Not home yet

I really  thought we were going home when I woke up yesterday morning! Alexander's night had gone great with no hiccups and the swelling in his face was gone by the time he woke up. Everything was great until he went for his chest x-ray.  As we were leaving the x-ray room, Alexander's oxygen saturations were in the 50's. After hanging an oxygen mask around his neck for him to breath several times and changing out his pulse Ox cable (a bad cable can give a bad reading), it was decided that he needed the nasal cannula to be put on.  After the cannula went on, it took him until this evening for his oxygen levels to finally be in his normal 75-80 range. The doctors and nurses were  unsure of why his levels dropped, as each one has a different opinions. I suggested for blood to be drawn to rule our anemia, which was done last night. I haven't heard the results, so i assume all looked good. Overall, it was a very frustrating day for  our  Superman. With having to stay in the hospital and be limited to what he  he could do (ie crawling). We managed to check out the playroom on the floor  with a potable oxygen tank- that seemed to help his mood.

Last night was another uneventful night, so  hopefully we get to go home this today! <3

No surgery needed! Hooray!

Wow! So far so good! So couple things: Alexander's procedure was a success. No surgery was needed! When Alexander went into the cath lab, his cardiologist was able  to balloon open his atrial septum to allow more blood flow to his upper body and lungs, and getting rid of the extra scar tissue. Alexander also behaved himself coming out of anesthesia. There was a huge weight lifted off my shoulders when I walked into the recovery room seeing my Superman awake and signing "all done" and requesting for "crackers" via sign language! :) tears of joy when I saw him!

Currently, Alexander is still in the hospital and will be for the rest of the night, just for observation.  We've had a couple of moments with low oxygen saturations and are hoping the low saturations are pain and swelling related. He's just received some medication for the pain and is now sleeping in his daddy's arms. Alexander will get a chest x-ray in the morning to make sure all looks good and if it does, we will be on our way home!

The night could still be a long one for us as his sleep schedule is a mess, the machines in the room keep beeping (his and his roommates) and the fabulous oh-so-comfortable pull out couches we will be sleeping on <insert sarcasm>.

So for now we are hoping for an uneventful night, for our boy to get lots of rest throughout the night and be back to his old self by the morning! Thank you for all of the  prayers and positive thoughts. Wes and I are so grateful for all of you! <3

Tomorrow morning will be an emotional one

Tomorrow morning at 8 am Alexander is scheduled for his heart cath. Tomorrow morning we have to be at CHLA by 6 am. Tomorrow morning I will be an emotional a mess, especially when I have to hand over my crying 15-month old to the doctors and then walk away.  Am I ready for that? NO!

Many have asked how am I doing so far? I've been fine because I haven't thought about  it however, I will soon be facing that day and then I won't be fine. I won't be fine until the procedure is completed and I see Alexander awake. The thought of all  this just turns my stomach. Blah!

Ready or not, here it comes!

So I ask for prayers and positive thoughts for a successful procedure tomorrow. Prayers that his cardiologist is able to clean up the scar tissue using a balloon. Prayers there are no other issues that need to be addressed. Praying that if there are other problems that need to be fixed, they can be then! Prayers that NO SURGERY is needed and PRAYERS that Alexander handles all of it, especially coming out of anesthesia! (For those of you unaware, Alexander has been under anestheisa six times and only once was there not a problem with him coming out of it).  Alexander is so much stronger and bigger now than before so I can only hope he will do that much better..

Is it June yet?

One week. We have a little less than one week. Next Wednesday, we will be at CHLA handing our Superman over to his cardiologist for her to (hopefully) successfully clean up the scar tissue that has formed around his ASD in the cath lab. I'm ready to be on the other side of this procedure. I hate thinking about what Alexander will have to go through. The recovery process, the pain, the waking up to find a tube in your throat and unable to move. I hate thinking about the pain meds he might be on and the lines he'll be hooked up too. And I REALLY hate thinking about the what ifs! Blah. Can it just be June already??

Alexander has been doing so much better now that we are over the stomach bug. He's finally back to his old self, beginning to consume solids better, and hit a growth spurt yesterday! He's constantly eating! :)

Once all of us are past this procedure, I'm planning to teach Alexander to begin drinking more often out of a cup and elminate his bottle usage, as we have begun weaning him from breastmilk (yes, he is still on breast milk). In addition, we will begin teaching him to fall asleep on his own. We are close to having fall asleep on his own now, however, we know that the sleeping routine is going to get screwed up with the hospital stay; actually many things are going to get screwed up. He will have a few set backs. AGAIN I ask, can it be June already!?

