Still Stuck

God continues to teach us patience as we pray that Noah and Nichole can come home soon. It has been over a month now and although Noah is doing really well, he is having difficulty retaining all of his feeds and therefore still needs his IV to subsidize his fluids.

There is no "pause" button on life though. Kailyn and Joshua and I miss their mom and Noah a lot and ask for prayers that we can have them home soon.

If you are reading this and wondering what you can do for us, just let me say this. God is good and has given us Noah and all the miracles done through him so far. Do not let the glory of God be overshadowed by anything we may consider hardship. Share Noah's story and more importantly God's power and goodness to those around you everyday.

Surgery #4 Complete

Noah's 4th major surgery was done yesterday to place a portacath under the skin on his shoulder into his internal jugular for easier circulatory access. The toughest part of the surgery according to the surgeon was gaining the IV access (which what the new port is there to do) to sedate Noah for the surgery itself. After an hour and many many needle sticks, they finally found one in his scalp and the rest of the surgery went smoothly. Thank you to all who have been praying for us as Nichole and Noah have been in the hospital over the past three weeks. Continue to pray that they both can be home soon.

Surgery on Monday

We have Noah's surgery for the port scheduled for Monday around 1pm. The surgery should take about 1 1/2 hours. He will go to PICU for at least one night after the surgery and then he should be able to go back to the ward on Tuesday. Please pray that all goes well. Noah has been spiking fevers again, but his chest sounds clear, so surgery should still be a go. We are really looking forward to having this port in. No more IV starts and multiple pokes every couple of days for Noah!!
We also got the results from Noah's sleep study. He is having both obstructive and central apnea episodes as well as many hypopneas. So this likely means we will go ahead with the jaw surgeries before any palate repair. We will meet with our ENT and Plastic surgeon in April to discuss the plans.

Still in Hospital

Noah is still in hospital and is awaiting surgery to put in a port for IV access. We hope to have an OR time soon. He has also been battling a chronic sinus infection that we are trying to clear up with IV antibiotics. The good news is his pneumonia is cleared up and his chest sounds great. We have switched him to a new formula called Tolerex which is living up to it's name and he is tolerating it well.

In the Hospital

Many of you check this site to be updated on Noah's wellbeing. He and Nichole have been back in the hospital since last Saturday. He is recovering from another pneumonia. Although slower than we would like, it has been an exercise in patience and faith. It has been a long week for everyone. Nichole is not feeling well but continues to stay with Noah all the time. Joshua and Kailyn are unfortunately used to the chaotic split personality of our family life and continue to be great kids to parent in these times. For me it just a matter of keeping all of the wheels turning.

Please continue to pray for Noah and our family. We all know full well the power of prayer and the goodness of God.

Brad.

Sleep Study

Wednesday night was Noah's sleep study and it went well. By the time he got hooked up to everything, he was very tired and fell right asleep. How anyone can sleep hooked up to so many things is beyond me! We did the first half of the night without oxygen and then added oxygen for the second half. We should get the official results within about a week. But it looks like he has central sleep apnea, rather than obstructive sleep apnea. (So it is his central nervous system that causes him to stop breathing, rather than his tongue obstructing his airway). This is both good and bad news. The good news is that he likely won't need any jaw surgeries since it's not his tongue causing the problem. The bad news is that this problem can't be surgically fixed and he will have to continue to use oxygen for sleeping. It was quite fascinating to watch and we learned alot about sleep.






I'm also back at work now and survived my first two shifts. Things all went really well both at work and here at home. I really enjoyed it and it was a very nice break for me! I'm looking forward to getting out once a week!
We also have a surgery date: May 11th at 12pm. Only 3 months away!!

Hospital & Home Again

Life is never dull around here! Noah just spent the last four days in hospital AGAIN!! During the night on Saturday, Noah's GJ tube came out. He has gotten very good at pulling at his dressings! When his stoma is leaking so much and all the dressings are wet, it doesn't take much for that tube to come out. Since the radiologist has to put it in and we had no way of feeding Noah, it was off to the ER on Sunday morning. He was admitted right away and an IV started, since he was already starting to get dehydrated. His stoma was also infected and he was spiking fevers, so he was started on IV antibiotics. It took until Tuesday to finally get his GJ tube back in place. He tolerated his feeds overnight, so we were able to switch to oral antibiotics and come home today. Hopefully this tube will last us a bit longer!! I was just so thankful that this didn't happen when we were in Florida that I didn't even mind that much being back in hospital! God was certainly protecting us out there! We are certainly happy to be home today though. I start work tomorrow, so hopefully my first day goes smoothly, as well as Brad's day here at home.

