(Original appeared May 24, 2016)

“’O death, where is your victory? O death, where is your sting?’ The sting of death is sin, and the power of sin is the law. But thanks be to God, who gives us the victory through our Lord Jesus Christ.” 1 Cor 15:55-57

Today we celebrate Jacob’s homecoming into the loving arms of his Lord and Savior. Jacob was unable to recover from the stress of the surgery. His heart was already weak and just was not up to the task. The surgery took place about 3pm on Monday afternoon, and Jacob passed just after 1am Tuesday morning.
We know that Jesus has welcomed him, to join him at a seat on his lap, rejoicing that another lamb has returned to him. And while Deb, Addison and I (along with our entire family) mourn bitterly, we receive great comfort and overwhelming peace with this knowledge. How do I know this is true? Because Jesus took the time to tell us precisely that very thing.

“See that you do not despise one of these little ones. For I tell you that in heaven their angels always see the face of my Father who is in heaven. What do you think? If a man has a hundred sheep, and one of them has gone astray, does he not leave the ninety-nine on the mountains and go in search of the one that went astray?  And if he finds it, truly, I say to you, he rejoices over it more than over the ninety-nine that never went astray.” Matt 18:10-14

God’s design for us did not include this brokenness. He did not intend for Jacob to struggle, or for us to mourn. Instead, understanding the brokenness, God sent His son for us. What comfort we have knowing that our God, who lost his very own son, feels our sorrow and pain at this moment. What a relief to know that, having felt it himself, He will grant us the peace we need to keep going forward.

We will struggle with the “Why?” questions, and the various temptations to be angry and upset for quite some time. I just can’t imagine facing all of that without the knowledge – the firm grasp and conviction – that Jacob is safe at home. I hope to continue this journal for a little while longer simply because it will help Deb and I to purge. Feel free to stay along with us as long as you wish.  But for now, we want to you to grab your kids and hug them tight. Look them in the eye and tell them that they are loved. Treat them as the precious gifts that they are. Do not let even one of them be despised or go astray.
Our little boy has left us for now, but we will reunite with him in the midst of God’s great glory. And I am sure He will give Deb and I a wink and say “I told you… I’ve got this.”

(Original appeared May 23, 2016)

Surgery was successful. The doctor found a small tear near his colon and sewed it up. There will be a follow up surgery later this week. The thought is that today’s surgery may relieve some of the pressure inside, which could help kidney function, so that fluid retention will drop. It’s quite a process but for now we are very relieved. We are waiting for the all clear to go visit Jacob, so more updates are likely.
Thank you all for the kinds words and prayers. They mean more than you know.

(Original appeared May 23, 2016)

Jacob is up to 2lb 14oz and 14″ long. We are thankful for his continued growth!
He is getting another transfusion of red blood cells (he has had a few of these along with platelets lately). Despite the issues with blood, belly, liver and kidneys, his lungs appear to be doing well. Today he will get his weekly brain imaging to see how the blood and fluid is doing there.
Surgery is all but scheduled for later today. The idea is to explore what is going on in his belly and if something, like a perforation, is discovered the surgeon will fix it.
Today will be a very busy day for him. We are both nervous and thankful for this. We hope that whatever happens Jacob will continue on the road to recovery and continued growth.

(Original appeared May 22, 2016)

Have you ever felt as though something was difficult beyond your abilities until you had to endure it, and then having met the challenge later realized that it wasn’t as bad as you had thought? An experience like that can reset your perception of where your limits or tolerance might be. The process can open your eyes to more possibilities, and encourage you when you face the next trial.
Years ago, our family was visiting my aunt, uncle and cousins in North Carolina. We went to a seafood joint near the beach for some of the best seafood chowder in the world. I learned that the proper way to ‘dress up’ chowder was with hot sauce. Until this day, I was a wimp when it came to spicy foods and so I feared anything hotter than tabasco. The hot sauce we used on the chowder was extremely hot and I initially thought I might suffer in two ways after ingesting it if you catch my drift.
After this experience, tabasco didn’t seem so hot any more. I began to try new and hotter hot sauces over time and eventually came to appreciate this original chowder hot sauce as being merely flavorful rather than spicy.
Life experiences can be just like this. For instance, public speaking isn’t as bad the 10th time you do it as it was the first. High school isn’t as bad compared to grad school. A “boo boo” on the elbow when you were 6 years old now pales in comparison to the dislocated shoulder earned in a pick up football game.
And so it goes with our experiences with Jacob. The troubles 6 weeks ago have raised our tolerance for the new troubles that show up. This weekend was not a good one for him. His abdominal issue which Deb mentioned in her earlier post is a primary concern at the moment. He faces likely surgery early this week. That alone is enough to cause grave worry for us. And yet, we are more peaceful about it because we realize the value of knowing he had a serious issue that was just discovered before it could get worse. This is comforting. We are able to appreciate this new hot sauce.

