Some people called it denial, some people called it an amazing act of faith - I tend to agree with the latter.
I trusted God and with that trust came the biggest peace that is very hard to describe. We celebrated Christopher’s birthday weekly and monthly, cake and all. Eventually, his expiration date came and went, he still remained a hospice patient, and we were still taking it one day at a time. His first birthday arrived and I cannot express to you the joy I felt that whole MONTH. The day we were promised NEVER to see was here!!! We had a huge celebration, and continued to give all honor and praise to the Lord. Christopher continued to get older and when he was 15 months old his hospice nurse decided it was time to take a look at his heart (we weren’t allowed any more ECHO's) with Christopher being a hospice patient and they “didn’t want to keep getting our hopes up”. The doctor told us that his heart had slightly improved but that he was still hospice status. Two days later we received a call from him that our visit left him feeling like it wasn’t finished and he took annother look at his ECHO. He also had all of his colleagues review it and Christopher’s heart had improved so much that in his good conscience, he could not recertify him for hospice! Okay after trying to put into words how I felt on his birthday, this is even more difficult to describe. Our language does not have a strong enough word. I can tell you that God does reward trust and faith and Christopher is a living breathing example.
He is now 3 years and 8 months old, his 4th birthday is rapidly approaching and I am basking in every minute with him. I still know better than to take for granted my time with him as we don’t know when god will call us home. It is a true miracle that my Christopher is alive today.
God is still in the miracle business. Also, doctors have to tell you what they have learned in the text books, but that doesn’t mean God or the child in question is reading that same book. I don’t know God’s plan, but I know that the least I can do is to continue to honor and praise Him, while also helping to spread CHD awareness.
You can read more about Barth syndrome at: http://www.barthsyndromefoundation.org/
And you can follow updates on Christopher here: http://www.caringbridge.org/visit/cj08/mystory
Natalie's Story:
Carrying Natalie, before being born, was awesome. Even the nausea, compared to her big brother, was mild. She went easy on me while I was pregnant with her. Everything was uneventful and normal. During the course of my pregnancy, I decided to switch my ob/gyn around 20 weeks along which probably ended up being the beginning of a big mistake. Seriously soon-to-be mamas: don't switch if you don't have to. Lesson #1. The only reason I switched was to deliver at a hospital that was supposed to be "top notch" (it ended up being just as good as the hospital where my son was born). As opposed to my old OB, I had no idea but my new ob/gyn was totally against using ultrasounds hardly at all since my firstborn was born healthy and full term. I had to pretty much beg for an ultrasound since I hadn't had one yet, so at 26 weeks I finally found out that Natalie was a "she". During the scan, the tech noticed that Natalie was very wiggly and the shots of her heart were not clear at all. She told me to tell my doctor, so she can send me for another scan another day. Totally cool. When I followed up at my checkup with the ob/gyn I asked her "so I hear the scans weren't clear enough at the ultrasound" and she states that everything was perfectly fine.
Now I know to never even take a doctor's word as the final word when I feel uncomfortable. But at the time, I just let it slide, even though I felt frustrated, but I just knew that everything was probably..well..fine with Natalie.
While scanning her heart during the echocardiogram, the doctor walks in about 20 minutes into the test and heavily stares at the screen for a moment, then sits down next to the tech and says "hmm..Natalie you're even trickier than I thought". He went from kind of concerned to really concerned. I'm sure my heart rate went up, but I did what I could to keep Natalie comfortable. She laid there like a champ. The echo had to be at least an hour.
Even with Natalie's cyanotic spells (now we knew why she turned so purple the day we brought her home and there was even a term for it!), Natalie managed to still gain enough weight to keep everyone happy. She was a little skinny and slept a lot, but she was getting closer and closer to the bi-directional Glenn operation, and getting more past the need for a BT Shunt. The focus was keeping Natalie stable and if she could skip the typical first surgery, we were told her outcome was even better. Her oxygen numbers were always in the high 80s or low 90s and with each point she went down, her age went higher. A few months before her surgery we "beefed" Natalie up with concentrated formula and she went from slim to super chunky. They wanted a chunky baby and they got one! With heart babies, the extra weight is actually great for them, during the surgery and for recovery. She had her very first heart catheterization, to help prepare the Hopkins team, about a week before Natalie's scheduled heart surgery. Right after they finished, the cath doctor tells us "well..we can't wait longer than a week for this surgery, she needs it no later, her heart is showing signs of declining. Please make sure the date does not change." My husband's jaw dropped. I remember how gray Natalie's skin was those few weeks before surgery. It was a good 50% of the time where she looked really sick. Her pulse ox dropped into the lower 80s. It was time.
