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....

The Unexpected (3)

This part was very hard for me to write, I don't like to open up wounds but as I explained before I felt I needed to do this story. They arrived at the childrens hospital and had to go in a different way from the ambulance. Once they found where their baby was, it had been 20 minutes or so. He was taken straight to the PICU (Pediatric Intensive Care Unit). They anxiously told the secretary who they were and was told to have a seat in the waiting room. She still carried his little blankie, smelling it every so often with tears in her eyes, seeing other people in the room also but thinking no-one mattered right now because her thoughts were solely on her baby....Waiting to hear their name being called seemed like eternity. Her mother-in-law came rushing to the hospital with the news and waiting with the once care-free couple. Finally they called their name and asked us to follow them. All three of them walked quietly to a meeting room with a long oval table. There across from them set a Doctor, she explain her name and who she was.....a cardiologist? What kind of Doctor is that she was thinking....thoughts races thru her head. The Doctor continued on to say the words that put the mother in a trance......."Your child is very sick, he has a congenital heart defect". He has Hypoplastic Left Heart Syndrom. Which basically means your son was born with half a heart. The left half never developed. As she continued to explain the parents were over whelmed. Not understanding what the words meant that the Doctor was saying. What is a aortic arch? They had so many questions, and not understanding most of the answers given to them. What.....thats impossible? That can't be....YOU HAVE THE WRONG BABIES FILE!! Things like this don't happen to anyone you know, surely not us!!!! As she set there explaining to the family what their next options were..... #1 wrap your baby up and take him home and he will live apx. a day to possible several days, spending your last days with him together. This is where the mom lost it, ARE YOU SERIOUS???? You are not taking my baby from me. I just had him. Why GOD why is this happening to me? Have I really been such a bad person that you'd do this to my baby? She couldn't think....then came option #2 Let your child have a set of 3 OHS (open heart surgeries), they will not "FIX" his heart but they will buy him time, allowing him to grow and get stronger. The Doctor explained that he has a 70% chance for survival. The mother still lost in the 1st option then realizes that OHS.....meant opening her sons chest up and only 70% he would LIVE......he could die? How is this option better? Then came option #3 Let him have a heart transplant now, but as the Doctor explained the problem with this is that there are not many newborn hearts available and to find a match for your son might prove lengthy and he really don't have the time to wait for one. The once happy couple quickly chose Option #2 the 3 stage surgeries. The parents wanted to see their baby even more now. They Doctor told them shortly they will call you back to his room. He had a room now? As they left the meeting room the mother let loose and bawled.....bawled like she never had before as the father just held her crying himself. Not thinking she could even stand she was feeling so weak, drained. Not caring who was watching her cry like this.....Sniffing the blankie to feel close to her baby, the couple and mother-in-law sat and waited to be called by a Nurse so they could see their baby. To be continued.....

The Unexpected (2)

Married for 2 1/2 short months and the newly married couple get the news they are 5 weeks pregnant. What a shock this was as nether was expecting this. The girls were overly excited. The pregnancy was routinely normal....baby was growing good, ultrasound looked great. The baby was leaning close to the 6-7 lb mark as she drew closer to delivery and this concerned the mother a bit as her girls were 9 lbs & 9 1/2 lbs. But Doctors assured her the baby was fine. So she didn't give it a second thought. DELIVERY TIME......The new lil family welcomed a baby boy! The mother noticed very clearly that her new lil baby was dark purple when she delivered but didn't say anything as they rushed him to his little bed/table and cleaned him up, he pinkened up. She knew her girls were pink upon delivery but again....Doctors didn't seem like anything was out of the ordinary so she cast her worries aside. Little baby past all tests and the happy lil family was sent home after a few days. Things felt great. Everyone wanted to see this precious lil guy. At two weeks old, they decided to take lil guy to his first Yankees/Royals game. That afternoon they had his two week check-up. They had noticed that the last several days his little head was bobbing a lot and we were unsure why. But he was eating fine, so we thought we'd mention it to his Doctor. They got called back to the room and the nurse came in and did her routine questions. As she listened to the baby she very quickly & urgently but calmed said, Ill be right back. She rushed from the room and returned with the Doctor. The Doctor seemed very focused as she listened to the lil guy. She walked out of the room and returned not too long later. She said, we think your little guy has pneumonia and we are having the Children hospital send a ambulance to transport him down. WHAT? What just happened?? The little guy wasn't coughing, he looked fine. Surely a ambulance was a little much. So the ambulance arrived, they listened to the baby. They then explain to the once care-free couple that now they we're going to put a IV in their baby and get him to the children's hospital. The baby was so small they had to put it in the front of his head, by his hair line. This was getting to be all to much. As the mother was already in her emotional state from giving birth two weeks prior to this lil guy and now she had to set and watch as they stuck a needle into his head and his screams were so piercing and she couldn't hold him to console him at all. The father didn't know what to think as well. He was in a state of shock. All the mother could do was kiss the top of her babys head. Not know what was going on. They then put their precious baby in a clear incubator type thing that he would ride in to the hospital. They followed the ambulance to the Childrens' Hospital. The couple prayed on the way, "God...we don't know what is going on. Please help this little baby." (over & over) Why is this happening GOD???? To be continued......

The Unexpected (1)

She was a single mom of two beautiful girls. Things were not easy but she always managed to get by. She had not been dating for 6 years, she always seemed to get the "wrong guy", it was more important to focus on her daughters. They were her life...there were many times she would go without so her kids could have the simple things..... ice cream out, special toys that everyone else had, name brand clothes. She did her best to keep her kids happy. She was so lonely for adult conversation, companionship. She decided to join a online Christian dating site...yeah, she figured this is so crazy putting herself out there like that. She had been going to church with her kids faithfully every Sunday and had been praying that God would send her the right man. She had made soooo many mistakes in the past and didn't want to repeat the wrongs. She was far from perfect why will God hear her prayers for a partner? What if this just ended like it always did? She made a connection with a man that she liked, but her decisions have failed before so she was very cautious this time. She was looking for something more than a one night stand or a "just friends" thing. They talked many times on the phone before she agreed to meet. She thought he was very sweet & handsome. He asked her out. They decided to go to dinner and see a movie. Conversation easily flowed during dinner and in the movie, he was so polite, not even holding her hand. They continued to grow close and within 2 months they married. So many said "it won't last", "this is crazy, you don't even know him". But in her heart she felt this is who God sent to her. She couldn't explain the feeling in her heart when people said negative things about her new relationship. It just felt right. Her mother had always taught her to go with her gut feeling.. Her children loved him, after a month or so her youngest daughter was 5 yrs old and asked if she could call him dad......of course he was overwhelmed with emotion and happily agreed. Her oldest daughter had just turned 12 and soon followed. A new dad in the home. To be continued.....