Monday, September 7, 2015

September 7 - Dear Nicholas Sparks (Guest Blogger Rhonda Montague)

Dear Mr. Sparks,

Preston, a name I chose, a name I love to say. It is the name of my son, a name, a baby, a person whom I will never forget. Preston, born 12/29/92, died 2/27/93. The birth of my second son, Preston, was not as joyful a moment as my first born son. Yes, I was one of those mothers. Screaming something is wrong before the doctors even realized it. Taken from my arms, surrounded by doctors and nurses- there lay my son, a diaphragmatic hernia baby- diagnosed 3 hours later- then transferred to UNC. After a long operation and 24 hours later, I finally saw him again. Within an hour after my arrival to UNC he was life-flighted to Duke. I am sure that most mothers with sick children don't need an explanation of the memories, sounds, feelings of emotion, despair and helplessness of the days and months and many life-threatening decisions later. We all share a pain of our own in our own ways. My fondest memories of my son were wiping his dry lips with neosporin, giving him the only 2 real baths he ever had, playing different tunes on his cassette tape. Winding the special toys that I had carefully picked for him, holding the hand that had less tubes, wiping the matter that sealed his eyes shut so that he could see, keeping his diaper dry and bottom rash-free. This was the concern of a mother because the doctors and nurses weren't interested in bottom care! These were the things that made me the mommy and the others the doctors. It has been 3 years and 4 months since that horrible day for us and finally a restful day of peace for my little one. I call those days the best and worst of my life. At times it feels like a dream I had long ago and at other times it feels so close to me that i can smell the smells, hear the beeping sounds. It was not long ago I had taken my newest miracle, Sierra (2 years) to ER for stitches. I had washed my hands with hospital soap as so many times in the past. The smell of that soap is like the scent of my son. I remember trying to keep my hands from touching things so that I could keep the scent as long as it would stay (my little girl was just fine, only a few stitches by the way!). To all of you parents, mostly the mothers because we are usually the sentimental ones. I would like to say; it is ok to cry, ok to be sad sometimes. Others will never understand. Do what you have to do to grieve. I do things that others would probably send me to a mental institution over. But, it is my way.... for example, i talk to Preston, dance with his picture, took my pregnancy test at his graveside, close my eyes and dream of him in heaven, take out his toys or tapes or pictures and just in my own way let him know that I love him and he is still alive in my heart. If this is crazy- so be it. I would rather be crazy than to be without him. I even have graveside parties and we send him balloons. Once I sent a balloon with all the children's names who had once been his bedside friends. A lot of parents who have recently lost a child wonder how they will go on. First and most important- God is the key. Without Him I would not have survived this crisis in my life. People ask how do you do it and my reply is always the same- God's grace. He gave me my son, He made a place for my son and one day He will join me with my son- This was God's promise to me when I promised to be faithful in serving Him (I became saved the night Preston was born). To those of you that God is speaking to; hear me, Do Not Test God- Preston was God's link to my heart. And when the link was no longer needed- He took him home. Now I have to be faithful not only because he has someone I want to see again but because I truly love God and more than anything I want to be where He is.

Where do you go? What do you do after reality of this cruel world starts to set in; no more cards or phone calls, no more sympathy which sometimes I actually long for. You go on and it goes on living inside you. One of the hardest questions people ask is "How many children do you have?". Such a simple question; such a complex answer. To most I say "Three, one of which is in heaven" (there's that sympathy I wanted!). And on the days I'm not so strong, I jus say "Two" and in my heart I say "I'm sorry". Others won't want to hear about or talk about it anymore. The take down the picture of the baby who never was and place it in an album. It has been 3 years. I have learned to exist with the heartache. I am a good mother and wife. My only regrets of guilt is how my son suffered. His little body was pushed to the point it could no longer take it. His kidneys shut down; we pushed him to the point his skin began to tear all over- he became unrecognizable. On that sad morning at 10:30 we cut off his ventilator. He took 3 long breaths and then it was over. What he and we went through was all in God's plans. I'll never understand it really, but I think of (The Virgin) Mary- Her son was born, He taught the world a lasting lesson, and then early in life He suffered a terrible death. So that we may live forever. It may not be right to compare my life and my son's life to God's life. But as I have felt, Mary must have felt and my son will live forever too. And this makes me proud of him and to be his mommy.



