Pics from our weekend in Virginia

Jensen has been doing great the past week. We had an appointment with a lactation consultant on Wednesday and she helped me with his latch. Guess who hasn't had a bottle since then?! My little man has gone from feeding from an NG tube only to exclusively breastfeeding! I never thought I would be able to nurse him. I tried to never get my hopes up and settled on pumping day in and day out for him. All that hard work finally paid off and I kept up a supply until he was ready to nurse. To say I'm ecstatic would be an understatement!!

Although he is eating great and very often, we are still working on his weight gain. He's not gained or lost weight significantly since we have been home. Its definitely something we will keep an eye on. We are also watching his constipation. The poor little guy has a broken pooper. I'm sure that being on thickened breast milk for so long has caused his constipation. Tonight he had some bloody stool so we are taking him in to sick hours at the pediatrician tomorrow. I'm certain its just from straining, but better safe than sorry. Now that you are all up to date on the status of Jensen's poop...here's some pictures I've been meaning to post!

The sisters minus one! We miss you Shannon, Mikey, Abbie, and Emily!

Adison and Jensen's first time meeting. He was SO excited as you can tell from the red face and screaming.  

Grandmama and Jensen, he was getting so tired at this point! 

Miss Adi! She's so stinkin cute!

Us with Nana and Poppaw =)

Play pen buddies! 

The poor kid never has any toys to play with (rolls eyes!!!)

Somebody is sleeeepy

Coming out of the bubble

Jensen had his first trip out into the real world this weekend! We decided last minute to take a trip to Virginia for my family reunion. This was the first time my family got to see Jensen. It was a 5 hour drive and little man did great on the trip! Only my parents and sister know about our plans so it was a great surprise for everyone to see us at the reunion! My nana only cried about 4 times! Jensen also got to meet his cousin Adison, who is just a few months older than him. They were pretty stinkin cute together! I was so happy to introduce Jensen to everyone who have spent so much time praying for him and reading about him. He's our little celebrity ;) It was great seeing my family but I felt slightly panicky all day and my BP was definitely way too high. I'm so worried about him getting sick. I do want to get him out more and this was our first GIANT step in the right direction. 

We drove from my parents house in Kingsport to Chapel Hill this morning for Jensen's neurology appointment. After driving several hours and getting to the clinic an hour early, we had to wait 1.5 hours for the doctor to show up. We spoke to him for all of 10 minutes and the appointment was over. That was incredibly frustrating after such a long weekend, but oh well. We discussed weaning Jensen off of his phenobarb because it is a large volume and he's also on Keppra for seizures. We are hoping to decrease the meds he takes daily because we believe they are suppressing his appetite. Dr. Tennison wrote us a wean plan and he will be off phenobarb in 6 weeks! The scary part is, we don't know how he will do without that drug until we try it. So we will be carefully monitoring him for any signs of seizure activity. Dr. Tennison also wants to hold off on any imaging until we have more reason for it. 

Let me explain a little about radiation exposure:

In the hospital Jensen had x-rays daily, which is normal for a post-op heart baby. It is necessary to monitor fluid and the status of his lungs post-extubation. Once his team was a little more comfortable with his lungs he went to having x-rays every other day then eventually they were only ordered as needed. Jensen also has had multiple MRIs, cardiac caths, fluoroscopic swallow studies, fluroscopic stomach scans, and CT scans. All of these add up to a lot of exposure to radiation. Of course his doctors weigh the risks of exposure vs benefits of medically necessary procedures, but now that he's more stable, limiting radiation is more of a priority. 

All in all, the neurologists were happy with Jensen's progress despite his extensive history. They were pleased to see him wiggling everywhere and smiling and playing. He is definitely one amazing little boy and has overcome so much in his short 5 months. We are so proud of him and can't wait to see what amazing things he will do next!

I'll be posting pictures once we unpack our car load of baby gear and I find the camera amongst the mess!

