(Original appeared May 1, 2016)

This entry is written by Big Sister, Addison:
“My adventure to Jacob’s room made me happy. What a fun adventure walking past all the rooms down the hallway. I met friendly nurses and brought them cupcakes for what a good job they do watching over all the babies. I was nervous and excited at the same time when I got to his room. I met Jacob’s nurse and she was really, really nice. I got to wash my hands and put on gloves and hold Jacob’s hand. I got to see his diaper being changed. I was nervous when his heart rate dropped. My little buddy made it, going up and down, and finally got back up a little bit. He squirmed a lot and liked to kick. He even kicked the nurse a little bit when she felt his tummy. He moved his arms a lot too. He opened his eyes and looked at me. It made us laugh! My friends made cards for Jacob and I hung them up in his room. When we left his room, he finally fell into a deep, deep sleep. We kissed him good night and sweet dreams. When we left, his heart rate was back to normal. I was excited, and enjoyed visiting Jacob and would do it many times again.”

(Original appeared April 30, 2016)

Jacob has surpassed expectations and odds by reaching a milestone today: 21 days. But it hasn’t been easy for him. You’ve been reading about his road so far, and last night was no different. After a rough day yesterday of tests and a failed attempt to insert a PIC line, he has been sleeping hard and mostly letting the vent breathe for him. (The nurse said he got his butt kicked). They’ve had to crank up the O2 to keep things where they need to be which is not the best news. But the staff reassures us that, again, this is the normal routine for an infant his age. It’s part of a growing process that was supposed to take place in the womb but he’s experiencing it out here. Today should hopefully be a day of rest for him so that he can catch up and begin to breathe on his own once more.
I want to add that Deb and I shared ‘a moment’ while shopping for some grocery items at the store. We treated the 20 minutes as a date, and after we had gathered our items and were walking to the checkout counter, the song Piano Man by Billy Joel played over the speakers. We began singing and slightly dancing together down the aisles like fools in our own world – enough to have fun but not enough to spark a phone call by management to bring in the men with white lab coats. God gave us just that moment to reconnect and reinvigorate. I just hope we were on camera.

(Original appeared April 29, 2016)

What an image, eh?!
For me, this is what it’s all about. I loved this moment and will cherish it forever. And now for the latest.
Jacob’s brain ultrasound revealed that the blood clotting was slightly reduced but that the spinal fluid was building up. We will be scheduling an appointment soon to consult with a neurosurgeon to discuss the next steps.
For much of the morning (basically while he was on his tummy) his O2 levels were doing well. Since they rolled him back over he’s been struggling to maintain good levels. The nurse said it best: he’s tired.
He has stayed steady on weight and is currently at 1lb 8oz. His kidney output is still poor but we are hopeful that will get better soon.
They tried to insert his his PIC line today but couldn’t get it done. This was the second try. Hopefully the third try this weekend will be a charm. The timing is geting more crucial for that line as every day passes now simply because his umbilical line is on its last leg. And we thought reality TV had drama? =)
His lung xray looked better, sort of. The images go from good to bad to good again and so it’s tough to track progress. Sometimes when they look their worst is when his O2 levels do the best, and the opposite can be true too. Who knows.
What I do know is that we are doing much better today. The nursing staff has been A+. We are slowly coming to grips with what I keep calling our New Normal. It helps to know that so many of you have survived your own struggles, just like this, and we love you for that.
I had been posting about twice a day. But now that work has picked up a bit and we are settling back into a routine, I may back that down to once a day. I am glad our ‘audience’ of friends and loved ones are along for this ride, and I thought I’d give you the heads up =)

(Original appeared April 29, 2016)

Thanks for letting us rant a bit and purge some of the junk that has built up. We want you to know that was healing for us and we’ve been able to start today with new vigor.
And now for the good news. Deb and were able to hold Jacob while his isolette was changed! It was only a brief moment but what a moment it was. And this morning he is now positioned on his tummy for the first time. He seems to love it. One indication is that over night he was struggling with oxygen levels again. They had his vent settings up pretty high. His fluid retention is pretty bad which makes all of that worse. Repositioning him seems to be helping because his oxygen levels went right up when they got him settled on his belly. He is sleeping very well too now. Hopefully the fluid will drain better and allow him to pee and will also relieve the stress on his lungs.
We now await the results of the brain ultrasound. Praying for continued healing on that front. Love to all of you!

(Original appeared April 28, 2016)

