Nico's Cleft Journey
- Thread starter NicoleLJ
- Start date
Here is the picture journal of Nico's Journey to a new smile.
Calgary and area had a HUGE snow storm that we had to drive through on Sunday to get to the city for his surgery on Tuesday. We made it safely. We had one day to try and relax before he was schedule for surgery at 7am. The day before the surgery Nico was wearing the outfit his grandpa Steve sent him. Doesn't he look soo cool
We had to be there for 6:30am. The scary thing was when we went out at 5:15 to warm up the truck before leaving for the Children's Hospital we discovered the truck was dead. It was not the battery. Found out later it was some wires. THis was a truck that never failed to start. And what a day for it to happen. Couldn't figure out what was wrong before having to leave so we were able to get a ride with some friends. THought we were going to be late but we got there two minutes early. Here he is in the check in unit at the Childrens hospital. He was laughing so hard the nurses would stop to check if all was ok. He was such a happy little guy that morning.
Here are the first shots of Nico in his room. I got to go see him in the recovery room and that was so hard. He was obviously scared, trying to cry but so out of it that he could barely make a sound. All I wanted was to get him into my arms and luckily the nurses helped me to do that right away. It was all I could do to try and reasure him. And it was hard to work around the arm restraints and tubes and wires but we got it figured out.
I had been up all night holding him the night before surgery. He had seemed to know something was up. So would only sleep as long as I held him and rocked him. If I tried to put him down or stopped rocking he would wake up and I wanted him well rested for surgery. So here you can see that I was exhausted. But I was soo happy to have my little guy back in my arms
They had some problems with getting his pain management undercontrol because they could not give him any morphine or similar because he had had a bad reaction to it in the OR. So they were trying to control it with Tylonal and Ivprofen.
He always slept best on us and right now still does. Which is fine with us. His rest is the most important. So we take shifts between his medication times so that we both get sleep and both get times holding him.
More to come
Calgary and area had a HUGE snow storm that we had to drive through on Sunday to get to the city for his surgery on Tuesday. We made it safely. We had one day to try and relax before he was schedule for surgery at 7am. The day before the surgery Nico was wearing the outfit his grandpa Steve sent him. Doesn't he look soo cool
We had to be there for 6:30am. The scary thing was when we went out at 5:15 to warm up the truck before leaving for the Children's Hospital we discovered the truck was dead. It was not the battery. Found out later it was some wires. THis was a truck that never failed to start. And what a day for it to happen. Couldn't figure out what was wrong before having to leave so we were able to get a ride with some friends. THought we were going to be late but we got there two minutes early. Here he is in the check in unit at the Childrens hospital. He was laughing so hard the nurses would stop to check if all was ok. He was such a happy little guy that morning.
Here are the first shots of Nico in his room. I got to go see him in the recovery room and that was so hard. He was obviously scared, trying to cry but so out of it that he could barely make a sound. All I wanted was to get him into my arms and luckily the nurses helped me to do that right away. It was all I could do to try and reasure him. And it was hard to work around the arm restraints and tubes and wires but we got it figured out.
I had been up all night holding him the night before surgery. He had seemed to know something was up. So would only sleep as long as I held him and rocked him. If I tried to put him down or stopped rocking he would wake up and I wanted him well rested for surgery. So here you can see that I was exhausted. But I was soo happy to have my little guy back in my arms
They had some problems with getting his pain management undercontrol because they could not give him any morphine or similar because he had had a bad reaction to it in the OR. So they were trying to control it with Tylonal and Ivprofen.
He always slept best on us and right now still does. Which is fine with us. His rest is the most important. So we take shifts between his medication times so that we both get sleep and both get times holding him.
More to come
Since our truck refused to start the day of surgery and we had to get a ride in, The only way doug could get back to where we were staying was by another ride which could only come at 4pm. Nico did not handle that very well. For the first 40 minutes he was ok and then he realized his daddy was not coming back. He started screaming. This was taken after about 3 hours of screaming. If was only a 20 minute lull as he sat in a vibrating chair. The nurses and I tried everything that we could. He even had 3 doses of pain reliver but it did not stop him. Everyone was getting worried because his heart monitor was jumping consistantly to 219 which is way too high. Nothing was working. We couldn't risk narcotics to help him. I begged the nurses to allow Doug to come back because at this time visiting hours were over and usually only one parent at night could stay with the patient. They said that if it worked that he could stay. At this point Nico had been screaming for about 6 hours. He finally fell asleep and then Doug showed up just in time. Nico only slept for 30 minutes and was all prepared to start agian when Doug picked him up. Nico spent a good 20 minutes on his shoulder telling him off but not screaming. He heart rate stabalized quickly and the rest of the night and from then on Nico was just fine as long as Daddy was around when he wanted him. Can't blame the little guy. The pain, stress, fear, new people, enviroment, strange things on his arms and legs. He wanted both of us and was having nothing else.
Shortly after daddy arrived to the rescue. You can see just how puffy his eyes are from all the crying.
