Christmas at the Froese's

Hope everyone had a great Christmas. Ours was wonderful and held so much more meaning this Christmas than ever before. Because of my parents house fire, Christmas with my family was held at the Froeses's. A great big thank you to Wes & Elaine for opening up your home to us all. And a big thank you to the Boissevain MB Church who provided us with more food than we could ever eat!
Now we are back home and enjoying some family time and a break from alot of doctor appts during the holidays. Noah did have his weekly weight check yesterday and he put on some Christmas weight (1ounce)! He's up to 5lbs 2oz now. At this point, any weight gain is a cause for celebration!!



Noah loves his bath, even in the kitchen sink!













Noah hooked up to his feeding pump.

Barium Study

Merry Christmas Eve! Noah's barium study went well. He did really good considering he had to be strapped down for 30 minutes as they x-rayed him. The test came back clear, so all is normal. So the next step is to try medication. Noah is now on Domperidone, which will empty out his tummy quicker. The hope is that he will have less in his stomach to throw up. We also got a feeding pump from the Home Nutrition Program. This will allow us to feed him over an hour or two to see if that helps. Right now it's all just trial and error!

3 Months

Noah is 3 months old today. Where has the time gone?? I feel like it is just moving far too quickly these days. I must remember to take more time to treasure these moments with Noah.

It was another frustrating day today. Noah had his weekly weight check and once again there has been no weight gain. He is still 5lbs 1oz. He has gained 1oz in an entire month. Normal weight gain is about 1oz a day. It is so scary to see that he is not thriving. He is going for his barium study tomorrow to check for any abnormalities that could be causing this problem. Despite all this, he is a very content, happy baby and is sleeping wonderfully at night these days!

The Little Things

What incredible treasures God has given us in the "little things". Noah gave us a few smiles the week before his g-tube surgery but we hadn't seen much since then. Yesterday Noah had his first dentist appointment and couldn't stop grinning at Dr Cross. Since then he has been smiling so much! It took a while, but I did manage to finally catch some pictures this morning. What a joy to see him reach this milestone!

Merry Christmas!!

Merry Christmas!! Hope everyone has a wonderful holiday!

Bonnet

Introducing Noah's newest fashion wear! The lip taping wasn't working so well. It was too hard on his skin and constantly wet from his reflux. So when we were in the hospital, Cindy, the cleft palate nurse found us a bonnet to try instead. This will help prepare Noah's lip for surgery. Doesn't he look cute?? We do miss playing with his hair though!







Poor guy! Don't think he enjoys wearing it very much!!

G-Tube Surgery

The big day arrived on December 7th, 2005. Noah's first surgery to insert a g-tube (gastrostomy tube for feeding). Noah's all dressed and ready to go. Little does he know what is to come! Finally we will get rid of that dreaded ng tube!!







An hour after surgery in PICU. Everything went great and Noah is happier now that the pain meds have kicked in!






On CK3 in our big crib! Noah only spent 1 night in PICU and 2 more nights on the ward. No food is allowed for 24hrs after surgery to allow the stomach to recover. Noah is VERY hungry!!










Finally we are able to feed Noah and he is much more content. After some convincing we were allowed to go home on December 10th.





Feeding with the g-tube is much nicer than the ng tube. Unfortunately his reflux has gotten much worse since the surgery and he is not gaining weight. He will go for a barium study on December 22nd to check for abnormalities that may be causing the throwing up. If the barium is normal, we will try medication to move the food through his tummy quicker. If that is not successful, it will be back to the OR for a fundoplication.

2 Months

We are settling into routine these days. Noah is 2 months old and is up to 5lbs now. We are taping his lip to encourage it to grow in the right direction and prepare his skin for surgery in March. His weight gain has been very slow but steady. Soon he will have surgery to insert a g-tube as the ng tube can't be used long term.

He has also been diagnosed with reflux and is now on Ranitidine. It doesn't stop the spitting up, but it does make him more comfortable. He has some very scary choking episodes sometimes.




We also found out that he was born with a heart defect (PDA and PFO). At his last check at the heart centre, it looks like they are correcting themselves! Praise God!!

Welcome Home Noah!

On October 17th, 2005, at 4 weeks old, Noah came home!! We were thrilled to finally be a family. He weighs 4lbs now. We are feeding him through a nasogastric tube as he is unable to suck. He has already gotten very good at pulling it out!

Kailyn and Joshua are very happy to have everyone home!!

NICU

"'For I know the plans I have for you' , declares the Lord. 'Plans to prosper you and not to harm you, plans to give you hope and a future'".

Noah spent 4 weeks in NICU at Children's Hospital. He was put on a ventilator on day 2 because of breathing difficulties. He had a bronchoscopy done and the ENT found that Noah has Pierre Robin Sequencing (meaning he
has an enlarged tongue in the back and a small lower jaw causing breathing issues). The doctors thought he would need a trach to breathe, but Noah continued to amaze them. He coughed out his tube and has been breathing on his own ever since!


We were finally able to hold Noah when he was 1 week old!


His first tub bath. He is so tiny he fit right into the bowl!!

Pregnancy & Birth

For you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made. Psalm 139:13-14

At my 20 week ultrasound we discovered that the baby boy I was carrying would be born with a cleft lip and palate. An amnio revealed that he also has an extremely rare chromosome deletion (12)(q15q21.2). We were told that our baby would probably be stillborn or have severe problems at birth. We went for biweekly fetal assessments and the baby was growing very slowly. We were prepared for the worst but praying that we would have the chance to spend some time with our son.
After a very long stressful pregnancy, on September 21st, 2005, at 39 weeks, Noah Grant John finally decided to make his appearance. He was born kicking and screaming at 8:35pm, and breathing on his own! We were thrilled! He had severe IUGR, weighing in at 3lbs 12oz and 17 inches long. He was immediately wisked off to NICU at Children's Hospital which would become his home for the next month.