I’ll leave you with this. “You shall love the Lord your God with all your heart and with all your soul and with all your might.” Deuteronomy 6:5.

Notice it doesn’t say “Love God…when times are good.” Or “…when loving God is easy.” We are to love him with everything we’ve got ALL the time. And so we will praise Him in this storm, knowing He holds Jacob and us; knowing this hot sauce is part of His plan for our growth and the continued formation of faith within our hearts. We lean on Him more now than ever. And, that really is the whole point right? -R

(Original appeared May 21, 2016)

“In him we were chosen, having been predestined according to the plan of him who works out everything in conformity with the purpose of his will, in order that we, who were the first to hope in Christ, might be for the praise of his glory.” – Ephesians 1:11-12.

Jacob is doing well considering the obsticles we’ve shared in our previous entries. We’ve continued to feel stumped as to the particular ups and downs of Jacob’s events. Upon review of a recent abdominal ultrasound a large mystery pocket full of air & fluid was discovered on the right side of his abdomen. That has essentially pushed all his intestines to the left side of his body. So last night the doctor decided to ‘pop the bubble’ if you will and placed a “drain” in his belly.
Jacob has been a strong little boy through the whole procedure. As we watched his heart rate and oxygen levels you wouldn’t know that he was going through anything out of the ordinary. After the procedure the nurses started to wean his oxygen levels down to 21% and he stayed there all through the night! Way to go Jacob!!
Xray this morning showed the mystery bubble collapsed/gone and intestines starting to shift over to right side. The doctor will decide tomorrow if surgery will be needed or not.
We are praying that we have found the culprit to Jacob’s issues with regard to his urine, blood count, fluid retention and so on. With the procedure last night we will have to forgo kangaroo care for a while.
Today Jacob seems to resting well. His chest xray looks the best it ever has been. His urine output is acceptable at this point. Thank you for your continued prayers as we have yet another hill to climb and valley to get through. We know that God will be right there with us because we were chosen and he has predestined this for his glory! -D

(Original appeared May 19, 2016)

All seems to be going rather nicely at the moment. The medical staff was worried (and so were we) over the last few days as to why Jacob was burning through platelets so fast. Shortly after he would receive a transfusion, his count would drop. The theories abound, but we don’t have a solid answer. Then today, his platelet count was just fine and so for the first time in several days, he won’t need a transfusion. Go figure. He seemed to be very restful yesterday and last night and so we gave him a day off from holding. Today, Deb gets to hold him again and she’s so excited about that.
There is a constant thought that looms in the background for us. Eventually, when he gets bigger, stronger and more stable, we will need to address some of the serious health conditions that he has. The hydrocephalus (water-on-the-brain) is still there, and so is his PDA (“hole” in his heart). We’ve been tending to so many other more “urgent” matters, and he is still so small, that there isn’t much we can do about those things currently. There is a sense of both dread and hope for the day when we must address these issues. For now, God is certainly “establishing our steps” and He hasn’t failed us yet. We’ll take the blessings as they come. One blessing includes having him receive swabs of breast milk again. Did I mention before that he LOVES those?

(Original appeared May 18, 2016)

Early this morning, Jacob was wide awake, peering into his surroundings. His nurse kindly snapped this photo for us!
Today, he will get yet another platelet transfusion. If I’m counting correctly, this will be his fourth day in a row. For some reason, he’s using up the platelets and his body isn’t mature enough to keep up with the demand. One theory is that there is an inflammation somewhere which requires the platelets. Whatever the reason, his platelet count is low just about every time they check it. Hopefully we’ll find out why, or that the issue will will resolve itself soon.
Since he needs the transfusion, we plan to take a break from holding him and instead give him a good rest today. This will allow Deb some time to rejoin the world and get some fresh air.
His urine output has been consistently good lately, and we’re thankful for that. There’s not much else to report for the moment. I will add, though, that the staff continues to lift our spirits in so many ways. For instance, it’s a running joke that the nurses “fight” over who gets to watch him for the next shift. This is truly heartwarming (to see the influence he has on people already!) given the fact that his fragile condition makes for a lot of hard work. And, his doctors and thereapists are just as thoughtful and caring. One of his doctors came in to visit him on what I describe as his “day off” just to run his PIC line. There are no words to properly express our gratitude for these intangibles. – R

(Original appeared May 17, 2016)

