A little bit of this and a little bit of that

My boy is 18 months old already, WOW! It truly amazes me how fast time flies. We have not had any major medical issues and things have been coming along great. He did get a cold that lasted almost two weeks but even that he took like a champ. He had an ear infection early on in November and then another one again during his cold but both times we had no idea because they weren't bothering him. Eli is not a fan of oral medications so it's been a real treat trying to get those in him.

As cute as they come! 

I've been going around in circles trying to get his synagist shot for him and I keep getting the run around. He is now a month behind because we had to wait for insurance to approve it and then the specialty pharmacy couldn't figure out which of our insurances to bill for it. Today after 3 phone calls and talking to two different pharmacy companies I was told they had contacted my pediatrician back in November. So now I have no clue who is supposed to be sending these shots and I'm awaiting a very not so pleasant call to the pediatricians office. I've decided that I will be finding a new office for the care of my son because they clearly don't place any importance on him. I'm not asking for special VIP care but they've failed me on numerous occasions and Eli's health is way too important to me. (Sorry I had to vent!)


On a whole other note but still heart related. I've been following a heart family on here and I've always kinda compared Eli to this little girl in the sense that they hadn't had many complications pre or post surgeries. I log on today to write a new post for Eli and come to find out that this little girl just recently had to have a heart transplant. I was completely shocked and frankly a little scared about our future. Just yesterday I was reading all of these comments about how HLHS is "Not life compatible". I had never heard such drastic words to describe it and thankfully our doctors have never used them either. The honest truth is that a heart transplant is more than likely in our future but hopefully way far down the line. I guess it just knocked the wind out of me from yesterdays readings to today's blog about the little girl.

Sorry if this update is a mess, my brain feels like a mess right now as well.

The past two months

   Where does the time go? It has already been two months since I last updated this blog. I guess since we haven't had any major medical issues I don't think to sit down and write a big long story. I'll try and catch everyone up.

Riding my giraffe tricycle

  Eli is now an expert furniture walker ("cruiser" as PT refers to it). He will pull himself up on the coffee table just so he can practice sitting back down and will now say up and down while doing it sometimes. He loves to walk while holding onto your hands and is getting better with just holding one hand. Stairs remain his favorite physical activity and can get up them pretty darn fast, especially if chasing our cat who he has named Meow.

 We just had his 6 month Early Intervention Evaluation where we sat down with his physical therapist  Meghan and his developmental therapist Lori and went over the plan of action for the next 6 months. We decided we will continue with the once a week physical therapy and will now do weekly developmental therapy as well. He has only been getting developmental once a month and we would like to see more improvement in that area. Eli does a lot of destructive rather than productive play although there have been advances in it this past month. I like to attribute most of the destructiveness to being a rough and tumble boy but I know he needs to learn to be productive soon to be a functioning toddler. He will eventually be in some sort of daycare where he will need to play and socialize accordingly.

On October 19th we had a big cardiology appointment back at Hope. We hadn't been there for heart related stuff since May so it was nice to get a full check up. His heart is looking great and keeping up with him well. I had expressed concern about his (thankfully) crazy amounts of energy, being a heart baby and all, that his heart wouldn't keep up with him like we need it to. They reassured me that his heart is doing just fine for him and that we will almost immediately realize when it  isn't functioning properly. We got the all clear to go another 5-6 months without seeing them.

Fast asleep on Grandma

So come March-April we will go back for a check up and schedule a cardiac catherization. He has had two of these before, one before the Glenn surgery last October and one in January to have his two stents placed. It is always a scary time for me because they are going into the heart to test pressures or do other things and anything can happen. I have time to stress about that and won't worry so much right now. Once we get results from the cardiac cath and see what the hearts functions are at we'll schedule his third open heart surgery. This one is called the Fontan and I'll go into more detail about that in later posts. What I know about it right now is its the second most complicated and the second longest hospital stay.

