Praying for a Miracle...

Saturday night bore a heavy blow. What began as a trip to the hospital for a sodium imbalance took a severe turn that no one saw coming. Our Isaac needs a supernatural miracle.

Finding our boy dehydrated, he was given IV fluids to correct his fluid balance. But once this occurred, he spend two days with oxygen sats in the 40's & 50's. Through tests & observation, we ruled out the respiratory system as being the cause of this. Dr. Blair Robinson, Isaac's cardiologist, did a bedside echocardiogram to fully assess his heart. What he found took us by surprise & has brought a great heaviness to our hearts.

As you know, Isaac has one ventricle doing the job of two, pumping blood to both the lungs & the body. The strain of bearing the load for the whole heart has caused the heart muscle to thicken considerably, making it difficult for his heart to fully fill. Also, the pulmonary artery (from the heart to the lungs) is a third the size as it should be. This significanly limits the amount of blood his heart can pump to the lungs to be oxygenated. His heart is working very hard to function & is not growing as it should.

Bottom line - as it is right now, Isaac does not qualify for either the next stage of surgery nor a heart transplant. His body would not survive either. His current status leaves him without options &, if nothing changes, only a month or two left to live.

We need a miracle! There is nothing medicine can do to help him. We are doing our best to give him the best nutrition & medicines to optimize his chances to grow. But as things are now, his heart is burning all those growing calories to simply function day to day. If ever there was a time for prayer, this is the time!

Our hearts grieve with this news. Sadness was written on the doctors' faces as they conveyed the reality of Isaac's situation. Thankfully, he's back home now with family & familiar surroundings. Whatever God choses, we find our boy in a win/win situation. If God intervenes in a supernatural way & heals his heart - either completely or enough to have the next surgery - then He will be glorified & Isaac will remain with us! Our hearts long for this! But should God decide to take him home, then we rejoice that Isaac will be with Jesus, face to face - free of tubes & tests & struggles. He won't know hurt or disappointment or limits. But still, we pray for the miracle!!!

Mr. Smiles!!!

Isaac has a new favorite hobby - smiling!! He's been happy as a clam today, bearing his gums for all to see. Enjoy!

Two Perspectives

Isaac's resting comfortably in his PICU bed & to look at him, you'd never know anything had been wrong. After a frightening seizure episode & several blood labs, it was determined that Isaac had become extremely dehydrated - most likely a result from sweating his little heart out over the past week...he sweats like a grown man when he's mad! Thankfully, Benny was able to gain IV access to give Isaac fluids & meds. An echocardiogram revealed thickening of the heart muscle, a result of working hard to function. So the gameplan at this point is to successfully rehydrate Isaac, stabilize his sodium levels, & adjust his heart medication to assist his heart further.

What a day. At first, we were very concerned for Isaac's health & frustrated by the awful timing of it all. We'd finally come to the point where Isaac was doing well, nursing arranged, & work all in order. It just didn't seem fair! But as the day progressed, another perspective came into view. Thankfully, the call had come while Jordan & I were still home. Thankfully, Isaac was already at the hospital when his seizure hit. And thankfully, it wasn't worse...as it very well could have been! God knew we needed to be at UNC to learn about his heart thickening & at the end of the day, our sweet boy is still here.

Hopefully, we'll only be in Chapel Hill for another day or so. Now we know more of how to pray effectively for Isaac - that he would maintain hydration, safe electrolyte levels, & for his heart - that the muscle would work efficiently & go back to normal size. We see the cardiologist next Thursday to learn when he'll need the next surgery, most likely within the next month or so. Until then, we hold our sweet boy close, bathe him in prayer, & that God for His love & never-ending faithfulness.

20 Weeks with Hiccups...

As of 8 o'clock this morning, Jordan & I were packing up for our vacation to the beach. Nursing all set up & Maima in the loop for watching Isaac, we were headed to Holden Beach for a much needed break, just the two of us, since December. Isaac has done very well up to that point, 20 weeks old & now weighing 12 lbs 2 oz at the doctors yesterday. Growing strong & coming more alive each day. I was writing up an update post for the blog to report how well Isaac was doing before we ventured off to the beach.

And then the phone rang...

During yesterday's pediatrician appointment, labs were drawn to check his electrolyte levels since adjusting some of his meds. Results came back with sodium & chloride in dangerously low ranges to the point of putting him at risk for seizure activities. This shocked us as he's been amazing over the past few days. So instead of the beach, we're back in Chapel Hill awaiting a PICU bed to open up. We're not sure why his levels are so out of whack & are praying for wisdom in discerning the root of the problem. Jordan & I are praying for a quick resolution to Isaac's condition without additional complications.

For now, the beach will have to wait...

Nineteen Weeks & Still Going Strong...

July is already here! Where has the time gone? There are moments when it seems only yesterday we were heading out to Chapel Hill to meet our sweet boy for the first time. And then in a blink, he's growing before our very eyes at four & a half months old. We now understand what mom meant when she told us "you kids just grew up so fast!" It seems each day flies by quicker than the last. Our little boy certainly keeps us busy!

We are so blessed to have this precious little boy in our lives. What a relief to have a good report from the pediatrician last Friday. The staph infection has responded well to the IM antibiotic injections, so we've been able to transition Isaac to oral (Gtube) antibiotics instead. Thank goodness! His poor little thighs were getting so tough & sore from the daily muscle shots. He's very brave, rarely crying when getting his shots.

As you know, Isaac's heart has to work twice as hard as a normal heart would. Because of this, his growth has slowed as he requires more calories to support his heart's workload. We're working to find the right balance in his caloric intake without giving him fluid overload as well. So please pray for him in this - that his body would continue to thrive & grow.

Today we trek out to Chapel Hill for a visit with the pulmonologist (basically checking everything from a respiratory standpoint). It will be good to see the familiar faces at UNC & hopefully get the green light that everything continues to go well with Isaac. With each day, I realize we're just one day closer to his next surgery. Our appointment with his cardiologist on the 26th will give us a better understanding on when that will be. Much lies ahead for our precious little boy. Our prayer today is for a good report from his pulmonologist.

Thank you all for your support & prayers for us as we've transitioned home, as well as patience between posts. Isaac's doing well, grows more handsome each day (which means he looks more like his daddy each day), & continues to teach us to trust God with what's most precious to us. Now, its off to UNC!