Not ready for this week, but...

Look  who is 5 months old and has found their feet!

Daddy & I reading before bed!

Why is it when baby sleeps, I can't sleep? But when I want to sleep, baby doesn't!? Probably because my mind is racing a mile a minute thinking and worrying about what is to come!

I love these new "toys"!

Okay, update!..Last week physical therapy (PT) and
early intervention (EI) started. I got some great ideas from his PT but not sure how I feel about his Early Interventionist. Not only did she show up late, she also seemed to take the information I told her regarding his skill deficits and not assess him herself. In addition, she was asking questions regarding skills he obviously couldn't do, which means she didn't read the inital report prior to coming!  We will see how it goes with her once we come home and resume services.  I foresee the Behavior Analyst in me coming out! Alexander will also be fitted for his helmet once after his hospital stay. There are lots of things to occur once we come back home, so lets hope for a quick recovery!

Our fourth of July was nice! We stayed home and watched fireworks while Alex slept. :) We've also been getting into a bedtime routine that seems to get better each night (which will be trown out the window starting tomorrow). His oxygen saturations still look good, ranging from 79-81 and he weighs 11 lb 4 oz!!

Tomorrow. Tomorrow is the beginning of an emotional week and I'm not sure how I'm feeling about it. I haven't gotten the phone call regarding pre-op information, which  could be why I'm an emotional mess one minute and  next I'm not- because it's just not "real" yet. I should be receiving that call later today. 

If you want to help Alexander out, donating blood is one way. Because it is an open heart surgery, he may require a blood transfusion. You can read more about donating blood at CHLA Donate Blood

If you can't donate blood, prayers and positive thoughts are needed too. We are praying that Alex does well with his procedure, as well as, the pre and post operations. We are also praying we get a room at the Ronald McDonald house again. As of now, there are no rooms, so I must call each day, in hope there is one.

As I did in the beginning of this HLHS journey, I will post updates everyday (or try to)! Thanks for following on our Superman's journey!

The latest with our Superman...

The date has been scheduled! July 15th is Alexander's Cardiac catheterization (heart cath) followed by the Glenn surgery on the 18th. A heart cath is an invasive imaging procedure that will allow Alexander's cardiologist to "see" how well his heart is functioning. During the test, a catheter will be inserted into a blood vessel in his leg and guided to his heart with the aid of a special X-ray machine. Contrast dye will be injected through the catheter so that X-ray movies of his valves, coronary arteries, and heart chambers can be created. The pressure in his lungs will be measured as well during this procuedure. If Alex's cardigologist learns that Alexander's pressures in his lung are to high, he won't survive the Glenn and other interventions may be needed before he could have the Glenn procedure. (Ugh!) Let's hope this isn't the case. For a video clip of what the Heart Cath "movie" looks like: https://www.youtube.com/watch?v=4l6htCSR_7M

 I know many of you have asked us about what will occur during the Glenn, so here it is.
A Glenn shunt is a surgical operation in which a large vein (the superior vena cava) is connected to the right pulmonary artery so that blood bypasses the malformed right chambers of the heart and is shunted directly into the lungs to be oxygenated. His PA band (the band on his pulmonary artery-completed during the first surgery) will either be tightened or it will be left in-this is up to Alexander's surgeon, Dr. Starnes. We won't know his decision until the week of the surgery. Typically, the heart cath is done a few weeks to a month prior to open heart surgeries. However, because Alexander has a muscle blocking partial flow of his Pulmonary Artery, he will most likely be very blue afterwards and his body may have a difficult time regulating. Therefore, they are going to do both procedures in the same week. The recovery process for the Glenn is typically a week. Both procedures worry me greatly!! Because as you know, Alexander does well with procedures/surgeries; it is the before and after that affect him. We are praying that he is stronger and much healthier this time around and won't have any "issues" before and/or after the surgery.

On a positive note, once the Glenn is over, not only will we be able to take Alexander out in public, we will also be trying new things! Like feeding cereal, sleeping in his own bed and hopefully sleeping through the whole night- no more feelings every 2-4 hrs during the night!

Future WVU or USC Kicker....

2 weeks ago Alexander got to see all of his great grandparents at one time! Wes and I were happy to have all of the grandparents together for a few pictures!

