Discouraging Week

Things haven't been going so well for Noah the past couple of weeks. He has not been well with some type of virus and went down to 7lbs 4oz when his fever was the highest. Thankfully he is gaining some back and is now 7lbs 9oz. His pediatrician visit on Tuesday was discouraging though. Seems that Noah's growth is falling even further off the growth charts. He has only grown 1/2 inch in length and head circumference in the past 2 months, not to mention his weight gain has been even slower. His average of 10 grams/day gain that he had been doing since he got over his surgeries has now dropped to about 3 grams/day (normal gain is 20-30 grams/day). The gagging and retching has continued to get worse and Noah moans and complains throughout most of his feeds. So it seems we may be at the limit as to how much more calories we can try to force into him. Our pediatrician is very concerned, but is out of suggestions. We are going to see our feeding specialist tomorrow to see if we have any other options. I guess only time will tell what the future holds for our little guy.

But those who wait on the Lord shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.

ISAIAH 40:31

9 Months!!

Time continues to be running away on us and I just can't seem to slow things down! Noah is nine months old, which is hard to believe when he is still so much like a newborn in many ways. He is still our little doll and the kids love taking him for rides in Joshua's new truck! He is 7lbs 9oz, so we are slowly inching our way up there! Therapies continue and we are still working on many of the same things (head control, tummy time). Noah saw the dentist last week and it seems that his one little tooth that we were so excited about will have to be pulled out. It is growing right in his cleft space and it will be in the way when the surgeon eventually does a bone graft in his gumline. So during Noah's next surgery, they will pull that tooth out. He has a tooth in the bottom that is almost ready to pop through.



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Child Dedication

On Sunday we presented Noah to the Lord in dedication. Pastor John anointed Noah with oil and blessed him. He was even able to hold Noah which is amazing since Noah doesn't tolerate being held by anyone for very long at all. After church we had a bunch of our family over for a barbeque. The day turned out really well. I thought I'd post what I read in church for his dedication.

Psalm 139:13-16 "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made: your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."
It was just over a year ago on June 2nd when we learned the devastating news that we were not having a normal, healthy child. Noah would be born with a chromosome deletion including a cleft lip and palate. In fact, he was not growing normally and would probably not even survive through the pregnancy. Some suggested it would probably be best to terminate as to not burden our family. But this child was being knit together by God in His own image. And so we chose instead to cover him in prayer. And God is so gracious.
On September 21st, our little miracle came into this world, alive, and yes, not quite perfect in the world's eyes, but absolutely beautiful to us. He has had to fight many battles already over the last nine months including ventilators, surgeries, pneumonias, failure to thrive, developmental issues, even chicken pox. He has spent many weeks in hospital. But he continues to suprise and amaze us and the medical profession, showing us over and over who is really in control. It has been difficult to see him have to struggle in so many ways. And yet, for some purpose, God has chosen to give us this gift of time with Noah. Perhaps it is to teach us to see the beauty in all of God's children. Or to slow us down to celebrate life and every milestone. Perhaps it is for a much greater purpose which we may never know this side of heaven.
Noah is a joy to parent. He is a content, joyful little guy who loves to socialize especially with Kailyn and Joshua. When he smiles, his eyes glow, and we get a little glimpse into heaven. We thank God each day for our third miracle and for blessing us so richly with this precious life.
We want to thank you all so much for your continuous prayers. And thank you to so many of you who have taken a special interest in Noah and continue to check up on us every week. It really is a blessing to us. We ask for your support as we parent Noah and raise him as a child of God. The journey ahead has many peaks and valleys. Noah has many challenges yet to come. Medically Noah's prognosis is uncertain. And as much as we desire to have control and map out the days ahead, we know that we must continue to trust in God's perfect plan. So today we place Noah into the Father's loving arms, knowing that He loves Noah even more than us, and we ask that Noah's life be used to glorify Him.
Lamentations 3:21-23
"Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness."

First Haircut

Well, I finally did it. I finally got up the nerve to give Noah his first real haircut. I've been talking about it for weeks, but just haven't had the heart to cut off his crazy hair! Today we decided it was finally time. It took a few hands but it turned out pretty cute!! And, yes it still stands straight up!!
















I'm so adorable!!!

Double Trouble!!

At 7lbs 8oz, Noah has doubled his birthweight!! Definately a milestone to celebrate! Things remain relatively status quo around here and we are enjoying our fun little guy! He continues to show progress developmentally and we rejoice with each new skill, tiny as they may be!

8 Months and 7 lbs!!

Who would have thought a year ago that we'd be at this place today! Noah is 8 months old and he has made it over the 7lb mark! He is 7lbs 1oz and 21 inches. He has a cold...again. He is just so susceptible to respiratory viruses and it is difficult to keep him healthy. But at least he is able to fight them off before they turn into anything more serious. When he is sick, the nights are rough but when he is healthy, thankfully he sleeps 12 hrs without waking.

Therapies are going well and we are seeing progress now that he's been out of hospital for a good long stretch. His head control has greatly improved and he is still working on trying to roll over. He's also working on his computer skills with daddy! Occupational therapy has started in our home as well. Speech therapy won't begin until after Noah's palate repair. Next week we will see Dr Mcpherson at the orthopedic clinic to fit Noah for a cozy seat (a special chair to help Noah practice sitting).

