We are so thankful for our little Superman!

Wow.   Where has the time gone! I realize it has been quite some time since I last updated the blog and trust me when I say that I had been working on it over the past month, but just never got a chance to post it. Here goes a summary of the past month:


Alexander currently weighs 15 pounds 5 ounces. He's tiny still but mighty!! At his 9 month check up he fell into the 3 percentile for his weight BUT his head is at 89 percentile!! Such a big brain! :) We knew before he was born that gaining weight was going to be an issue because his heart is working so much harder, resulting in burning more calories. We continue to feed him every 3-4 hours with breast milk mixed with rice cereal and solids 2-3 times a day.We believe he is dealing with silent reflux, so he is back to taking Zantac. Reflux is common among heart babies and I'm hoping he will outgrow it. Next month Alexander goes in for another swallow study. I'm REALLY praying that he passes this time by showing no signs of aspiration! I'm really tired of having  thicken his milk. If he passes, we can then start to give him water and juice in his sippy cup.

When Alexander turned 9 months at the beginning of this month, he mastered  sitting unassisted and had 2 teeth came in!! Last month Alexander learned to roll from stomach to back!! We have a rollie pollie on our hands! On the same day that he decided to be Mr. Achiever and learned to roll, he also got his first fever :( 102.6! Luckily it was quickly reduced and was a side effect from his flu shot, polio combo vaccination.

A month ago, Wes and I finally got to experience what it is like to sleep 7-8 hours straight! Our cardiologist visit in October stated that we could decrease his sildenifil from every 6 to every 8 hours which meant no more 2:00 am medicine or feeding! Alexander gets his last bottle and medicine at 9 pm and then not again until 5 am! During the visit last month, Alexander's echo cardiogram looked great and his chest X-ray just looked okay. Just last week we had another visit to his cardiologist and once again everything looked great! So good, that we don't go back until January! An echocardiogram wasn't done this time around but a chest x-ray was and still looked the same. So his medication (Lasik and Sildenfil stay as is). Still, we are happy with the improvements he has made and the sleep that we all get!

In October, Alexander got to go to the pumpkin patch and Trick or Treating! We can't wait for next year! :) Team Baby Alleman Superman Heart also joined the American Heart Association walk in Santa Clarita last month. We had a nice turn out. Alexander slept the entire walk but a had a fun time meeting Wonder Woman before his nap! 

Given everything that has happened over the past 9 months, we are so thankful for a thriving son, and the huge support we have from our family and friends! We wish you all a very happy Thanksgiving!

Join our team or please help our team

Please donate or join us on October 26th to walk in honor of our Superman and help raise money for more research on pediatric heart defects, strokes, heart attacks, and how to prevent heart disease, 

http://heartwalkla.kintera.org/faf/search/searchTeamPart.asp?ievent=1042048&lis=0&kntae1042048=EC87109422A14E4B9D9E55D80A92582D&supId=0&team=5623854&cj=Y

The love for our Superman

People ask "how do you do it?" And I always say "one day at a time" but I think Wesley's view is better: "We just do it. We have to."

There has been multiple times where I find myself crying (and I don't doubt this will stop) because I'm reminded that Alex has a life threatening condition and then I see how delayed he is when I see our friend's babies of the same age. But then I forget about it all when those beautiful brown eyes look up at me and into my eyes, with the look of love. Everyday I fall more in love  with our superman and absolutely love seeing him grow. A year ago this month, we found out about Alexander's heart defect during my 20 week anatomy scan. That day, October 1st, really changed our lives. We were stunned and unsure of what to think or how to take it all in. I remember thinking "hypo plastic what?" Our perinatologists provided us with choices, pushing abortion. But after an emotional week of taking it all in, we decided to give our baby a chance. On October 13th, we learned that our baby was going to be a BOY. From that point on I knew he was going to be a strong heart warrior. I didn't realize how much I could love him or how his smile makes me forget about what might be bothering me at the moment.