On Monday, October 1st, 2007 Natalie had her very first open heart surgery: the Glenn Shunt. This surgery helps to prepare her blood flow to skip past the malformed right ventricle. The goal is to eventually have enough blood flow to the lungs without having to use that side, but use the left ventricle 100%.
It was a textbook case to the Hopkins medical team. But it was a miracle to us. I remember the advanced students (they called them "fellows") who visited the PICU would visit each patient 2 times a day to check their progress and document everything. They would always visit Natalie last because they used her as the example of a great outcome. They would always smile at me and there was never any shortage of compassion. Here, my 5 month old daughter lay there with tubes and wires coming from every direction, but she was kicking ass and they reminded me of that. I kept holding onto that. And with each day, more and more wires and tubes came out. Freedom!
The move went well, we quickly found a new pediatrician to help us keep an eye on Natalie's health, but during the summertime we noticed that Natalie wanted to rest more and her purple spells were more furious and happening more frequently. She still played and was active, but you could tell there was a drop. She would want to sit and lay around more often than play. We were finally able to get squeezed in to visit our new cardiac doctor at The Children's Hospital of Denver in mid-September for a sedated echocardiogram. That's when they threw a huge curve ball at us- the decided that Natalie was ready for the completion of her heart surgery and they wanted to operate ASAP. We were stunned. We thought we had a few more years!
Her body was ready for this operation even if us parents were not. Other than some extra "oozing" as the surgical team calls it, Natalie's transfer from off of the heart/lung bypass machine was a success. The operation took a whole lot longer than her first surgery, but this was it. This surgery was to "finish off" what her heart and lungs needed.
We had some little scares during the days in the CICU but nothing that hindered her ability to recover. At one point her kidneys were a bit "freaked out" with the amount of fluid and blood pumping in her body right after surgery, but her body worked it out. There was also a scare with her blood pressure dipping way low at times, particularly for the 2nd night, but just like her kidneys, her body worked that out, too.
By Monday night, January 18th we were all HOME. She did need continuous oxygen for a while, but we were prepared.
We used the oxygen therapy until about April and we didn't look back (except for when she had a nasty case of RSV in 2011 when she needed it again for a like a week).
Since her surgery, Natalie has evolved into such a spunky, energetic, wild and crazy 4 (almost 5) year old. She asks about her scars once in a while and tells us that her tummy and chest scars are "cool". To date, Natalie has about 9 visible scars from her surgeries- her "zipper", chest tubes scars, wrist scars, and neck scars from various lines. But just like her scars, the memories that Natalie has about her surgery seem to slowly fade away. She has attended preschool, a dance class (and another one coming this summer), loves horses, has had a Make a Wish trip to Disney World, and visited a real beach for the first time recently. She loves the big waves of the ocean. She's the kid, out of the 2 we have, that we'll have to keep a close eye on, but not just because of a heart condition, but because Natalie is a true thrill seeker.
Zander was born 31st July 2010 14 days over due. Normal pregnancy 4 scans and no signs of any problems. Zander was born naturally, weighing 10lb 3 3/4oz. But when Zander was just 9 hours old we were told Zander had a loud heart murmur and we was asked to stay overnight and a midwife check on zander hourly on his temperature and saturations and breathing I had at that point no idea what saturation moniter was.
That was a long and very stress full night the unknown was scary. The next morning we was seen at 9am, Zander went for a check with a dr who confirmed Zanders murmur was still there and loud and wasn't going to go away on its own.
We put things to back of our mind a little as Z was eating well and doing well.
The scan seemed to take forever then we had to go to out patients and wait to be seen by a consultant. This took forever. Then I was called into a consultants’ room, I could tell by his face it wasn’t good news.
He drew me a picture of a heart & went on to say several things about Zanders and his
problems. Then said he think he has something called TOF, tetralogy of fallots. But we had to be referred to leeds for a more in depth check with the specialists.
We was aloud home the same day, he gave us a booklet on TOF that I have read over and over since that day.
For the first 5 months Zander did really well he thrived and apart from regular heart checks, appointments a sedated echo he was doing well. He was our page boy in Oct 2010 he looked fabulous. But he started to get blue tints to his hands lips and feet. By ec time he was completely off his bottles and food. and from Dec-April that was a downward spiral with no one listening to me. During this time Zander started having TET Spells. the first was in Feb 2011. it was awful one minute he was eating the next he was screaming then white and floppy, while I was on the phone to the ambulance he came round. His sats were low and we were admitted to RGH over night the next day Zander was put on beta blockers propananol (spelt wrong sorry), 3 times a day to try and keep spells at bay.
