Going Home...Soon!!!

(Pardon the lack of blogging over the past week due to limited internet access)

When asked to describe the past seven days, the word "phenominal" comes to mind. For so long, it seemed sickness & set backs were on a snowballing path. Now, health is gaining with every day. As we watch our sweet child, sheer amazement floods our minds at all God has brought him through & how well he is doing now; amazement that his is simply alive, let alone thriving! Were it not for the many scars on his tiny body, one would never know the dark road he has travelled. To the eye, he looks like the most adorable 14-ish week old ever! (And for those interested, Isaac now weighs 12 lbs & is 20.5 inches long!)


On Memorial Day, Isaac took his first trip outside! We loaded the stroller with his home vent, charged the IV pump batteries, & with the nurse & respiratory therapist by our side, headed out to the butterfly garden at UNC. Isaac was absolutely wide-eyed on the journey to the garden. And as soon as the sunlight hit his sweet face, he fell fast asleep. The 45-minutes outdoors was truly refreshing for us all.


Isaac continues to hold steady on his home vent & has weaned on the rate from 20 to 14. We've received most of our home equipment & interviewed with our home nursing care company. The bile reflux issues has resolved with a few changes to his medical regimend. He's learned to suck on his pacifier, which is truly amazing in light of never having fed by mouth & having an ET tube down his throat for 10 weeks. What a joy to watch our sweet boy acting like a precious healthy baby instead of an incredibly sick child. And to top off the good news, Isaac is now free of IV lines!!!! The IJ line was pulled yesterday, so the only pump our boy is connected to is his feeding pump!!! For the first time in his life, Isaac has no lines in his veins, nothing stitched to his skin. Words fail to express our amazement & gratitude to where God has brought our son from & the place He has brought him to. Wow! We can now pick up & hold our sweet boy without worrying whether we'll throw a clot or compromise his access. Lord, You are faithful; Your lovingkindness endures forever!

Jordan & I have been training with trach & G-tube care. Our trach nurse, Cindy Reilly, has been nothing short of incredible, walking us through the adjustment process. What a wonderful resource she has been to us, coordinating everything needed for Isaac in the hospital as well as the process towards going home. And speaking of home...we have a tenative home date!!! June 19th! Cindy's working with our home nursing care company, Maxim, to hopefully bump up the discharge date...possibly as soon as the end of next week. It all depends on staffing for Isaac's case. He'll require 24 hour nursing care the first week he's home & then 20 hour care after that. So join us in praying for full staffing for Isaac's case!!


How faithful is our awesome God!!!!!!!!!!!!!!!!

Welcome To Holland

The story below was given to us this past week by the Turner family in the UK. They also have a sweet boy with HLHS (charlieturner.blogspot.com). In their journey with Charlie's condition, someone gave them this story to help describe what life with a special needs child is like. It vividly illustrates what we wrote about last time with changing dreams & has touched our hearts. Thank you, Turners, for this wonderful story. Enjoy!


"I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this . . .

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, 'Welcome to Holland.' 'Holland?' you say, “What do you mean Holland? I signed up for Italy I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.' But there’s been a change in flight plan. They’ve landed in Holland, and there you must stay.

The most important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that’s where I was supposed to go. That’s what I had planned.'

The pain of that will never, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."


We may or may not experience Italy down the road. Only God knows whether our journey will take us there. But for now, our Holland is bright. We would have never known the beauties of this country without God's plan for Isaac. Holland truly is beautiful this time of year...

Progress & Planning

All three Leino's in Chapel Hill are enjoying a fabulous day. Isaac has made his way up to full feeds & no longer requires TPN (IV nutrition). He still has occasional gag & bile issues, but we're working to figure out the cause of this. The medical team planned to transition Isaac to his home vent on Friday. However, Isaac has done so well that we bumped up his first trial to today! He did so well with it that we've completely switched him over to the home vent now! Its more of an adjustment for us with the equipment than for Isaac. But just like every stage of this journey, we'll learn, adjust, & keep moving forward. Our little fighter continues to amaze & move towards home. Words fail to describe our joy in even having the road home nearly in sight now. Should all continue as planned, its only a few more weeks away.

When we learned last May that we'd be having a child, our minds immediately went to dreams & hopes for our little one. But as circumstances changed with Isaac's condition, that dream would change to fit reality. Those dreams today are far from where they were originally, but they are just as good - simply different. At times, this deviated "pill" feels hard to swallow with all the equipment & seemingly unnatural modes of living. In those moments, we find comfort & strength in remembering that God's purposes are always perfect & for our good. And with a prayer & one glimpse of our sweet boy, anxieties melt away, leaving us once again filled with peace & promise for the days ahead. Our new dreams are filled with hope & amazement with all God has done. We are most blessed!

