(Original appeared April 16, 2016)

After such a bummer of an entry last time, I wanted to share a fun moment. Deb got to “feed” Jacob some milk using a swab. He really likes that, we figure, because he latches on to that swab for all its worth. Then when the swab is removed, he continues to lick his lips. It’s such a neat moment for many reasons. We are glad has has that reflex already, and that he and Deb are able to bond a bit.
The doctor continues to check for the heart murmur and has not heard it for the second day in a row. We are hopeful that the heart PDA is sealing up so that we have one less worry on our plate.
This afternoon he’ll get another blood transfusion to help replenish the blood that is drawn for routine tests. He got a favorable bounce after the last transfusion and we expect that today as well.
Deb and I got to enjoy some of the beautiful sunshine today and hope you all did too. This day was given to us, and we will still be thankful for it.

(Original appeared April 16, 2016)

We took the time last night to focus on the news we received yesterday afternoon following Jacob’s brain ultrasound. Since this journal isn’t intended to be a suspense novel, I’ll tell you up front that it was not the news we wanted to hear. And yet, 12 hours after hearing the news, we have come to grips with the full power of so many of the inspirational Bible verses and words of encouragement we’ve been clinging on to over this last week. For instance, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose” (Rom 8:28).
How can this situation be “good”? Could this really be the plan for us? Don’t we have the right to be angry with the situation? We have so many questions, and have a few unpleasant things to say about this ourselves. We are about to burst. And then “He says, “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.” (Ps 46:10)
***
Jacob has been diagnosed with Grade 4 Intraventricular Hemorrhaging (IVH). The grading scale is 1-4, 4 being the worst. Here is a link for a good description of IVH. Simply put, IVH is “bleeding into the fluid-filled areas (ventricles) inside the brain.” At a grade 4 level, the bleeding is severe enough that not only have the ventricles filled with blood but the blood is now leaking out into the surrounding brain tissue. This can cause blood clots to form, damaging the brain tissue and impairing/ending whatever ability that tissue would have had to perform in the future. The clots can also prevent the normal circulation of brain fluid, leading to a build up called hydrocephalus, sometimes nicknamed “water on the brain”. This leads to unhealthy pressure and may be treated with a tube inserted into the brain to drain the fluid.
The reality is that Jacob is at significant risk for developmental challenges. Yet we are hopefully due to the fact that the most common symptoms of IVH are not being seen at the moment. In other words, he’s healthy and his vitals are fine and show good progress, whereas in many cases of IVH-4, you see significant health issues associated with it.
Following the news, Deb and I shared that time together that some parents have also had to endure. The huddled hug-with-foreheads-touching sobfest. Deb’s sister visited shortly after we heard the news and this really lifted Deb’s spirits. I took the time to talk a walk. I found a lone park bench and in the quiet of the impending evening, bathed by growing shadows while the sun slowly set, I wept. Hard. I gathered myself to report the news to my brother. And to him I will be eternally grateful; he made it clear to me in that moment that Jacob is not done for – not by a long shot. Sure this is a hurdle, but it’s not the end of the road for him. While this is the worst condition for this one factor (IVH), it is not the worst for him overall. It means little more than that we have one more hurdle to jump. I was able to pull my big boy pants up, walk confidently back into that cozy little hospital room, and look with new eyes on Jacob. Deb greeted me with that smile that conveyed without words: “all will be well”.
On a personal note, all the poignant Bible verses and inspirational cat posters sure are cute until the floor falls out beneath you. It is then when God tests your mettle, and uses His very words to bring you close to him. The words are little more than print on paper until that moment when all seems utterly lost and broken. Maybe, just maybe, that is one of the reasons why he allows us to share these experiences with Him while He walks along side of us. Our relationship with Him matures, is refined, as things heat up.
“The Lord makes firm the steps of the one who delights in him; though he may stumble, he will not fall, for the Lord upholds him with his hand.” (Ps 37:23-24)
So, with that, Deb and I continue to learn, cope with, and understand that his ways are not our ways (Is 55:8-9), and that His plans will prosper us (Jer 29:11) and prevail (Prov 19:21). These words will not make this journey any simpler. We must still walk the path – a path we did not choose. We still grapple with the fact that we had our own plans, or own preconceived notions of how this should have played out. Now, we must leap from that planned path, in faith, to the one He has set out for us.

