Fixed eyes, a head injury and an M&M's addiction

I have much to share! I'll start with the best news. Elijah got his new glasses! Could any kid be better-suited for glasses than him? They suit his personality very well, I think. He did ok with them today, but did not like the patch at all. He has to wear a patch on his right eye for two hours every day, and I have a feeling this is going to be quite a daily struggle (like we need more daily struggles). Patching his good eye makes his other eye work pretty hard, which is good (for his eye) and bad (for those who have to deal with the complaining).



Two days ago, I was upstairs working on my blog and Dan was downstairs doing the budget (his favorite thing). Sammy was taking a nap, and Elijah was having quiet time at the computer. All of a sudden I heard chair legs screeching on the floor, followed by a splat and a murderous Elijah scream. He had somehow fallen off his chair and landed head-first onto the tile floor. A huge bump formed very quickly on the back of his head. I probably would have been comfortable not bringing him to the hospital if the bump had been our only concern. A few minutes after the fall, once he had calmed down, he started complaining about not being able to see us. He kept saying that his head was "up and couldn't get back down," and then he would say, "Mommy, I can't see you!" I brought him to the ER immediately. I know enough about head injuries to know not to waste time when neurological symptoms are present.



The ER doctor said he had a good deal of swelling and because he had complained of vision problems, a CT scan was ordered. The results were normal. He had suffered a mild concussion, but nothing was structurally damaged. The nurse told me to expect him to be "off" for about a week, but those vision complaints within 10 minutes of his fall were the only "off" things we have witnessed.



He was such a BRAVE BRAVE BOY during the CT scan. He had complete trust in me when I told him that nothing was going to hurt. He had to get "tied down" pretty tightly for the scan, and he did great. He's maturing! Just a short time ago, he would not have done well with that. I was very proud of my boy. Then we sat together on a bed in Room 16 and snuggled and talked and hugged and sang songs while we waited for the results. I don't know exactly how to explain this, but it was a weird experience for me. Sitting in a hospital with that special little boy of mine always, no matter what we are there for, brings me to tears. Happy, sad, thankful, sorrowful tears. I tried to put it into words to explain to Dan, but I couldn't. I can't explain it. There's just deep-rooted emotion there that I don't believe will ever go away. Elijah + hospitals = emotional mama.



The bump on E's head is still there, but he seems to be doing just fine. It has not hindered his sass or pooping-in-pants at all!

Our sweet Sammy needs rehab for his M&M's addiction. I had some left over from a recipe I made the other night, so I gave the boys each a small handful after dinner. Ever since then, Sammy has been asking for M-N-M-N-M (stick your tongue out on the Ns) about every 5 minutes. He gets such a funny little concerned look on his face when he asks for them. He's an addict!

And in other news, since being unemployed (or I should say since being SELF-employed!), I have been a home-organizing lunatic! After literally YEARS of carrying the I-don't-have-time-to-take-care-of-my-home burden heavily on my shoulders, I finally have time to take care of my home! I am loving this! Dan has helped me to create an office for myself in our loft, where I have been spending a few hours every day doing blog work and photo editing. We have also gone through all of the boys' toys and put three large bags in storage (aka, our messy garage). I have also sorted through my ridiculous pile of cooking magazines and organized them. Today I washed couch and chair covers. I am consistently CAUGHT UP ON LAUNDRY, which is the absolute strangest thing on the planet. When I was working full-time, I was never ever caught up on laundry. NEVER. And the best thing of all is that I get so much quality time with my precious boys. Spending this time with them is very special to me. Getting Elijah on and off the bus every day is indescribable. Snuggling with Sammy endlessly on the couch is the best. I love having this time with my boys!

I have another organizational project for tomorrow that I'm excited about! I'll take before and after pics and share. Fun!

Thanks for checking in on us! More later!

OHS #3

When Dr. G tells me to call him on Thursday afternoon, you better believe I am going to call him on Thursday afternoon! My heart started to race as we began our phone conversation. I hoped maybe he would say that he was wrong, way wrong, and that surgery wouldn't need to happen for another five years. Ha! I can dream, right?

After reviewing Elijah's case in this morning's meeting, E's surgeon thought that OHS #3 should happen within the next 3-5 months, August being too far out. The valve replacement should be a breeze, relatively speaking, but there is a pesky little area in Elijah's right pulmonary artery that will need to be patched (the same area where a stent currently resides) and that will be the "tricky" part.

Dan's and my initial thoughts are that we want to get this done asap. Of course, we also want to put as much separation between cold/croup season and surgery as possible. The end of May or even into June would be ideal, but since we are not ultimately in charge of timing we will just wait and see how things pan out. Scheduling is due to call us in the near future so we can get a date on the calendar.

I scheduled appointments with both Elijah's ENT doctor and his pulmonologist to get their thoughts on our croup-prone child being intubated for 6 hours for open heart surgery. I sense that another bronchoscopy will be happening in the very near future as a part of all of this.