Alexander is continuing to increase his endurance with crawling up the stairs (not requiring so many breaks), he's learning to point, and has learned 12 signs: daddy, more, all done, milk, cracker, water, cereal, fish, book, eat, drink, and open. He's currently learning please. :)
Alexander has also received a speech assessment and we are now waiting for the authorization to come in so that we can begin speech therapy. Once again I ask- is it June yet??

As much as I'd LOVE to go out of town this weekend and check out the Memorial Day festivities, I will not be; and we didn't last year either. Last year we were in quarantine because we were inter-stage (between the two major surgeries) and this year we have his cath. Do I care? No! I'm glad to have him with me and will be enjoying the relaxation this weekend with Alex and his daddy. Maybe next year we can go out of town. :)

I will try to update as the day gets closer of what the procedure will look like. I'm sure it will consist of a very LONG day at the hospital. Thanks for following along, keep the prayers and positive thoughts coming. More than ever now! <3

Have a great holiday weekend! 

Happy Mother's Day & 15 months!

So it has been a little over a week since Alexander caught the stomach bug and it looks like he is FINALLY in the clear of it! It has taken 3 visits to the pediatrician and 2 visits to CHLA, to continuously make sure he was staying hydrated, while ourlaundry pile just kept growing.

The beginning of the week was hectic for us; Alexander was still sick, Wes wasn't feeling well for about a day and my allergies began to attack me. (I'm blaming it on the winds and constant weather change!) 'hiowever, the allergies have now appeared to look more like a cold. So on this Mother's day I am fighting a cold and trying to keep my distance from Alexander (him catching my cold is the LAST thing we need).

Anyways, this past Wednesday Alexander managed to stumble and bang his head on the wood flooring  leaving a nice bruise. The following night, he bumped his head again, luckily not in the same spot and luckily not another bruise.  My little superman just couldn't catch a break

On Wednesday, CHLA told his new Cath date was going to be that Friday. Obviously that didn't happen, but we made another trip to CHLA on Thursday to have Alexander assessed to see if he was okay for Friday. The nurse practitioner assessed him and said he looked good but anesthesia requested that Alexander be 100% better (which he was not then). This  information was fine with me because Alexander'st track record of coming out of anesthesia isn't great, so I'm all for listening to them! So his new date is May 28th. Two more weeks of having Alexander in quarantine. I hate CHD! I will always say it  because of how it deprives Alexander of the things he's missing out on and the constant catching up he will always have to do. I hate that i cant take him to the park or kids festivals. But it's only 2 weeks. Probably better seeing as it is suppose to be HOT this week... Oh, and almost  forgot to mention that with the many days of vomiting, we are back to square one of feeding Alexander solids! He gags at the smallest thing in his mouth!  Just Fabulous! <insert sarcasm>

2014- Mother's Day (15 months)

2013-Mother's Day (3 months)

BUT, Given everything that has happened over the the past week, I'm just GRATEFUL that Alexander is finally feeling better and that I get to spend today with him and at home, instead of a hospital! I hope all you mommy's have a wonderful day and I thank you for following us along on our journey! <3

Just not what we needed right now...

Things just haven't been going that great since my last update! For starters, ever since Alexander's cardiology appointment over a week ago, we've noticed Alexander's oxygen saturations dropping. He's typically between 77-83 (you and I are close to 100). In addition to that, I've noticed Alexander's mouth, fingers, and toes have been blue. When I check his levels, he's between 69-74 :( So on Wednesday (when I was suppose to be getting my license), I took Alexander to CHLA for a quick ECHO to look at his ASD (atrial septal defect- the hole in his heart) due to his oxygen saturations being low. The echo showed the same results as before, with a little bit more growth, but nothing that couldn't wait until Monday. Yes, MONDAY! May 5th. The date was changed AGAIN!The date change is because Dr. Starnes is available for consult if needed on that day.  

I also learned that a stent is not an option. His cardiologist informed me that the pressures in Alexander's ASD aren't great because of the scar tissue forming. We are hoping that his cardiologist can balloon his ASD but she is hesitant. If she can't, then Alex will have to go into surgery and have his ASD removed. Hence the importance of Dr. Starnes being available for consult.  A stent is not an option either as the tissue would grow around his stent and be much more difficult to remove  1-2 years from now, when he goes in for his Fontan.  If he does have the surgery, we won't know when it will be but we are assuming it would be either the same day or within the week. 

Then there was Thursday night. 5 incidents of vomit. from our Superman. One at 9 pm and 4 more at midnight! When I talked to his pediatrician at 1:30 am she said a nasty stomach flu was going around! How he caught this bug, we don't know. He's been quarantined except for his grandparents and therapist seeing him at the house. again- not something we needed! And my license- got that taken care of on Friday along with the the stomach flu too!  The laundry pile just got larger!