Both my men crashed out together. Doug had been working to get the truck fixed till he got my message to get to the hospital. Once he got the message he got there quick. He was not staying away from his little man for any reason when he was needed by him
Nico back home on Friday, this morning. We got back late last night
I love all these shots of his new smile. You can easily see that he is back to his happy self. You can also see the No Noses that he is wearing. THey are the arm restraints to keep him from touching his stitches. Another shock for us was when they weighed him before the surgery. 2 weeks prior, at his pre op appointment he had weighed in at 13.9LBS. Tuesday before surgery he weighed in at 15.3LBS. Over a pound in two weeks. LOL
As you can see in the shots his one side of his nose is no longer flat and looks soo perfect and cute. Still a little swollen. That will take a few weeks to fully go away. And his lip looks great. I will add more pictures as he heals.
Shortly after daddy arrived to the rescue. You can see just how puffy his eyes are from all the crying.
Both my men crashed out together. Doug had been working to get the truck fixed till he got my message to get to the hospital. Once he got the message he got there quick. He was not staying away from his little man for any reason when he was needed by him
Nico back home on Friday, this morning. We got back late last night
I love all these shots of his new smile. You can easily see that he is back to his happy self. You can also see the No Noses that he is wearing. THey are the arm restraints to keep him from touching his stitches. Another shock for us was when they weighed him before the surgery. 2 weeks prior, at his pre op appointment he had weighed in at 13.9LBS. Tuesday before surgery he weighed in at 15.3LBS. Over a pound in two weeks. LOL
As you can see in the shots his one side of his nose is no longer flat and looks soo perfect and cute. Still a little swollen. That will take a few weeks to fully go away. And his lip looks great. I will add more pictures as he heals.
From what I was told there are 3 different types of stitches. They are all disovable but desolve at different rates of speed. The ones on the top of his lip will disolve first. Usually about 1-2 weeks. The one inside the lip will take about 2-3 weeks to disolve and the ones on the bottom(that you can see in his mouth can take the longest at 2 1/2 to 3 1/2 weeks. This is because the tongue rubbing and the saliva could disolve the other types too fast. Don't ask me how many stitches are there. When I asked the surgeon said lots on different levels to make the lip strong enough to handle crying, laughing, smiling and feedings and such.
He only needs the arm restraints on for 2 weeks though. By then the lip is strong enough to handle him sucking on his hand and putting things in his mouth and so on. In April Nico will have a follow up appointment and at that time the surgeon will clear him for us to use vitamin E on it to help reduce any scar marks. THere are some babies on a cleft forum I am on that have had their surgey a few months ago and there is no scar at all. You can't tell at all there they ever had a cleft lip.
He only needs the arm restraints on for 2 weeks though. By then the lip is strong enough to handle him sucking on his hand and putting things in his mouth and so on. In April Nico will have a follow up appointment and at that time the surgeon will clear him for us to use vitamin E on it to help reduce any scar marks. THere are some babies on a cleft forum I am on that have had their surgey a few months ago and there is no scar at all. You can't tell at all there they ever had a cleft lip.
He is perfect in every way and he just looks so different and so handsome in such a different way since having his surgery. He is one sweet happy little guy when he isn't in pain...and that has always shown in his expressions. What a sweetie! i'm so glad everything went well other than the 6 hour freak out. I feel like once it heals, you will never know he had a cleft. I am glad you took lots of pics of him before so you can always look back and remember and even show him someday!
Thanks. Everyday he is getting to be more and more like his old self. Today is the first time we have changed his Tylonal from every 4 hours to every 5. And so far he is handling it just fine. In 2-3 days we will try every 6 hours and so on till he doesn't need it any more. I can't wait till he is out of his arm restraints. That will be a day of celebration.
Nico is improving in leaps and bounds. Here are some pictures from the past two days
Sunday:
Yesterday:
The next concern is his baby teeth coming in and how their position will be and will affect his mouth. Some babies with this type of notch have to have teeth pulled, or teeth missing or coming in at bad angles and so on. When we see Nico's cleft team in April for his check up we will be asking what the next step in all of this is. His journey is just beginning. The lip surgery was just one step.
Sunday:
Yesterday:
The next concern is his baby teeth coming in and how their position will be and will affect his mouth. Some babies with this type of notch have to have teeth pulled, or teeth missing or coming in at bad angles and so on. When we see Nico's cleft team in April for his check up we will be asking what the next step in all of this is. His journey is just beginning. The lip surgery was just one step.
Nico had his 1 month post op check up at the Childrens Hospital yesterday. It last all of 10 minutes. lol The surgeon was very happy with how his lip has healed up and how his nose looks now that the swelling is gone. They gave us the all clear to apply vitamin E or Bio Oil to his lip twice a day for the next 3 months. I asked about what to do when his teeth come in and right now they have no concerns. The surgeon did say there is most likely a chance he will have to wear braces when he is older and restated that he will have to have surgery when he is about 8 or 9 to replace the bone missing in his upper jaw. He said as his teeth come in specialists will give us advice and instructions for any issues that come from that but not to be concerned right now. And the best news of all is that he doesn't have to go back for a check up for 6 whole months. So tons of good news, his journey will be continuing for years to come and I will keep posting as things happen but all in all good news. And now for the best part: PICTURES. lol
Nico the night before in our hotel room:
"I am going to eat your fingers!"
Day of check up just prior to us leaving the hotel
Nico the night before in our hotel room:
"I am going to eat your fingers!"
Day of check up just prior to us leaving the hotel