2010, I miss you!

Yurinator

It's hilarious that Elijah's urologist's first name is Yuri. Back in college, you know his fellow frat boys were yelling, "The YURINATOR!! WWOOoooooooHHOOo!" Actually, maybe not, because based on the way he treats us, one might think he didn't have many friends. We realized today how lucky we are that all of Elijah's other doctors have COMPASSION and BEDSIDE MANNER. It is obvious that this guy is very good at what he does. He does not falter in his knowledge at all and is obviously a confident, skilled doctor and surgeon. This is the only reason we will tolerate waiting for an hour in his waiting room only to spend 90 seconds talking to him, at which point he says to me in a very degrading manner, "We want what's BEST for your child," as if I don't want what is best for my child!

He had told us after Elijah was born to come back when he was 11 months old so that we could do his hypospadias surgery when he was 12 months old. So here we are, in his office when Eli is 11 months old, just like he asked. He asked about Elijah's upcoming heart surgery and we said we don't have a definite timeline but that we're guessing it will take place June-ish. He said, in a very you-should-have-known-this tone that in order to get his hypospadias repaired, we first had to get clearance from cardiology. Uh, ok...sure, we can do that, but why did we drive all the way to downtown Minneapolis just to hear that? This is when he said, "We want what is BEST for your child. Why would we do surgery now if cardiology doesn't clear him for it?" Angry Mommy responds with, "That's why we're here! We do want what's best for him. We're here because you told us to come back at this time." And he exited the room like a lightning bolt.

So now we'll call cardiology and figure out whether his hypospadias can be fixed now or if it will have to wait until next fall.

If only ALL DOCTORS treated their patients like our dear Dr. Gremmels does. We love Dr. Gremmels! And Dr. Snook! And Dr. Moga!

I have to share one funny thing from our appointment today. As we sat for ONE WHOLE HOUR in the cramped waiting room, we were able to entertain the other people sharing the waiting room with us. Elijah was soooo loud, jabbering and grunting non-stop. There were a few other babies just staring at him like, WHY ARE YOU TALKING SO MUCH, YOU CHUBBY, CURLY-HAIRED BABY? It was really funny. Other parents kept chuckling and saying to us, "He likes to talk!" It seemed like he really enjoyed having an audience. If someone got up to leave the room, he would look at them as if to say, WHERE ARE YOU GOING?!? I'M ALMOST TO THE FUNNY PART!


I know I've probably worn out my welcome for prayer requests, but we need more prayers for Baby Isaac, who is having an unexpected heart surgery tomorrow. Poor little guy, he and his family have been through so much. There has been so much going on this week with my heart babies! :( It has been a really sad week. Thanks for praying for and following the angels Madeline and Kate. They are in Heaven now and watching over all of us!

Elijah + avocados

Messy cottage cheese-avocado feast with absent left sock

We think Elijah might be involved in a gang called the Left Foot Mafia. Every time we put socks on him (which is often here in FRIGID Minnesota) he removes only the left one and then continues about his play. Perhaps his left foot is always a bit too warm? I don't know, but it's pretty funny. The right sock always stays on.

Eli has a urology appointment this Thursday. We've had such a nice reprieve from doctor's visits, so it makes me sad that we're headed back into doctor and hospital territory. Next month hypospadias surgery will happen (see Elijah's Story tab if you want more info about this) and also a cardiology check and a 12-month well visit. Last week I was positive that his lips looked more blue so Dan brought him in to get his oxygen sats checked. Amazingly, they were exactly what they were a few months ago (80-84%) so we were very happy to hear this.

Our chubby boy is getting so smart! You can just see that he understands a whole lot more than ever. He now knows how to knock over his tower of blocks when I ask him to and when I get to that part in the Itsy Bitsy Spider when I tickle his neck, he anticipates it with giggling winces. I can't spend enough time with this person. I can't get enough! I wish I could just put him in my pocket and take him everywhere with me.

I'll try to post a lot of fun, cute, positive things before we are headed back into the land of doctors. Here are some fun pics to start off....


Cottage cheese face


THIS is a fat knee


Do you think Daddy dressed Elijah (this tummy moment is very rare, by the way)??


Splashy bath man. WOW does he like to splash.

9-mo. appointment

We took Elijah to his 9-month check-up today and everything looked great. His sats ran right around 82-84%, he weighed 19 lb. 3 oz. and his lungs sounded perfect. Dr. Judy said he looked amazing. We don't have to take him back till his one-year check, so assuming everything will go as planned and that no more sickness is in his near future, we won't need to see a doctor again until February! This would be wonderful.

Elijah started doing something yesterday that I have been giddy about all day. It seems like such a small thing, but with as little progress as he has made in some areas and after being told how "far behind" he is by the Early Childhood Intervention team, the fact that he can now wave bye-bye puts tears in my eyes! He started doing it last night and has been doing it non-stop since...of course, except for those 10 minutes I tried to get it on video tonight. I did get this new funny noise on video, though....