Alexander finally weighs 14 pounds!! He has been going through some changes that we are unsure of but over all he is a happy baby! On October 11th, Alexander turned 8 months old and on that day we introduced avocados, which he seems to enjoy. We are still waiting for him to get an Occupational Therapy assessment to assess his feeding and oral motor skills. I am hoping this week we get a call.

If you're wondering what is different about our little superman you're not alone.. On October 2, Alexander graduated from his Doc Band! No more helmet!  The staff didn't expect him to grow this fast and we are so happy to see him without it! Alexander has been doing very well during his physical therapy sessions, getting stronger every week. He is very close to sitting unassisted and to rolling over from his stomach to his back!

Thursday is my day of worry.  I ALWAYS worry when it is time to go to CHLA for a check up and tomorrow is the day. Alexander will be getting an echo cardiogram and chest x-ray done prior to meeting with his cardiologist. I'm PRAYING that his echo looks good (if it doesn't he would need some sort of intervention) and that his chest x-ray is clear (if it is, that means his diuretic is working and/or Alexander isn't aspirating). Please pray that tomorrows visit goes well!

We are looking forward to the new milestones our superman learns and enjoy seeing him smile when he's learned or been exposed to something new. This weekend we will be taking him to the pumpkin patch. A first of many events this year. Thank you for continuing to follow us as we watch our Superman learn, grow, and continue to stay strong.  Positive thoughts and prayers are encouraged, especially for tomorrow!

7 months and milestones reached!

When other heart moms told me life was so much better post Glenn, I didn't really know what they meant, but I do now. Alexander has been changing everyday and catching up quickly with some of his milestones. On September 11th, our little man turned 7 months and since then he has learned to stick his feet in his mouth, stick his tongue out at you, has begun laugh more and has learned to roll over!











In addition to our big boy with his skills emerging, he is also sleeping in his own bed now and beginning to sooth himself to sleep. When he doesn't want to sleep, he wants to play, play, play!






Now that there is no longer a sternum precaution, physical therapy has really started with him. His therapist comes twice a week, making him sit and lay in positions to strengthen his upper body. He does not like theses exercises and gets so mad he turns blue. Not to worry though, I'm there observing and checking to make sure Alexander's pulse oximeter gives a good reading during the session. Luckily, he doesn't stay the lovely shade of blue long and with every session he is getting stronger. By 8 months, I'm thinking he will be sitting independently and hopefully rolling from stomach to back because right now he gets stuck when he rolls from back to stomach.

Alexander's many appointments have finally slowed down so we can finally spend more time at home instead of go go go. We are now down to therapy coming to the house 3 times a week (early interventionist comes once and PT comes twice) and  weekly visits visits to Cranial Technology to see how Alexander's Doc Band is fitting. We've been told that Alexander's head is growing fast and he should only need to wear it for 3 more weeks! :)

On to the slightly disappointing news. After his cardioalogy appointment two weeks ago, Alexander is still on his two medications: Sildenfil and Lasik, as his chest X-ray showed some haze. We also had his swallow study this week and he unfortunately did not pass because he aspirated twice. :( This makes me very heart broken as I am no longer nursing him. He will still be receiving breast milk but it will be thickened with rice cereal for another 3 months and then he will be reassessed. I'm not sure if I mentioned before but the thickening of the breast milk is a pain in the butt!! He gets 1.5 teaspoons for grinded rice cereal for every 60 cc's, in which he has to finish in 10 minutes because the enzyme in the breastmilk breaks down the cereal. On top of making sure Alexander finishes the bottle in time, we also have to be cautious and look for any signs of aspiration-which is much more difficult than you would think. We have 3 more months of that-blah! However, we have started solids this week! :)

A few weeks ago, Alexander's grandma Cindy had a blood drive in honor of Alexander and all the rest of the children at CHLA. It was a such a good turn out!

