Monthly Archives: March 2012

Time FLIES!

Seems like just yesterday we got to bring Carson home when he was just 15 days old. Not he is 3 months!!!!!!! Without thinking of him 3 months seems like no time, but considering I have only spent 3 months with him is weird. I couldn’t imagine my life without him. I had no purpose before him. I was just going day by day, year by year. Now he makes me feel alive. Dont get me wrong I had joy and love in my life before him, but not like this! I dont understand how people dont want children. How do you not want to feel this? They sure are missing out. It is worth every sleepless night (which there havent been many), and ever struggle. Its worth not being able to take a shower when I want, or having a mess house becuase he is an arm baby. Gosh I love this little man so much and me and his daddy couldnt be more proud of him.

He is definitely my son, he is BOSSY!! If he is hungry and I dont lay him down and get situated quick enough he makes sure to scream and tell me. He is also like his daddy already! He loves to ‘talk.’ Its the cutest thing. Every morning when we wake up I stay in bed and feed him, then change him and lay him on the bed in front of me while I sit at the head board and he just talks and talks and smiles so big. It melts my heart every time, it’s and amazing way to start your day!

He is doing so great. His bath time is one of his favorite things. I give him a bath everyday. Yea, Ive heard ‘that drys our their skin” or “that is not necessary” but I dont care. We have our routine and he loves his bath so why not give him something he loves everyday? He is so cute in the bath he just stares at me as if he understands what I am saying as I narrate what I am doing and what I am washing. He smiles and kicks his feet like crazy. Its as if he knows he is making a mess and mommy has to clean it lol. But it’s so worth it to see that joy on his face.

Every day after we finally get out of bed (around 9:00) we give him his medicines. He takes 40mg of asprin every day as well as a multi-vitamin. He used to be on lasix as well but the cardiologist said he didnt need it any more on the 20th. After his meds we go pick him an outfit and then he gets a bath…after his bath we play (on his play mat, or I talk to him) and then he usually takes a one in a half to two hour nap around 1:00. Other than that thats about the only routine we have so far.

Last time we went to the doctor he was 10 pounds and 11 ounces. The cardiologists are very impressed with his weight gain especially since he is exclusively breast fed. For those of you who dont know specifics about his heart defect. He doesnt have blue blood and red blood, the blue and red are mixing right now so his heart works especially hard when he eats and burns more calories than normal so lots of heart babies have to have their milk fortified meaning they make it a higher calorie than normal.

All in all Carson is doing great! We think he is beginning to teath. He is drooling like crazy and today his little gums look inflamed. He hasnt rolled over yet (probably cause I dont put him down enough šŸ™‚ ) but he seems like he will soon. He tries to all the time.

If any of you want to know anything specific or have any questions I am an open book. Feel free to ask anything. I hope one day that this blog will help another mother or father through their journey with their heart baby or any struggle for that matter.

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Carson’s Cath Procedure.

Sorry to our followers that it has taken this long to update you.

We went in on Thursday March 8th for Carson’s cath procedure. The procedure took about 3 in a half hours. Me, Nick, and my mom (Grammy) were all there. It was a long three hours! After the procedure was over the cardiologist who performed it came to talk to us and tell us how it went. She said that the pressure of the narrowing of the aorta was at a 35% and so they ballooned it and it is now at a 5%, the perfect pressure is 0%. She said all in all the procedure went well and that we will probably have to do one more for measurements and stuff before his next open heart surgery.

When we scheduled the procedure they scheduled it as out patient so I was nervous. We live an hour away from Children’s Hospital Los Angeles and I just was hoping they would keep him over night just in case. Well, be careful what you wish for! Not only was he admitted but we stayed 5 days. They first admitted us because they checked his labs and his hemoglobin was lower than normal so they wanted to keep him to do a blood transfusion. (As soon as I am done breast feeding I will be a life time blood donor! I gave blood 6 or 7 times before but I am FAR moreĀ passionateĀ about it now.)

So they gave him the blood and everything was fine. But when I changed his diaper I noticed his foot was cold on the leg they did the procedure on. So I brought it to the attention of the nurse who brought in the cardiologist and the conclusion was that he developed a blood clot.

