11 Months

Ok, I am convinced something is wrong with my calendar. It says that Noah is 11 months and I just can't believe that so much time has passed already. I need to figure out a way to slow things down!

We have been quite busy here lately getting used to all of Noah's new toys (yes, I am convinced Noah has more fun playing with his tubing and syringes than anything else). Dealing with the oxygen is still a huge hassle and I'm feeling much more tied down these days. Noah is not nearly as portable anymore and I have very short windows of time to take him out without his pump and oxygen hooked up. Yes, we have portable equipment, but by the time I pack all his stuff up...well, it's just not worth the hassle. Thankfully, Brad is not busy right now with work, but once September hits, things are going to get a bit crazy around here. We just had a home study done to assess how much home care we should be getting. Right now we get about 4 hours a week, but we are eligible to recieve more if they can find nurses for us. Personally, I don't really want someone coming in more often to take care of Noah (unless I go back to work). I'd rather be the one taking care of him have someone to do the housework and laundry. So I'm hoping we can work out something soon as I am feeling a bit overwhelmed these days.

Noah's had some weight gain since we started the oxygen!! He is 7lbs 9oz and 22 1/2 inches. So we are back to the weigh he was 2 months ago. His eyes are so much brighter and he is sleeping way less during the day. That oxygen is amazing stuff! The things we take for granted... Unfortunately, the Omeprazole hasn't done anything for the reflux, so we will still probably have to try the gj-tube temporarily. We are still waiting for an appointment with radiology for that to be done.

Noah's reached another exciting milestone! He is officially rolling from his tummy to his back! He absolutely hates being on his tummy, so I think he just gets mad enough that he is able to flip himself over. He is still working on getting from his back to his tummy. He gets almost all the way over, but can't seem to get his arm out of the way. His head control has improved alot too. It still needs work, but we are getting there. And we've been free from hospital stays for 5 months now! God is good.

We are planning a party for Noah on Sunday, September 24 here in La Salle. We will try to send out some invitations, but I want this to be an open invitation for anyone who would like to celebrate Noah's first year with us. We would love to have you there!

Refluxing Again!

Well, we finally got our home oxygen set up and now we are all trying to get used to it. The oxygen concentrator which is the machine he will be hooked up to at home is pretty loud and it will take some getting used to since Noah sleeps in our room. We also got some portable oxygen tanks for when we are away from home for naps. So our room is looking and sounding more and more like a hospital!

Now getting the nasal prongs on Noah last night was quite the battle! I basically had to pin Noah down as he screamed. We are still experimenting with how to keep the prongs in his nose as he hates it and likes to yank it right out. Looks like we will have to go back to having tape on his face. Our home care nurse is coming today to help us figure out the best way to do this. Once he was sleeping, it didn't seem to bother him anymore and we had a good night last night. I only had to get up to suction him once and then he slept in this morning! That oxygen must be good stuff!! So today we will just have to work on getting him to wear it for his naps. I'm sure once he gets used to it, it won't be a big deal. When I weighed Noah today, he was up one ounce from yesterday (7lbs 5oz). It is probably premature, but I am really hoping the oxygen and better sleeping will improve his growth!
The other issue we are dealing with is that Noah's fundo is loosening and he is refluxing again. We started a new medication today called omeprazole (Losec Mups) in place of the ranitidine he was on before. So we will see if this makes a difference. If not, Noah will likely have a temporary gj-tube placed. This would replace his g-tube. A radiologist would thread a tube through his stoma into his jejunum (part of the intestines). This is not a surgical procedure, but would just be done in the xray room. So basically we would bypass his tummy for a while. This is a short term solution, maybe for a couple of months or so, and not tolerated well by everyone, so it would be a trial. But hopefully we could control the reflux this way since there won't be food in his tummy to throw up and aspirate, get better absorbtion directly into the intestine, and get some weight gain happening.

Sleep Apnea

It was a long sleepless night last night. Noah was on the monitor at home and we were awoken by the alarm going off many times during the night. His oxygen levels would go down to the low 80's, sometimes even 70's a few times in a row, his heart rate would go up, and then he would stabilize for about 45 minutes or so. Then the cycle would start all over again throughout the night. So this morning I brought the monitor back in so the doctors could go over the data. There was no doubt about it (his tracing was a textbook case), Noah has severe obstructive sleep apnea. What this means is that as he sleeps, something is obstructing his airway (likely the back of his tongue). His blood gas that was taken yesterday at his appointment also showed an increase in CO2 levels in his blood. The respirologist said that if this continued to go untreated, Noah would go into heart failure, as it is putting alot of strain on his heart each night. So he will now have to be on oxygen by nasal prongs while sleeping. We are just waiting for home care to come in and set it up for us.
While the oxygen should help, it will not be enough, so the respirologist will discuss the findings with our plastic surgeon and ENT to see what type of surgical intervention they would recommend. Likely it will mean that he will need the mandibular extraction (lower jaw) surgery in the very near future. This will have to be done before we can think about doing the palate repair, as obviously that will obstruct his airway even more.
I am relieved that this problem is finally being addressed and that we will have suction and oxygen in place. Guess it's the nurse in me that feels much more secure with these things around! And the good news is that we won't have to go into hospital overnight to do a sleep study as these results were very clear. It's disappointing to hear that another surgery is needed though. I just pray that Noah's little body will be able to handle another huge strain!