For those of you who may be 90’s rap music fans, that title may have caused you to chuckle a bit. If not, that’s ok. I won’t quit my day job.
Last night, the doctor successfully inserted the central catheter into Jacob’s right arm, known as a PIC line. We’ve been talking about this moment for a while now and the day has finally arrived. The use of this new line reduces risk of foul things happening and acts as a more stable delivery highway for meds, etc. It also makes kangaroo care easier. Big sis was very excited to share this news with her friends at school this morning.
Speaking of that, Deb gets to hold him for a bit again this morning. We can’t tell you how thankful we are for these opportunities!
He has also been having great urine output, and so they will proceed to wean him off some of the meds.
As I sit here staring at Deb holding Jacob, the emotions run pretty high. I can hear his small little grunts, suggesting that he is loving the experience. And the smile on Deb’s face is priceless.
“for you have been my help, and in the shadow of your wings I WILL SING FOR JOY!” (I added a bit of emphasis) Psalms 63:7

(Original appeared May 16, 2016)

Here’s a quick update from my investigative reporter on the scene:

• Deb got to hold JWM again for a bit today. He struggled with keeping his O2 levels up, and with the impending blood transfusion scheduled for today, they decided to end kangaroo care early for his benefit.
• The results of his brain scan showed no new significant changes. This is, personally, a mixed bag. I’m glad that things are not getting worse, but I wish things would show some large improvements.
• All indications suggest that the infection is gone. That’s a huge blessing.
• His blood pressure has been decent lately, and his urine output is once again doing really well. These things recommend a change in his meds. The current plan is to begin weaning him from some of the existing meds, and possibly replace them with others. If all goes we, we can get him back on regular feeding. In fact, Jacob received a swab of mom’s milk today for the first time in forever (you’re signing *that* song in your head now, aren’t you?) and he absolutely loved it. If we can get him back on milk, the nutrients and antibodies will do wonders for him.
• We’re still waiting to hear the final decision on trying the PIC line. Sorry if it seems I’ve been obsessing with that fact lately. It has been something to look forward to for a long time now, and we’ve hit every bump in the road on our way toward it.
• Did we mention we love the nurses and doctors and supporting staff?

Also, I have neglected to mention recently how much we appreciate the kind words, encouragement, cards, emails, chats, gifts, food, and so much more. We began this journey by sending “Thank You” notes in response. But frankly, we’ve been overwhelmed with kindness that I’d be smart to buy stock in a printing company if we were to send “Thank you” cards to each of you loving, caring folks. So, for what it’s worth, please accept our humble gratitude.

(Original appeared May 15, 2016)

“But now thus says the Lord, he who created you, O Jacob, he who formed you, O Israel: ‘Fear not, for I have redeemed you; I have called you by name, you are mine.'” Is 43:1
Several people have kindly referred Deb and I to this passage above. Sure, it’s easy to be uplifted with these words of encouragement and strength; to know that if God says “fear not”, then apparently He has things all worked out. But how does this passage truly “speak” to us in our situation. It certainly hits home, given the fact that the name “Jacob” appears in it, and is a statement of love from God to His beloved. Is it a far reach for us to apply the same statement to our own little Jacob (and us) some thousands of years later?
Jacob, just like his sister before him, is a true gift and an answer to many heartfelt prayers. Although neither child came along at a time of our choosing, nevertheless they are here now with us and bless us each day with wonder and amazement. Jacob’s entry into this world has been quite a bit different than Addison’s, of course. But his arrival has given us a wonderful opportunity to marvel at God’s creation and the amazing process of the early formation and growth of a little human being. Each day we witness events transpire which are typically hidden from the eye. Allow me to try to bring this idea home by reciting another beautiful passage:
“For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well” Ps 139: 13-14
Despite the anxiety, struggles and occasional fears that arise throughout this process in the NICU, we enjoy front row seats at God’s theatrical presentation of the formation of one of His very own beloved. So far, we’ve witnessed the assembly of motor neurons and their beginning communication with the brain; the formation of fingerprints; the development of the “startle reflex”, the early growth of hair (of which yours truly is very interested); and the opening of the eyelids. We have also witnessed the crash-course of body functions from organs that were not yet developed but have nevertheless begun in such a primitive way. In short, we are living each and every chapter of the popular book “What to Expect When You Are Expecting”.
As tragic as our story seemed on April 9th, all of that is in the distant past as I sit here staring at Deb holding Jacob – the both of them calm and peaceful. This story of ours is by no means unique, but it is so meaningful to us. Although I may have been tempted to shake my fist or to give up to despair or to wonder “why us” over the course of the last 5 weeks, times like this remind me of the many blessings wrapped up in this event. I wouldn’t change them for the world. Thanks for joining us on this wild ride. -R