So now Alexander's cath has been postponed AGAIN for a few days in hopes Alexander gets over this stomach virus soon and stays hydrated. We will find out the new date tomorrow. 

This is not something Wes and I wanted. We would rather have the cath be done and over with. Especially because he's doing so well with everything else. On Tuesday night, Alexander pulled himself up onto his feet at the coffee table and when we put him at the bottom of our stairs, he crawls up them! His endurance is SO MUCH BETTER that it is hard for us to believe there is a problem. So for now, lots of positive thoughts and prayers for us! For Alexander to get well soon and for his cath to go well and for him to not need surgery! And for Wes & I to stay strong and healthy! Thanks for following along with us. I'll update you all when I know more! <3

 

Slight Change in Plans

Since so many of you have shown your support with words of encouragement and following us on our journey, I wanted to let you know there has been a slight change in plans for our Superman. In 9 days, Alexander will be going into the catherization lab. His procedure was moved up a week because of insurance needing approval, in which case his cardiologist was fine with moving it up a week. So May 6th is the day. The emotional stressful day. As of now, a stent will be placed in his ASD. If plans change, we won't know until we get closer to the date. We are really trying to minimize his germ exposure to keep him strong and healthy, therefore, Alexander is in quarantine until then.  However, we've been on a few walks and had lots of snuggles!

To make things a little more hectic around here, I have managed to lose my drivers license! Being the overly prepared mommy, I always take my license, my insurance card and Alexander's insurance card with me on one of our walks. At some point during one of our walks, it some how fell out of the stroller. Since we are keeping Alexander away from germs, the last place I want to take him is the DMV. So when I tried to set up an appointment to get a new license (because of course they can't have this option online), the earliest is May 8th! Obviously that isn't going to work out. So, thanks to my wonderful mother-in-law, I will be going to the DMV on Wednesday to stand in line and wait, for who knows how long, to get a new license. BLAH! Hopefully it won't be as painful as I'm imagining it to be.

Thank you all for the words of encouragement to stay strong, for the prayers being sent our way that Alexander stays strong and rocks his upcoming procedure, and for those of you that have been checking in on me, to see how I'm doing, I THANK YOU! Please continue to pray for our Superman and I will continue to keep you updated on what's going on! <3

Not the results we wanted

As promised, the update from Alexander's cardiology appointment today. It was not the results we wanted.

The visit started off good with Alexander cooperating during his echo-cardiogram (many kids, beginning around Alex's age, get sedated for echo-cardiograms). He stayed still for most of it, while his daddy sang to him and showed him his favorite songs on a Fisher Price App (thank goodness for electronics too.).  His cardiologist came in for the results about a half an hour later, informing us that the pressure in the left atrium of his heart had gotten larger than what it was 6 weeks ago, due to tissue regrowth in his ASD (the hole in the heart wall that used to separate his left and right atriums). Therefore, it is necessary to have Alexander go into the catheterization lab soon to reopen the hole. Because of the size of the growth, his cardiologist can't just go and use a balloon to open it up, instead a metal stent may need to be implanted. However, before this can happen she must first talk with his cardiac surgeon, Dr. Starnes, and find out if the stint would cause any complications later on for his next surgery (which is still at least a year away). If so, he may need surgery to remove the growth. For now, we start with taking him to the cath lab.

Of course hearing this news brought tears to our eyes, as this the not what we wanted to hear. We were hoping the next time we had to hand our little toddler over to the surgeons would be when he was closer to 3 years of age - not at 14 months.

I'm not looking forward to handing him over to the doctors. I'm not looking forward to the waiting game, to seeing him hooked up to lines and possible vents. I'm not looking forward to seeing him on pain medication or having to keep him calm after all of it is done. I just want to keep him home and continue to teach him the world around him. I don't want to pause.

Even though I'm not looking forward to Tuesday (which will be here before we know it), I'm going to try to stay strong, get most of my crying done over the weekend and just enjoy being with my happy, lovable son! Because Alexander must be healthy in order to have the procedure , we will be quarantining ourselves this weekend. No visitors coming and we won't be going anywhere with him. Prayers and positive thoughts/energy are much needed for all of us. For Wes and I to stay strong for Alexander, for Alexander to rock this procedure and that no complications arise from any of it, and that we only have to stay 1 night in the hospital. As always, I will be updating you on how it all goes and thank you for following us along on our superman's journey that is about to get rocky again. <3

Frustrated & Jealous but completely amazed on what's he's accomplished!