Trauma in Siblings



Derrick my first born was 22 months when Preston was born- fully potty trained, sleeping in his toddler bed and expecting a new baby like the rest of us. He is a very sweet dispositioned child; very smart, very sensitive, had never been apart from mommy much. Those 2 and half months of his life changed him in a lot of ways. He was swept away from me for days at a time. Slept with everyone and still today comes in our bed even though he is now 5 years old. He had started wetting the bed at this time back in '92 and still today wears pull-ups the majority of the time. He was with Preston a lot; shared his toys and made special pictures for him. Even in his small age he had a great understanding. I hid nothing from him. However, seeing his mommy and daddy sad all the time must have been hard. Sometimes- most of the time- he was my greatest comfort. It had been only 3 days after Christmas and 2 and a half months later he finally returned home to play with his toys- the tree looking like someone had turned it to nothing was finally taken down late February. When Preston died we bought Derrick a plane mobile to hand in his room- a gift from Preston- to this day it still hangs and he remembers why. We've also in time given him one of Preston's special stuffed dogs- he sleeps with it every night. This is his little brother to him. He has his bond somehow. About a year ago we took him back to Duke. It hurt that he seemed bewildered. What I thought he would remember, like the shuttle (his favorite thing to do), or the fish tanks, or the parking deck where he'd tell me how to park and which buttons on the elevator to push, or the Ronald McDonald house, where he played upstairs, he seemed unknown to it. Then later in the cafeteria he looked at me and his dad with tears in his eyes and said; "I don't remember all of Preston but I loved him a lot". Ripped my heart out and I wondered if I had pushed too hard to keep Preston's memory alive for him. During pre-school last year they were discussing someone's pet dying. Derrick began to talk about his brother dying- and he's a pretty shy little boy. His teacher was in awe and asked me about if it were true or not when I picked him up. My heart broke for him. We went to see Preston's grave that day and brushed the sand away, etc.. He didn't want to talk about that day at school. I knew that moment it would always be inside him just like it would be inside me.

Then there is my little girl, age 2. Oblivious to all that has happened and to the miracle she is to us. She hears his name and visits his grave and birthday parties also. I know she has a sense of this abstract being to be special. She'll find his pictures at our house and of course knows they are of "Preston". When she says his name she reminds me of another 2-year-old 3 years ago and I love to hear the song of that name a child's voice. Sierra visits the grave with us and even her first standing up on her own to walk was out there on Easter afternoon- of course there were pictures. This past Easter we hung a toy chicken thing on his grave and Sierra wanted it. She now drags it around and calls it "Preston". She has no idea. I truly hope that one day she will not fill second choice. Even though her life was based on the child we lost and the child we wanted. However, since my first baby doll years ago I have wanted my very own little girl and now I have just that from God above and she truly is the dream of a daughter I have always wanted. I hope she will see it this way. If you have siblings older or younger, remember to account their feelings. They are smart and sensitive to mommy and daddy at any age and they are special little miracles too.



A Bad Experience Leads To Comfort.

