Friday, December 29, 2006
Thursday, December 28, 2006
I still can't quite believe we are home. I had gotten so used to routine at the hospital that it feels quite strange to be away from all of that. We will miss so many of the wonderful people that become a large part of our lives over the last 12 weeks. We were so blessed by the wonderful staff on CH4 and CH5, and Noah came home with a truckload of gifts from those who fell in love with him. We also met some amazing children and parents on the wards, and being in hospital together is an instant bonding experience. My heart is with the families who couldn't take their child home for Christmas.
On the medical side of things...Noah now has an NG tube that has been threaded from his stomach into his jejunum (intestine) so that his food bypasses the stomach and goes directly into his jejunum. Our surgeon came up with this solution when we discovered that Noah is too small for any of the GJ tubes out there. Unfortunately, these tubes don't have a balloon to hold them in place, so we use an epidural catheter holder and tape. We have to be very careful that it doesn't get pulled out or it is back to the ER. The tube has to be inserted by a radiologist under flouroscopy. We are still having constant problems with leakage around the tubes, making his stoma and surrounding skin very red and uncomfortable. Now we are using Viaderm, Sulcrate and Aquacel to try to get things healed up. I am concerned that it may be infected, (which would explain the fevers) so we are off to the doctor this afternoon to have it checked out.
Noah feeds continuously for 20 hours a day and gets 4 hours off in the afternoon. He also has an NG tube that goes into his stoma to his stomach to drain out the bile that still backs up. This tube is hooked up to a mini hemovac (Jackson Pratt) that provides a continuous low suction to keep his stomach completely empty. Funny how we get so much enjoyment from filling our stomachs, but for Noah, he is happiest when his stomach is completely empty. We then refeed some of the bile back into his jejunem every 2 hours during the day.
Noah gets so much bile backing up that he is only able to tolerate being refed 6 mLs at a time, and the rest we throw away. Bile contains important electrolytes and so we have to supplement him with salt water to make up for the electrolytes he is losing. We use the salt water whenever we flush out his tube (after meds and refeeds). He will need regular bloodwork to monitor his electrolytes. I've included pictures of some of our hospital highlights and pictures of Noah at his best and his worst over the past 2 weeks.
We can't even begin to thank everyone enough for all the visits, meals, cards, child care and prayers. So many of you have blessed us and continue to bless us more than you will ever know. We are planning a family trip along with Granny & Grandpa to Disneyworld in less than 2 weeks if Noah is well. Please pray for health so that we will be able to take this much needed break!!!!
Tuesday, December 26, 2006
Merry Christmas!! It has been wonderful to spend the past few days with family and watch our children enjoy their gifts. We've stuffed ourselves with too much food and spent our days being just plain lazy. Who could ask for more? It felt a bit strange to have our family come to us this year, but nice not to have to travel anywhere. Please continue to pray for health as Noah continues to have fevers and pain from his stoma. We will see our pediatrician tomorrow and hopefully we can figure out what is going on.
Sunday, December 24, 2006
We came home yesterday and he is doing very well. Other than some weight loss from the past 2 weeks (down to 9lbs 7oz) and a cough, he is looking great! His GJ tube is back in place and he's tolerating his feeds well. It' been a long and difficult time, but God has sustained us. We are so thankful to be home for Christmas and we are looking forward to celebrating Christ's birth together as a family.
Friday, December 22, 2006
Our family would like to wish all of our friends, family, and each one thinking of us during this difficult time all the best this Christmas. May you enjoy each person and moment this week to their fullest.
Sunday, December 17, 2006
But he has now developed an issue with his stoma site. It has been leaking so much that the skin is breaking down and causing lots of pain. Last night he required morphine to be able to sleep. And to make matters worse, because of all the leakage, the tape holding Noah's GJ tube came loose and his tube has slipped out of place. So tomorrow he will have the tube reinserted under floroscopy.
So no plans for when Noah will be discharged yet. Please keep the prayers coming!!!!!!
Monday, December 11, 2006
Friday, December 08, 2006
Sunday, November 26, 2006
Feeding is going well though despite all the infections and Noah is still gaining! The GJ tube seems to be the answer we've been looking for and he's made it over the 10lb mark!!! So things are moving in the right direction.
Wednesday, November 22, 2006
Tuesday, November 14, 2006
Thursday, November 09, 2006
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!)
Saturday, November 04, 2006
Saturday, October 28, 2006
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.
Wednesday, October 11, 2006
Monday, September 25, 2006
Wednesday, September 20, 2006
Wednesday, August 23, 2006
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!
Wednesday, August 16, 2006
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.
Wednesday, August 09, 2006
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!
Sunday, August 06, 2006
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!!
Friday, July 14, 2006
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!
Saturday, July 08, 2006
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.
Thursday, July 06, 2006
Tuesday, June 20, 2006
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.
Monday, June 19, 2006
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.
"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."
Saturday, June 17, 2006
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!!!
Wednesday, June 14, 2006
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!
Tuesday, May 23, 2006
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).
Thursday, May 18, 2006
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!
Thursday, May 11, 2006
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.
Monday, April 24, 2006
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)
Saturday, April 08, 2006
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.