So he was put on heparin (a blood thinner) through IV, and every 6 hours they did a blood draw to check his clotting levels. It was HORRIBLE! I hated that they had to poke him so much. I cried with him every time. He was on heparin Friday, Saturday, and Sunday. On Sunday they did a blood draw and found his clotting level was still too low. (if the heparin dosage is too high it could cause internal bleeding so they have to monitor it closely and only increase the dosage in small amounts) So they upped his dosage again, 6 hours later they tried to take blood and couldnt get the vein. My poor baby was Ā a pinĀ cushion. His IV was in his right hand and his cath was in his left leg so they could only draw from his left arm or right leg. When they didnt get the vein I was not willing to let that lady try again so the nurse came in and I talked to her. There was a nurse there that was a “great stick” and I agreed that I would let her try but that if she didnt get it right away she wasnt allowed to ‘fish,’ so a couple hours later she tried and didnt get it. So we talked again and we agreed that I wouldnt let another person try to take blood unless it was an IV nurse. I really didnt want anyone else poking him but since they had to I only wanted someone who was the “best.” So later that evening an IV nurse came. She tried to get a vein in his hand and failed, and then tried his head and failed there too. So Nick and I lost it, we said enough is enough. If he needs to be taken off the heaprin and put on something else so be it but we are not putting him though any more of this.

So Monday morning they took him off the heparin and put in on an injection called Lovanox (I may be spelling that wrong but its a blood thinner as well). He was supposed to get the shots twice a day (every 12 hours) for a week. So the plan was that he would be there till at least Tuesday and on Tuesday or Wednesday we were supposed to have a chance to go home and I was supposed to give the injections. I was NOT excited about having to hurt my child but I was so ready to leave.

They said that if the clot didnt dissolve that it could cause less blood flow to his leg and cause his leg to be a tad bit shorter than the other. With his heart defect he already has enough to go through I didnt want him to have to go through have custom shoes orĀ insertsĀ made.

Tuesday came and my mom was planning to come visit regardless of it we were discharged or not. She got there and not long after the cardiologist came in. The cardiologist started assessing Carson and as soon as she touched his foot she got excited. It was WARM! not only was it warm but his pulse was back. Even I could feel it and I never even knew what to look for before going through all this. So we got to go home on Tuesday March 13th without any injections! I was so excited and so was Nick. March 13th marked 2 years of him and I being together and it was such a special gift to get to come home and spend it as a family.

To be honest I had a hard time emotionally being at the hospital this time. Carson seemed more blue than what his ‘normal to me’ was. Later it was explained to me that because of the narrowing of his aorta it caused more blood to go to his lungs, so when they fixed his narrowing, a more normal amount of blood was going to his lungs and so he was bluer than what I thought his normal was but according to the cardiologists its very normal for his condition and stage.

Its been two weeks that he has been home and he is doing great he is back to his normal self.

 

Cardiologist Appt Feb. 29th, 2012

This week has been a little crazy. Carson had his 2 month appointment with pediatrician on Tuesday. He got his shots, and it killed me. He was dead asleep when she poked him the first time and that is NO way to be woken up. He screamed and I cried with him. My mom, who went with us told her “well that’s not a fun job” on the lady replied “actually I like giving shots, I like drawing blood even more.” So she likes hurting babies and kids? Sad.

Tuesday after his shots was horrible for all of us. Poor Carson’s legs hurt so bad (he got two shots in his right legs and one in his left). Every time he moved his leg he would scream because it hurt and when he is upset he kicks his legs. It was horrible. I gave him tylenol but it only lasted an hour and the other three he spent screaming. I thought about canceling his appointment for the cardiologist on Wednesday because of his discomfort but I had a gut feeling we needed to go.

So Wednesday afternoon my gut feeling was validated. They took his stats and an x-ray and all were great. Then they did an echo (ultrasound of his heard). After that was done we waited for his doctor to come in. Once she came in she talked about how impressed she was with his weight gain and went over all his stats and how overall impressed she was. Then she brought up the echo. Apparently they found that his aorta has narrowed. Its most likely due to scare tissue. So they are going to due a procedure this Thursday where they go in through his groin area and put a camera so they can see how narrowed the aorta really is. Likely they will have to put a balloon in there and blow it up and cath it. If that is unsuccessful then he will have open heart surgery to fix it.

If all my readers would please pray the cath is successful that would be awesome. He faces another surgery when he is 8-12 months to fix his VSD so when he has that surgery they will replace his shunt, fix his aorta, and patch his VSD.

Wednesday was hard. I feel like my son has gone through enough and still faces up hill battles, but I have to remember how lucky I am to have him. I remind myself that I am his mommy for a reason and we are going to get through this together.