Lastly, Alexander's teething seems to be effecting his his eating, which he is slowing down his weight a bit. He currently weighs 13 pounds 6 oz. and we are hoping feeding him solids will help with his weight gain. He has an appointment with his GI specialist in the next couple weeks and I'm hoping he doesn't want to have the discussion of putting in a G-tube because of his weight. That is not a conversation I want to have or something I want to do. I feel like I've worked so hard to get him to feed "normally" and he's made such good progress with the changes, that I don't want to back track.  People tell me-"Don't worry" or "You worry to much", but I feel that as a mother, your job is to worry and being a mother to a cardiac baby, where anything could go wrong, and having to stay on top of so many things (i.e. heart rate, breathing, color change, dehydration, weight gain, etc), that it is hard not too! I keep trying to stay positive with all of the milestones he has begun to meet and not let the things that he isn't meeting bring me down or worry me.

Thank you for following us on our superman journey! Prayers and positive thoughts are always needed for Alexander to continue to gain weight, get stronger every day, and continue to to meet all of his milestones!

The adventures

Oh the adventures we went on 2 weeks ago! Two Thursday's ago, I took Alexander out into the community. First stop was USPS and then to Macy's. I parked and went into Macy's on the second floor, looked around for the home department and discovered it was on the first floor..crap! So once I found the elevator, I went to the home department and of course after 15 minutes of help, I couldn't get any of the bridal registry items for a friend because they didn't have it. So we headed home.
On Friday, Grandma Jeannie and I loaded up the car with lots of stuff for our weekend in Escondido. Our plan was to head that way after Alexander's visit in Pasadena to get his Doc Band. Well, 10 minutes on the road, as I was getting onto the 210, I blew a tire! I slowly got off the freeway, parked under an over pass and called AAA. When they arrived, the guy told me that he could put a patch on my tire, not worry about the doughnut I had and follow him 1.5 miles to a tire shop to get the tire fixed. I got on the freeway, drove 500 feet, and poof! No more air in my tire. I pulled back over, the AAA guy put more air in my tire and said "GO!". So I went another 500 feet and poof! flat again and now my car was smelling like burnt rubber. So, the AAA guy then took all of stuff out of the car, got the doughnut out and put it on. We then got to the tire shop, where we were told that the tire couldn't be replaced and it would be 45 minutes to get a new tire on. Well, it was 90 degrees at 12 pm, the place had no A/C and Alex needed to be fed. So I said, thanks but no thanks and drove to another tire shop, that had A/C. While we waited 45 minutes at the next tire shop, I changed  Alexander's diaper and fed him. Here I was, hadn't exposed Alex to many germs, and I had him in a tire shop! Needless to say we didn't get Alexander's Doc Band and the appointment was rescheduled for Monday morning.

The rest of the weekend went well! Alexander seemed to enjoy being out of the house and in a new environment (enjoying all of the ladies at the bridal shower). Since Wes wasn't on our trip, Auntie Kasey helped me out with the 2 am feedings (it makes it difficult to pump and feed that early in the morning).

We came home on Sunday and stopped in Moreno Valley at a Starbucks to feed Alexander and change him (I thought there would be a changing table in the women's restroom-no such luck!). While we were in Starbucks, Grandma Jeannie volunteered to feed Alexander. While she was feeding him, he preceded to poop and poop up his back and out the side of his diaper onto his Grandma.

Since there was no changing table in the bathroom, I took Alex out to my car fully loaded with CRAP, in the 90-100 degree heat and changed his diaper on the passenger seat. Thank goodness he wasn't wearing his helmet at the time-that would of made him sweat more and much more time consuming changing his poopy diaper and clothes! Once he was changed, I put him in the car seat and we left. 30 minutes from home, Alexander decided he was overly tired and had a crying fit, to where his lips started to turn blue. Grandma Jeannie was driving while Auntie Kasey was following us. We got off the freeway so that I could figure out what was wrong. As we were getting off, he quieted his cry and calmed down. I then took over the drive, while Grandma Jeannie went with Auntie Kasey. He soon passed out in the car and slept the rest of the way home-thank goodness!