(Original appeared April 15, 2016)

Over the last two days or so, Jacob has been trying to breathe on his own but hasn’t been able to quite get there. Yesterday, he seemed to be “fighting” the ventilator more often. If the “fight” persisted, it could cause stress and possible lung damage. So he’s taken a step forward and they’ve placed him on a new machine called a Neurally adjusted ventilatory assist (NAVA), which is a “mode of ventilation controlled by the electrical activity of the diaphragm”. That’s a fancy way of saying that a new tube/sensor is placed down his throat which rests gently on his diaphragm. When it senses a contraction (meaning, J is trying to take a breath) it kicks in just slightly to help him out, giving him a slight boost. If it does not sense a contraction/breath for a period of time (called apnea), then it breaths for him. We now watch in awe and are thankful for each and every breath he takes (cue The Police). An interesting possible side effect is that his heart rate has dropped a bit. Perhaps he is less stressed now.
His overall status seems to be continuing to do well. The heart murmur was not noticeable this morning, suggesting that the meds are working to seal up the PDA (the “hole” in his heart). We will still stick with the Monday echocardiogram to see what’s going on with that. We would love to have that healed and have one less thing off his plate.
I am VERY thankful that I’m able to spend the day today with Deb in NICU with Jacob. It’s nice to know that my homies have the crib covered. We’re now waiting for the team to arrive for the imaging of his head. I’ll report as soon as we hear the results. If they go well, the nurse will be able to at least re-position him onto his side which will be a nice relief for him to get off his back.
Finally, I’ve included the latest photo, complete with blue stocking cap (recall: prior Fat Albert entry). I asked him to pose for ya’ll but he just said “Aww, dad, stop” and threw up his arm.

(Original appeared April 15, 2016)

I just checked this journal and saw that there have been 317 visits already. What a blessing that so many of you are joining us on this journey.
That number reminded me of one of my favorite verses. John 3:17. We know the preceding verse by heart, but how often to we read on? “For God did not send his Son into the world to condemn the world, but in order that the world might be saved through him.” For us, we are reminded that Jacob’s situation was not what God originally intended from the dawn of His creation. But despite the effects of a fallen world, he still loves us, saved us, and cares enough to see us through this.

(Original appeared April 15, 2016)

Today is the day for the ultrasound of J’s head to see the extent of any bleeding in his brain. Brain bleeds at his age are somewhat expected to at least some extent as we understand, but they can be small to severe. The severity determines the next course of treatment, and how soon Deb can hold him. We are REALLY looking forward to some good news on that front today.
As an aside, I couldn’t help but be amazed last night as I watched over him at 10pm that he was now 5 days old. How time has flown by. 5 days going on 16 as they say!

(Original appeared April 14, 2016)

I just paid a visit to JWM’s room tonight. He was very active, flailing all over the place. But things look good and steady. So with that, mama and papa are going to rest easy tonight. Love to all of you…

(Original appeared April 14, 2016)

Sorry for the flurry of entries this morning but my onsite reporter is feeding me news as it comes.
I mentioned earlier that the “hole” in Jacob’s heart was a concern that back then was as the border of whether to treat with medicine or not. Some new factors have presented themselves this morning that alone aren’t a big issue but when combined with everything else tip the scale toward treatment. So, today they will begin applying medicine (ibuprofen) to attempt to close up the “hole”, again referred to as a PDA, and we’ll see what happens. They are still on track with the echocardiogram (ultrasound of the heart) on Monday to compare and see if the “hole” is closing up. Perhaps it’s best that we start the meds now rather than wait until next week.

(Original appeared April 14, 2016)

When you measure time passing in hours and not in days as Deb and I are doing lately, it’s difficult to wrap our minds around what moment were at, and what all has happened in such a short period of time. So much has happened since this journey began at about 7pm on Saturday. Allow me to take this very brief moment to thank the many of you who have made such kind offers of assistance, who have encouraged us through words and prayers, and have provided gifts, visits, food, hugs, and even those who knew when to give some needed space.  You know who you are, and what you’ve done. But you’ll never know what you mean to us – and just how many tissues have been killed at your expense.

(Original appeared April 14, 2016)

Jacob had a high bilirubin count following birth which is not uncommon. High levels lead to jaundice, and are treated with phototherapy (big lights over his isolate “incubator”. The light helps break down the bilirubin so that it can then be passed in the urine. Jacob started with three phototherapy lights. One was removed yesterday, and another was removed this morning. This is nice progress for him, plus it has the added benefit of one less piece of equipment in the room to stumble over, or get in the way of our viewing him!
His heart rate remains high though. If I understood correctly, they held back the caffeine this morning to see if the rate would drop. We’ll see. I’m not sure if I explained the role of caffeine in prior entries, but the concept is that it triggers the portion of the brain that causes him to take a breath. If Jacob were still in utero, he wouldn’t need to worry about breathing. His brain hasn’t fully developed that part that says “breathe now, stop, now, stop, now”. And so, sometimes the reflex is there but when he sleeps, sometimes it doesn’t trigger. The caffeine helps stimulate that area to trigger even in sleep, leading him to develop the reflex to breath on his own. This is a good thing for long term growth. Of course, he endures the same side effects that adults do with caffeine, namely increased heart rate. So, it’s a battle of trade-offs.