I never truly understood the stress that a mom with a special needs child goes through until now. Right when I feel like Alexander is catching up and  learning so much I discover that I should also be teaching him this or that. My biggest concern is that he is not talking/babbling and I'm becoming frustrated with being told "it will happen".  If he was babbling, I'd be okay with that but we aren't there. When I look back at a video of him at 8 months old, babbling away, I think "what the heck  happened?" FRUSTRATING!!

As this is my outlet to vent, I felt like describing the feelings I have been having besides the frustration. The feeling of saddness that my son will always be fighting for his health and the feeling of jealousy when I see friends and family members have healthy babies. I felt that I may offend some of you and therefore am holding back. Don't get me wrong, I'm ecstatic for my friends and family with their new bundles of joy! It's so wonderful to see their family grow. 

I know that I shouldn't have these feelings but it is very hard at times! Alexander is thriving and in areas that I'm not Expecting- which is FANTASTIC and I'm BEYOND grateful! I know the situations could be worse.

Okay, So my semi-rant is over. As I mentioned, Alexander is doing GREAT. The last time he was weighed, he was at 17 pounds 10 ounces. We no longer weigh him, so you could say we are starting to become "normal" parents. :) We predict that Alexander is now in the 18 pound range.

In the past 2 months, Alexander has excelled more than he ever has. He's crawling for starters! Started crawling the second week of March and is now learning to pull himself up onto his knees. When placed on his feet he will stand up and he FINALLY learned to sit up from a lying down position! Needless to say, nap time has become a little more difficult! His physical therapist has now begun to teach him to pull himself up to a standing position. 

Cognitively-he's right on track! If not, higher! :) He amazes me everyday with how much my 14 month old understands. He's completing 3 piece peg puzzles, putting basic shapes into a shape sorter, identifying many objects, and imitating just about everything. 

Feeding has gotten better too! We've finally begun to feed him soft foods and not just purée. Alexander is also learning to drink from a cup. Speech isn't there, as mentioned, nor is he imitating anything with his mouth (sticking out his tongue, blowing raspberries). A few weeks ago he received an oral motor evaluation and it has been recommended to Regional Center that he receive speech therapy. Problem is, they don't provide it to kids until they are between 15-18 months because an occupational therapist works on the oral motor muscles to help get babbling started. So, I'm working on pushing for speech anyways because he's almost 15 months. Until then, we have begun teaching Alexander sign language because he's becoming frustrated when trying to communicate to us. He signs "all done", " more", "cracker", "milk", "eat", and  "book". 

Last months cardiology appointment went well. However, they did find that his ASD (hole in his heart acting as a valve) is forming scar tissue. If the scar tissue continues to form, Alexander will have to go back to the cath lab. This coming Thursday, we go back for his check-up and find out how his heart is doing. My stomach will be in knots until then. Prayers needed that all looks good on Thursday!!!

He had an orthopedic appointment last month as well (yes, busy month). The  doctor said nothing could be done with his foot now and to wait until he's walking,  in order to get a better idea of what is going on. So we go back in 6 months. His vision appointment was earlier this month too. We learned that he still far sighted and the possibility of him needing glasses is still there. We go back when he's 2 years old  to get a better idea.

Overall Alexander is doing great!! Wes and I are just watching him grow and are busy all of the time teaching him new skills and exposing him to the world around him. 

As always,  we thank you for following us along on our Superman's journey. It is AMAZING to see how far he's come and what's he's doing now. I look forward to what he's going to prove to us that he can do and pray that he continues to stay strong and healthy. Prayers and positive thoughts are always appreciated- prayers that this mommy can relax occasionally and not stress about everything. Prayers that he learns to make sounds sooner than later and lastly, prayers that all goes well on Thursday and that we won't need to visit the cath lab. I promise  to not take 2 months to update you all after our visit too. 



We hope you all had a wonderful Easter! ❤️

2013 Easter

2014 Easter

Alexander's Birthday Party

Well, it's official. Alexander is now 1!

His 1 year check up and birthday party all went well. Alexander weighed 16 pounds, 11 ounces and is 27 inches long at his appointment. He did great at his birthday party too! No tantrums, no crying while be sung too; just smiles and took it all in! His Dr. Seuss birthday theme was a hit ! From the photo booth to the bulletin board of monthly pictures and food placement cards! Alexander got lots of fun toys that made our house look like Christmas all over again!  Here's a little preview of the party:

Alexander's talented cousin designed the invitations! :)

Next week he has an orthopedic appointment, a cardiology appointment, and appointment with his Electrophysiologist (pacemaker doctor). We once again pray that all looks good with his heart from the echo cardiogram, the chest x-ray shows no fluid, that his pacemaker is working  wonderfully, and that no surgery will be needed on his foot. For those of you who don't know or forgot (as this has been one of the least important issues), Alexander was born with what we call a "funny foot". His left foot doesn't have the arch on the side of his foot, therefore resembling his right foot. 6 months ago his orthopedic said that there was nothing to be done now and hopefully applying weight to his foot would help fix it. We are hoping that this is the case or worst case scenario: him having to wear a special shoe. The last thing I want to deal with is another surgery. I will try to update the blog after his appointments and with news that he's crawling (he is so CLOSE!). 