From another mom: Guilt

Another mom on my Heart Mamas facebook group posted about guilt. She is much more gifted with words than I am and has pinpointed so many of the emotions we all share as a heart mom. This and so many of Czarina's other posts give you all a glimpse of what its like to be on this journey. Thank you Czarina and Jensen's heart buddy Evan =)

“We want the best for him.  That’s it. We love him so much”

I looked at Dr. R.  My eyes pleading with him to tell me our boy will be ok.  When I know that that fate is in the Hands of my Father.

His eyes met mine.  Kind.  Compassionate.

“I know you do.  And that’s what we want, too.”

A pause. And he looked through me and saw something I had been hiding from so many.

“The guilt.  It will go away with time.  Nothing you did or didn’t do made this happen.  You are doing everything you can…and it is enough for him.”

Breathe.  I had been holding my breath.

The guilt.

I look at my boy and wish things were different.  Yet, I don’t think I would change him.  He’s perfect and one day he will be healed.

The first time I got the diagnosis for Evan, I remember looking for a reason why this happened.

Why did his heart not form right?  What was it that caused his face not to form correctly?

What didn’t I do?

What did I do?

Did I not take enough vitamins?

Did I take too much?

Did I not eat enough?

Did I eat too much?

Was I overweight?

Was I underweight?

Was my exercise regimen too rigorous?

Was my exercise regimen too easy?

You get it.

Every question of the whats, the why’s, the hows.

I was told over and over again that this wasn’t my fault.  And, unfortunately, a congenital heart defect happens 1 in every 100 babies. Cleft lip and palates happen in 1 in every 600 births.

Read that again.  The part about the heart.

1 in every 100 babies.

It’s free from prejudice.  Congenital heart disease is an equal opportunity attacker – it doesn’t care how old you are, what color your skin is, what god you pray to.

So, why the guilt?

Because, that’s what we do.  Heart Moms – that is.

We guilt our way through this journey.

It starts from the beginning.  The diagnosis…and feel the guilt of what could have caused this weighing heavily on our shoulders.

Then, we feel the guilt from the moment we give birth and they take that bundle of screaming, wrinkly, *hopefully* pink perfection out of our arms and whisk them away for a series of pokes and prods.

I was one of the lucky ones.  My Evan felt the touch and love of my arms and my kiss before he felt the touch of a needle piercing his skin, the cold sterile gloved hands of someone not his Mama.

Many of my Heart sister’s babies weren’t so fortunate.  Their bundle of love – who they prayed over, protected, promised to love forever, shared the same heart beat for 9 months – taken from them too quickly.  I’m sure…pleading…in their hearts or through tears….willing their little ones to hang on…reassuring the flesh of their flesh that they would get to hold them soon but they loved them already.

Then the guilt when we finally get to see them.  Some of us, if we’re lucky, get to see our babies the next day.

Our hearts aches as we look at the innocence before us.  Needles, wires, tubes running every direction.

Yet – we see the baby we love so much and would give our heart to in a second to make it alright.  Unable to touch them…hold them.

The guilt we feel physically.  As our breasts ache from the mere sight of our little one.  Wanting nothing more than to pick them up, bring them to our chest, and let them touch, feel, smell us.  Our bodies react innately.  The tingling sensation as our breasts prepare to make milk for our babies…wanting to relieve that ache with the suckle of our little one.  Wanting to have that moment where their little hands almost hold onto us, their eyes fluttering shut in contentment as they feel their bellies full of the milk their Mama made just for them, needing the connection and the bond of nursing.

But, so many of us can’t nurse our babies.   But still, so many of us make the milk.  We turn to the cold and callous breast pump to alleviate the fullness.  But, nothing compares to having your little one latch.  But, we do.  We guilt our way through each pumping session.  Every 2 hours – all day, all night.  Trying to make milk – despite our lack of sleep, not eating, stress, or the worse….trying to make milk as you pump in the I.C.U. – with the sounds of the machines beeping in the background – willing your body to make a droplet – as you stare at your baby post-heart surgery – open chest, breathing tube, the wires, the tubes.