I had a root canal not long ago. The first and hopefully the last. It still hurts!! However the dentists kept leaving me for long awaited minutes at a time. It was silent- I hate silence. It makes me think and feel- I can't deal with silence. In any case, laying there still, nothing to see but a light above me, goggles over my eyes and stuff in my mouth (they put one of those balloon things in there), i could hardly breathe, needed to swallow. It hit me; I was in his (Preston's) shoes. The doctor would come and go, I'd hear voices. They would do things to me then leave. I missed their presence- even though it hurt. I began to cry uncontrollably- the goggles were filling up on the sides. I kept thinking how nice it must have been to have someone come in at those times and play me music, hang mobiles for me to see, sing me songs, brush my dry lips with cold water, touch me tenderly and kiss my head. It made me realize all those moments I spent with him were probably as precious to him as it was to me. How comforting to realize this. Then the doctor pulled away my goggles and saw my tears- she didn't question it much. I remember running from the building and getting some fresh air.

Sincerely,
Preston's mom, Rhonda Montague (North Carolina)

Sunday, September 6, 2015

September 6 - Dear Nicholas Sparks (Guest Blogger Donna Fahey)

Dear Mr. Sparks,

I discovered I was pregnant with our second child in December 2003. Daniel, our eldest, was 2, and had been born with no problems at all. It was a shock to find out, at 19 weeks, that the baby's heart was on the right hand side. There was no indication at this stage of any other abnormality, and a visit to Leeds Heart Centre showed the heart was working perfectly. Even so, we were devastated; little did we know of the scale of the heartache still to come.

We battled on, with scans every 4 weeks, when, like a bolt out of the blue, the stomach and bowels were seen to be in the chest cavity - a diaphragmatic hernia. This was at 35 weeks. Having had the scan early on a Friday morning at the beginning of July at our local hospital, we had to wait until Monday to go to see the consultant at Leeds General Infirmary. We had some idea of the implications of a diaphragmatic hernia, and over the weekend, emotions veered from complete despair, to hopefulness, and a sense of the whole thing being surreal, and so bad it could only happen to someone else.

At 9am on Monday in Leeds, we were told our baby had a 20% chance of survival. I remember it like it was yesterday, and I still can't imagine a worse moment in my whole life. Anyone who has had this news will understand that the emotions can't be described. The consultant was so sympathetic and compassionate and understood how we were feeling. He answered all our questions - why had it happened? Was it something I had done? We were plunged into a whole new world, an all-engulfing thing that would completely take over our lives from that moment.

We drove home in a stunned silence. Nothing mattered anymore - work and other things were just insignificant - friends and family rallied round, and my Mum ran our house with military precision.

Every minute of every day seemed like a lifetime. I could hear the clock ticking like I was heading towards impending doom and there was nothing I could do to stop it.

Days went by - I went out occasionally to playgroup with Daniel, to the hairdressers, to Tesco's, all the while looking at other people thinking how it was strange the world could carry on so normally whilst ours had come to a standstill. Friends with toddlers Daniel's age offered support, and some people just didn't know what to say.

Five weeks went by in this limbo. I went to Leeds every Wednesday for a scan, and each time I saw the baby I felt like crying, as it was destined to a fate I just couldn't help. We were on a rollercoaster of weighing up our 20% chance, being positive and then plunging back into despair.

Towards the end I had a feeling of inevitability. I had 3 litres of amniotic fluid drained due to polyhydramnios in mid-July and felt physically better. When my waters finally broke on Sunday evening at home, I think we were relieved the limbo we were in was finally going to be over, and we would know one way or the other what was to become of our little one.

I had our little girl early the following morning, and I saw her briefly before she was taken to NICU. She looked healthy, she was on time and 6lb 1oz- the same weight as her big brother. They looked just like each other.

Three hours later, we were in NICU sitting next to our daughter. She was anaesthetised, paralysed and on life support. We were told she was stable and funnily enough I felt pretty calm, although my husband Simon was shocked and tearful.

This was the beginning of the long haul. It was four days later that Emma finally had her operation. I honestly felt like I had won the Lottery - she had made it in my eyes. However, following her to the theatre (after one false start the day before) wasn't nice. We sat next to her for 10 days before we had to go home to start coping with Daniel and the daily trips to Leeds to see Emma. With a few ups and downs, Emma eventually made it out of NICU and onto a surgical ward. She had a feeding tube and I was expressing every four hours like clockwork - it was a focus for some semblance of a routine.