  Current health problem is his first ever ear infection that he refuses to take antibiotics for! How in the world am I supposed to get a 16 month old to swallow 5ml of nasty bubble gum flavored sticky goop!?! We went to the pediatrician this past Friday to do his 15 months (yes, he is actually 16 months) checkup and get caught up on immunizations. Due to his ear infection, that he has shown no symptoms of having, he was not able to get his shots. Now we can't get his medicine in him so I have no idea how it will be treated. We go back on the 9th to see if the infection is gone and to get shot 1 of the next 5 months worth of synagis shots. These shots are to help prevent him from getting RSV and spending a month in the hospital. Fun fact: the shots cost me $0 and cost my insurance $2,200 a shot (he gets 5 a year). Insurance HAS to cover them because it's cheaper for insurance to pay for the shot than it is for them to pay for a month in the ICU. Thank GOD for insurance!

I love books! 

  The goal for the next few months as we are coming into RSV and flu season: Keep Eli healthy!!! We want no illness, no heart problems, no feeding problems, no growth or development problems. We want a happy, healthy, walking by Thanksgiving, adding more words to our vocabulary, young boy.


  * PLEASE Do Not Take Offense*

Now comes my public service announcement/ warning/ statement. We love all of our friends and family and enjoy seeing everyone as much as possible, BUT, if you are even remotely sick in any shape and/or there is a slight chance you are contagious, please avoid us like the plague. We will not take offense if you need to cancel on us at last second, it is not worth it to us to risk getting Eli sick. What may be the common cold to you or me, could kill Eli within a day or two. Yes that may sound drastic but in our world, it's reality. I hate to sound like a buzzkill or debbie downer but I need to. I thank you in advance for your consideration!

The last 3 months!

  This summer has been crazy! I feel like even though I'm home most days with Eli, it has been a non-stop whirlwind of events. So let me trace my steps back and start from the end of May.


  Eli started having eating issues about two weeks after having his g-tube removed. He no longer wanted to take any food and was even pushing a bottle away for the most part. Things had been great for months and he took really well to baby food and some adult food. He hadn't used his feeding tube since mid January to eat so when he stopped eating I freaked out. A kid not wanting to eat one meal here or there no big deal, but he was flat out denying food entering his mouth. I felt like he was retaining water and he was looking a little puffy. We ended up taking him to the ER to make sure he wasn't in some sort of cardiac distress. The doctor said he just had some virus and to give it 10 days to pass. Ok, so we wait it out...

Eli's 1st time at the zoo! 

The day before his 1st birthday, I took Eli back to the emergency room. He went over 12 hours with no urine output, he was gagging and attempting to throw up (he can't physically do this) and he was just in some sort of funk. His cardiologist said get him to the hospital ASAP to have him checked out. His eating still hadn't improved and it was 13 days since his previous ER visit. They said he was dehydrated but his heart was functioning fine. They sent us on our way with some anti-nausea medicine in hopes it would improve Eli's desire to eat.

Five days later we went to his pediatrician because his eating was still not improving and you could tell just by looking at him he had lost weight. This was not his normal doctor so she was slightly overwhelmed with his problems and had us see his cardiologist just to make sure things were okay.

Well well well, come to find out my big boy got all 4 of his first molars within this time frame of 2-3 weeks. He also no longer wanted to eat baby food he was ready to move up to big kid food. Eli has gained all of his lost weight back and then some back. He's like a real human now.

Sitting on my own! 

He has been doing weekly physical therapy since the first week of June and has just blossomed by leaps and bounds. He went from not being able to sit up or crawl to furniture "cruising" (therapy term) and beyond. Clapping and dancing are some of his favorite movements and anything that involves using his very loud voice. He definitely fits into my side of the family.

We celebrated his 1st birthday with a nice party on June 23rd and a bunch of our loved ones came out. He had a nice time being the center of attention. I just kept thinking the whole time, a year ago we weren't sure we'd even get to the 1st birthday!

July was a very rough month for the family. I lost my Dad and Eli lost his Grandpa. Those two were crazy about each other and Eli would always get the biggest smile on his face when Grandpa would walk in the room. I know my Dad was so proud that Eli was named after him and would brag to anyone who would listen that his favorite (and only) grandson was named Eli Randall. The evening my Dad passed away, I wasn't sure if he even knew we were there but he definitely knew Eli was. He was the proudest Grandpa and I will make sure Eli knows that as he grows up.