Dan was going to get in the pool with Elijah for swimming lessons tonight but just as we had gotten to the pool area, everyone was getting out of the pool because there were little bits of poop floating around in it. We were bummed, but I'd rather have to go back home than have Elijah swim with poop.

One last thing and then I'm heading to bed. A fellow heart baby, Madeline, is in serious need of prayer right now. She has been in the hospital for 4+ months literally fighting for her life. Just recently, she improved to the point where they had set her discharge date for tomorrow (Tuesday). She was doing great and was ready to go home. Sunday there was another unexpected setback and now no one is sure what is in store. If you'd like to visit their website, I have her link listed on the right. If anyone in the world needs your prayers right now, it is Madeline. This little girl has endured more than anyone should ever have to.

Elijah's story

In July of 2006, six weeks after our wedding and while on our honeymoon in the Bahamas, Dan and I found out that I was pregnant. We had a few days of excitement before the worry began. From the very beginning, the pregnancy was a difficult one. We had reason to think we had lost the baby a few different times. I had a constant feeling that something just wasn't quite right.

At my 20-week ultrasound, my fears were confirmed. Something was wrong with the baby's heart. The information that the doctor initially gave us wasn't entirely accurate, which led to a lot of uncertainty and emotional turmoil. The fear of the unknown, we learned, can be crippling. I had to get an amniocentesis procedure a couple different times and I had a few more ultrasounds before we learned the details about our baby’s problems. The time between learning something was wrong and finding out exactly what was wrong was a difficult time. Once we had some sort of idea about what to expect and prepare for, we felt significantly better about the situation and we felt ready to tackle it.

When I reached my 29th week of pregnancy, the contractions that I'd been having since week 25 became more frequent. I spent a few days in the hospital to monitor them and to attempt to slow them down. I tested positive for fetal fiber-nectin, which meant I had a very good chance of going into labor sometime within the following two to three weeks. By the grace of God, my body held out for another seven weeks.

I spent those seven weeks on strict bedrest and didn't lift a finger besides to shower, use the restroom and attend doctor's appointments. Dan was wonderful during that time. He did everything for me so I could rest and so that the baby would keep growing in my belly.

On February 19th, at 36 weeks pregnant, I had a particularly difficult doctor's visit. I came home feeling more overwhelmed, sad, frustrated and scared than ever. I was tired of the constant bad news that every doctor’s visit brought. The baby wasn't growing as much as he should have been, so there was continual worry about his small size and why he wasn’t growing much and whether or not he'd continue to thrive or even survive at all. I completely broke down. The stress had caught up to me. I laid in bed and cried. I had a chat with God that night. I asked him to finish this chapter, no matter what that meant. Six hours later, at 2:00 in the morning, my water broke. It was time. My prayer had been answered.

Labor progressed quickly (you can read the full birth story here). I was in labor for seven hours. We attempted to deliver the baby but his heart rate kept dropping into a scary range, so the decision was made to do an emergency c-section. At 9:55 a.m. on February 20th, 2007, Elijah Daniel Porta was born! He was beautiful and perfect. He weighed 4 lbs. 14 oz. and was 18 inches long. Even though he was four weeks early, he didn't have a single prematurity-related complication. Thank you, God. His heart diagnosis was tetralogy of fallot with pulmonary atresia and MAPCAs. He had a few other anomalies that were found at birth: his right kidney had failed to develop so he had only one functioning kidney, his urethra didn't fully develop (hypospadias), and he had a sacral dimple. All genetic testing came back normal, so these anomalies were not related to a genetic disorder.

He has functioned just fine with his solitary kidney, and we don't foresee it causing any problems in the future. His hypospadias was surgically repaired in August of 2008. An ultrasound was done of his sacral dimple at birth, which revealed (incorrect) good results. At 28 months old and still not close to walking, we decided to look into it further. An MRI revealed that Elijah had a tethered spinal cord. He had the surgery to release the tether on June 18, 2009, and six months later, at almost three years old, Elijah started walking.

We had initially thought that an open heart surgery would need to be done within a week of Elijah's birth, but along with the MAPCAs portion of the diagnosis came extra collateral arteries that helped blood get where it needed to be, so immediate surgery was not necessary. We were told he would need two to three heart surgeries within the first few years of his life, the first being somewhere around six months of age.

Elijah was in the NICU for three weeks after birth, gaining enough strength to eat on his own. His heart condition made his little body work extra hard, so he tired very easily. We brought him home with a feeding tube, but pulled it out after just a few days because he started chugging down milk on his own.

He grew quickly and never had a problem eating once we got him home from the hospital. All of his doctors were amazed at his progress, considering the extra work his body was doing. At two months old, he had his second heart cath because his oxygen saturations were low (in the 60s). The cath revealed that surgery would need to be sooner than anticipated.

