Jonah shortly after surgery (May, 2006)

Jonah finally has PINK toes!

Jumping Jonah! 8 Weeks Post-Op

Jonah, 7 months

Jonah after his first heart cath (3 months)

Jonah and his big sister (2.5 months)

Jonah was born September 16, 2005. My husband, daughter and myself were very excited to welcome baby number two into the world, as we had recently moved from the city to my husband?s home town to be closer to family. My second pregnancy was very much the same as my first. Terrible morning sickness, and not much weight gain didn?t worry me as my daughter was born strong and healthy under the same circumstances.

My labour went quickly, and Jonah was born at 5:17pm without any time for painkillers! When they said, ?It?s a Boy?, my husband?s face lit up the room. Aside from being a little blue, our new baby boy hollered just as we expected him to. We were discharged the following morning as I didn?t want to spend another night in a stuffy room.

Jonah developed a nice case of newborn jaundice in his first week at home. He has spells of nasal regurgitation after breastfeeding. I was a bit concerned about his ability to swallow and I spoke with my family doctor. She suggested propping him up after feeds. I ending up moving into the spare room with him so I could sleep with him in a cradled and propped position.

When Jonah was about eight days old, alarms started going off because he hadn?t managed to gain any weight. It was suggested that I give up nursing and switch to formula to clear the jaundice, but I refused to believe that that could be any better for him. We brought out the hand pump, and I carefully monitored how much he was getting. He gained three ounces the following week and his jaundice cleared.

At approximately two and a half weeks old, Jonah caught a nasty cold from his big sister. I was in shock. Breastfed babies are supposed to have elevated immune systems! After three visits to the local clinic, we found out why Jonah wasn?t able to fight off infections.

Oct 12, 2005 ? Oct 16, 2005

Jonah was flown to Children?s Hospital in Vancouver after discovering that he had a heart murmur and low oxygen saturations (80 ? 85%). Jonah managed to put on a little weight during our stay, thanks to modern breast pumps and bottles! He was diagnosed with Tetralogy of Fallot with Pulmonary Atresia. Further testing was done for the chromosome deletion (FISH Test). It was decided that he was stable enough to continue growing at home and we were released. We were advised that he would require surgery to repair his heart defect sometime in the near future.

Oct 18, 2006

Jonah developed a left Inguinal hernia. Apparently this is very common in babies with DiGeorge Syndrome.

Nov 7, 2005

General Surgery Consult for Jonah?s hernia followed by a visit to Dr. Duncan (Jonah?s cardiologist). It was confirmed that Jonah did in fact have DiGeorge Syndrome. Shane and I were referred to Genetic Testing and Counseling.

Dec 5, 2005

Jonah?s first heart cath. He did well and they were able to map out his little heart. I couldn?t believe how swollen he was after the procedure! Poor little guy.

Dec 7, 2005

Jonah had his hernia repaired today. They didn?t want to do it because they didn?t have an ICU bed available but I stomped my feet and shed a few tears. Luckily they decided to talk it over with the on-call cardiologist, Dr. Human and he advised them that Jonah did not need to stay in ICU. We settled for a bed on 3M, the children?s cardiac ward for the night. What a relief! Jonah?s intestines are where they should be!

Dec 22, 2005

Jonah?s Oxygen Saturations are a little low (73%). He had a chest X-ray and we decided to put him on a course of antibiotics. An oxygen concentrator was ordered and Jonah has been introduced to nasal prongs! He hasn?t tolerated it well.

Dec 27, 2005

Jonah is just over three months now. He is off oxygen as his levels have risen to 85% again. He?s 10lbs 13oz.!!! He?s doing very well for a ?Heart? baby.

Feb 9, 2006

We visited Kelowna today to see Dr. McGillivray (Medical Genetics). She looked Jonah over and was very impressed with how he was doing. She gave Shane and I requisitions for blood work so we could find out where this deletion came from. Apparently there?s only a 6% chance that he inherited it from one of us.

Feb 23, 2006

Cardiac Clinic in Kelowna. We saw Mary Spencer (Nurse) and Dr. Human. The highest O2 saturation we could get on you was 62%. That really freaked me out. We returned home to get back on oxygen. He tolerated it well for a couple days then he figured out how to pull the tubing away from his face. After a few days the saturations slowly climbed back into the 80?s.

Mar 15, 2006

Our genetic testing came back. Neither Shane nor myself have the deletion. We are so thankful that Aza will not be affected by this. Yeah!

