(Original appeared April 14, 2016)

Is. 40:28: Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable.
So, we begin with that verse this morning. As we wake from little sleep last night, wondering what today will bring, struggling to cope with the reality of the situation as things start to settle in deeper, we were tempted to feel sorry for ourselves. We wonder “why us?” and “how can we get through this?” I check my phone for overnight messages, of which there are many these days, and on the main screen, front and center, is my Bible verse app with the verse of the day. About 75% of the time, that daily verse is so on point with whatever I’m dealing with in life. But this verse from Isaiah was today’s verse. It addresses what I was dealing with right that second. It’s the swift kick in the rear-end I needed – to know, firmly, that God is in control. I likened it to God’s conversation with Job, which, paraphrased, went something like “Listen pal, were you there when the universe was made? Who is control here? Sit tight, I’ve got this.”
And then we visit with Jacob this morning. The attached photo is what he looked like when we found him this morning. He was the epitome of relaxed, knowing that he was cared for and in God’s hands. He had his foot propped up, just chillin’.
Jokes aside, you’ll also note that they had to strap his arms down a bit to prevent him from pulling off his leads. He seems to tolerate this well and it keeps him more cozy. Things appeared to be going well overall. Tomorrow he’s scheduled to have an ultrasound to check for any bleeding in his brain. We pray fervently that there is little to no bleeding. The better the results of that test, the sooner we move toward being able to have Deb hold him for the first time. -R

(Original appeared April 13, 2016)

The NICU policy doesn’t allow minors to visit due to concerns over flu and other illnesses. Addison, Jacob’s big sis, has been struggling with this. She wants to see him so badly, and photos/stories just don’t cut it. So we hatched the idea (and got approval from the doctor) to do a video feed from the room! Deb was there, holding her phone, while I was home with Addi. We were able to video chat, and Addi got to see Jacob up “close” as well as his entire room. It was a neat experience, and we are so grateful to the staff that they allowed us to do that. These seemingly small things mean the world to us right now, and it certainly helped cheer us up after a rough day.
Speaking of the day, thank you for allowing us to share a tough moment in the last post. The latest is that Jacob is stable. His vitals bounced back nicely and he seems none the worse for wear. In fact, he was active and enjoyed grabbing his “leads” on his chest and disconnecting them. This of course triggered false alarms but at least the cause was a bit more comical this time. We also learned that he is beginning to take breaths on his own more frequently – about half the time. Perhaps in the next week or so, they doctor will put him on a different ventilator that will assist his own breathing rather than the current one which breaths for him all the time. That will be a huge step forward.
I’ll finish this post with another thank you to all of you. You’re support has been incredible. And I’m so glad that you are joining us on this journey by reading this blog. Good night for now, and blessings to you all.

(Original appeared April 13, 2016)

Today has been quite the day. I’ll start quickly by saying all is well. But we took quite a course to get back to well.
Jacob’s heart rate was running over 200 bps, which is not good. It also appears that he has PDA (read this link here for more info). The issue is that the “hole” in an infant’s heart which naturally occurs in utero, and typically closes up shortly after birth, remains open for Jacob (and most preemies). While this is common and expected, it can lead to other issues. His heart murmur indicated PDA, and so we were ready for it. But hearing the news just brings it home in a way that is harder to receive emotionally. Jacob’s other vitals are doing relatively well and so the idea is to have a second heart ultrasound on Monday and compare with the prior one so that we can see his progress. If his PDA isn’t getting better, it will be treated with medicine. If it is getting better, then we’ll let it heal by itself.
Perhaps the more stressful issue was that as I am approaching his room for an afternoon visit, I see the nurse, doctor and respiratory therapist working on Jacob in a pretty serious manner. At the same time, alarms are ringing off indicating that his oxygen level has dropped and his heart rate had slowed by quite a bit. I look up and watch the numbers. They drop, drop, drop. All the while, the staff is working calmly and confidently to “fix” the issues. I sit down with Deb in silence, holding her hand, watching the drama unfold. Within minutes, the staff has solved the issue and his levels began to rise. Slowly but surely, his vitals hit the points that they had been for the last several hours.
To those in the business who see that sort of thing all the time, it may seem like a regular day at the office. The staff was so professional and calm as they worked. The nurse even took time to explain that all is well as we watched. But to Deb and I who still view our newborn through a plastic cage, it seemed like 10 minutes in the meatgrinder.
As I finish this journal entry, Deb just notified me that J is doing much better following all of that, and that his murmur is not as noticeable as before. Also, he received another swab of mom’s milk and loved it. He really latches on to those swabs, and then licks his lips for minutes afterward. That event is so rewarding for all involved.