There are things I haven't mentioned  on the blog mostly because I wasn't ready to accept it but now I must.  Alexander will be receiving physical therapy one time a week because of a delay with his motor skills. He is requiring PT due to not being able to start tummy time until he was 2.5 months old and he couldn't be picked up under the arms until he was 3 months old. He is currently at the developmental stage of a 2 month old with his gross motor skills. A physical therapist (PT) will be working on getting him to lift his head, roll over, as well as, other gross motor activities. A child development specialist will also see him once a month to make sure he is meeting his developmental milestones.  In addition, he needs a helmet (Doc-Band) to help with the shaping of his head. He has a flat spot from being in the hospital for 4.5 weeks and the left side of his head is more round than the right. The therapist have stated he has moderate Plagiocephaly and Brachycephaly. He will begin wearing a helmet after his surgery. For more information about the Doc-Band, Plagiocephaly and Brachycephaly, check out the link: http://www.cranialtech.com/index.php?option=com_content&view=category&layout=blog&id=37&Itemid=28

 I never thought I would be on the other side of therapy! I find this difficult to talk about because I don't really want to accept it, yet I know he needs it and I have to! I'm HOPING the only delays are his motor skills and nothing else! Watching him try at tummy time breaks my heart and fills my eyes with tears of joy when he makes the slight bit of progress! From my professional experience, when teaching a child to strengthen their motor skills, the skills are acquired quickly. He has been authorized to start services as of July 1st. I'm hoping we can get one session in before his surgery, otherwise, we will be waiting another couple of weeks.

Everyday Wes and I are learning more and more about Alexander, as his little personality grows. He is quite the talker and last week I heard Alexander giggle! He has continued to do little giggles here and there, and I can't wait for him to always be laughing. He currently weighs 10 pounds 15.5 ounces!







These next two weeks will probably fly by and before you know it, the day will come. I'm not sure how I'm going to get through it without being a complete emotional wreck, but I'm going to try. I have to stay strong for Alexander. The week of his surgeries will be a LONG week. Prayers and positive thoughts are always needed and will be needed even more in two weeks. Praying that he gets through both procedures without any complications and that we are only in the hospital for the typical recovery time, 1 week!

Watching Mommy & Daddy cook!

We hope everyone has a safe and fun 4th of July!

The Long and Overdue Post

Finally, a post!
This past month have been good for us, with a  bump along the way. It has actually gone by quickly and trying to recall everything,  is somewhat of a blur.







Over the past month, I graduated with my Master's degree- celebrating with family and friends, Wesley has been enjoying his new job at St. Jude Medical, Alexander turned 4 months last week and he currently weighs 10 pounds, 3.5 ounces!

Found his thumb!

One of the bumps that occurred, happened two weeks ago, when Alexander was admitted back into the hospital. The morning of June 3rd, Alexander's oxygen saturation were between 68-72, when he should have been between 80-85. I called his cardiologist and she stated that his levels were in a safe area but if he dropped any lower he would need to be admitted. A cardiology appointment was made for Thursday.  By mid afternoon, his saturation levels were still the same, along with him hardly eating, wasn't being his social self and he had blood in his stool. His cardiologist was concerned with the blood in his stool, stated he could be anemic and suggested that we come in for an overnight observation. 4 days later, we went home!

Alexander had required another blood transfusion and blood test was conducted to see what he was allergic too. Since then, we have learned that Alexander is not allergic to anything (thank goodness!) but instead, is intolerant to dairy and soy. So, for the next 8 months, my diet has now changed tremendously- no dairy or soy for me because I'm still nursing. While in the hospital, I realized that the art of nursing in the hospital is a talent! It can take multiple tries to finally be comfortable when you're fighting with an uncomfortable chair, a pillow or Boppy pillow that doesn't fit, your baby's nasal cannula, the leads that monitor his oxygen, respiratory rate, and heart rate, and an IV line! When I would finally find the right position for comfort, I hated moving him, especially when he would fall asleep. The difficulty of getting into that position takes time and the last thing I want to do his move him! But I had to as I'm was never fully covered and hospital staff were constantly coming in to do tests. Oh, the joys of the hospital! 

 
 

Wesley and I are so pleased with the amount of people helping Alexander and us out! In May, a Triathlon occurred at Refugio beach, to raise money to help with Alexander's medical bills and the second weekend in June, the Congential Heart Defect Walk occurred. We were happy with the 20 people on our team that joined us in support of Alexander.

Thursday is his cardiology appointment, to discuss his next surgery. I'm not mentally ready for that nor do I think I will ever be! Looking at him now and the pictures when he was in the hospital, it feels like a dream-he's a completely different baby and I know that after his Glenn he's going to change even more and thrive even more! However, once it is done, we will no longer be in the "interstage phase" (period between the two surgeries). Alexander has not been exposed to the public (with the exception of doctors appointments) since he was brought home. We are doing this to prevent him from getting sick and if Alex were to get sick now, it would be a lot of strain on his heart.