Game Plan

Its amazing to think that "home" is even in the discussions for Isaac's care now. Hopefully, if everything continues the course & Isaac doesn't throw us for any more loops, we'll be heading home in about a month or so! God is so faithful!

Goals for this week are as follows: establish full feeds through the GJ tube, transition to the home vent, & avoid infection. Join us in praying for these things. So far, Isaac is halfway to his goal feeds, but has spit up bile several times throughout today. We're currently working to determine the cause of this gag & reflux pattern.

Our strong boy is making progress, one baby step at a time. We praise God for all He has done in our lives & all He has yet to do.

Baby Steps Forward...

Isaac has made tiny baby steps forward this week. With each wean of his sedation meds, he shows his sweet personality more with curious blue eyes darting around the room as if taking in the world for the first time again. We've held him for several hours each day since his trach change & love every moment that he's in our arms. (thus the lack in blogs recently) Our sweet little red head continues to amaze us! And while remain deeply grateful for the excellent care he continues to receive at UNC's PICU, we grow ever more eager to be gone from Chapel Hill & back home again.

Throughout last weekend, he had continued trouble keeping his feeds down & we determined that the pyloric valve between the stomach & small intestines had narrowed, making it difficult for feeds to pass through. So Isaac traveled back to VIR to change his G-tube to a GJ-tube. Now, he has access into both his stomach & his jejunum. He's slowly working up towards goal with feeds going directly into his intestines. He'll be on a feeding pump continuously for at least a few months until surgery can go in & fix the narrowed valve. Our home vent has also arrived, so we'll begin training on how to operate the machinery that will be going home with us. In the next couple of weeks, we'll also be meeting some of our in-home nurses (required for all children with a trach).

So Isaac's goals at this point are to successfully transition to the home vent, establish goal feeds, & transition off all intravenous meds. Hopefully, we'll only be here for another month & then home for a bit before his next heart surgery (between 4-8 months old). What a blessing to have UNC only an hour away rather than out of state! It's truly amazing - Isaac turns 12 weeks old tomorrow!!! Where has the time gone...

Happy Mother's Day

I want to give a huge Happy 1st Mother's Day to the most amazing woman in the world, my gorgeous wife, Patience! Isaac and I are forever grateful to God for giving us such an awesome woman. Patience, thank you for being an amazing wife and mother. Your life has and will continue to make an enormous impact, not only on our lives, but also on this world. From the bottom of our hearts, we love you!

Jordan & Isaac

11 Weeks Old!

It has been several days since our last post with good reason: instead of sitting at bedside writing blogs & reading stories, we've been holding our sweet boy!!! How wonderful to spend hours rocking Isaac in our arms, reading him stories & kissing his precious face. Isaac spends the time looking round his room from a new perspective & then drifts off into deep, peaceful sleep. However, he always becomes bright-eyed whenever he hears Jordan's voice. He certainly loves his Daddy!

Since Wednesday, Isaac has successfully weaned from both blood pressure meds (epinepherine & dopamine). We've been able to cut his vent support rate in half & begin feeding him from his G-tube slowly. So far, he's had difficulty with feeds, spitting up several times last night. So we'll start over slowly & see if he'll tolerate them better with time. The edema continues to come off slowly. So we're making some progress. Now, our focus is establishing nutrition through stomach feeds & weaning from the vent & sedation meds.

What a joy to still have our sweet boy here with us! As he's been more awake lately & in our arms, we fall more in love with him each day. More details to come later today or tomorrow. But for now, time to go back to holding Isaac!

To all those with a mother's heart, with or without children of their own: thank you for the love you bring to this world. Happy Mother's Day!

Where We Are Now

After another eventful day, here's where we are now with Isaac:

The I.J. line is working well & will hopefully last for a while. At this point, both subclavian & the left femoral access points are no longer options with the verdict still out on his right femoral. So we need for this line to stay patent. Isaac's blood pressure has held steady for the most part today & we've begun weaning one of the three b.p. meds he is on. So far, he's doing well in the process. His pH took a dip through the afternoon, but has come back up to 7.31 - almost to the normal range. After peeing like a champ yesterday, we've cut back his lasix dosage so as not to diurese him too quickly. Way to go, kidneys! He still has a fever of 37.7 C (roughly 100 degrees Fahrenheit), but at this point nothing has grown out in the cultures taken two nights ago. His right lung has sounded rather wet & junky today, so we've done PT on him to help keep the lung open. Hopefully it won't collapse. He gets his first trach change tomorrow. Once this has occurred & as long as he is stable enough, we should be able to hold him again!

