Hospital Week 6

Yes, yet another hospital post! We are still here, but we are now able to be home from 1-9pm each day. It is so wonderful to be able to come home and spend time with the family. Kailyn & Joshua are quite thrilled about this. It makes our time at the hospital much more bearable. Noah is doing quite well. We had to increase his TPN calories again because he wasn't gaining weight. So now with all the extra calories on board, he is porking out again at a whopping 9lbs 3oz!!! We are at 20ml/hr with his feeds, although we have had lots of refluxing today. Looks like it will be another week or two before we are out of there completely.

Noah is full of energy and joy and he is looking so good. His smiles and giggles have won the hearts of many at the hospital. It seems that many of our health care providers have come across this blog in their search for information on 12q deletion. It has been neat to share more of Noah with these people who have become like family over the past weeks. I've posted a few pictures of our hospital days, including Noah in his halloween bumblebee costume. He was the cutest patient! (Okay, so perhaps I'm a bit biased!)

Hospital Week 5

Noah is doing very well and things are going better this time around with the gj tube. We are up to about 15cc/hr with his feeds, and the TPN is slowly being decreased. He now only has to be on 18hrs of TPN, so we have 6 hours off each day where we can leave the hospital. It's wonderful to be able to get home, even if it is just for the evening!! Noah is still refluxing a bit, so we are increasing his feeds very very slowly. It will likely take close to another 2 weeks to get him completely off the TPN and on to his full feeds (25cc/hr) and out of the hospital. The bile is once again backing up into his stomach, but the new stomach tube we have is keeping it drained better. We are also hooking him up to the Gomco (low suction) at night so that his stomach is constantly being sucked clean. Thank you to all of you for the prayers, meals, cards, babysitting and goodies! We really appreciate all of the help!!

Still in Hospital!

I have been finding it quite difficult to keep this blog updated lately. Noah is still in hospital...almost 4 weeks now. The team meeting didn't leave us with any great answers. The surgical options sound dismal (the risks are just too high for Noah right now). Our surgeon recommended taking a less aggressive approach, but no one really had any great solution. It was discouraging but it did make our decision regarding surgery easier.
Noah has been on TPN (total paranteral nutrition) for the past 2 1/2 weeks (he is being fed directly into his veins through a central line). It has done absolute wonders for Noah. He has put on an amazing amount of weight (8lbs 10oz) and his energy is unbelievable. He really is a different baby! Unfortunately, we can't do TPN much longer as his liver functions are rapidly climbing (a warning sign that we could end up damaging his liver). So it seems that we are back to where we started. We decided to give jejunum feeding one more try, so yesterday the gj tube was reinserted, along with another tube to try to keep the bile drained off his stomach. The hope is that Noah will have nothing in his stomach to reflux. If this doesn't work, we will probabl have to go back to g-tube feeding and just take Noah home. This will mean taking our chances with aspirations, which is certainly not a great situation, but it may be the only option we have left.

In Hospital

Just a very quick update. Noah is back in hospital. It's been just over a week now. He went in on Monday for another aspiration pneumonia. He was doing better and then yesterday he had a really bad aspiration. He refluxed, turned blue and went unconcious. His respiratory status was very unstable and there was talk about having to intubate again. After a few hours he started to settle down and today he is stable. He now has a new pneumonia from this aspiration and had a central line placed to give him TPN for now. Everyone is at a loss as to what to do for him to stop these aspirations. We had a team meeting planned for Friday and hopefully we can come up with a longer term solution for feeding and keeping his airway safe. I am living at the hospital these days, but will update again when I have a chance.

Party Time!

Noah had his big birthday bash yesterday and it was an excellent day! It was a full house and we appreciate all of you who came by! The weather was beautiful and we thank the Lord that Noah was feeling much better. He was a bit overwhelmed by it all, but did especially enjoy playing with his cake, even if he couldn't eat it. He worked on squishing it with intense concentration! He was pretty partied out by evening and wasn't too interested in his gifts. Kailyn & Joshua certainly had fun opening them all! But this morning he had a great time enjoying his balloons and some of his new toys.

HAPPY 1st BIRTHDAY!!

~~A HAPPY HAPPY BIRTHDAY to our dear son Noah!!!!!!!~~

Who would have though that we would have come this far and still have so far to go! A year ago we didn't know if Noah would live to see one day. Now it has already been one year. We are so blessed! We have been given this incredible miracle and God has been so gracious to us. We have recieved more time with Noah than many others ever have with their precious angels. When the days are difficult and there seems to be no progress the Lord gently reminds me of how this day could have been a day of grief rather than celebration. And so today we celebrate this beautiful life God has created.

We recieved a huge package in the mail for Noah from a group of ladies I have met over the internet. So this morning Noah had a great time opening the gifts, with some help from Kailyn & Joshua of course! We were so touched that people we've never even met would care so much about our son. So thank you so much my fellow buttercups!! I hope that one day Noah will be able to meet some of his "aunties"!!

Unfortunately Noah has not been well for the past week and has developed pneumonia again. Likely it is because he is aspirating again, since his fundo is coming loose. Fortunately it seems to be a mild case. He started antibiotics yesterday and is already feeling much better today. He weighs in today at 7lbs 8oz, and measures 22 1/2 inches, not much bigger than the average newborn. He is still in newborn diapers and clothes, in fact, the outfit he is wearing today is still a preemie size. He has head control for about 2 minutes at a time now, and is SO close to rolling onto his tummy. He's got 5 teeth, most of which we should be able to keep. We are still waiting to hear about the new tube. We may end up putting in a j-tube rather than the gj-tube. (The difference would be that we would keep the g-tube and actually put in a seperate tube into the intestines). There are less risks longer term, but that would mean another surgery, which of course has it's own set of risks. So right now no one is sure which route to go and we are in limbo.

Noah's party is still on for Sunday from 3:30-6pm at our place in La Salle (hopefully our window of time when Noah won't be eating or sleeping). We are praying for some nice weather! I never got invitations out, but we'd love to have anyone drop by who's grown to love our little man!

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!!