We guilt our way through the moment when the nutritionist walks in and says the plan on starting your baby on formula – trying to explain that your baby needs calories.  Calories to grow.  Because growth means the heart will grow…to prepare your little for surgery.  The panic sets in with the guilt…”Is my milk not enough?” Suddenly feeling another pang of failure…thinking…”I wasn’t able to grow you the right way inside.  Now what I am providing…may not be enough.”

We guilt our way through the formula bit.  Trying to shield our hearts and our minds from the nonsense of articles, opinions of others about how formula is the the devil’s drink.  Opinions so biting, so hurtful – cutting through us as moms.  So many of us, wanting to give our children Liquid Gold – which we know is breast milk – but for one reason or another cannot.  Wanting so badly to tell those people, respond to those articles toting that the world is going to sh*t because of formula fed babies – wanting to say – “Come talk to me when your baby is in critical condition, with the tubes and wires.  Come talk to me when you are up pumping in the middle of the night – your nipples bleeding and cracked – because your body is shutting down shop – yet you are desperate to get a drop for your baby. Come talk to me when the heart surgeon says they want your baby to grow…get as big as possible…for their open heart surgery….and they feel that formula will help that cause.”  But we shut our mouths.  Too tired to defend our cause….can’t change stupid.  Too angry to articulate our feelings.  Too knowing….never wanting another mother to experience what we’re going through and don’t expect anyone to feel how we feel…unless you’ve walked in our worn down shoes.  So, we guilt our way through that.

We guilt our way as we shove feeding tubes through noses and down throats.  Wishing they could just be normal and take a bottle at least…but their hearts to weak to do so.

We guilt our way as we pump in medication after medication in our defenseless babies.  Wishing that the drugs we are putting into their bodies weren’t meant to treat heart failure.

We guilt our way through weight checks.  Chronicling every gram gained and lost.  And the losses…searching our minds…did we not give him enough?  Was it because he threw up that one time…must have been because I failed to burp him….gave him too much…gave him too little.

We guilt our way through every doctor appointment. Doing the research. Asking the questions.  Needing the answers.  When the only thing true question we want to ask is, “Will he be ok?” And wanting the response to only be, “Absolutely.”

Guilt.

Part of our journey.

So much of our journey.

With time…it will go away, Dr. R says.  Knowingly enough…his own daughter enduring heart surgery many years ago.

With time…the guilt should go away.

Someday.

Just not today.

The good with the bad...

That's how it always seems to go, at least for us. For every piece of bad news, there's almost immediately good news and vice versa. Sadly, Jeremy's grandfather passed away this morning. He had battled cancer multiple times and eventually had a stroke (just after Jensen had his). He was sent home on hospice and was kept comfortable for the last few days. Jeremy and I are sad that he never got to meet our little man :(

Jensen has been struggling for the past few days. He is teething and is pretty miserable. Although this is a totally normal baby thing to go through, I have been slightly panicky at the thought of what else could be going on. We brought it to the attention of Dr. Robinson at our appt on Monday, but yesterday Jensen was much worse. He refused to eat more than 10-20 mls at a time, and had very few wet diapers yesterday. Dehydration is becoming an issue and his refusing to eat is only made worse by his Lasix dose 3x daily. We called the cardio office and let them know. We were told to keep monitoring his ins and outs and weight and to take his Lasix down to 2x daily. 

Overnight he did a little better, but is still dehydrated. His sats have been great but his weight is down slightly. Now I know what you are thinking. Healthy babies go through phases where they won't eat, especially while teething. Yes yes, I'm fully aware. But my baby isn't a "normal" baby. He's a heart baby. Any one "normal" baby symptom could be a sign of something much worse. Although Jensen is much more stable now than ever before, it is hard for me to get out of the interstage mindset. And we all know Jensen is a bit on the rowdy side so I'm hesitant to ever call him "stable". 