(Original appeared April 13, 2016)

It’s a good time to mention that Deb has a ghost writer for these journal entries until she gets things squared away into some normalcy. So if you read something incredibly awkward, or super fantastic, don’t pin it on her. Her only fault in a bad entry is related to her choice of ghost writers =)

That said, I read your comments to her everyday. We share tears of joy and hugs as we read them, feeling the love each of you show us. Hopefully soon she’ll get off her duff and write a note here for you all herself. Know that she is doing well, sends her best, and we love you all! – Rob

(Original appeared April 12, 2016)

For those that have been down this path, the concept of a “honeymoon phase” may sound familiar. It’s the period of time immediately after the birth of a preemie when things seem to be steady and well. Then the honeymoon ends and things start to get scary, tragic, or worse as the baby’s condition slides backwards for a time.
The medical staff has been preparing us for this. Although it’s not a certainty, the probability is that it will happen. And we can’t help but be concerned. Yet we have faith that we will get through it when it arrives. We hope to take two steps forward for each step back.
But for now, current reports are that all is well with J-dub. His vitals are solid and his blood work has actually been impressing the nursing staff. He is earning his hospital nickname “The Rockstar” at the moment. So hang with us and let’s see where this roller coaster is about to take us.

(Original appeared April 12, 2016)

Just a quick update. Yesterday and again this morning the docs and nurses heard a heart murmur. They reassured us that it not something to worry about at this stage, and is in fact quite normal. They performed an ultrasound on his heart to see what’s going on and we’ll await the results of that this week. At the moment, we believe this to be an “innocent murmur” that will resolve itself over time.
Oh, and Jacob was treated to a new stocking cap. Apparently, some gracious volunteers knit caps and booties for preemies. This cap is beautifully made, with obvious care, and is so small. Yet, when placed on his tiny head, it looks like a mix between a U.N. military helmet and that kid from the Fat Albert gang with his hat pulled down over his eyes. Anyway, it’s cute, and we really appreciate the kindness of others.

(Original appeared April 12, 2016)

The early reports this morning (Tuesday) are that J had a good night. Deb got some much-needed rest too and is doing well. Big sis, Addison, also crashed. It was a good feeling waking up this morning to a tad bit of “normal”, having all of us sleeping in our own beds, and having breakfast together with smiles on our faces.
We also want to take this moment to quickly say “thank you”. It would take me days to express to each of you our thanks for all of your kind words, and for your offers, and for your prayers. Please know that they are being felt.
So far, I think a good analogy for this journey is a steeplechase – the horse race with hurdles followed by large pools of water. The race seems smooth until you hit a high hurdle. And just as you cross the hurdle, you typically land in the pool. Finally, after having worked to get out of the pool, you’re back on track running smooth. And yet, God has made that track smooth for us; He’s made the hurdle not-quite-so-high; He’s made the pool fairly shallow. And… he’s placed each of you at the exit of each pool, hands extended, pulling us out and sending us on our way again. So, now you know why we cannot simply say “thank you” and have it be enough.

(Original appeared April 11, 2016)

Sorry for that title but I couldn’t resist a bit of humor tonight. And I should also begin by adding that I, Rob, have been making these entries so far for Deb since she’s been a bit busy doing mommy things. So, for now when you read these journal entries, just know that Rob has likely written them. Be sure not to give Deb a hard time for any errors or awkward moments =)
Tonight after work, I was able to spend some time with Deb and Jacob in the NICU. We were able to watch as the nurse took just a drop of breastmilk and swabbed his tiny mouth. Almost immediately, Jacob latched on to the swab and began suckling; he just would not let go. What a neat thing to see his reflexes kick in already.
Soon after, the nurse asked if I wanted to take a photo of Jacob while having my gloved hand inside the “incubator” to give a perspective of size. Then, she laid it on me – the offer that made my entire day. She asked if I wanted to have Jacob hold my finger. Nervous, yet curious, I agreed of course. Having lubed up with sanitizer, and put on a glove, I cautiously stuck my hand into what up until now had been such an off-limits zone for us. The feeling was exhilarating.  I edged my finger close to his right hand and, ever so gently, touched his index finger. Knowing that his finger is not more than the size of a toothpick, I feared injury. And then it happened. He opened his hand, as if searching for mine. I edged my finger a bit further and without any hesitation he grabbed ahold. I was impressed with the firmness of his grip – his entire hand is only about the size of a nickel. And so with my left hand being held by my new son, I took photos with my right. I have attached one of them. I could have stood there for an hour letting him hold my finger. But I knew it was best that I break that bond for now and let him get back to sleep.