Mar 31, 2006

We drove to Vancouver to visit Shane. He was working on a pilot called ?Split Decision?. We were excited about going to the city for a pleasure visit. Unfortunately we ended up in Emergency on Friday night as Jonah developed a nasty cold and fever of 103 degrees. A chest x-ray was taken and he showed an upper respiratory infection. He tested negative for RSV. He was admitted and placed under a tent that was being pumped with 15 liters of humidified oxygen. Jonah was in hospital for four days. He was released after his saturations began to climb again.

May 11, 2006

Seven days left at home before we leave. We are feeling so many mixed emotions. I?m trying to bank all of our cuddles and hugs for the days when I?m unable to hold him.

Jonah is an amazing little guy. Each time we have to visit Children?s Hospital, we realize just how lucky we are to have him at home with us. He?s had so little medical intervention that some medical professionals can hardly believe it. Most babies with TOF have to have some kind of temporary surgery within weeks of their birth. Jonah is scheduled for unifocalization on May 24, 2006. Dr. Hanley will be performing his procedure in Stanford.

May 22, 2006

It?s all so surreal. I can?t believe that we are here, in California, and that it all begins tomorrow with Jonah's heart-cath. He seems so perfect in every way. He?s so strong. Rolling everywhere, trying to figure out how to go forward on his belly, smiling every time I put him in the sling. Like a little Kangaroo Joey, he loves being carried. We will be taking him to Lucille Packard at 6:30am tomorrow morning. They will keep him over night as his Unifocalization surgery is booked for first thing in the morning on May 24th.

May 23, 2006

Jonah?s Heart-cath is over?. It was a success, however there was a little scare after his chest x-ray. They thought that his left lung had partially collapsed. Good news though? another chest x-ray showed that it was just a little air in his tummy. I can?t even begin to explain how crazy and scary this all is. We went through the steps of the Unifocalization procedure today with the surgeon?s assistant and it was intense. Tonight will be difficult as Jonah is in intermediate care and I am not allowed to sleep near him. Looking forward sitting up at his side all night long.

May 24, 2006

What a day! Jonah went into surgery at 7:20am and we got to speak with Dr. Frank Hanley at 9:00am just before he joined his team. It was a day of mixed emotions. It?s really hard when you imagine what your child is going through while you sip another Starbucks coffee. We didn?t expect him to be done in the O.R. Until after 5p.m., however at 3:30p.m. While we were trying to rest in a parents lounge we got the page to meet Dr. Hanley. We jumped out of our seats and made our way to the waiting area as quickly as possible. Dr. Hanley greeted us with a smile and was happy to announce that Jonah had done exceptionally well in surgery. The team was able to do a complete repair and Jonah tolerated the invasion like a star. His O2 Sats are between 98-100%.  We had to wait another hour and a half before we could see him in the CVICU. He looked better than I expected? a little swollen, many tubes and wires, but still our little guy. We?re so grateful to Dr. Hanley and his team. Thanks to them Jonah only needed one surgery for repair. (He will need more surgeries throughout his growing years to replace his donated Pulmonary Valve, as the one he now has will not grow with him.)

June 4, 2006

Jonah has been amazing! Today is the date of his release. Other than not gaining weight, he has pulled through like a real star! His breathing tube was pulled on May 29th, he was transferred out of the CVICU on June 1, 2006. We prepared ourselves for a really long haul, and we have been blessed with a VERY speedy recovery! Jonah is currently on Loritab for pain, Zantac, to help his upset tummy and Lasix, for water retention. I'll be taking him off the Zantac soon, as he seems to be breastfeeding better every day. He has continually lost weight so we're hoping that he'll do better after being released. Jonah was 16lbs, 8oz when he arrived at Lucille Packard and he is currently 14Lbs, 10oz. I guess that means we're back to size 2 diapers!

July 2006 - Update...

Jonah is incredible! He's gained 2 pounds since our last follow-up with his cardiologist in Vancouver. He's a little on the short side, but apparently that is not uncommon for DiGeorge kids. He's such a happy baby. Aside from the scar on his chest, one would never know that he's been through so much. He's rolling all over, crawling backwards and he's even started chatting with us using the "mum mamama" sounds. We are overjoyed by his progress and we are so grateful that Dr. Hanley and his amazing team were able to help our son. He's our little gift and we enjoy him so much more now than we ever would have had we not gone through this experience.

We are so hopeful that our little guy will do well. Reading stories from other members of the Congenital Heart Network has helped us immensely!