Emma finally came home at the beginning of September, age 5 weeks. There was a spell in November when she went into hospital with bronchiolitis. We have struggled on with various issues as they've cropped up. It's been a bit like feeling your way in the dark, with no-one locally really aware of the implications of looking after a diaphragmatic hernia baby - feeding, breathing, day to day activities, and how to work round routines with Daniel, oxygen levels, chest infections, when to go to the doctors without seeming to be a pest (assuming you have a doctor who knows about CDH,  in my experience, not all of them do). It's been a long hard slog, but we now have an 11-month-old little miracle who can eat, sleep, breathe quietly (most of the time), and do all of the things other babies do at playgroup. She thinks the world of her big brother, and he her. At her christening next month, there won't be many dry eyes, as she's special to everyone who knows her.

Sincerely,
Emma's mom, Donna Fahey (Great Britain)

Saturday, September 5, 2015

September 5 - Dear Nicholas Sparks (Guest Bloggers Dean and Libbie Miller)

Dear Mr. Sparks,

When we were deciding on names for Megan, we were looking for names that had meaning for us. Megan means great mighty one. What a mighty little fighter she was. She gave it everything she had. And Rene means born again.

Megan was conceived in March 1999.In August we went in for the standard 20-week ultrasound which revealed the heart wrenching news that Megan had a birth defect called Congenital Diaphragmatic Hernia. Her stomach, intestines, and a portion of her liver were up in her chest. She would have to have surgery to correct the problem. Doctors at that time gave her a 50/50 chance for survival. Babies with CDH tend to have underdeveloped lungs, making it hard for them to breathe. We had to struggle with the idea of giving her the 50% chance to live or to terminate the pregnancy. At that time we put our faith in Gods hands and decided that 50% was better than no chance. In November the doctors found a heart problem. A small Aorta valve that may cause low blood flow thoughout her body. This only complicated the fact that she had CDH.

Megan was born on December 13th 1999.We heard her cry just once before they started to put her on a ventilator, which would help her breathe on her own. What a wonderful feeling it was to hear her cry. Later that night we had Megan Baptized. We take great comfort in knowing that she was placed into Gods hands early on.

The next 2 days Megan's condition was up and down which was to be expected. On the morning of December 15th, the doctors decided to do the surgery to repair the CDH. They would have to do this surgery before they could correct her heart problem. Surgery went well and everything was back in it's proper place. After surgery Megan was not tolerating any of the ventilators very well so the doctors decided to do another type of surgery. ECMO. The surgery would give her body a chance to rest. When they started the surgery they discovered that because of her small Aorta, the rest of her veins were also small. Because of this the doctors were unable to place Megan on the ECMO machine. The doctors explained Megan was being deprived of oxygen before and after she was born with the small veins. This in all likelihood would have led to Brain damage. When we heard this news we knew it was time to let God take her into his arms. With all the problems that Megan had, it was too much for this precious little angel to take. Megan left us on December 15th in the early afternoon.

We now know that Megan is in a much better place. She is comfortable, at peace, and pain free. No parent wants to see their child struggle. It truly is a blessing that Megan has found eternal life and is in a happy place. Corinthians 13:4: Love is patient, Love is kind, Love doesn't boast, Love is not proud, Love is not rude, Love always trust, Love always hopes and Love never fails. Rest in peace our little Angel. All of us are on loan from God. We are all Gods children.