Deb was also released today which is great news. As I walked from his room and escorted Deb from the hospital into her first breath of fresh spring air in three days, I was truly floating on air. I understand that days like this will be rare, and we are about to face some serious challenges. But for today, for that moment, Deb and I allowed ourselves to surf the high tide. And what a feeling it was.
PS: Thanks to you all for joining us on this journey. It’s been nice to purge the news into these entries, and it is so nice to hear such kind and encouraging words from all of you. Again, thank you!

It has taken me over 24 hours to come up with words to describe the wonderful event of having Jacob baptized on Sunday afternoon. The entire experience was emotional, such that I must choke back a few tears as I sit here and write this. Deb and I felt that having him baptized sooner than later was appropriate under the circumstances. When we called our Pastor, he whole-heartedly agreed and we cannot thank him and his family enough for dropping everything that afternoon for us. Keep in mind that this is Sunday, right after a full morning of worship services and Bible study. Add to that the fact that Pastor’s family was at lunch moments before celebrating a milestone birthday, and, well, you get the point. The words “Thank you” are simply not enough.
After a short visit among the adults, we made the trek to the NICU. Due to the extreme precautions, we were a little fuzzy on how the procedure would/could be done. The nurses stepped in and were such a great help.
First, water. We couldn’t simply introduce tap water into his environment. The nurse grabbed us some sterile water.
Second, delivery. We couldn’t touch Jacob. So, we asked for something small like a medicine dropper – perhaps we could make some small drops of the water. The nurse left us, and returned with a second nurse who, watching what we were attempting, had found an actual small seashell. The fact that we could use the very symbol of Baptism itself during this event caused a collective sigh to go through the room.
Following a slightly abbreviated order of Baptism, Pastor expertly navigated the enclosed “incubator” chamber through a small arm hole, held the shell and water over his head with gloved hands, and gently guided three drops onto Jacob’s head. There wasn’t a dry eye in the room (and perhaps in the hallway?) following the ceremony and the prayer afterward. And, the relief of knowing that Jacob’s salvation is locked in, by God’s Grace, was such a lifted burden at that point given the journey we had just been on since Saturday evening.

(Original appeared April 11, 2016)

Jacob made it through the night well and I think we all got some decent sleep. It is so interesting to watch him sleep so deeply, and then hours later see him twitch and move and squirm. The deep sleep is healthy and allows him to grow, but the movement is more reassuring for mom and dad!
Part of the normal process of monitoring, etc, is for the nurses to draw blood. Unfortunately at his stage, he doesn’t make blood as fast as it’s being drawn out. So he’ll need a transfusion today. While it’s necessary, its still a worrisome issue to deal with – one of so many. In a few days they will check to see if he has any bleeding in his brain. That is a significant step on his journey, and we hope that all is well with that.
Finally, to each of you reading this, please know that we are so lifted by the love and support you’ve shown us. We’re overwhelmed by your words of encouragement, and we do indeed feel the comfort of your prayers. Things are still fresh and we are getting a lay of the land, and so we’re not sure exactly what we “need” at the moment. But your offers to help are kind, and we appreciate them.
So for now, I ask this one “need” to be met. Take this opportunity, this journey of ours with Jacob, and spend a moment with your own families in prayer. Even if it is a simple “popcorn” prayer in which you each share your thankfulness and concerns with God and each other, the experience will be one you’ll never forget. If you don’t already do this, it will seem awkward at first. But that feeling will pass as you become more comfortable with not just the process, but the impact of your praying together. And those times must be experienced among family, as often as possible. Do that one thing please, for us. Deb and I would love to read your comments about how your family prayer time went. -Rob