Now as August comes to an end we hope to continue working on Eli's skills. He does such a great job furniture "cruising". My goal is walking by Halloween so we'll see how we do.

My 1st Mother's Day and then some

This past Sunday I got to celebrate my first Mother's Day with my very special little boy. It was a great day spent with my boys and then later on with the rest of the family. Eli got to see his cousins (really my cousin's kids) and he just loved fitting right into the family. You can tell he really wants to be more mobile and able to play with kids, he is just so entertained by people it's wonderful.

 We are STILL waiting to hear back  from Early Intervention. We did his evaluation on April 17th or so and he  qualified to receive both physical and developmental therapy. They are taking their sweet time getting back to me about who will be his therapist and when we will actually see them. I've called and left numerous messages but have yet to get a response, this mama is getting frustrated. He is really working on crawling, it's just those darn arms of his he hasn't figured out yet. I'm surprised he hasn't given himself some sort of carpet burn when he manages to push off with his legs. Like I've said before he can roll anywhere he wants to go so he just doesn't find much necessity in the crawl. He still fights us on sitting on his butt too, he really just wants to go flat and roll. He will sit if there is someone sitting behind him supporting him but even that doesn't last very long. Either way I'm sure he will get there and once he does catch up he will be a mobile madman.

We went to the cardiologist a week and a half ago for his monthly check up and Eli is doing great. He was happy with his progress and test results from his 24hour holter monitor and his echo and ekg look great. We have now progressed to the every 4 months appointments! Yay!!! 

I am so happy and relieved to say that Eli got his mickey button (feeding tube) removed today! He did so well and only cried for maybe 10 seconds, such a strong boy. He did develop some keloids around it so we are hoping it will heal on its own without having to be stitched up. If it does have to be stitched up that would be considered a surgery and he'd have to be sedated. I was planning to schedule his circumcision at that time if surgery was required since he would be sedated anyways.

Eli's 1st birthday is planned and invitations are officially in the mail! Time flies when you're having fun! Through all of the ups and downs and scary times in the past 11 months I can honestly say Eli has made it all worth it. I couldn't ask for a better child! I told my friend yesterday, he has turned into a little person and not so much of a baby anymore :( I am lucky in the sense that I got an extended version of him being a baby.

10 Months!!!

It's been almost two months since I last posted on here, I apologize!

9 months! 

Eli has been doing great! I'm so proud of this little guy, he has more energy than I know what to do with. He is so strong it is literally exhausting trying to hold him or  keep him contained. Even though he is not sitting or crawling yet (we're working on it) he can roll himself just about anywhere.  We have done our initial "interview" with Early Intervention to get him help with his gross motor skills. He is on target with everything besides crawling and sitting, he will only sit for a short amount of time but then will stiffen his back out to lay flat.

Eli has 5 teeth now and loves to use them to bite just about anything. He will eat any food you give him and enjoys every flavor of baby food. He's also had some table food like avocado, refried beans, french fries, tomatoes, and a few other random things. Previously we were under certain restrictions to not have too much excess liquids because it's hard for these heart babies to get rid of it, so his bottle feedings were very specific amounts. I am happy to say at the end of March all restrictions were lifted and we were told to feed him "what he wants, when he wants it". He was eating every 3 hours except in the middle of the night and would only get a certain amount of formula or rice cereal mixed with baby food. We were/are used to that schedule so Eli still sticks to those time frames pretty much but you can tell he is increasingly hungrier.


In February at his monthly cardiology appointment they took him off of all medicine except 40.5mg of aspirin. That was a huge step for us and helped us out financially as well. At his March appointment we had to do a 24 hour test where he was hooked up to a Holter Monitor to check his heart rate during all aspects of the day. Since Eli was taken off of his medicine in February to regulate his rate and it can last in your system for some time, Dr. Husayni wanted to see how Eli was doing at regulating it himself. We don't want any more very scary atrial fibrillation episodes like we did last July that landed us in the PICU for 3 weeks.