Give thanks to the Lord, for He is good; His love endures forever. Psalm 118:1

Swallow Study

Noah had his first swallow study yesterday with Dr. Rempel. Unfortunately he did not do well, so no oral feeding for the time being. It was quite fascinating to watch though. I fed him a tiny bit of thickened breastmilk (with barium added) on a spoon. He sat in front of the xray machine and we could watch how he swallowed on the monitor. He enjoyed it, but as we watched him trying to swallow, it was obvious that his swallow is not functional. He was able to manipulate the food with his tongue to the back of his mouth, but it took him about ten to fifteen swallows to get any of the food down his throat. He just kept swallowing and swallowing but the food just pooled at the back of his throat. Then he would take a break to breathe, causing his airway to be unprotected. So the risk of aspiration is very high, plus he would burn waaaaaay too many calories trying to get the food down. It only took a few minutes and we knew he wouldn't be able to feed orally right now. It was disappointing, but I wasn't too suprised. We will wait a few months and then do another swallow study. But likely his wide open palate is a major reason for his swallowing issues, so he may not be able to do any oral feeding until after the palate repair.
Noah's g-tube has also been causing him some pain because of granulation tissue again. Basically when his tube gets aggravated, his body tries to heal his stoma (the hole into his tummy). But because the tube is holding the stoma open, raised red tissue forms around the tube. So this morning we went to see the surgeon who applied silver nitrate to burn the excess tissue away. Yes, it sounds painful, and it is. But Noah was a trooper as always and only cried a few minutes. Hopefully the tissue will not grow back or we will have to keep having it burned off.
Despite the disappointing swallow study results, I am glad to know exactly what Noah is capable of right now, and not have to wonder if we should be doing anything different. And I am so thankful for the technology of the g-tube. It truly is Noah's lifeline and his only option right now. No swallow used to mean no life. So despite the grief and aggravation that tube causes us, thank you Lord for the g-tube!

Audiology Results

We had a very busy week of appointments. Noah had a hearing test done on Monday. Once again he failed the right side. ENT checked out his ear tubes to see if that was the problem, but they are open and working well. Since Noah was sleeping, the audiologist decided to do some diagnostic testing and two hours later, Noah was still sleeping!! So they were able to get alot of the testing done. They confirmed that Noah definately has a right hearing loss of 50 decibals and lower. He can't hear a normal speaking voice or anything lower in that ear. Thankfully, his left ear looks good. So he will have more testing done in a couple of months in the sound booth. He may need a hearing aid in the future. This combined with his very late palate repair puts him at a real disadvantage with speech and language development. Just one more hurdle for Noah to overcome!











He was also assessed at the child development clinic who will continue to follow him every 6 months. The doctor was very impressed with his alertness and social interaction which are good signs and shows that he has alot of potential, despite his huge physical delays. So his development is very uneven but at this point they couldn't really say how well they thought he'd do physically or mentally.

Noah's had a rough week battling a cold, an eye infection and g-tube infection. Poor little guy has been mostly sleeping it off but seems to be on the mend now. His weight is up to 6lbs 13oz. Adding 1 mL of volume each day seems to be working for now.

7 Months!

Hard to believe we are at the 7 month mark already. Time is passing far too quickly these days. Noah is weighing in at 6lbs 9oz. We are once again in a slump with his weight. He has lost a couple of ounces over the past week. We have had to decrease the concentration of Neocate in his breastmilk because of the constant gagging and retching through his feedings. So now we are trying to very slowly increase his volume to see if this will be better tolerated. Unfortunately it is all just trial and error right now. Times like this it is difficult not to let my mind get carried away with the "what ifs" of the future. But I know that the future is in the Lord's hands and He continues to carry us one day at a time.
Therapies are going well and Noah is now reaching for toys and using his hands more. This is a big milestone for him. He is very interactive and his head control continues to improve as well. When he is not on the pump, he is a happy little guy. His swallow study is scheduled for May 17th.

"Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle, and you will find rest for your souls. For my yoke fits perfectly, and the burden I give you is light." Matthew 11:28-30 (NLT)

A New Face

Noah's new face continues to take shape before our eyes. It's been almost 4 weeks since surgery. We still notice small changes each day and we are so pleased with the results. It's already hard to remember what he used to look like but it's been easy to fall in love all over again. We have begun to massage his scar daily to loosen up his lip and keep the scar from becoming too raised. Noah has been fighting a cold all week, but thankfully his lungs have remained clear. We have increased his breastmilk/Neocate concentration once again and he is now up to 6lbs 7oz!

We are settling into a routine here. With no surgeries scheduled for the near future, we can relax for a bit and start to focus on other issues. Socially, Noah is doing very well. He is very alert, loves to smile and laugh and is beginning to vocalize to us. Physiotherapy has started coming into our home once a month. We are working on head control, tummy time (which Noah is extremely resistant to and can only handle a few seconds) and leg exercises (his legs are tight). We are also working on deep touch since Noah does not enjoy alot of handling. Occupational therapy in our home will also start soon. Right now for speech therapy, we have to drive to Morris, but hopefully in the future, they too will come into our home. We also have a child development worker who comes in once a week to help work on all these areas. So our weeks are busy with all the therapies, plus other specialties that are involved in Noah's care (pediatrician, plastics, dentristy, ENT, feeding, orthopedics, neurology, respirology). We have never been more thankful for Canada's healthcare system!!
God has been so gracious and we thank Him each and every day that we can enjoy our little miracle.

"Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning: Great is Your faithfulness." Lamentations 3:21-23