Feb 14th Zander had a heart cath at leeds done by dr john gibbs as they needed more details for Zanders surgeon. He had more spells another bad one in April 2011. Another admission to hospital his sats were low 70s late 60s.
At this time we were finally referred to a dietician.
We came home the same night. Zander from December he had become more blue and more and more breathless. In April we met Zanders surgeon Mr Kevin Watterson (God).
He explained Zanders heart was a very tricky condition and would be a long and very risky surgery, he said it would be sometime in the next six month his surgery. Oh my 6 months that seemed a lifetime away.
But at Zanders regular cardio app in May Dr brown Zanders cardiologist decided it was time to push Zanders surgery forward hi sats were dropping he was so tired. She said she talk to his surgeon.
Dr brown rang a week later saying Zander had pre op appointment for the following week. Oh wow so soon. We went May 31st nd Zander had lots of tests and we met his anithnatists, bloods done ecg etc.
We was told surgery would be within two weeks dr brown rang me that Thursday to tell me Zander should have had surgery that day but had to be cancelled. We was rung weds 8th June dinner time by Zanders surgeons secretary Zander was due for Surgery Friday 10th we had to go for admission by 2pm the next day. Was awful mixed feelings at home, what ifs etc. Also Avril not knowing what was happening she was only just 3.
Was hard leaving her with family. We got there for 2pm, was given a room, and we waited for Z's endless tests for checking he was well enough for the next day.
We went in playroom, tried to keep as normal as possible Mr. Watterson came with consent forms and went over surgery plans again as said it could be 8 hours even longer.
The rest of the night me & Daniel played hangman tried to keep upbeat. I was awake by 6.30 just watching Zander sleep. Was so hard knowing what was happening that day. It was dark in the room, I was so scared so damn scared. I just prayed my boy would be brought back to me. They brought a gown for Zander about 8am, we took the long (well not so long but very scary walk to the theatre and they gave Zander his mask to send him to sleep was awful to watch saying goodbye was hardest hated leaving that room, was harder watching him go to sleep this time than when he had his cath done :'(..)
We went back to ward 10 we had been offered parents accommodation in the old nurses building so we moved our stuff over there. We walked into leeds centre in a daze. We went to the pub longest pint ever had. We sat with our phones close by at all times. We decided to go to the cinema knowing that it would be several more hours until Z was out of surgery and we had our phones on our knee the whole time. We went to see Hangover 2 but I have to say I spent more time looking at my phone than the film, we went back to parents accom and waited and waited, when it was around 8 hours we went back to ward 10 and waited in the parents room, it then got to 9 hours than 10 hours than 11 hours we was stressing thinking the worst.
It was almost 12 hours I went to the nurses’ station they said Zander was just being taken to CICU by the time we got took to ICU it was gone 10pm and Mr Watterson wanted to see us first he said surgery had been more complicated than expected and Zander was a very tough case. He had also found Z had several more layers of narrowing in his branched arteries and it was very severe. He patched up what he could get too and closed the hole. But he still had narrowing between heart & lungs and hoped they grew in time. He went on to say it was up to Zander next and the next 12 hours were critical and he still might not make the night.
We finally got to see Zander almost 15 hours later he looked so puffy but So PINK! He looked amazing in color. But he struggled lots and those first 4 days were very up/down touch and go. He had bad temperature problems, he was on dialysis, his heart rate was very low, he went into complete heart block, he had shadows on his lungs, enlarged liver. By day 7 he had still not got his own heart rate/rhythm back. Mr Watterson had decided Zander was going to have a permanent pacermaker implanted. A Pacemaker?!! He was 10 months old!!!
Mr. Watterson explained his surgery would last around 2 hours and they was slight risk of infection with the pm being a foreign body :(.
I broke down near Zanders bed Adrien the nurse was amazing i had to know would his heart be stopped again and so much more.
Tuesday he was moved up into HDU ward 10, he ate his 1st food in 11 days by mouth too, and Avril was with me that day and me Avril & Zander had our first cuddles since surgery was amazing!!! Love that amazing lil dude and his big brave sister!!
Oct 2011 we had his 2nd pacemaker app with Dr. Blackburn. Dr. Blackburn found that since August Zanders inlet Valve had broken causing enlargement on the right side of his heart :'( meaning possible surgery sooner for valve replacement or repair. Oh Geeez what else did my poor lil mr has to go through?! He was put back on his Diuretics.
Cassie Zanders Mummy! x x x
**Remember: 1 in 100 are born with a CHD
BE AWARE. EDUCATE. SPREAD AWARENESS!!**
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