When we go back to see Dr. Husayni in two weeks we will get the results of that test, which I assume everything went well since we didn't hear anything. Eli will have an echo cardiogram done at this appointment as well to ensure that the two stents placed in his heart are doing their jobs. If things look good the doctor may even take him off of his aspirin which would mean a medicine free Eli! That is a huge accomplishment for these babies, like HUGE!

On April 17th we will be meeting to see if Eli physically qualifies for therapy. You have to be more than 30% behind your age group goals, but we were told he may qualify just based off of his heart problem. I am hoping he qualifies because I want him to catch up and be able to sit up. He would be a happy baby too just knowing he can get around that much easier instead of rolling.

10 months and eating squash!

Can you believe I'm already planning his 1st birthday!?! I feel like the first 3-4 months of his life went by so slow and now these last few months are flying by. I guess maybe because things have been going so smoothly and we haven't had any real setbacks that things have flown, for that I'm very grateful! Let just keep things on pace as they are, him growing and learning and discovering new things everyday. Oh I almost left out that he has a few words, his first word was Mama! He also knows Dada and gaga which I think he uses for grandma. He came down with a cold a few weeks ago and every time he would cry grandma would say to him "mama?" and that evening as we all sat down to eat Sunday dinner Eli said it clear as day. I was so proud!

I promise not to take so long to post next time, like my mom says "no news is good news!".

Happy Valentine's Day!

Sorry I am behind on posting but I am happy to say I've been busy with a very active little boy! Eli turned 8 months old a few days ago, yay!!!

Rolling around with monkey in his mouth

I don't honestly have much to update about since things have been going so well (knock on wood). He is non stop movement even though he doesn't crawl yet. He can roll anywhere he wants to get at pretty much. We are working on him sitting up since he should be able to do it already. He loves to eat and wants to drink and taste whatever it is you are eating or drinking. We have yet to find a baby food he doesn't like which doesn't surprise me in the slightest.

   I should say we no longer use the feeding pump and tube!!! That is a very big accomplishment for cardiac babies, so hooray!!! The only time we have to use his g-tube is to "vent" him. Like I've said before Eli cannot burp so he gets huge air bubbles in his tummy that cause him discomfort. If he isn't able to pass gas fast enough it just gets worse so we connect the tube and open it to release the air. We wish there were a better solution but currently that's all we have. The doctors said his nissin (stomach surgery that prevents burping and acid reflux) will relax and stretch as he grows so he'll eventually be able to burp or vomit when needed.

8 Months Old! 

Next Thursday we go to see his cardiologist for his monthly checkup. He should be taken off 1 more medicine if all looks good, that would leave him with just his half of a baby aspirin. I'm anxious to see how much he officially weighs since I feel like he is huge now. My mom weighed him last night at got 15.2lbs so we will see how close she was.

My first 2 teeth! 

Well Eli is napping so I think I will join him. I will update again after his cardiologist appointment.

Star Patient

If there were ever a perfect doctors appointment, I believe Eli had one on Friday. We had an early morning appointment with Dr. Husayni (pediatric cardiologist) and I was sure it would be a long one due to his recent stent placement. He came in and immediately was impressed with how well Eli looked and how much bigger he is within a months time. Both Dr. Husayni and his nurse looked over him and said things sound and look great. They were happy with the results from the recent cathertization. 

So Sleepy!

 Eli weighed in at 14.25 lbs (he was 12.36lbs on January 6th) and is 24.5inches long. They want us to do mostly bottle feeds and leave the gtube use for medicine and any feeding Eli doesn't want to do by bottle. The bottle rejection happens every once in awhile but typically he loves his bottle. We should also relax on the strict eating schedule and let the hunger kick in. He needs to learn when he is hungry rather than knowing he gets fed at certain times. 

We also got great changes to his medications. Prior to his appointment he was on a few different medications:

 Amiodarone to control heart rhythms from his July hospitalization

 Lasix to keep off excessive fluid, hard for heart babies to handle

 Lansoprazole  "prevacid"for acid reflux

 Sildenafil "viagra" to help blood flow easier through compressed artery. 