16 Months

Sunday marked Noah's 16th month. Once again time seems to be getting away on me. He weighed in this morning at exactly 10lbs! We are already back into the swing of things here with therapies, doctor appointments. and... oh yeah, did I mention illnesses?? Noah has already caught a cold since we got back, so hopefully it doesn't turn into anything more. He has a sleep study scheduled for February 7th if he is healthy, so we will be back in hospital overnight. Hopefully this will give us some better information about his sleep apnea and oxygen requirements.

We also met with Noah's plastic surgeon today. The plan for now is to schedule surgery for sometime in May, when Noah is about 20 months. If his sleep apnea has worsened by then, we will probably go ahead with the lower jaw surgery at that time and not do the palate surgery until a later date. But if things stay the same or improve, then we will likely not do jaw surgery. Our surgeon would repair the palate at that time instead and basically see what happens as far as his breathing issues go. He will likely spend a few days on the ventilator in PICU to let all the swelling in his airway go down. If he doesn't do well off the ventilator after a few days, then the palate would have to be opened up again to allow him to breathe. Unfortunately we won't know how things will go until then. We will meet with the surgeon again in April to decide exactly what he will be doing.

I'm also finally taking the plunge and going back to work at Women's Hospital. I'm both very nervous and also excited about it. A part of me wants to give up my nursing career and devote all my time to the kids. But another part of me wants just a small piece of my "before Noah" life back for my own sanity. So on February 1st I will go for a 12 hour orientation day (since it's been a year and a half since I've worked!!). It will be the longest I've ever been apart from Noah, but he will be with my hubby, so I'm sure they can survive a day without me. Not sure if I can handle being away for so long, but if I don't go back now, I may never do it! I am hoping to be able to pick up one shift a week, when Brad is not working. So we'll see how it all goes!!

To end on a very positive note...Noah is learning how to blow kisses!! It is the cutest thing ever!! If we blow kisses to him, he will put his hand up to his mouth in his own attempt to imitate us! It's exciting to see his mind working and progressing. Our next project will be to teach him how to wave bye-bye. We are so blessed to have this child in our lives and each day with him brings so much joy. Life is never boring around here and we wouldn't have it any other way!

Home and All Is Well!

We arrived home from our Florida trip yesterday evening. Our 2 weeks there were a wonderful much needed break for everyone. Everything went so smoothly and Noah did great! He loved the travelling and all the sights and sounds of Disneyworld. We spent the first week in Orlando (most of our days at Disneyworld and 1 day at Seaworld) which was very busy, but lots of fun with the kids. We were able to get a Guest Assistance Pass for Disney which allowed us to use Noah's stroller as a wheelchair. This gave us special seating at the shows and we were able to skip alot of the lines for the rides, which was a huge help!! The sun and warm humid air was great for Noah's health, probably the best thing we could have done for him. His RSV cleared up completely and his breathing was so good. I think we'll have to make this an annual tradition (for medicinal purposes of course!). We are still having issues with his tube sight, but that seems to always be an ongoing battle.

We spent the second week at Daytona Beach which was much more relaxing. We had some great beaching weather and Noah even got a bit of a tan on his face.

He is slowly gaining weight again and is just shy of 10lbs now (9lbs 14oz). Although the time went by far too quickly, it is good to be home again. We are so thankful that we were able to take this trip together and we thank everyone for their many prayers. For it is truly a miracle that we were able to go.

Hello Sunshine!!

We are in Florida and all is going well. Noah is feeling much better and his cough is completely gone! Must be the great humid weather we are having (27C today). We spent the day at Disney's Animal Kingdom. The kids all had a great time! Thank you for all your prayers. The flights went so smoothly and Noah slept through all 3 of them. We are looking forward to another full day tomorrow.