Sincerely,
Megan's parents, Dean & Libbie Miller (Colorado)

Friday, September 4, 2015

September 4 - Dear Nicholas Sparks (Guest Blogger Sharla Edwards)

Dear Mr. Sparks,

In December 1994, we found out that we were expecting twins the following June. I had a previous miscarriage so this news was a wonderful blessing! We live in a small West Texas community and the news and excitement soon spread. Our friends and family were surprised and almost as excited as we were! I had a fairly uneventful pregnancy with the exception of taking maternity leave from my elementary teaching job to rest more at the request of my obstetrician. We had several sonograms and all seemed to be progressing right on schedule- we also found out that we would probably be expecting fraternal twin boys! We busily prepared the nursery and bought "two" of just about everything! On May 14, after our baby shower, my water broke at home and we immediately called the doctor who suggested we come on to the hospital. Once we arrived, the doctor confirmed the fact and admitted me to the hospital where I was restricted to absolute bed rest! They began administering medication to postpone the early delivery and we continued to have two more sonograms which showed the babies doing fine. On the morning of May 18, nature overruled modern medicine and I delivered the boys 6 weeks early. Brett was delivered first and weighed 3 lbs 14 ozs and about five minutes later, Cole arrived weighing 4 lbs. I knew immediately that something was wrong. Brett was crying and screaming and Cole was not making any sound. They quickly whisked the boys away to the NICU unit with an initial diagnosis that Cole had probably just swallowed some amniotic fluid. I wish it had been that simple. Within the next hour, we had a confirmed diagnosis of a severe left-sided CDH. We had never heard of a CDH and certainly never dreamed it would affect one of our children. The doctors informed us that Cole would need emergency surgery in order to survive. The only pediatric surgeon was in another hospital less than a mile away so the doctors and nurses prepared to transport him. The transport team stopped by my room on the way out so that I could see Cole. I couldn't get a very good look through the walls of the transport incubator and I wasn't allowed to touch him, but I could see that he was beautiful! My husband went with Cole and I encouraged our family and friends to go to the other hospital as support during the surgery. I made numerous trips to the NICU to see Brett during what seemed like countless hours as we awaited news on Cole. My heart felt as if it were ripped in pieces. I felt such happiness and relief that Brett was doing well and such sadness and fear that Cole wasn't. The surgical team gave Cole a 2% chance of survival and with the help of God, he beat the odds! Immediately after surgery, Cole was placed on ECMO and we knew that the next few hours and days would be crucial. (Cole is the smallest baby our team had every placed on ECMO, which made the outcome even more unpredictable.) The next morning, I was allowed a temporary pass from the hospital to go to the neighboring hospital to see Cole. I will never forget the overwhelming feeling of seeing that tiny body being overpowered with so many tubes and such big equipment. I remember the low rumble- almost vibrations- of the ECMO machine. The room was filled with doctors and nurses monitoring Cole's progress and the operation of the equipment. After five days on ECMO the cannulas were removed and Cole was placed on a high-frequency ventilator under minimal stimulation conditions. He progressed slowly but steadily from that point and after two months in the NICO unit. Cole made his first trip home!! Now, almost two years later, Cole is doing good. He is developmentally behind, but we have seen slow and steady progress in that area. He did not sit unattended until 12 months, and began crawling at 16 months. He is now pulling up to stand and walking around furniture. Actually he is walking just about anywhere as long as there is something to hang on to! He has been admitted to the hospital with a couple of cases of pneumonia and an occasional bout of bronchitis. He had a Nissen and a Pyloroplasy done at the age of 10 months to repair a severe gastro-esophageal reflux. Cole has a g-tube that was placed during the reflux repair and I regretfully report that he still has it. Cole is NOT a good eater- actually he hardly eats by mouth at all. Many doctors attribute this to "oral defensiveness" and concede that he will eat when he is ready, but that is not quite fast enough for me! We battle every day to get him to eat by mouth and we have even scheduled an appointment with a speech therapist for extra help. Cole is under weight and I think that has a lot to do with his slow developmental progress- he doesn't have the strength to be too active. Cole also has a profound hearing impairment that has been attributed to either the ECMO or some of the antibiotics he had to take when he acquired a critical staph infection (Gentomyacin in particular). We are very thankful that Cole did not have any bleeds while on ECMO although a subsequent MRI revealed a small amount of damage probably due to trauma at birth and specifically diagnosed as very mild spastic diplegia. The location of the damage may have an affect on lower body motor skills, although our therapist assures us that Cole will walk, run, jump, and play. Well, it certainly has been a long road, but not one without many rewards! Cole is a wonderfully happy toddler that brings sunshine into our life everyday!