For now, the solution for Jensen's dehydration is to put in an NG tube. Yuck. I'm absolutely, positively dreading this. He has done so well without the tube until now. I'm worried that he will revert back to his old habits of tube feeding then barely bottle-feeding because of the violent reflux. However, short of making a 1 1/2 hr trip to the children's hospital to poke him 20 times to start IV fluids, this is the only way. It should only be for a day or two and then we will get back to his normal feeding routine. Fingers crossed.

On the tails of this sad, frustrating news...I do have some good to share. Jensen has had a love-hate relationship with tummy time for some time now. He seemed to really love it at first then would scream approximately 5 seconds later. Today, I began really working on tummy time (since he has now been cleared by his doctors). I laid down the tummy time mat and put him on top of it while laying on his tummy time pillow. That must have been the optimal tummy time conditions, because he didn't even cry! Wow! Then, he actually lifted his head up and looked around! He has never been able to get his chin to clear the surface. That's the first time he has actually participated in tummy time festivities =) Neck strength is such a huge hurdle for him because of the large amount of time he has spent lying still on his back in the hospital. He also still has very tight muscles in his neck from the ECMO cannulas. He did only look to one side, but heck...I'll take what I can get. This is a monumental leap forward for him. This will help him catch up developmentally and hold his own head up for longer periods of time and work on sitting up. I'm beyond proud of him!

I.love.this.picture.

Super windy before a huge storm

Whoaaaa what's that wind??

My grown up baby

Jensen and Mommy...On the mean streets of Raeford.

Holding his head up!

Ok, maybe I got a little excited and took too many pictures!

"Seriously Mom, I'm a big boy, leave me alone" 

I'm so proud of him!

Home sweet home

Thursday we had an outpatient cardio appt with Dr. Rychik. This was just to make sure everything was good to go before we left for NC. Jensen had an echo and was not so happy about it. We did all of our best distraction and anti-squirming baby techniques, but he was just not cooperating. Our echo tech actually said, "Can you please make your baby stop crying?". Now, being cooped up in a hospital makes one a little more feisty than normal so I replied not-so-kindly, "He's 4 months old so.....NO!" Ha!

Anyway, the echo showed a tiny bit of fluid around his lungs, small pulmonary arteries, and some valve leakage. Nothing was too concerning and we were given the green light to fly home without oxygen! Jensen did have a high Lovenox level (in my foggy, sleep deprived state, I don't remember explaining this medicine before so these are the shots we give him twice daily to thin his blood). We were told to titrate down a little and have his blood work re-drawn on Monday.

Friday morning at the buttcrack of dawn, we loaded down a taxi and set off for the airport! This trip was completely unremarkable with no dramatic sprinting across 4 terminals or fighting for room on the plane. It was a very pleasant, quick trip! As soon as we got back to our house we all took a very long nap. It has taken the weekend to get things unpacked and back in order. Jensen is back on a somewhat normal sleeping schedule.

His eating schedule is still off bc he is teething and the poor kiddo doesn't want to suck on a bottle. We have tried every teether known to man and nothing really works. We just apply Orajel as often as we can and pace around the house trying to calm him down.

We had a cardio appt today in Cary with Dr. Robinson. He was happy to see him so alert and playful after such a mass of complications from the last surgery. Jensen's echo today showed NO fluid around his lungs (thank you Lasix) but he still did have small pulmonary arteries and valve leakage. This is to be expected after the massive amount of work that was done on his heart. The plan is more of a "don't rock the boat" situation. We need to give him time to grow and let his pulmonary arteries grow. He will be needing a cath to expand his stents in about 6 months to a year.