Three weeks later, on May 25th, 2007, Elijah had his first open heart surgery at three months old. Dr. Moga, his surgeon, placed a temporary conduit (shunt) that acted as his pulmonary valve into his heart and he also redirected some of his collaterals that were supplying duplicate bloodflow to his lungs.

Elijah unexpectedly thrived after his first surgery. His weight gain continued to surprise all of his doctors. He started out not being on the charts because he was so teeny and it didn't take him long to get to the 50th percentile for both height and weight. This is not typical for a lot of heart babies, and was a huge blessing.

Initially Dr. Gremmels, Elijah's cardiologist, told us that his second open heart surgery (the "total repair") probably wouldn't need to happen until fall 2008, but with as fast as our boy grows everything comes sooner than expected. In February-March 2008 Elijah's oxygen saturations began dropping quickly and a heart cath revealed that surgery would need to happen soon.

The weeks leading up to his second surgery were tough. His health declined rapidly. His oxygen sats ran between 40% and 65%. He had blue lips and purple fingernails. He got sick often and his body was not able to fight anything off. He had a few scary blue spells because his body had little tolerance for anything out of the norm, such as taking a bath. He threw up often and had scary, high fevers. His body was READY to have a fixed heart!

On April 15th, 2008, Dr. Moga completed Elijah's total repair. He was able to do everything he set out to do. He replaced the conduit with a bovine valve, fixed the VSD (hole) and placed a stent in his right pulmonary artery. The surgery went flawlessly and the recovery had no unexpected bumps. We were told to expect a two-week stay in the hospital but we were home in eight days! He is a rock star!

Three years later, in February of 2011, another cath revealed that Elijah's valve needed to be replaced. Somehow this came as a surprise to us, and I was sent into a tailspin. The year following that news was the darkest of my life to date. Thankfully, God took care of us and I was able to accomplish the most important task during that time--taking care of our precious boys! Our little Sammy was now a part of our lives and was nearing his first birthday.

When I think back on that time, I picture myself shriveled up and in tears and I picture Elijah as happy and smiley as he always is. The stress did not affect him negatively, and I am constantly thankful for that. He absolutely kicked that third surgery's butt, which occurred on June 10, 2011. Dr. Moga replaced Elijah's very tired and enlarged valve (we saw pics...it was very distorted and enlarged). He now has a cadaver valve since that turned out to be the best fit for his anatomy at the time.

Elijah was extubated the day of surgery and he experienced no post-intubation croup or complications, which was a miracle considering his history with croup (which began around age three, especially after being intubated). Everything about that recovery was smooth and miraculous. God took care of us. Our strong four-year-old came home after five days in the hospital! Seven days after being operated on, he was running around the zoo (gently). It was incredible.

He will need at least one more open heart surgery to replace his current valve, which he will eventually outgrow. The cath he had in April of 2013 showed no issues with pressures or function, so we are praying for a few more years without a heart surgery before it needs to happen again. Heart caths are the exception, as he has had and will need these yearly(ish) until he is done growing.

In the fall of 2012, we discovered that Elijah could not hear out of his left ear. Upon investigation, we found that he had yet another congenital anomaly that did not present itself until he was nearly six years old. The anomaly itself is extremely rare, but the fact that it didn't present itself until he was five was typical. A mass of tissue called a cholesteatoma had grown near and was pressing up against his eardrum, causing loss of hearing. The mass had grown so large that it had literally dissolved almost 100% of the bones inside of his ear. The surgeon removed the mass, but was unable to do reconstruction since the bones were absent. In October of 2013, Elijah will have a prosthetic device placed to hopefully restore hearing in that ear.

Academically, Elijah is on par with (if not slightly ahead of) his peers. He began reading at age four-and-a-half and his intelligence shines every day (i.e., he constantly outsmarts us). In almost every other area of development, he is delayed. Gross and fine motor skills continue to provide the biggest challenges for him. Climbing stairs are difficult and he prefers to have his feet firmly planted on the ground at all times, unless he is in a swimming pool (his favorite). He has a difficult time with buttons and zippers and anything requiring finger/hand strength. He is followed by special education services through his school for speech and physical therapy and he also receives outside services for occupational and physical therapies. His speech has come a long way, but he still has difficulty pronouncing a handful of sounds regularly (TH and L). With all of that said, he has come so far. He has overcome some major obstacles in a short period of time. We are so very proud of him.

Elijah had an incredible kindergarten experience and he had the most special, caring team looking out for him. We feel blessed beyond words about the people God has put into his life, medically and now with his educational and developmental experiences, as well. We are looking forward to this new chapter called first grade!

We have dealt with behavioral issues off and on with Elijah since his last open heart surgery in June of 2011. He seems to need more sleep than his peers, so we do our best to ensure that happens. A rested Elijah is a happy, cooperative Elijah. A tired Elijah can be challenging. No matter what, we love this boy (and his sweet little bro, of course!) to pieces and I am constantly having to pinch myself because I cannot believe the obstacles he has overcome. And all with a big smile on his face. He is such a friendly, special little person and everyone who meets him falls totally in love with him.