Which, by the way, I hate interstage! I'm jealous when I see and hear about my friends with their babies, who are anywhere from a few days apart from Alex to a few weeks, taking their baby everywhere. Here we are, stuck in our home or families homes, unable to show off Alex to the world.  It's somewhat disappointing to think that the first time I take my son to a public place he will be 6 months old and I'll be acting like he's a newborn because it will be our first time out. Like I said, once it is over, I will be relieved! We will be able to take our handsome boy out in public! No more needing a baby sitter so that I can run to the bank or the grocery store (even though I GREATLY appreciate the help from Alexander's grandmas!) and no more needing to say "no" to family events!

On a Positive note, overall  Alexander has been doing well! He's continuing to gain weight appropriately with only breast milk. When Alexander was 3 months old (May 11th), he weighed 8 pounds 15 ounces, and now at 4 months he's over 10 pounds! To think a few months ago, I had an NP telling me Alexander wasn't going to gain weight with jusr my breast milk...HA! 

Alexander is continuing to nap in his crib, has begun to reach and grab for items, is showing signs that laughter is upon us, and he's teething! He is learning everyday and making us so proud of how strong our superman is!Positive thoughts and prayers are always welcomed in that Alexander continues to stay healthy, continue to thrive and gain weight each day!

Happy Sunday!

Hope everyone has had a nice weekend! Here is a quick update on Alexander.

He is growing everyday! I didn't realize how much has grown until I looked at pictures taken of him when we first came home from the hospital. When we came home 7 weeks ago, Alexander weighed just over 6 pounds. Today, he weighs 8 pounds 10.5 ounces and is fitting into his 3 month old clothes (he's not even 3 months old yet!).

 Besides gaining weight, Alexander has also been working on lifting his head during tummy time, reaching for his toys in his bouncer, and learning to take naps in his own bed.

Over a week ago, we received a pulse oximeter  and it has been such a stress reliever. Wes & I check his oxygen levels every morning and whenever he seems to not be acting like himself. He has been maintaining his oxygen levels in the low 80's, which is just fine. He had a cardiology visit on Thursday and it went well. Alexander's cardiologist is pleased to see how Alexander is growing and is hoping he won't need a blood transfusion every month (she's not the only one!). She did state that his next procedure, the Glenn, can occur anytime between 3 months old and 10.5 pounds. We are definitely getting closer to that point and I'm starting to stress about it, but a date hasn't been set yet. I am just not ready to see him hooked up to a bunch of machines and pain killers. I'm also worried about how the surgery will  go, given his current record. I just want him to be healthy and at home!
One of the hardest parts of being a parent so far is watching your child being wheeled away for surgery and then to come out of surgery with a bunch of machines hooked up to them, keeping them alive! I don't want to go through that again!! Ugh! The one thing keeping me from breaking down every time I think about it, is the outcome. Once he has his Glenn, there will be no more inter stage; no more staying cooped up in the house like hermits because we want to limit his germ exposure. We will be able to take him out in public and show off the handsome boy!

Okay, enough venting for now. On a lighter and more positive note..two weeks ago, Alexander got a visit from his Great Aunt April. He was a very happy boy around her and she seemed to be in love with him! They got to spend lots of time together.

Last weekend, we went to Ventura (needed to get out of our house) to hang out with Alexander's G-pa, G-Ma, and Auntie Kasey. Alexander finally got to watch NASCAR with his G-Pa! :)

We have another cardiology appointment in 2 weeks, as well as his pediatrician appointment. Until then, we will continue to be teaching Alexander different things to keep him thriving! For any of you interested in joining us on June 9th for the Congenital Heart Walk at Griffith Park, please register yourself under Team Baby Alleman Superman Heart. If you can't join us and want to donate money, that's great too! http://congenitalheartwalk.kintera.org.

Positive thoughts and prayers are always appreciative and needed for our little Superman to stay strong!

Congenital Heart Walk - Greater Los Angeles Sunday, June 9, 2013

Dear Family and Friends:

As many of you know, on October 1st, Wes & I foud out Alexander was diagnosed with a congenital heart defect (HLHS),which has forever changed our life. That was 6 months ago and despite some  challenging times, he is doing great! To recognize this important time in our lives, we are starting Team Baby Alleman Superman Heart to benefit the Congenital Heart Walk. I would like to ask for your support by either joining the team or sending in your tax-deductible donation today!