We appreciate positive thoughts and prayers for next week and thank you again for following us along on our Superman's journey. 

Happy 1st Birthday to our Superman!

Here is the long and over-due post:

There is no excuse for not keep everyone updated except that time has escaped me!  I got behind because I have been busy attempting to catch Alexander up on his milestones, keep myself healthy and sanity, as well as expose Alexander to what is around in his environment! I've come to realize that having a boy with half a heart, I must take one day at a time and cherish each day because we don't know what will happen tomorrow. 

Now, on to the GREAT news. Alexander is 1!! I can't believe it has been a year since the emotional roller coaster began!  A year ago, I was finishing up my school assignment, then went to go for my blood work for the following days scheduled c-section, made dinner reservations at a very nice and expensive dinner (as it was our last night as just a couple) when that night, our lives changed forever! It was the start of our heart journey with our Superman! This past year has been an emotional roller coaster no parent can ever prepare themselves for, but we got through it and our little one stayed a strong fighter! Stronger than his mom at times!

2014 didn't start out all that great as I got sick with the flu and pneumonia. Luckily, Wes and Alexander's grandmas took over. I'm so grateful for them! I did everything I could in order for Alexander to not get sick, including leaving him with my mom for a few days. He managed to still get sick, but luckily it was only a cough. A cough that lasted for 2 weeks and was horrible for him! He couldn't clear his throat when he coughed so he struggled with eating and breathing. Luckily, breathing treatments and some antibiotics helped clear it all up.

The end of 2013 went well for Alexander. He got to see Santa (luckily enough we went early and no one was there but us!) and we took him to the Santa Barbara zoo. He didn't seem interested but did notice the lion roaring and walking toward us. He has learned to reach for his toys while sitting up and if he still can't reach them, he leans even further to an almost crawling position to get them. Is he crawling you ask? Nope. But we are getting closer every day. Closer to scooting and closer to learning to sit up from a lying down position too!

He is still receiving Early Intervention Therapy (EI), Physical therapy (PT), and Occupational Therapy (OT). EI is working on his cognitive skills (which are great) and his speech (not so great). Alexander isn't babbling which makes this mom worry. I just keep working with him, in hopes to hear other sounds than "mmmm". His PT continues to work on using his gross motor muscles (e.g. learning to crawl), and his OT is working on eating. When we first started OT, Alexander had an aversion to having his face touched or having the spoon in his mouth. He would gag almost all of the time. He is now on stage 2 of solid foods (thick purees) and only gags if the food is to thick or crunchy. Overall, there has been a lot of progress that has been made. I have a video of some of his newly acquired skills that I will try to post later.

Alexander currently weighs 16 pounds, 10 ounces. He seems to have slowed down on gaining weight but this is due to him being more active and not eating as much.  However, over the past week, his intake of ounces has gotten better, so we hope to see some good weight gain at this next Pediatrician appointment (2/19).  Alexander has 3 teeth on the bottom now and 4 teeth cutting through on the top! Fun times with teething here!!

Since i'm on the topic of eating, I have to mention that  Alexander PASSED his swallow study in December!! No more thickening the breast milk!
However, because we had been doing this for 6 months, he doesn't like the feeling of it thin AND the OT that assessed him said we still must be careful with feeding him. She states this because during the study, she observed 30 swallows, with 3 of them showing an attempt to go the wrong way but didn't. So, we are still using rice cereal to thicken but not as much. Before we had to use 1 1/2 teaspoon to 2 ounces, now we are using 1 teaspoon to 2 ounces and will slowly fade from that. I am still exclusively pumping and looking forward to the day that we can introduce cows milk! :) 

We hope everyone had a wonderful holiday and that 2014 has started out great for you! Thank you for following us on our journey, can't believe it has been a year! Alexander has several doctors appointments next month (cardiology, pacemaker visit, orthopedic, and optometrist) and we hope all goes well with each appointment. 

We greatly appreciate the prayers and positive thoughts and we hope 2014 consists of less hospital stays and a lot more memories of our growing Superman!

Happy birthday Alexander!