We are blessed and grateful! We continue to walk out this path with our oldest boy and support him in any way that he needs. (It goes without saying that we feel the exact same about our incredible little Sammy, as well!)

To be continued! We never know what's next, but we know God has us cradled in His arms!

Good cardiology visit

Elijah's cardiology check-up with Dr. Gremmels went great. His oxygen sats were at 82%, which is perfect for him at the present time. Dr. G is having us decrease his Lasix dosage from twice/day to once/day. In two weeks if he shows no signs of congestive heart failure, we are to stop the medication completely. If this goes as planned, it will be the first time that he's ever been medication-free! Elijah's next open-heart surgery will occur when his oxygen sats creep down to the 60% mark. His lowering sats will be our way of knowing that he is outgrowing the shunt that is currently acting as his pulmonary valve. Basically, the faster he grows, the sooner surgery will be. He has historically been a pretty fast grower, so this surgery may come sooner than we anticipated. This will be the Big One.

Elijah also has a surgery coming up this winter to fix his hypospadias, another defect he was born with where his urethra did not fully develop. This surgery will involve redirecting the urethra and reconstructing its surrounding tissue. We're hoping to get this out of the way before it's time for the Big One.

Oh and the most exciting part about today's visit? Unless something unforeseen happens, we don't have to take Elijah back for a cardiology visit for THREE WHOLE MONTHS!

p.s. Pepino bailarin....dancing cucumber!....pepino bailarin...dancing cucumber!...pepino bailarin....baila, baila, ya!
Sorry, too much Veggie Tales!

Pulmonology

Elijah's report from the pulmonologist yesterday was very good. He has no lung issues besides just having a nasty viral infection. This is great news! We'll just continue with neb treatments for now. He said there's a chance of Eli having asthma, but it's way too early to speculate on that. Only time will tell.

He has been sleeping MUCH better today and last night. It's a significant improvement. He slept until 7:40 this morning!!! This is an Elijah record. He's normally such an early riser (5:30-6:00...ug!). This morning he took a 2+ hour nap and he's sleeping again right now. I'm going to take advantage and go get a nap myself!

The Beast and The NN

Elijah is an absolute Beast today. Really. I mean, I've never seen him like this before. Maybe it's 'Roid Rage? He's been doing the back arching thing and screaming and flopping around like a crazy fish all day long. I actually did not give him any more steroids after we left the hospital last night. Something is telling me it's just not right. We'll consult with E's pediatrician tomorrow and if she convinces us to go forward with them, then we will, but it just doesn't seem worth all of this extra stress. He doesn't sleep and he's a complete maniac. Thankfully Dan came home from his trip a bit early so he's been able to help out today and I've been able to nap. I was just a few seconds away from losing my sanity, so his arrival came just in time.

I have to share my least favorite episode from yesterday's ER visit. If YOU were a mean, cold person, would YOU become a nurse? Yeah, me either. Anyway, here's how it went down:


Nasty Nurse (NN): Bad news. I'm going to have to suction Elijah's nose to get a sample for an RSV test.
Mommy (M): Oh he's used to suctioning, we do it all the time. He'll be fine.

[M thinks this will be a "normal" suction, but it is far from normal. NN sticks a giant tube down Elijah's nasal passage (very harshly, I might add) and this makes E very mad. The kind of mad that M has never ever seen in E. His body flops crazily, the screams are ear-piercing, flailing arms are a blur of commotion. It is a bad scene. M can hardly keep E on the bed.]

NN: Almost done. Theeeeere, done.

[NN finishes the suction and E is still totally freaking out. He is not a happy baby. M tries to calm him, but he's flailing so much that M can't even pick him up. NN grabs a nebulizer mask and immediately puts it on E's face and starts a nebulizer treatment. M immediately takes the mask OFF and picks up her son.]

NN: What are you DOING? You're wasting medicine!
M: ARE YOU KIDDING ME? Do you see how upset he is? I'm going to calm my baby.
NN: But we're wasting medicine!

[M gets E calmed down a bit, but he's still not calm. M can tell another episode is about to take place in the very near future. NN puts the mask back on E and tells M how to position E so he won't be upset. Riiiiight, thanks for the tip. E returns to his flopping, screaming, freakish state, but NN presses on. She keeps her hand firmly on the mask this time so M doesn't try to abort the situation again and waste more medicine.]

NN: He needs to get ALL of the medicine!

[M is basically trying to make a fish out of water sit still and is praying that the stupid medicine is ALMOST DONE. Finally, it ends and M takes the mask off E and once again attempts to comfort crazy mad baby.]

NN: Wow, you can tell who's in control HERE, can't you?

[M wonders, could she really mean what I think she means? Does she think that because a mother wants to comfort her extremely upset baby that the baby is "in control" of the parent? It's not even worth it to respond to this. M does cartwheels when NN leaves the room. NN must tell the staff that she doesn't want anything to do with that controlling mother and her screaming child because E suddenly has a new nurse (who is a peach, by the way).]