Sincerely,
Cole's mom, Sharla Edwards (Texas)

Thursday, September 3, 2015

September 3 - Dear Nicholas Sparks (Guest Blogger Rachel Paige)

Dear Mr. Sparks,

It all started when I was about 3 months. It was a regular check-up. The DR. found she had C.D.H. I was not too sure what was about to happen. So 5 months later the doctors from San Francisco called me and told me my best bet would be to deliver there. So 4 days later I headed up there. The doctor ran every test possible. So 2 days later she was delivered by C-section, Alexyss was born at 7:59 a.m. on March 23, 1998. She weighed 8lbs 2oz. and 21in. She was rushed to the N.I.C.U. ECMO bay. She had her surgery on 4/1/98 and came off E.C.M.O. She really did good until her nitric oxide machine failed. The doctors. came and told me what was going on, that she had no chance to live. So we decided to pull her life support. Alexyss lived for almost a month. Alexyss would be two years old this year. My other two daughters talk about her all the time.

Sincerely,
Alexyss's mom, Rachel Paige (Caifornia)

Wednesday, September 2, 2015

September 2 - Dear Nicholas Sparks (Guest Blogger Christine Edwards)

Dear Mr. Sparks,

Cody Guillory Edwards, born on June 3, 1998, 9lbs. 3 oz. and 24 in. long, arrived home July 26 after almost 8 weeks in the intensive care unit of Phoenix Children's Hospital. What a wonderful and long awaited day it was for Mike and I.

But let me start from the beginning! A routine ultrasound done at 24 weeks showed a defect in the baby. A week later a level II ultrasound confirmed that our baby had a condition known as a right-sided congenital diaphragmatic hernia. What is this? Good question, we didn't know either! The diaphragm separates the chest cavity from the abdominal cavity. A hernia is a hole in the diaphragm, which then allows the contents of the abdominal cavity to float up into the chest cavity. The result: the baby's lungs do not have the room to grow properly. This happens in 1 out of 2,500 fetuses, however only 10% of those occur on the right side which is often more serious than the left side. The outlook was not good. Our baby was given a 10% chance of survival.

We spent the next 4 to 6 weeks researching this condition. Fortunately, there are two centers in the United States that study this condition and we were able to get much information from them. We also learned that this is one of very few conditions that fetal surgery is done. We qualified for fetal surgery but after much soul searching and information gathering, we felt our baby's best chance for lung development was to go full term.

After the decision was made to go full term, we then needed to set up our baby's post birth care. It was his only chance. We chose Phoenix Children's Hospital and prior to Cody's birth, met with the neonatologists, nurses, surgeons, and ECMO coordinator. We also viewed an infant on ECMO. Cody's post birth care was set up by 32 or 33 weeks gestation and then all we could do was wait and pray that he would fall into the 10%.