So for now, Isaac is moving in the right direction. He has proven to be a moment-by-moment individual, but at this moment in time, he is fast asleep. Thank you all for your heartfelt encouragement & many prayers for us today. Even in the midst of this rollercoaster ride, we've been overwhelmingly grateful: for the phenomenal medical team here at UNC's PICU, the outpouring of prayer & support from so many around the world, & the never-ending faithfulness of our awesome God. What a gift. Thank You, Lord, for one day more with our sweet boy.

I.J. Line In Place

An IV has been established in Isaac's jugular vein & meds are successfully being administered through the site. Both subclavian access points are no longer patent, so we're running out of access options. However, the I.J. line is working for now. More to come soon on Isaac's overall status...

Isaac is still in VIR. They were unable to establish subclavian access as that vein is no longer patent (open), so they are now going for an jugular line. Not the best of news, but at least we still have a few options at this point.

Brief update w/more to come soon...

Isaac's central line began leaking this morning, causing him a significant drop in blood pressure. We've manipulated his leg for better flow & increased the epinepherine to compensate. He's about to go down to VIR to attempt successful placement of a subclavian line under fluoroscopy (where they use contrast to visualize the veins for placement & threading of the cathetar. This is crucial as he needs these meds to maintain blood pressure right now.

PLEASE PRAY for success in establishing this access point!!!! I'll let you know the results once he's back.

Morning News

Through the events of yesterday & last night, we were once again provided peace amidst the madness, knowing that the ultimate results of Isaac's health are out of our hands & resting in the palms of Almighty God. He is not ignorant of our cries nor Isaac's condition, but carries us all through the storm. And while we may not always understand His hand, we can always trust His heart. So we continue to pray & intercede on Isaac's behalf, knowing that in the end whatever answer comes is for a purpose from a God worthy of our trust.

Our sweet boy made it through the night. Once a third medication, dopamine, was added, Isaac's blood pressure stabilized in the 40 map range. He's been peeing like a racehorse, slowly pulling the edema from his body. However, around 5a, he spiked a fever of 102. Cultures have been sent from all points of access in his little body & until they results come back, we've added a broad spectrum anti-fungal medication to go along the the three antibiotics he's currently on. Right now, Isaac has a low grade fever & continues to hold steady with his blood pressure. We'll be watching his levels closely throughout the day. While a fever is not good, this at least give us more direction in trying to find the root cause of his sickness. Hopefully the cultures will give the answers we're looking for. Our prayer is for strength for Isaac to get through this bend in the road, overcome whatever infection may be brewing within, & to stabilize more on his own. Also, the medical team mentioned trying to gain new access in his left subclavian vein so that we can remove the femoral central line that has been in place for several weeks. This would also help with circulation in that leg as it has been poor since Friday.

In short, Isaac made it through the night. He now has a fever which points to some type of infection within. He's finally responding to the blood pressure meds & is peeing efficiently. Goals for today: possibly gain new access, determine type & site of infection, gain pH balance, continue to diurese without depleting hydration within his veins (basically pee off the right fluid). We'll post again later today with his progress.

Update

Isaac's pH is improving, moving towards safe levels. However, his blood pressure is much worse - map in the low 30's despite increased epinepherine & added milrinone.

Long Day

Sweet Isaac is having much difficulty today. He's retaining a TON of fluid & has had very low blood pressure all morning despite being on a large continual dose of epinepherine. His pH is still quite acidotic, though has slowly responded to the temporary relief of bicarbonate. Long story short - Isaac needs to get over this hump & soon. Please intercede on his behalf.

10 Weeks Old!

The sun is shining bright here in Chapel Hill, where our sweet boy turns 10 weeks old today! I find myself amazed in looking back on all we've gone through so far &, in spite of so many obstacles, how much Isaac has grown. His red hair has filled in nicely since his grand entrance with a mullet in February. As the sedation meds continue to slowly wean, his personality shows through a little bit more each day. Mr. Personality, he's quite a charmer. But there's no room for guesswork when he's upset or irritated - Isaac lets you know!

On the road to recovery, Isaac is experiencing some speed bumps today. His pH continues to be low & acidotic, causing fatigue & strain on his heart. Respiratory therapy has gone up significantly on his vent settings to compensate. His central line no longer draws back & has begun to leak, so we're hoping to thread a new cath over a wire. Once Isaac is successfully feeding through the G-tube & IV nutrition is no longer needed, he'll only need a peripheral IV instead of a central cath line. Hopefully we can last just a few more days on the line he has as the PICU team has been given the green light to start feeds through his G-tube today. However, Isaac continues to become more edemidous with minimal urine output over the past 24 hours. His liver is somewhat enlarged as well. Isaac's body temp has been low today, so blanket & a neo-natal warmer are being used to help. The concern, however, is that this may be the temperature drop before a fever spikes. Much to pray about.