Note: E never used to even notice he was getting neb treatments. Ever since our experience with NN yesterday, he won't have anything to do with the evil nebulizer. Thank you, Nasty Nurse. Thank you. Your coldness has scarred our son. Change professions, please. Go do something where you never need to interact with another breathing creature ever again.

More infection

After enduring the most horrible ER experience I've ever been through, I want to crawl into a hole and die. We normally have great experiences at Children's, but today was AWFUL. I'm not going to relay everything that upset me or I will get too emotional and probably start crying again. What we found out was that Elijah was not overly dehydrated, thank God, he does not have RSV, thank God, but he does have another viral infection. Ug!! Already?! We just got done with the last one! They gave him a double dose of steroids today to help out his wheezing/strained lungs, which of course is going to make him not sleep well tonight. We're supposed to re-start Albuterol on the nebulizer every four hours and do two doses of steroids for 5 days and go from there. Hopefully this time we get rid of it. Nasty infections. BUT...at least it isn't RSV. That's what I keep telling myself.

I am thanking God for my friend Jess right now. Without her today, I may have died. It was not a fun day and now I'm going to bed while Elijah is still asleep.

we're back

Well Elijah and Mommy got their first ambulance ride tonight, this morning, whatever time of day it is. We attempted to let him sleep a bit more at home and he woke up barely able to breathe. He started to turn blue and was somewhat unresponsive so we called 911. By the time the paramedics got there he was doing much better, but we still went in. I rode with him in the ambulance and Dan followed us in the car. Right now his O2 sats are low to mid 80's, which is low for him. We're waiting to hear what the doc thinks we should do. Gotta get back...more later...

This is why our boy can't get sick! His heart cannot handle it. :( This is the first time he's ever been sick, so it's hard to see.

Short hospital visit

We had to take Elijah to Children's last night. After being in bed for 2 hours, he woke up laboring really hard to breathe and sounding really congested. We didn't even bat an eye and ran him to the hospital right away. With his heart condition, we do not mess around with anything. Listening to him, I was a little worried about pneumonia, but thankfully his lungs looked and sounded clear, so that means he probably has a viral infection. Eli's O2 sats were on the low side for him, which would suggest that his heart function is a little strained, so we need to keep an eye on him these next couple days. We are going to call Dr. G in the morning to see what he suggests. For now, we are going on little to no sleep, propping Elijah between us in our bed so his congestion doesn't settle in his chest and so he can hopefully breathe a little easier. Right now Dan is sitting with him in the bathroom with the hot water running in an attempt to humidify and clear some of his gunk up. The ER doctor was hesitant to give him a prescription of any kind before talking to his cardiologist. It's amazing how simple things are never simple with a baby with a heart condition. Keeps us on our toes!

Anyway, please say a prayer for our man. He needs some good, uncongested rest. Also, we just wish for this not to be (or turn into) anything more serious. He was AMAZING in the hospital last night. He hadn't gotten hardly any sleep and was still so happy and cooperative. He flirted and smiled and giggled at all the doctors and nurses. We're so blessed to have such an amazing baby.

Ok, change of plans. Elijah is really struggling to breathe right now so we are headed back to the hospital. More later..

Adding to the list....

We took Eli in for his ENT appointment today and came out with a lot worse news than we had expected. Dr. Sidman, who is another AMAZING doctor--we really have been blessed with the absolute best drs, stuck a camera down his little throat and determined that there is something constricting his upper airway passage. He couldn't get down far enough to see exactly what it was, so our little man has to go in for surgery on Friday so they can determine what's causing the constriction. Dr. S thinks it could be one of two things. It could be that surgery/intubation/extubation has caused cysts to form, in which case they'd just have to pop the cysts and that would be that. We are hoping and praying for this option. Or it could be that Elijah was born with yet another birth defect where his airway was not formed correctly, in which case they'd need to reconstruct the airway. This would be a pretty signifant surgery and would possibly require Eli to have a tracheotomy for a few months. This would be absolutely poopy, so I'm asking God as I type that this not be required. We'll get this figured out and get another obstacle behind us. I'm soooo glad that I pushed for getting into the ENT. The G-man suggested it at our last visit, but wasn't adamant about it, so I'm glad I called and got him in right away. His wheezing has just been progressively getting worse, so I knew something was up. I was just hoping it was something simple, which it could still be. I just hate that we have to go back to the dreaded hospital.

We'll be in the hospital overnight Friday night since Elijah will need anesthesia and they'll want to keep an eye on him post-op. We should be home Saturday, barring no complications, and hopefully with good news. Please say some prayers. We are really hoping this is not going to turn out to be a big deal.

Some cute pics to lighten the mood...


Sitting up like a big boy in his new Bumbo chair


Smooches from Mommy. I think he gets a thousand of these per day.


