Well, Grant did make it to term. He was born on December 25, 1997, after 18 hours of induced labor and an emergency c-section. Grant was immediately taken to the NICU for testing and observation. His cardiologist came in right after he was born to do an echo, so he could finally give us a complete diagnosis. He diagnosed Grant with:
Dextrocardia:
The
heart is positioned on the right side of the chest cavity instead of on
the left side.
Transposition of the Great Arteries(TGA):The
positions of the pulmonary artery and the aorta are
reversed. The aorta is connected to the right ventricle , so most of the
blood returning to the heart from
the body is pumped back out without first going to the lungs. The pulmonary
artery is connected to the left
ventricle, so that most of the blood returning from the lungs goes back
to the lungs again.
Ventricual Septal Defect (VSD):
"hole" in the wall between the two lower chambers of the heart (the
ventricles). This hole may be small, medium-sized or large, and may
be single or multiple. It may occur in
different parts of the wall, and may sometimes be found along with other
heart defects.
Double Inlet Left Ventrical (DILV):
both
top chambers empty into a single (left in Grant's case) ventrical
Considering all of this, he did remarkably well, once he started eating. He only spent 3.5 days in the NICU before being able to room in with me for a night before coming home. We brought him to the cardiologist two days later for a check-up and at that appointment it was decided that Grant should have his first surgery when he was around 3 weeks of age.
When Grant was 2.5 weeks old (this just happened to be our 2 year anniversary) we packed him and everything we thought we might need and headed out on our two hour drive to Philadelphia, where Grant was to have his surgery. He was admitted to Childrens Hospital of Philadelphia (CHOP), where he was observed for one week prior to his surgery. The entire staff at CHOP was wonderful, I don't have words to describe what they mean to my family, especially Dr. Gil Wernovsky (Grant's Cardiologist), Dr. Thomas Spray (Grant's amazingly talented and kind surgeon) and the entire Cardiac ICU (CICU) staff. The morning of surgery, January 20, 1998, has to be the most frightening day of my life. I kept rocking Grant, looking into his eyes and wondering if I would ever be able to do this again. I had the biggest urge to take him and run away where no one could hurt him, even though I new this wasn't possible and that without surgery there was no way he would survive. But the thought of him going through surgery and recovery broke my heart. I kept wondering why someone so little and sweet had to endure something so terrible. They finally came to take him to the OR, we were allowed to walk down there with him, but leaving him in the OR waiting room and watching them take him away was so hard. Especially when I didn't know if I would ever see him again.
Surgery lasted about 3 hours and the nusre came to tell us that Grant was on his way to the Cardiac ICU (CICU) and that we could see him in about 30 minutes. Well, an hour passed and no one came to talk to us, so Andy went to see what was going on. Grant had had bleeding that they couldn't control, so he had to be taken back to the OR, opened back up and have 3 more sutures put in. After that everything went well. When we finally got to see him, all I could do was cry. Partly because I hated seeing him with all the tubes, wires and the ventilator in and partly because I was so happy that he had made it through surgery. Grant did great, he was weaned off the ventilator 36 hours after surgery and was finally able to eat 12 hours after that. He spent 4 days in the CICU before being allowed to go to the ward, where he spent 5 days before being discharged. It was amazing how quickly he recovered. I have never been so happy and relieved, it was such a wonderful, yet kind of scary, feeling to take him home.
Grant went for a follow-up ten days after we got home, where everything looked great except for his oxygen sats (they were in the 50's). So he was put on oxygen for 6 weeks until his sats came back up. I never thought I would get used to carrying Grant, the diaper bag, and the oxygen canister and tubing everywhere, but within a week we had a system down and Grant and I started everywhere again.
In June, Grant had his first heart cath and everything looked great. He only spent one night in the hospital and his second surgery (hemi-fontan) was scheduled for July 2, 1998. On July 1st we arrived at CHOP for a day filled with pre-tests, including a sedated echo, x-rays, blood work and an EKG. At the end of the day he was given a halter monitor to wear. On the morning of July 2nd we arrived at CHOP at 6:30am so Grant could get prepped for surgery. He was given a sedative to drink and quickly went off to dream land while I held him. Again the hardest part of the whole thing was letting the nurse take him away. I hated watching him disappear through the doors to the operating room, not know how things would turn out. Even though his nurse came to give us an update every 45 minutes, the next 4 hours seemed endless. Surgery went very well, this time with no complications. Grant was weaned off the ventalator in just a few short hours after surgery. He spent one night in the CICU before being allowed to go to the ward, where he spent 3 days before being sent home. It was amazing, but Grant learned to sit unassisted just 2 days after surgery while sitting in his crib.