The day to be induced was selected and on June 3 at 9:30 p.m. Cody Guillory was born (after of course 12 hours of labor -- and no we did not know the sex until then). And then the rollercoaster ride began (the 4 months prior was nothing). The second the cord was cut, I stopped doing the breathing for Cody and he was handed to a team of 10 people who worked on him, a foot from my bed, to necessitate and stabilize him. It was tough, but after 35 very long minutes, Cody was wheeled down to the NICU. Cody survived birth, the first of many hurdles for this little guy. Three hours later a surgeon hooked Cody up to ECMO. Hurdle number two had now been overcome -- Cody made it on ECMO. He was very, very sick though. For the next 14 days, we watched our little guy struggle to survive. He had so many tubes coming out of him, it was hard to even see that there was a baby lying in the bed. Time was running out for Cody. At this point, we still had no idea if Cody had a lung (we know that he will not have a right lung, but we were hoping for a left lung). All x-rays and ultrasounds were inconclusive. And then on day 14 we got the news, a good size left lung had finally opened up! He did have a lung, but would it work. That was the next question. Cody gave us the sign, we went forward with his surgery to close the hernia and move the liver and bowl back into the abdominal cavity from the chest cavity. Surgery on ECMO is very dangerous, because if the baby starts to bleed there is little chance to stop it. But we had to go forward. At 5:30 p.m. on July 17 his surgery was done. During surgery, a small right lung was discovered. Good news, considering lung tissue grows until you are 8 years old. The surgery went well, and then we waited, praying that he would not bleed. Forty-eight hours post op, we got a call from the nursery. Cody was bleeding, we needed to come down right away. There we sat holding Cody's hand while 10 or 12 people worked on Cody trying to stop the bleeding and stabilize him. About 4:00 a.m., the bleeding seemed to stop and Cody appeared to stabilize. Mike and I stayed till about 6:00 a.m. and then went home. We spent that afternoon with Cody, in very good spirits. After a terrible night, Cody looked very peaceful and very strong.

The next morning, Father's Day, we got the call, Cody was doing great! They were weaning him off ECMO and planned to decannulize that evening. His turn around from Friday night to Sunday morning was miraculous. It had never been seen before ( and they have been doing this for 11 years). What a great Father's Day present. Mike and I went down that afternoon and at 6:27 p.m. the ECMO circuit was clamped and for the first time in 18 days Cody used his own heart and his own lungs! Two hours later he was taken off ECMO.

Still very fragile, his condition was very guarded. Any setback could be devastating. So we waited some more! And every day Cody got a little bit better and a little bit stronger. He was on a jet ventilator at this point to help him breathe. He was suppose to be on this machine about 4 weeks and after 13 days he did so well they switched him to a bird ventilator which allowed him to do more of the breathing. So after 4 long weeks, Mike and I held Cody for the very first time!! What an exciting day. The game plan was to keep him on this new ventilator 3 to 4 weeks and after 3 days he self extubated (pulled the ventilator tube out of his mouth), and started to breathe completely on his own!! It was the first time we had heard him cry -- what a great sound!!

Cody continued to get stronger every day. He started to smile and coo just like a regular baby. We finally started talking about a come home date. And on July 26, that is just what happened. Our beautiful baby boy come home to meet his big brother and sister. Cody took to being home very well! He sleeps about 18 hours a day. He came home on some equipment -- oxygen, feeding tube, and apnea monitor. But within a few months should be off all of this equipment. We all feel very blessed that Cody is home with us and we plan to take very good care of our beautiful baby boy!!


Sincerely,
Cody's mom, Christine Edwards (Arizona)

Tuesday, September 1, 2015

September 1 - Dear Nicholas Sparks (Guest Blogger Jamie & Jason McSwain)