Lately when we feed Elijah, he completely sprawls out on us. He stretches his arms and legs and leans back and just relaxes while gobbling down his bottle. Look at those chunky thighs!

Male pattern baldness and a comb-over

Daddy and Eli watching golf


I am soooooo cute!


Look at that double chin

These pictures were taken before our boy started going bald! I started combing his hair to get rid of some cradle cap and before I knew it, almost all of his hair was gone on top! We've given him a nice little comb-over and now he looks like The Donald.

We had Elijah's 4-month check-up today. Strangely, he has only gained 3 oz. in the past two weeks. I'm not sure why this is, because he has actually been eating pretty well. He's still in the 25th percentile for weight and height, so the doctor wasn't too concerned. If he continues to not gain much weight, I know his cardiologist WILL start to be concerned. His oxygen sats were at 89-90% today and that's where they were when we left the hospital so that's good news. The doctor was a bit concerned about the very large flat spot on the back of Eli's head, so we now have another specialist to add to his list -- a physical therapist. They will help us to even out his head and stretch his neck muscles. Also of concern is the fact that at four months old, he cannot lift his head on his own at all. His neck muscles are still really weak because he has spent 1+ month of his life in the hospital and another month on top of that unable to lay on his belly because of his incision. This is something else the PT will need to work with him on. We have been trying to get him on his tummy here at home, but he HATES it. He screams his head off. You'd think someone was trying to cut off his leg.

I am basically forcing him to take naps during the day. I sit in his room with him and do whatever I can to help him sleep for two hours twice a day. It's exhausting, and I don't know if it's going to help or hurt him in the long run, but at least he's sleeping. He is a totally different baby when he is rested. He's so fun to be around. When he's tired, all we hear is screaming. That's my motivation to do WHATEVER I need to do right now in order to get this man to nap. The "cry it out" method does not work for him (we found that out the hard way, after a long and grueling week). He doesn't appear mature enough yet to self-soothe, and plus I just hate the thought of his little lungs/heart working too much harder than they already are. Thankfully, he is a GREAT night sleeper, and for that I am eternally grateful. At least we have that!

Our cardiology check-up is coming up in a few weeks and we'll see how much weight he has gained and how his breathing is doing at that point. These two things will help determine when his next heart cath will be. Lately, his breathing has been labored, but it's so hard for me to tell if it's worse because I see him every day. Sometimes I think it looks really bad and other times I don't think it looks too bad. We'll let Dr. G determine that in a few weeks.

That's all we know this week. Send good napping energy our way!

4 months old!

Getting hugs from Pete the Puppy



Today Elijah is four months old! Old man. So apparently the docs don't think a whole lot of his rapid breathing and slight decline in eating. It's not "acute" enough to be of concern right now. There are two things that can be going on: 1) His body is still recovering from surgery and healing up, or 2) He is getting too much bloodflow to his lungs, which is making his body work extra hard. This option is entirely possible because he does have those extra collaterals that are supplying extra blood to his lungs. We just have to wait it out for a while and keep a very close eye on him. If option number two is what's going on, we'll most likely have to do an angiogram sooner rather than later to see what is going on and possibly correct it.

The sleeping is getting SLIGHTLY better. I've noticed tiny amounts of improvement these past two days. We'll take tiny. Today Elijah napped on my chest for TWO HOURS! This has never happened. Granted, I didn't get a thing done this morning and I had to soothe him back to sleep about five times, but at least he slept for two hours!

A bit of worry

On top of not taking good naps and making Mommy and Daddy nearly insane, Elijah hasn't been eating as well these past few days and his breathing is getting very labored. One of the main things they told us to look for is a decline in eating, so I have a feeling that we're going to have to take him back into the cath lab soon for another angiogram. It's possible that he's getting a lot of extra bloodflow to his lungs (thanks to those MAPCAs collaterals) and that is what is causing all of this. I pray that he heals up all on his own so his body doesn't have to work so hard. Poor guy. Please no more hospital please no more hospital please no more hospital please no more hospital!!!

So thankful!

Elijah weighed 12 lb. 3 oz. at this morning's check-up! No wonder my arms are tired lately. He is now in the 25th percentile for height and weight, up from the 10th percentile at his last check, and the 3rd at the check before that. He has gained this weight ALL ON HIS OWN, which is amazing for a baby who has such a serious heart condition. He honestly is a MIRACLE baby!

I want to express my deep appreciation for everyone who is surrounding us with love and prayer right now. We have such amazing people in our lives and I feel like we have such a protective, peaceful warmth surrounding us right now. We are overwhelmed by the amount of prayer and love that's been given to our little man, and to us.