Since then things have been busy with multiple trips to Pasadena to make sure his Doc Band was fitting right and now that it is, we go once a week for a quick 15 minute trip. Alexander's cardiology visit was last week too. His echo looked good and his next appointment is in 2 weeks to see his electrophysiologist (pacemaker doctor) and his cardiologist. They will do an X-ray then to see if we can stop the lasik and be down to 1 medication (His Sildenifil).

Great Grandparents helping with medicine!

As for the feeding, I haven't nursed Alex since last week either and have continued to thicken his breast milk with rice cereal. His cardiologist scared me by stating that if Alex's lungs were to be compromised  he wouldn't be a good candidate for the Fontan! Therefore, I'm not taking any chances! So we continue to feed by bottle until his swallow study on September 24th. We then can reevaluate the feeding issues-I'm ready for September 24th to be here! Sleeping during the night has been better! Now that Alex is gaining weight (currently weighs 12 lbs 10 oz) we don't have to wake him every 3-4 hours! He still gets his Sildenefil  at 2 am, so his last feeding is around 8 pm, then goes to sleep until 2! Giving Wes and I a couple more hours of sleep.
Alexander's great Aunt April came out to visit and Alexander has enjoyed her company. He also likes it when he gets to see his great grandparents!

For the past 7 weeks, Alex has been on sternum precaution (no tummy time or picking up under the arms).  We have one more week to go and then we can lift under the arms and start tummy time again, which his PT is looking forward too! I can't wait  and neither can Alex because he seems to be ready to move! Still no tooth but my my we are close! Alexander is a drool face and crabby butt!

Hopefully the next post will be up next week, as our superman will be done with sternum precaution and will  be 7 months old! Thanks for following our superman on his journey! 

Finally a visit to Anacapa Brewery! :)

Exhausted

 If you hadn't heard, our superman came home a week ago Tuesday! Since then we have been trying to get back into a routine, as well as, trying to catch up on some sleep! Luckily, I am thankful for the help from our moms, especially my mom, as she has been here almost everyday helping and was at the hospital everyday helping me before being discharged.

Alex planning his escape!

Upon being discharged we were sent home with 4 medications, a vitamin, and rice cereal ! Because Alexander showed one incident of silent aspiration during his swallow study, in addition to precursors of possible aspiration due to a wakened vocal cord, Alexander's breast milk is now thickened with rice cereal. The hospital states that I should pump for 10 min, feed bottle and then if he's still hungry I could nurse. Ha! I don't think so. Instead I pump first to help control the fast let down, and then nurse when he needs comforted or a snack. Otherwise he gets the bottle. Next month we will be going back to CHLA for another swallow study and see how his swallow looks.

So, in addition to pumping every 3-4 hours, feeding every 3-4 hours and then giving him his medicine every 6,10, or 12 hours- Wes and I don't get much sleep! To make things more interesting, I have come down with a cold as of Sunday night. Barely getting out of bed and having a fever doesn't mix well with a 6 month old, which means I shouldn't be around Alexander.  I'm once again fortunate to have my mom help me out this week during the day and Wes to take over at night. Even though Alexander is getting healthier now that the second surgery is done, staying away from sick people and using good hygiene will still be on going. So if you see us, don't be surprised if I pull out some hand sanitizer or ask if you've washed your hands before touching our superman.

The next few weeks are going to be busy for us. Not only do we need to get into a feeding medication routine, therapy services are resuming this week, doctors appointments are going on and Alexander gets his Doc Band next week!

Prayers are requested for this momma to kick this cold quickly, for our routine to get easier, and Alexander to stay strong and healthy!

Frustrated

The past three days have been a roller coaster ride of emotions. I have felt every emotion possible: worried, angry, irritated, sad, happy, etc. Thursday morning, I was so happy  to walk in and see my baby boy extubated and sleeping peacefully.