Dear Mr. Sparks,

It's only been five months. We are still trying to understand why. I was 33 weeks pregnant and so very excited, just as any expecting parent would be. My husband and I spent that Sunday shopping. We went out to get groceries, and ended up at a baby store purchasing Maggie's nursery furniture. We spent the whole day shopping, and throughout the day, I noticed that I was losing some fluid. I really didn't think much about it until we got home. I called my mother who is a nurse, and she suggested that I go to the hospital to have it checked out. They informed me that my water had not broken, but I should see my doctor first thing in the morning. That was a Monday. I went in, and he checked me again. No he said, but he had a hunch that something was going on, so he sent me to the hospital to get admitted. I was monitored and was then sent to have an ultrasound. That was the beginning of the end. The hospital, of course, had better equipment than the doctor's office, and the tech informed me that he could see something wrong. He called my doctor and he quickly made his way to the hospital. Apparently, they couldn't see the fourth chamber of Maggie's heart. My doctor told me that he was going to call a referral, and do some research. I stayed in the hospital overnight fearing that my first child, my daughter, had a heart defect. The next morning my doctor arrived and told us that I was going to Atlanta to a group of doctors who were "top notch." I arrived in Atlanta on the 26th of June. I was admitted into the high risk delivery unit for three days. On the first day, they took me in for an ultrasound. That was when we found out that Maggie had CDH. The doctors wanted to take her immediately. The doctor who performed the ultrasound said, "I am very worried about your baby." So, off we went, down to prepare for an emergency C-section. The anesthesiologist came in and gave me an epidural, and my husband was suited up to accompany me. As soon as we were about to head out, the doctors came in and told us that they had decided to wait. Unfortunately, there were no ECMO beds available at the children's hospital where Maggie would be transferred to. We were given many options. Stay there, transfer to Augusta (which they didn't highly recommend), or transfer to Birmingham. The out of town options had ECMO beds available, but it was up to us. Of course, we wanted to do what they recommended. They said that we should stay in Atlanta, and they would check every day for the ECMO availability. As soon as a bed became available, they would perform the surgery. Three days later, a bed was open, but they decided not to do the c-section. They thought that Maggie had a better chance the longer she stayed inside the womb. My question was "If the lungs are the last thing to develop and the CDH is putting pressure on that area, why not take her before it gets worse?" Wouldn't you think so? Well, that wasn't the case. I was then transferred to the high risk prenatal unit for another three weeks. I had ultrasounds performed everyday, and was monitored twice a day. My water broke during the night on July 4th. They didn't think much about it, so they let her stay in, on top of giving me daily antibiotic treatments intravenously. I remained that way for two weeks. During that time, one of the doctors informed me that he didn't see any reason for me to stay in the hospital and that I might get to go home with once a week ultrasounds and monitoring. It didn't happen that way. My whole family thought that was totally out of the question. At 37½ weeks, another doctor came in to tell me that they were finally going to take Maggie. AND once she was stabilized, they would perform the surgery to repair the left-sided CDH, and that I would be taking home a "normal, healthy baby." We had no idea what CDH was. They never told us what could happen. Sure, they gave us survival percentages, which grew from 50/50 to 70/30. She looked great they said! Well, they decided to induce labor. My cervix wasn't dilated so they inserted Cervadil. About 45 minutes later, Maggie's heart rate dropped dramatically. Nurses and doctors rushed in, mashing my belly, trying to get her back. The anesthesiologist came in and asked if I was allergic to anything, and my mother said no. Then he asked "Is there anything wrong with this baby?" and my mother replied, well, yes, she has CDH. And he then said, "Then what in the H is she doing in here?" They rushed me into the surgery and Maggie was born. I woke up in recovery with my husband by my side, and they brought Maggie to see me. She was in a big see-through case where I got to hold her hand. The nurse informed me that she was very sick and that they had to get her to the children's hospital right away. I told my husband to go with her, that I would be fine. She was born about 2:00 in the afternoon. At around 6:00 the next morning, we lost her. We had no idea that it was that severe. The children's hospital informed my husband that Maggie had a right-sided hernia, not a left. Maggie's doctor couldn't believe that we had been told that she had a left-sided hernia. Apparently, right-sided is worse. We still don't understand everything that happened. We can't figure out why the doctors made the decisions that they made. We are still in shock. We can't understand why. My doctor here in town told me that it was nothing that I did. That it was a fluke of nature. Will this happen again? I am so scared that it will. I have been told that it won't, but I can't help but worry. We are trying again, but we will never replace Maggie. She was so beautiful. So perfect on the outside. CDH is a horrible defect. We had never heard of it before. We pray every day for people who have to go through this like we did. For everyone that has gone through it, we feel your pain. A pain that will never go away!

Sincerely,
Margret's parents, Jamie & Jason McSwain (Georgia)