While looking online for info about Elijah's upcoming surgery, I found Matthew's blog. Matthew was born with the same heart defects as Elijah. He is now 2 years old and is doing extremely well, and is such a cute little man. His story has given us great hope! I've been talking to Matthew's mom, Terri, and it's so nice to be able to talk to someone who has experienced exactly what we are feeling right now. Terri wrote a nice little request for prayers for Elijah on her blog. :)

Also, please keep our dear friends Tim and Katie and their little guys, Samuel and Elijah, in your prayers. Sam and Eli were born very premature and, now 2 months old, little Elijah is having a rough time. He is here at the Mpls Children's Hospital NICU as he tries to get past some tummy issues, while hoping to avoid surgery. It's ironic that Elijah Porta and Elijah Yoder will be at the SAME hospital at the SAME time. I believe that it's not an accident that it's happening this way! You can check out their blog for more detailed info.

2 months old!

Elijah is two months old today and we had his 2-mo. doctor's check this morning (including stinky vaccinations). He now weighs 9 lbs. 6 oz.!! Dr. Snook was in total disbelief! He's such a piggy little man, eating all the time and not letting Mommy and Daddy rest much. His constant feedings are starting to take a toll on us. We are more sleep deprived than ever, but of course we are...what did we expect?! I'll stop whining. Back to Eli... his height and weight are now in the 10th percentile, up from being in the 3rd percentile at his last visit. He's growing so well. I think all of his doctors are really just stunned.

We may have to increase his Lasix dose again soon since he's growing so fast (since Lasix doses are given according to weight), but that's to be expected. We see his cardiologist again on May 1st, so he'll probably get another chest xray then to make sure everything inside is still functioning ok. We also may have a better idea at that visit about when his upcoming angiogram will be (which will help determine when his first surgery will be).

What a good, sweet little chubby man we have. We will post more pics soon!

St Patty's pics....and a medical update

Here's an update on Elijah's medical situation:

We will be visiting his cardiologist every other week for check-ups and when he's about 4 months old, he will need another angiogram so they can look into his heart and see how it is functioning. This will give us a good idea about when his first surgery will be. Right now they are estimating that the first heart surgery will take place at 4-6 months. Our number one priority is to fatten him up for it...and to keep him as healthy as possible (which unfortunately means keeping him away from kids and the general public for a while). The bigger and healthier he is, the better the surgery will go and the better recovery will be. He has gained almost a pound since his birth. Last Friday he weighed 5 lbs, 12 oz! He has been eating all his food through bottles and has been doing better than anyone thought he could do. He is such a strong guy.

Elijah's one kidney appears to be functioning just fine on its own, so as of now it looks like this will not cause him any medical issues. We will be seeing his urologist at the end of April for a check-up.

Because his little heart is trying so hard to send as much blood as possible to his lungs (and therefore sending too much blood to his lungs), he is still taking a small dose of Lasix. This medication expels fluids from the body. Without it, fluid would build up around his heart and lungs and would make it difficult for him to function. The medication is wonderful because he doesn't seem to be having any trouble doing the things that some heart babies would have a hard time with--breathing, eating and pooping.

Sometimes when more than one anomaly is seen in a baby, the doctors look for an underlying genetic reason to possibly explain everything. Since Elijah was born with a couple anomalies--his heart defect and his missing kidney--a genetic doctor had some tests run on him as soon as he was born to see if maybe there was an underlying cause for these things. We just got those results back this week and everything was perfectly normal. He does not have a genetic disorder or anything wrong with his chromosomes, so these anomalies are just a fluke.

Elijah has some challenges that lie ahead (surgeries, recoveries, etc..) but he is such a perfect, normal little baby. Looking at him, you'd never know he needs some major repairs inside his tiny little body.

Considering the severity of his heart defect and his prematurity, he is doing EXTREMELY well right now. All those prayers that you all have sent us are paying off. God has been so good to us. We are so blessed!

xoxoxxo
M, D & E

Home away from Home

Well, we're back at the hospital as of last night. On Tuesday and into Wednesday Elijah started acting differently than normal, not feeding as well and breathing very hard. We took him to our pediatrician yesterday in Shakopee and they sent us back to Children's Hospital to get him checked out.
He's not sick (thankfully) but he was experiencing some Congestive Heart Failure. In short, his lungs were actually getting too much blood flow causing him and his heart to have to work harder. As a result of the labored breathing he wasn't able to eat as well and was quite a bit more irritable.
The good news is that this is a common issue that comes up in kids with his condition. To treat it the Dr's have raised his dose of Lasix (which helps the body get rid of excess fluids) and we've already seen a drastic improvement. His last couple feedings have been very good and it seems like our sweet ol Elijah is back to his normal self.
He'll be kept one more night just to make sure that things are back on the right track.

It was a stressful afternoon/evening but we are feeling good today about his progress. Hopefully we'll even be able to take out his feeding tube when we go home tomorrow (which would help him even more since he wouldn't have one nostril essentially plugged).

The little guy defintely likes to keep Ma and Pa on their toes!

Thanks for all your prayers and support, we are truly amazed, blessed and more grateful than we could ever express for all the help we've received. Even the hospital staff comments on what great friends/family we have supporting us. Thank you all so much.