However, Wednesday was full of worrisome and anticipation. The day started off with waiting for the cath lab team to come and get Alexander. Once he went to the cath lab, he was away from us for 4 hours; 4 hours of me with a knot in my stomach. Luckily, Alexander behaved himself and didn't have any hiccups coming out of he anesthesia. The cath lab team found that the collateral vessel that was coiled at the first heart cath (pre Glenn), had opened up more, causing the collateral to become larger, which redirected some blood flow and bypassed his lungs (which was one reason for his low saturations). They also acknowledged that his right pulmonary artery is narrow and that an angioplasty would be needed however now is not the time to do it. The surgeons are hoping it won't need to be done until Alex has his third surgery, the Fontan (between the ages of 18 months-3 years old).

Now to back track a little bit. On Tuesday Alexander's feeding session by bottle was assessed and the occupational therapist (OT) felt that a swallow study was needed to make sure he wasn't aspirating. His soft cry, drooling milk out of mouth, and "wet" cough were signs of this possibility.The swallow study was scheduled for Wednesday but the Heart Cath took priority.

So Thursday, while still in CTICU, during rounds, I brought up the fact that Alex needed to have a swallow study. When it was time for Alexander to begin eating again (have to wait at least 6 hours post extubation before eating), the doctors wanted him to eat by bottle so that they could track how much he was eating. When I informed the doctors that Alex was getting 3 bottles and nursing, they still said they wanted to track the intake of feeding. Later that day we were transferred to CV Acute. When we got there, I inquired about the feeding situation and if I could nurse him. The nurse practiioner (NP) informed me that the orders from OT prior to the heart cath stated that no oral feeds should occur until his swallow study. Therefore an NG tube was needed for feeding that night. I was very upset at this point, for two reasons.  First, I disliked the NG tube because Alex doesn't need it - he can eat by mouth - and second, I couldn't nurse him. I informed the nurse that I was fine with an NG tube going back in but that a swallow study needed to happen on Friday because I was not going to want the tube over the weekend (just so you know, nothing happens on the weekends ).

Friday morning, I was informed that a Swallow study was going to be conducted. In addition, an ENT (ear, nose throat) consult would come assess him to make sure he didn't have any vocal paralysis. The results of the ENT consult and swallow study confirmed that Alexander has a weakened vocal cord, caused from intubation. Having this weakened cord could potentially cause Alexander to aspirate while drinking breast milk and that he had one episode of silent aspiration during the study. Therefore our feeding plan had to be changed.

Night before Heart Cath

Changing his feeding plan (even if it is temporary) is something I'm having a hard time accepting. the OT provided me with three options on ways to feed him. The first option was feeding him breast milk through an NG tube - this option was taken right off the table. The second option is to thicken the breast milk with rice cereal. However, this mixture must be consumed within 10 minutes because there is an enzyme in the milk that breaks down the mixture causing it to thin out. (Luckily, Alexander can consume a bottle in 10 minutes of less). The third option is to provide him with formula (blah!). OT also informed me that she doesn't want Alexander to be weaned from breast feeding completely because does console him. Therefore she suggested that I pump half way through before putting him to breast. Which I was pleased to hear.

I made the decision to use formula (if needed), to nurse after pumping, and to thicken the breast milk. I informed my decisions to my "favorite" nurse practitioner (the same one that told me I wouldn't be able to breast feed when Alex was born...). Well, when the night nurse came last night, she told me that the orders were to either feed Alex the thickend breast milk or use formula. In addition, that I was to only offer him the breast after I pumped completely and for a "non-nutritive" source- completely different from what the OT said!!!

