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Nicholas James |
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When my daughter (Jennifer) was 19 weeks pregnant she went for an ultrasound. They found something wrong with the baby's heart. This is when they decided they wanted to know the sex of the baby. I'm not sure what the technicians told her and her husband (Ryan), but after they got home she phoned me and told me that the baby had HLHS and she would have to deliver in Edmonton. Of course none of us had ever heard of this before, so I had all kinds of questions I was asking her and she couldn't answer them, because she didn't know anything about it either. We all cried for three days. I didn't know how I was going to get through this, and I could only imagine what Jennifer and Ryan must be going through. At this time, I was not much support to them, because I was angry and upset myself.
We got through those first few days, and started looking things up on the internet. I found a lot of information and also found other people I could talk with. I found a lady in Toronto, who was the mother of an HLHS baby, and started asking her my questions. She was both helpful and positive.
Jennifer also found out that there was another mom (Toni) in another small town in Saskatchewan who was in Edmonton at this time with her baby who was having his second stage surgery. She started emailing Toni and asked her questions, and I talked with Toni's mom, as she was a grandma too.
Things were going pretty good up to Jan. 10, when Jennifer's fluid started to leak. She went into Edmonton and was admitted immediately. She was on complete bed rest. The only privileges she had was bathroom and shower. They can now weigh babies before they are born. When Jennifer went into the hospital the baby weighed 4 lbs. 8 oz. We were really scared that he was going to be born soon after she was admitted to the hospital, but luckily he didn't arrive. On January 24th the baby was weighed again and he weighed 4 lbs. 13 oz. Still not big enough to get the surgery done if he were to be born. Jennifer was getting concerned that he wasn't gaining the weight her doctor expected him to, so she started asking for more and better hospital food. He was weighed again on Feb. 7 and he weighed 5 lbs. 6 oz.! We were so excited. Now she also has another privilege. She can walk to the microwave! He will be weighed again tomorrow, Feb. 21. We are all waiting anxiously to see how many oz. he put on.
While Jennifer is in the hospital, Toni gave her a name of another mom (Kerri) who had a baby about 10 months ago, who was not prediagnosed. Kerri went to the hospital and her and Jennifer had a long chat. I have been in contact with Kerri's mom, Maryanne, who gave me this website to subscribe to.
Anyway, things are good with Jennifer and the baby. His expected arrival date is the beginning of March. The Doctors told Jennifer that he will have his surgery within three days after he is born....maybe sooner. It is getting closer and we are all getting nervous now, not knowing what is around the corner. The thing that makes me a little less nervous is that I have read so many success stories.
Thanks to this website. I'm sure I'll make good use of it, and when Jennifer gets out of the hospital, I will tell her about it.
I'll pray for all of your babies, both born and unborn with heart defects.
June 2006 Update
Baby Boy from Saskatoon, Saskatchewan was not born at that time; Nicholas James was born on Feb. 27, 2006. He was held by his parents for about 20 minutes before he was taken to the Stollery Children's Hospital in Edmonton. When he got to the Stollery Hospital, the Doctors were waiting for a very sick little boy, but when he arrived by ambulance, he was so stable that the Doctors didn't really know what to do with him. They took him to Neonate and put his monitors on and he breathed on his own for about 9 hours, then he was ventilated.
One week to the day, on March 6, he had his Norwood Surgery. He came through the surgery with flying colors! We were so happy. He was released from the hospital. He is doing very well and has had two cardiology appointments since he's been home both of which were very positive. He will be going into Edmonton on July 4th for a cardiac catheterization. His parents have not heard when his next surgery will be. The only frustrating thing for his parents right now is that he is not drinking from his bottle. His mom is still feeding him through his NG tube. She can't get him to take his bottle. She has tried EVERYTHING she can think of. All in all things are going very well for him and we are praying that his next surgery will go just as well.
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July 5, 2006 Update
Nicholas had his cardiac cath this morning. As far as we know, everything went well, but we still haven't talked to the doctor. I guess he's working hard for his money today. Nicholas seemed to have tolerated the procedure well, but did go back to the observation unit with a little oxygen. Right now, he's with his dad and is extremely tired, but with time will hopefully start to come around a little more. I guess that's it for now, and when we find out more, we will let you all know what's going on.