Aspirin acts a blood thinner so body doesn't reject the stents

 Now he is just on Amiodarone probably until next month's appointment, lasix until this coming Friday, and half of a baby aspirin. The doctor said that when he comes back for his check up in four months he may be completely off of medicine. Talk about a miracle! It makes me very proud that he continues to do so well. 

As we were leaving, the speech therapist caught us and asked us to spend a few minutes with her so she could evaluate Eli again. She was happy with Eli as well, and said he made nice improvements since December. His neck was favoring a certain side previously and they gave us exercises to do to help stretch him. We no longer see that happening, they were worried about muscle forming awkwardly. 

Using his "big boy" cup

Both Dr. Husayni and the speech therapist said "Eli is one of our star patients". This was two separate conversations in different areas of the hospital so it wasn't like they were feeding off of each others comments. It makes Rafe and I very proud and I'm sure Grandma and Grandpa as well. 

7 Months!

7 months old!

Really? Seven months old already? No way! Well I will say today Mr. Eli was not his usual charming happy self. I'd love to blame it on the full moon or teething but I think it was a lack of stimulation. He had three days of people constantly around and noise a plenty.

Friday morning I woke up at 4:09am due to the carbon monoxide detector beeping. It wasn't beeping like it was an emergency but more of a dying battery. Thanks, it's not like I didn't have to wake up at 4:30 anyways. I got out of bed and went into the hallway and gave that thing a good stare down and said a few choice words at it. What do you know, it doesn't have the nerve to beep again or ever since then. Ugh!

In Recovery

Five thirty in the morning we are on our jolly way to Hope Hospital for Eli's cardiac cathertization. We've been through this before but now we were more than likely facing the placement of a stent. The procedure started and around 9:40am we got the update that they needed to place a stent and it would be about another 45 minutes before we got to see Eli.  At about the 35 minute mark we got another update that they needed to place a second stent because the area was longer than one stent could support. I was not very surprised by this because we knew back in September it was a rather long area of compression. The procedure went well and his only marks are slightly larger than an IV mark, one in his groin and one on his neck on his right side.
 
  We spent the night with him at the hospital and I must say that was not fun at all. I don't do well with noise at night so Thank God I had a pair of ear plugs in my bag, talk about a lifesaver. Before bed I checked on Eli's gums and found that one tooth came out. I originally thought it was two but the second one has yet to come out. I'm so proud of my big boy!

Tonight for his seven month "birthday" he got to try peaches for the first time. Yummy!

Daddy feeding Eli peaches

Happy New Year!

My 1st Christmas!

I hope everyone had a wonderful Christmas and a great New Year. It was a very fun one for us celebrating Eli's first. Rafe had a five day break from work so we got a lot of play time in with him and got to go see some of his family also. My mom and I got to do our Christmas Eve tradition of going downtown and walking Michigan Ave and the weather was great so Eli joined us as well.

On to the main topic, Eli, he is doing great! This coming Friday Jan. 6th he is going in for another cardiac catheterization and more than likely a stent will be placed in his left pulmonary artery (LPA).  When we did his post surgery follow up with Dr. Husayni, the pediatric cardiologist, we had a three hour appointment that included two echo's. They found that his LPA was being compressed by a larger artery so they are worried about it and want to check it out better and fix if necessary. If a stent is placed he will spend the night at Hope and have an xray and echo in the morning. There are of course risks and it is always scary when they are put under sedation and intubated. I worry about his throat and vocal cords.

My Un-Birthday! 6 months old

We saw his speech and physical therapist right before the holidays and they were happy with his progress. He has great neck control now and we are slowly working on sitting up and back strength. He eats rice cereal and baby food once a day and LOVES it! His bottom two teeth are about to pop out any day now and is currently causing him a lot of pain. Eli has such a wonderful personality and could spend the day laughing and smiling. He loves to stomp his legs down while laying on his back. I think he enjoys the boom it makes because he sure has some strong legs. He loves to grab and shake things and has learned that his toes exist and that they are fun to grab. He is a major flirt also. Oh yeah he also learned how to blow raspberries and is working on kissing us on the cheek.

New Years Eve!

For this new year I am hoping for nothing but progress and wonderful new adventures in Eli and our lives. He is such a smart kid and brings so much happiness to our world.