It is now March 1999, and 8 month since his surgery. Grant is doing great. He has only had two minor ear infections and has never even run a fever or had a cold. He learned to walk in January and is now running everywhere. He talks all the time and has more energy than his Dad and I do. His third (Fontan), and hopefully final surgery is now scheduled for sometime during the Summer of 2000.
This 1st year has been
so wonderful. The simple fact that Grant has made it this far
is a miracle. I look at him every day and am just amazed. He
has brought me such joy and love, yet at the same time made me so scared
that I didn't know what to do. This has also been the hardest year.
I never expected when I got pregnant that I would have a child born with
CHD. But this too has been a blessing in disguise. I
have learned so much about myself, and life and my faith in God; things
I never would have learned otherwise. Grant has taught me how
precious and delicate life really is. Watching him in the hospital
after surgery, so tiny and helpless, knowing there is nothing I can do
for him, and just praying that he survives has given me a whole new perspective
on life. He truely is a miracle!!! He is the joy and
love of our lives.
Update
on Grant (May 19, 1999):
Grant went to the
Cardiologist today for the first time since the beginning of January.
Since January we have moved from Washington, D.C. to New Hampshire, so
Grant has a new cardiologist now, Dr.
Norman Berman, and he is wonderful. Grant is doing great, we
were a little worried about him. For the past few weeks he has been
getting very tired and sleeping more than normal, his lips and nail beds
have been getting very blue after short periods of activity and he has
been having lots of shortness of breath. But the cardiologist assured
us that Grant is doing just fine. His Sats were 78-79, he has gained
weight and grown taller....he now weighs 24lbs and is 33.25 inches tall
(at 17months)....his EKG and echo both looked great. So we don't
have to go back for another 3-4 months!!!! And the best news of all......they
are going to wait until he is about 4 years old before doing his Fontan!!!
Grant did so well during his entire appointment. During the EKG he sat quietly and colored, he didn't even try and pull the leads off. He let the nurse take his blood presssure with out any problems, he just looked at the cuff funny and went back to coloring his picture. He also let the doctor listen to his heart and then sat very still for almost an hour while they did his echo. I was very amazed and proud of him.
Ok, now for the fun information. Grant is a typical toddler, he runs and plays. Is full of energy and is the most loving baby I have met. He is also quite the story teller, I just wish we knew what he was saying, because he laughs through his stories, but we have no idea what is so funny. He is also very independent...he now walks, not crawls, up and down the stairs just like the big people, feeds himself with silverware and is almost ready to move from the crib to a big bed.
Update:
August 5, 1999
Grant went for one
of his regular check-up with the PC (he goes every 3 months) and thankfully
there really isn't much news to share. Everything looked great!!!
His SATS went up from 76 to 82 in the past 3 months, which makes us all
very happy. His energy levels are back to normal and his shortness
of breath is almost completely gone. He has gained some weight and
is now at 25.5lbs and has also grown a little, he is somewhere close to
35 inches. His PC commented several times on how great his color
was...I think his exact words were..."Wow!! He sure looks pink. That
is great!!" Which made me feel good, especially considering he was
wearing a blue shirt!!!! That is about all the news on Grant.
He is still a typical toddler....he has started using some simple sentences
and talks all the time.
Grant is still the
joy and love of our life. He is the most amazing person I have ever
met. Everyday is something new and wonderful. And I thank God
for him everyday!!!!
Update: December 1999
Right before his 2nd birthday Grant went in for one of her regular
check-up with Dr. Berman. Since it had been 6 months since his last
echo, he had one first thing in the moring followed by an office visit.
The echo went really well, Grant actually sat very still and watched a
movie and snacked on some food during the hour long procedure. His
heart function looks great and his venticle is still a normal size and
shape. His sats also went up....they were around 84-86 that day....we
were very excited about this!!!! So as long as everything keeps going
as it is now we are still looking at his Fontan being done when he is around
4 years old.
Grant had been sick and lost some weight in December, so he had his 24mo well-baby appt in January. He weighed in at 27lbs and was 36.75 inches tall. He is doing very well and his pediatrician and PC are very happy with his progress. He talks in full sentences, knows quite a few letters and numbers by sight and loves to read his books that he has memorized. He is as active as ever and we are all very happy to see that. He gets winded more often than he used to, but we all feel (his PC included) that is it just because he is growing and more active than he used to be. He is able to keep up with other kids his age and wears his Mom and Dad out, so we know he is doing well.
So we just pray that things keep going this well for Grant and that
the next 2 years before his Fontan go slowly!!!! We know that
won't happen though, the last 2 years have flown by faster than we ever
imagined.
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