This morning I attempted to get clarification about the feeding plan during rounds, of course my "favorite" NP wasn't working today. The current NP informed me that she would look into the situation and  make a decision but for now, only offer breast as "non-nutritive" source! After reviewing the orders, the NP told us that some of the information in the notes is unclear and that Monday would be good day to discuss with the NP and OT. For now, I am allowed to nurse Alexander after I've pumped half a bottle, three times a day. I'm so upset about this! I feel like I'm back to square one when he was a newborn and they told me I wasn't going to be able to breast feed. I'm missing the bond I have with him and there's nothing I can currently do about it! I understand their concern about him possibly aspirating, as I am too. BUT, I'm EXTREMELY frustrated that no one can get there notes/orders correct and instead I hear "let's wait and see" or "let me look into it" or "well this what the nurse practitioner's orders are, so let's wait for tomorrow". I'm really trying to just go with the flow so that we can get the hell out of here and then change things up when we get home, but when you keep hearing the same responses over the past 18 days-it becomes a little bit annoying and unsettling.

On a positive note though, Alexander is doing well from a cardiac stand point. He is currently not on ANY oxygen and hopefully it stays like that so that we don't have to go home on any! His voice is also starting to come back as well (from the second intubation). He's beginning to smile more and be the happy baby we know!

No Oxygen, no NG tube! :)

Prayers and positive thoughts are always needed for Alexander to stay strong, push on through and not need oxygen at home or another procedure for at least a year! :)

Also prayers are needed for his mommy to stay positive and not go off on the next doctor or nurse that says "let's wait and see," and for his daddy to be able to keep Alexander's mommy calm until questions are answered!

Day 14 and still here!

I realized after submitting my post this morning that it has been 14 days since Alexander came to the hospital for his heart cath and 12 days since his Glenn. Where has the time gone? The days in the hospital tend to blur together. I really don't know what happend last week.

 Tomorrow will be day 15 and Alexander will be heading back to the cath lab. This morning Alexander had an echo cardiogram which confirmed - what we didn't want to hear- that he has an abnormal venous collateral vessel. This is occurs when a vessel in his body is created and it attaches a vein to an artery, creating an alternate circuit for his blood to flow through that bypasses his heart, thus causing his inability to stabilize his oxygen saturations. I have learned that collaterals are common and in fact, Alexander had a collateral during his first catherization. The doctors have informed us that they believe the collateral formed after Alexander had his Glenn procedure.

To fix a collateral, the doctors put a coil in it that will collect blood cells and clot up to keep the blood from flowing through that vessel. While they have him, they will also investigate the site of the Glenn procedure, as they believe that scar tissue may be creating a restriction within one of the pulmonary pathways to a lung. This could result in decreased blood flow to that lung, which will in turn decrease his oxygen levels and cause one lung to under-develop, if left untreated. If they feel intervention is necessary, they will consult with Alexander's surgical team about possible treatment options.

Depending upon the severity of the restriction, they may treat it with angioplasty (inflating a balloon within the artery to stretch the vessel walls) or they may install in stent (a small metallic wire cage that supports the artery) if the angioplasty fails to open the artery sufficiently. These are both shown in the figure (click on it to enlarge), though Alexander would have scar tissue, not plaque. If treatment is required, we hope that there is no need for the stent, since it would have to be replaced or maintained as Alexander grows - meaning future trips to the Cath Lab! Additionally, since the intervention would be done at the site of the Glenn sutures, they may decided to hold off and ask us to come back after he has healed some more - which would mean at least one more procedure at some time in the near future! This would be done if they feared that expanding the vessel now could rupture the suture work that is holding in place the work done during his Glenn operation.

It has been a rollercoaster of emotions for me! I am not ready to to hand him over to the doctors especially since he has become his happy self again. During one of my crying moments, I looked at Alexander and told myself that I needed to stop and be strong for him. When I began making silly faces at him, he gave me a huge smile and began to laugh!! It was just what this momma needed.

There is a chance we may have to go back to CTICU because of  how Alexander reacts after surgery.  I'm praying tomorrow is uneventful and Alexander's pre-op assessment, his procedure, and his post operation all goes VERY smoothly! This momma isn't ready for it but I know it is what's best for him. Hopefully all goes well, that his recovery from it goes quick so that we can get out of here and show our Superman off!