We are so thankful to be home with our boy. Post-Glenn life is supposed to be much less stressful than interstage. I am waiting to see if that is true ;) After everything Jensen has gone through, I can't help but beam with pride when he coos and plays with his toys. Every smile is a miracle. Every laugh is the sweetest sound. There was a time Jeremy and I thought we had lost our baby for good and we are beside ourselves with joy that he seems to be ok. Even if he does have deficits from the strokes/seizures they are not nearly the severity that we thought. We are so blessed to have this little cutie in our lives!

Glenn Pics

Some of these might be pics I have already posted, but I wanted everyone to be able to see the recovery process. Enjoy!

Going back for the pre-surgical cath. No interventions were needed and everything went great!

Hungry after waking up!

Pre-surg neuro consult with Dr. Licht. Jensen HATED the EEG! Dr. Licht was thoroughly impressed with Jensen though!  

Getting in lots of playtime and snuggles on the night before surgery. 

Just after his chest was closed. We thought things were heading in the right direction. A couple hours later we found out about his strokes and seizures. This was one of the hardest days of our lives. 

Very swollen and on the continuous video EEG. His seizures took a couple days and three medications to control. He had no outward signs of seizures (they were subclinical) but every few hours we would get a call from neurology to up his medication. It felt like they would never end. 

48 hours seizure free! EEG came off and he was ready to be extubated! Finally!

Dr. Fuller and Jeremy's brother both sent us a picture of the double rainbow. One was for Jensen and one was for another heart kiddo that passed the afternoon. (RIP Danny <3)

Off the vent! I could finally hold my baby! Even though he still had an intercardiac line and pacing wires, Dr. Fuller pushed for me to get to hold him. It took some careful maneuvering but it was so worth it!

Snuggling with blue puppy. (BTW, blue puppy is disgusting after this hospital stay. He needs a bath.)

All of Jensen's equipment, which was actually a lot less than after the Norwood. 

He was started on feeds and was being weaned down on the high flow nasal cannula. He was doing better and better each day!

Clothes! Jensen finally got to wear something other than a diaper =)

Speech consult went awesome...no more feeding tube!

He was finally getting back to his normal chunky self.

Chest PT. We did this a LOT to help clear up his lungs. It paid off...his x-rays looked great after a couple of days!

Play time in the CCU!

Now you know the meaning of "blue babies". He turns this color when he gets mad. In our case that would be at 8 am and 8 pm every day when he has to take his meds. 

He's ready to go!

Waiting on our discharge papers!

Dr. Fuller came to tell us bye ;(

He totally fell asleep like this!

This is Jensen's first girlfriend...he loves her <3

She touched our baby's heart. She is our hero.  

Until next time...

Stepping down (again)

I feel like this hospital stay is one big case of deja vu. We are getting very anxious to go home because Jensen is doing great! This is exactly how we felt last time. So they are moving us to the CCU today!

His team decided to put him on lovenox because he needs anti-coagulation to keep his stents open. However, this comes with a huge risk to his brain. He has subdural and subarachnoid bleeds and obviously blood thinners could cause the bleeds to get worse. He was started on lovenox on Friday and was watched closely over the weekend for any signs of bleeding. Yesterday he had a head CT and we were told his hemorrhage looked the same (good news)!

He is off oxygen and eating everything, meds included, by mouth. He is going to have a follow up swallow study to see if he tolerates thin liquids. I feel like this time he won't have as many feeding issues because his voice is strong and he's eating like a champ!

Now he just needs to work on correcting his electrolyte imbalance. This happens to kids in the CICU because they have to be on large doses of diuretics for their hearts. He is getting supplements of sodium and potassium in his bottles but he doesn't tolerate them well...it comes right back out of his nose, yuck. But once he is weaned down on his diuretics his electrolytes will rebalance.

The longer we stay here the less patience we have. We love CHOP and are so grateful for what they have done for Jensen. However, we are smarter this time around and can see when fellows are lazy and nurses don't pay attention. We know Jensen and what he is capable of. We have to constantly remind people here that he really is fine, even if the monitor says otherwise. This experience really makes you appreciate a good nurse or a doctor that realizes we aren't stupid parents.