Isaac has come a long way, but he still has quite a ways to go. Our goals/hopes for today is to rewire the central cath for adequate access & blood draws, establish slow feeds, bring his pH to normal levels, & get him to pee out a lot of excess fluid. Lots of area for prayer. We're so grateful to our awesome God for the time He's given us so far with our sweet boy & for bringing him through so much already. Five surgeries in only 10 weeks of life - that's a lot for anyone to go through, let alone a newborn. We have seen God work in miraculous ways in Isaac's life already & are asking Him to do it again.

Continue to pray for Isaac as he recovers from these latest two surgeries. We are currently watching his pH & potassium levels. He's been acidotic since coming out of surgery, which can be a usual responce. However, he's taking longer than anticipated to bounce back as his body is fatigued & thus making us compensate by going up on his vent settings. His blood pressure has also been on the low side. Isaac just needs to get over this hump in the recovery process.

Out of surgery! Now, a new phase in prayer...

Isaac is back from surgery & everything went well. He'll be kept still & sedated over the next few days to allow both the stoma (hole for the trach) & G-tube tract to mature & heal. As with most surgical procedures, the first 24 hours are most critical. The areas of concern following these two procedures are infection, stability of the airway, and stomach pulling away from suture site. So far, Isaac's holding steady & cute as can be without the tape on his face.

Dr. Rose just came back to report the tracheostomy was successful. Everything went smoothly. So we continue to wait as Isaac is now having a G-tube placed.

Off to the O.R.

The anesthesia team just wisked Isaac away to the O.R. for his latest round of surgery - a trach & a G-tube. We're grateful that he is able to have these procedures done today as it took much coordination between the two surgical teams. He should be gone for only a few hours. We'll post an update once he's back from surgery. For now, we wait & pray...

Surgery Postponed to Tomorrow, Possibly Monday

Due to complications in an earlier surgery case, Isaac was unable to go to the O.R. today. He has been added on to tomorrow's schedule at this point. If something arises tomorrow delaying the procedures, Isaac will get his trach & G-tube on Monday. So for now, he's resting sweetly. We'll keep you posted of any changes as they may come.

One O.R. Trip + Two Procedures = Progress

As you know, Isaac will return to the O.R. tomorrow for a tracheostomy. While under general anesthesia, he will also have a G-tube put in place to help with feeds. In light of his cleft palate, the pending trach, & having an ET tube in his mouth since birth, the medical team has wisely determined that a G-tube would most benefit Isaac at this point for feeds. Having never been fed orally combined with the risk of food aspiration, the G-tube will allow him to receive nutrition directly into his stomach & thus optimizing his nutrition. Once Isaac's palate is repaired, we'll be able to work on teaching him to swallow & feed by mouth. We're thrilled that Isaac will be able to undergo both procedures in one trip to the O.R., thanks to the efforts of his doctors in coordinating the two.

We are deeply grateful for the excellent medical team caring for our sweet boy. They continue to give not only phenomenal care & advice, but also heartfelt compassion & care for our family. Join us in prayer for Isaac's fifth round of surgeries - for smooth procedures & quick recovery. Both the trach & G-tube are steps forward towards home.

Tracheostomy set for Thursday

Well, today has been a day of clarification. The morning began with Isaac in optimal conditions for extubation - vitals, nutrition, vent settings, the works. We were thrilled to see our sweet boy's face when they removed the tape & pulled out the ET tube. To see his whole face without tape or tubes...what a blessing! We must have kissed those sweet cheeks a hundred times! Isaac sailed through the first half hour, sating in the high 80's & holding a steady, comfortable heartrate. However, he was unable to cough on his own &, with the build-up of secretions in his lungs, began to tire quickly. In spite of suctioning & albuterol treatments, Isaac simply had to work too hard to breathe & grew too fatigued to clear his lungs on his own. So after nearly two hours, our sweet boy was reintubated & allowed to rest once more.

We are so proud of how well Isaac did, especially considering that he's been intubated for 9 weeks & his many issues (diaphragm, vocal chord, pharynx). He's certainly a fighter, never giving up even when its hard. Now we know for certain that a trach is the best & necessary option in moving Isaac towards recovery. He will head back to the OR on Thursday morning for the tracheostomy. Though this route is different than we had expected, we're happy to move forward in getting Isaac well enough for home. God remains faithful & even when His answer differs from our hopes, we still trust Him, knowing that He heard us & has greater plans in store. We now look ahead to surgery #5.