July 6, 2006 Update
Just thought that I would give an update, as I am sure you
are all wondering what is going on. Nicholas has some type of a
bug in his system that is easily treated with antibiotics, but
since they have started them he is feeling much better. Before
Nicholas arrived in Edmonton at the hospital his heart rate was
between 196 and 238bmp with respirations anywhere from
90-120/min. He was sure struggling to breathe, and his color was
really bad. As soon as the transport team arrived in Edson, they
were able to get a line started and Nicholas was given 100mls of
normal saline. As soon as he had that, his heart rate and
breathing started to improve and his flight was uneventful!!
When Ryan and I finally arrived here in Edmonton, his vital
signs were better, but the doctors still weren't sure as to what
was going on. Nicholas went upstairs to the pediatric cardiology
ward and seemed to be fine. Later on in the morning, he began to
get fussy again and his heart rate started to increase and his
respirations became laboured. This is when they decided to start
some antibiotics. After a couple of hours, he improved and his
vitals were much better.
Today he has been really good. He is tolerating his feeds and
his heart rate is around 130-140, and his respirations are
around 30- 40. His Oxygen level is also good and is sitting
anywhere from 70-85%. The Dr's seem to be happy with what is
going on right now, but we have been told that we will be in the
hospital for at least 10-14 days.
As for when his next surgery will be.... the cardiologist that
we have been dealing with for the past few days is trying to
push to have it done within the next couple of weeks. So lets
all cross our fingers and hope that this will happen. It would
be so nice to get this all over and done with.
August 2006 Update
Nicholas James is going in for his Glenn on August 31 at the Stollery Children's Hospital in Edmonton, Alberta, Canada.
September 2006 Update
Nicholas had his Glenn done on Sept. 1/07 and was released from hospital 7 days later. He recovered very quickly this time without any antibiotics. He usually picks up some type of bug in the hospital, but this time he didn't. He is at home with his mom and dad where mom is trying desperately to get him to take food by mouth, however, with little success.
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November 2006 Update
Not to much to report except that Nicholas had his cardiology and dietary appointment. on Wednesday, November 22. All went well with cardiology. His echo was good, however they didn't get a REAL good look, cause he won't lay still for long. He wants to eat the doctor's probes.
Diet on the other hand is another issue. His dietician says "He's too small" — Nicholas is 9 months and weighs 15 lbs. He's still throwing up a lot of his formula, so we put an email out the other day for "any advice" and got lots back. My daughter has now put him on soy milk with a tablespoon of oil in it. Hopefully this will help with his throwing up. The oil is apparently to give him more calories, while the soy is just something else my daughter is trying.
All in all, everything is good with him. Starting to really move around, 2 teeth and STILL not taking to much by mouth.
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| Nicholas sitting up! |
January 2007 Update
Nicholas had a VERY good checkup on Jan. 16 and 17. His echo
was excellent and all the doctors and nurses AND dieticians were
very pleased with his progress. He now weighs 16 lbs. 3 oz. He
is sitting up as you can see from the photo, and he is starting
to eat "people" food. He eats cheerios, cookies, mac and cheese,
chicken and almost anything else my daughter puts in front of
him. He takes a VERY long time to swallow, as he only has 2
bottom teeth to chew with. He is drinking some milk also from
his sippy cup. The tube is still not ready to come out, but
hopefully soon.
My daughter was so frustrated with his feeding she finally
decided to try soy milk, but that only lasted about 3 weeks
before she took him off it again. It did not agree with him, so
she decided to put him back on his regular formula and try him
on a continuous feed at night just before Christmas and we think
this is what made him flourish. Before he was on the continuous
feed, we think he was much to full during the day to move. As
soon as she started the nighttime continuous, he started rolling
all over the house. Now she is ready for bed by 7:00, as she is
so tired from collecting him from all the places in the house
during the day that he shouldn't be in.
So, I just want to say to all you moms out there who have
feeding issues with your little ones, the day WILL come when
they do decide they want to eat. So just be patient with them
and don't push.
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| Messy! |
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November 2007 Update
It's been about 10 months since my last update on my grandson Nicholas. He is doing very well, so really not much to say. He was in Edmonton for his check up and echo on October 31 and only allowed one doctor to even touch him. They did not get an echo on him and it took 20 minutes to weigh and measure him. The Doctor said that it was actually good that he just didn't lay there quiet. At least they know he is doing ok. They want him back in 3 - 4 months and they will sedate him so they can get an echo done. He started walking on Nov. 2, 2007 at 21 months. We are all so proud of him!
