Nurse if she could hold her baby. Trying to hold herself together with whatever she had left in her. The nurse placed the baby in her lap and the mother held her baby, kissing him, so many thoughts running thru her head, as the mother held the baby the numbers on the machine started to drop. The nurse was busy writing something on a chart. The numbers slowly kept going....down, down, down.....finally the mother said, Nurse......why are the numbers dropping. The nurse looked up, frantically grabbed the baby from the mothers arm and screamed CODE BLUE. The room immediately filled with so many Doctors and Nurses. They start doing CPR on her precious baby.Then it hits the mother that her baby just had cardiac arrest in her arms. The mother looses it and it starts crying almost in a screamed cry like her life is ending. WHY IS THIS HAPPENING?????? WHY GOD WHY? The Chaplin came rushing to the mother trying to console her, which did no good. The father came walking into the PICU the mother seen him at the far end of the hallway and rushed down not knowing what was going on. As he was being told, he again being stronger than his completely broken wife, held her as they both cried together. This went on for what seemed eternity. The Doctor came up to the couple and said, your baby is fine. We brought him back and his heart is beating. We had to intubate him (put a breathing tube down his throat). They went in the room to see the baby. That poor little sweet baby, what did he do to deserve this? God please let me take his place. His life is just starting and I would gladly give mine in place of his. Her insides were screaming TAKE ME INSTEAD GOD....over & over To be continued....