British Columbia Trip

We just returned from our BC trip and it was wonderful! Everything went really well, thanks to many prayers! All the kids did great with all the driving, Noah did the best of all. We barely ever heard a peep out of him! We did lots of stopping which also helped. We got to spend time with friends Dave, Cheryl, Fiona and Avery in Calgary and Banff. We were even able to get Noah to spend some time in the baby carrier. After a bit of getting used to it, he actually enjoyed it and ended up falling asleep on our little hike to Johnstons Canyon.






In Abbotsford we spent time with family Erik, Jamie & cousin Micah, who thoroughly enjoyed poking and kissing "baby". We made it out to Vancouver Island as well. The kids loved the ferry ride and the weather was beautiful. We beached lots, especially enjoying the amazing warm water at Rathtrevor beach, and the giant waves at Long Beach. Even Noah got some colour and he wasn't even in the sun! It was great to be away from doctors appointments and therapies! What a precious gift this time has been.







No weight gain for Noah. He continues to hover around 7lbs 3oz and 7lbs 4oz. We are still working up the new polycose/neocate concentration. We are up to .91 Kcals now and Noah is tolerating it well, just not gaining. He is 10 months now and is starting to acting like a 10 month old in many ways. He gets very mad when his toys are taken away and pouts when mommy leaves his sight. He has rolled from back to tummy once and tummy to back once. I can't seem to get him to do it again though! He has cut another 2 teeth, bringing the total up to 3 (another top front tooth and a bottom front tooth). His head control is certainly improving as well.
Noah is refluxing again, so his fundo must be loosening a bit. We will likely need to change his medication which we've been talking about for a while. He is also having alot more trouble with swallowing his secretions. He has begun to have daily choking episodes that can be scary and we've been using a syringe to try to suction him out. We are meeting with respiratory on Tuesday so we will discuss getting a suction machine to have at home. Back to the daily grind!!

Polycose & Neocate

Well, we had to go back to the Neocate formula. The Vivonex that we tried over the weekend did not help at all. So we are now mixing the Neocate as a regular strength formula (.67Kcal/mL). He is doing much better on this. The retching has stopped and he is no longer complaining through his feeds which is so much better for everyone! He is still losing weight though and is down to 7lbs 3oz. So our new plan is to very slowly try concentrating his formula with Polycose, which is basically glucose to add calories. Hopefully this will be easier for him to digest. Today we will increase to .70Kcal/mL and over the next few weeks, hopefully work our way up to 1.0Kcal/mL if he tolerates it (which was the concentration he was slowly gaining on with the breastmilk).
We have decided to put the Barium x-ray on hold as things have improved so we likely wouldn't find anything. We have a trip planned to BC to visit my sister and her family next week, so thankfully things are settling down and we should be able to go! We will have to drag the scale along, and any adjustments we have to make we can do over the phone. We are very much looking forward to getting away for awhile!

Feeding Clinic Appt

We went to see Dr Rempel on Friday to discuss a new plan for Noah. He seems to be over his virus, but the retching continues through his tube feeds. As far as the lack of growth, the doctor didn't have anything else to offer. Since Noah is getting plenty more calories than he should need and it still hasn't helped, and he is so uncomfortable through his feeds, it looks like he just may not be capable of growing. We decided that having him happy and comfortable is most important to us at this point. So to address all the retching, we are trialing a new formula over the weekend called Vivonex. It is also an elemental amino acid formula, but it is meat based (it is actual baby veal ground up with a multivitamin added, and it smells as lovely as it sounds!). Unfortunately all it is doing is giving Noah diarrhea and the retching is still just as bad. So if no improvement by tomorrow, we will go back to the Neocate. However, we will mix it as a regular .67 kcal formula rather than the concentrated 1.03 kcal we were mixing it to before. Hopefully this will be better tolerated. Unfortunately, of course, he will then be getting less calories than he does now, but it looks like our only option for now. If no formula changes work, we will look at changing his reflux meds and see if that helps.
We also decided it might be helpful to see Endocrinology to have them follow his growth and keep an eye on his hormone levels. And we will have another barium xray done soon to make sure that all looks okay with Noah's fundo as sometimes they can slip causing problems. It's all a puzzle right now and a lot of trial and error but hopefully we can figure out how to make feeding more pleasant for everyone.

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!!!