Here are just some of the facts: Nearly two million children and adults are living with a congenital heart defect (CHD) in the United States. Each year approximately 40,000 babies are born with a CHD, making it the country’s #1 birth defect. At least 10% of all congenital heart defects are first found in adulthood. Thanks to increases in survival rates, the number of adults living with a CHD rises by 5% a year and adults with CHDs are living longer, fuller lives than ever before.  Your support will continue our progress.

The Congenital Heart Walk is an exciting joint effort between the Adult Congenital Heart Association (ACHA) and the Children’s Heart Foundation (CHF)! This effort will raise funds to help both organizations continue their missions to address the needs of both the newly diagnosed and long-term survivors of congenital heart defects, in a truly inspirational day of sharing, caring and fun.

As you have read, fighting congenital heart defects for our family is personal. Please support our efforts by joining the team or making a donation today at http://congenitalheartwalk.kintera.org. The walk is on June 9th at Griffith Park.


Thanks in advance. We look forward to hearing from you soon!

Yours truly,

Jess & Wes

5 weeks in the hospital, 5 weeks home and then back in the hospital for 4 days

The past week and a half have been busy! Two weeks ago, Alexander had his pediatric appointment. All was well until his doctor tested his oxygen saturations using a Pulse Ox machine (a band is placed on either hand or foot to gain a recording of the oxygen saturation) and the results showed 72 (oxygen level was at 72%), in which Alexander's levels are typically in the high 80's. The pediatrician wasn't concerned because Alexander was healthy and his color looked great. I, on the otherhand, was not comfortable with that, so I emailed his cardiologist to inform her of the results. I didn't hear back from her, and since she wasn't concerned, I relaxed...

A week ago, Alexander had his cardiologist appointment. When we arrived, Alexander was sleeping in his car seat and so the nurse suggested to leave him in the car seat and that the pulse ox would be placed on his hand. The test showed a 58%! So, the nurse placed the band on his other hand (we don't always get a good reading the first time), and the results showed in the 60's. So she suggested to place it on his foot, well that required him to be woken up, which was fine with me, because I was beginning to worry. Waking him up however, upset him, so now the readings had been taken from both feet, several times, and were jumping around from the 70's to the 80's. The nurse then wrote down 82, because that was a number she was getting more often. When the cardiologist came in, she stated that she might check his oxygen again at the end of the visit because it was varying. After she completed her check up, I asked her if she received my email about Alexander's oxygen sats being at a 72% at his pediatrician appointment. She replied she hadn't received it and that in the future, if I don't hear back from her, it means she didn't get it and to email or call her because she always responds back. She replied that his oxygen sats shouldn't be in the 70's because if they are, then he is ready for his next surgery! (I'm not ready for that by the way!).  We (Grandma Jeannie & I) then left the visit and went downstairs for lunch. As I was eating my lunch and watching Alexander sleep in the car seat, I felt a little unsure about his oxygen levels and decided to get another test done. I went back into the cardiology office, talked to his cardiologist, who said that we could test his oxygen levels again. Sure enough, he was bouncing from 60's, to the 70's to 80's, to 60's. With that, she suggested for him to be admitted  overnight for observation.

Alexander was placed on oxygen, had another echo cardiogram done (which he didn't like and screamed loudly because the tech was pushing on his pacemaker, trying to get a clear view of his Pulmonary Artery). The echo cardiogram showed that Alexander's blood flow going through the Pulmonary artery, where his PA band is, has slowed down because a muscle behind the heart is somewhat blocking the blood flow. They suggested to put him on beta blockers, but to wait until a baseline was retrieved of his oxygen levels.

Friday came with still no answer of why his oxygen and pulse rate were fluctuating. The talk of going home with an oxygen tank was discussed or possibly having his Glen procedure sooner than later-which began to freak me out! The doctors took blood and did a chest x-ray to rule out other possibilities. The blood test showed that he was slightly anemic and needed a small blood transfusion ( I believe this would be number 7 for him). As you know, Alex has had several transfusions, all which have helped his oxygen level increase during our previous stay. When preparing for the transfusion, a lab tech came in and took blood using a needle and then an IV line was placed in his foot (which he screamed). The transfusion happened over night and on Saturday morning, I woke up to a lab tech waking Alex up to take blood to test his blood count. As I watched, the  lab tech had pricked Alexander's heel and was squeezing the blood out, making Alexander scream! When I asked why she couldn't just use the IV line that was in his foot, she said that wasn't possible and "how else should she take blood, by a needle?" UM YES!!! I told her that another tech did yesterday and he barley cried. She just continued with what she was doing and said this was the way it had to be done. I then find out, that  using a needle to pull blood is a better procedure than what she did! I was one upset mommy! After that mess, Alexander's oxygen saturation were in the high 80's to low 90's and the talk of heart meds and going home with oxygen was off the table. We were discharged Sunday morning and have being doing good since!

So happy to be home!

We are trying to get back into a routine now. The routine that was in place was more because Alexander's oxygen levels were low resulting in him sleeping more and eating less. Even though this was occurring, he was still gaining weight and as of Tuesday, he finally hit 8 pounds! He weighs 8 pounds 3 ounces yesterday! I'm so happy he has finally reached 8 pounds, that he is much more alert now, and I hope it continues for the next couple of months. We did ask the doctors if a blood transfusion was going to be needed again next month an they said that most 2 month old babies have low blood count and that the next couple of months his red blood cells should be maturing. We are working on getting a pulse ox machine to have at home, to check his oxygen sats when we see a change (which I did a few weeks ago but thought it was just him being a baby and constantly changing).

I've learned to always have an overnight bag in my car (as i was in the same clothes until Friday night) and to follow my mommy instincts. Hopefully we get it the Pulse Ox machine soon and before our visit to the cardiologist next week.

Sleeping with a smile!

Smile starting to appear!

Alexander is beginning to smile when he is awake! (he always smiles when he is sleeping). Looking forward to seeing more of that! 

Positive thoughts and prayers for a healthy Alexander are always needed!

Guess who is 2 months old today!

These past few weeks have blurred together but we are all doing good! Alexander is doing great with gaining weight. He currently weighs 7 lbs and 7 ounces! He continues to keep us on our toes, with him changing every day. Last week he had his mommy worried because for 5 days straight (7 lbs. 1 oz), he wasn't gaining or losing weight. Then the nipple shield that was used during nursing was removed and with the 3 bottles a day being continued, he is now gaining weight at a great pace.

Over the past few weeks, Wes & I have been working on getting Alexander into some sort of routine and we are still working on it. It seems that as soon as Wes and I get comfortable with a routine, Alexander changes it. Sometimes he sleeps all a day, sometimes not; sometimes he wants to eat every 2 hours and some days he has to be woken up to eat; some days he vomits and some days he doesn't; and so the ongoing question: is this a normal baby thing? or a cardiac baby thing?

Alexander having one of his "moments"

Being a mommy is GREAT but  challenging! I know all moms will agree with me on that, but I feel as though having a cardiac baby is a little bit more challenging. When Alexander cries for a reason I can't figure out (feeding, cold, hot, tired, and diaper changed, have all been ruled out) I wonder if something is hurting him internally. I could give him Tylenol but I don't want to give my son drugs if he doesn't for sure need them...so he cries it out, turns a red, blue, purplish color until something distracts him (usually this involves going up and down the stairs or playing heavy metal or country music!). The part of not knowing why Alexander is crying after all variabes have been ruled out is what I don't like dealing with but have been told "that's normal..."

Our life saver!

 

Alexander"s  cardiology and electrophysiologist (pacemaker doctor) appointment he had  two weeks ago, went great. Both doctors were pleased to see how well Alex is doing. Alexander's Cardiologist stated she almost didn't recognize him! :) We go back to CHLA next week for another check up with his Cardiologist.
This week we were down at CHLA for an Ophthalmology appointment. We had the appointment because during his previous MRI (before his surgeries) the NP saw that his right optic nerve looked small.  His opthamologist stated that his optic nerve was small, but that he is small and that it is common for babies to have small nerves at this age. She also said that Alexander is far sighted in both eyes. Again-kind of normal, but she wants to see him in 6 months, to see how his eyes are. Overall his opthamologist said that there was nothing they could do about his eyes right now because he's so young and was surprised the NP suggested for him to come see her. So, the appointment was kind of a waster of time, kind of not. Tomorrow, Alexander sees his pediatrician. Alexander has been coughing and sneezing a lot more, so hopefully it is nothing and that his appointment goes well.

Wes went back to work last week and has been fighting with his allergies ever since. Lucky for me, that even though he may not be feeling the greatest, he is still helping me out and being a great dad. G-Ma Jeannie came to help out last week and Auntie Jenn helped us out this week. 

We are hoping Alexander will continue to gain weight at a good pace.We've been having play time during the day when not sleeping, eating, or being fussy and hopefully soon Alexander will start smiling at us during play time.

The positive thoughts and prayers are always needed for our little superman, to continue to stay healthy and grow! 

Boys "watching" NASCAR!

Easter picture!