This morning began like most of our mornings of late. We get up early. I take Addison to school while Deb heads to the hospital to be present for Jacob’s morning assessments and to listen in on the last “scoop” on how he did last night. I then beat feet back to the hospital to join in the assessment. But today was going to be different. I just felt it for some reason.
The nurses reported that Jacob’s kidney function numbers are ok, but his actual output is basically zero. He’s filling up with fluid again and looks bloated. They switched his meds because the old ones aren’t working. He looks so uncomfortable. His lungs are back to being cloudy again, yet his oxygen levels were decent. His brain ultrasound is still scheduled for tomorrow, but I have a good idea that it won’t be good news since we can see with our own eyes that his head is enlarging from, what I’m guessing is, a build up of fluid. And while he’s on meds, he can’t take breast milk and so he’s losing weight again. For every bit of good news, there seems to be bad news to go with it. This is the roller coaster they warned us about.
The medical staff needed to exchange Jacob’s isolette for a new, clean one. I’m glad we were there to witness that entire operation. Actually it was more like a construction project mixed with a ballet; several people dancing here and there grabbing cords and tubes, unhinging plastic walls, and all the while making sure Jacob was secure. The whole thing took only a few minutes, and Jacob was soon safe and sound in his new home.
I’m not sure if it was this changing of the isolette, or what. I simply cannot put my finger on any one cause. But today seemed to be the day that Deb and I had just had it. The whole “thing” just hit all at once. That feeling of helplessness. The realization that this isn’t some sort of game we play where we can swipe left and change the screen to something else. We can’t just hand this off to someone. We can’t say “I quit”. We can’t just decide not to do this any more. 19 days of this. Stop it. Please.
I took Deb home mid-morning. Away from the beeping and the sanitized smell and the information overload and… the absolutely helpless son of ours laying in a plastic chamber by himself, struggling to survive without a darn thing we could do about it. Away. Today was different.
Today, we grew up. All this time we had been kidding ourselves, thinking that we were “doing well” whenever anybody asked. When we looked in the mirror, we’d grin and convince ourselves that it will be okay. We weren’t lying – we genuinely believed it. Perhaps we were trying too hard to hold it together for outward appearances, rather than allowing some time to shrink into our own cocoon, just the two of us, and try to absorb what was happening. We had until now relied too heavily upon ourselves and our notion of what was comfortable and normal. Until today. Today was different. Today was day 19.
And yet the hugs kept coming. The kind texts and emails came. The out-of-the-blue encouraging words came. The good news in other corners of our life came. The opportunity came to spend some time in the fresh air with a good friend. The flow of Grace and peace continues in earnest. And here I am typing this at the end of the day, next to Deb sleeping soundly. We survived. And Jacob still fights on. It’s time to refocus, pull on our big boy/girl pants, and start tomorrow fresh. Today is done. Tomorrow is day 20. -R

(Original appeared April 27, 2016)

I mention that number, 18, not because it is particularly significant in and of itself. I mention it simply because Big J is still with us and we are so very thankful for each of those days. These days have been both a sloth and rocket.
Today has been interesting. His chest xray of his lungs was decent again. His kidneys showed signs of backing off when they tried to wean him off the meds and so they will keep that going for now. The heart murmur is back and so his PDA hasn’t quite closed up yet. They will give it more time to close on its own.
His oxygen numbers continued to fluctuate all night. They think that could be caused by a blockage in the little tube that runs down his throat. And since that tube has been in for over 2 weeks, they changed it out. The new one went into place just fine but they’ve had to increase his oxygen percentage quite a bit to get him squared away. Hopefully he will settle and they can wean him down some.
On a side note, we’ve received such wonderful Bible verses and mini-prayers lately. We’ve also spent more time in prayer ourselves and contemplating all of those uplifting, encouraging verses than we ever have before. Thank you for those. But today one stuck out. Psalm 121. I invite you to read it with a new perspective. How wonderful it is to know that the makers of heaven and earth, someone so powerful, has this little situation in His hand. We know he will work this for good, somehow. We don’t know how, or when, or if the outcome will even be what we want. His ways are not our ways, and we have the great comfort that He’s got this.

(Originally appeared April 26, 2016)

Jacob had a bit of a spell early this evening. His oxygen level started dropping and the ventilator wasn’t quite cutting it. When his heart rate also started to drop, the nurse had to “bag” him, which means that she performed manual hand-pumping respiration for him (kinda like you see in the TV shows, but not so dramatic). They’ve had to do this for him a few times before. The first time was frightening for Deb and I. Each time it happens we just take it in stride now.
His evening chest xray showed great improvement over the cloudy one this morning. His nurse suggested that perhaps the bagging procedure caused things to open up considerably which showed as a clearer xray image. While this is good, it will likely be only temporary. We shall see what tomorrow brings.

(Original appeared April 26, 2016)

We hear this question often and remain humbled by everyone’s generosity. For the moment, we are comfortable both with the gifts that have already been given, and the current situation at home and work. Yet, it’s difficult to say “no, thank you” to someone with a generous and giving heart. Deb and I are still considering our needs now and what we can anticipate in the near future so that we can better answer that question “what can we do?”.
We explained this to Jacob’s nurse, who we have built such a wonderful relationship with already, and asked her opinion. Her answer was simple and to the point, and really brought some serious perspective:Donate blood. For those who are touched and moved by our situation, this is a perfect outlet for that “donor” spirit. She mentioned that blood supplies are at an all time low. I thought for a moment about the several transfusions Jacob has already had so far, and what might have happened if there was no available blood for him. Well, let’s say I stopped thinking about it.
His nurse mentioned that blood can be donated in someone’s honor (for instance, in Jacob’s honor) which makes it a more personal experience. I can’t tell you that a donation will go directly to him (it probably won’t). But the idea that patients, and parents of patients, don’t have to worry about supply is very appealing. And so, for now we will answer the question “what can we do?” with the simple response: “Give Blood!”
Dupont Hospital has a blood drive every Thursday. You can also click here for more info: http://www.redcross.org/give-blood

We also reiterate our request that you take this opportunity to prayer with your spouse, children, family and/or friends. See our earlier journal entry here about that. Nothing would make us happier than having our journey inspire moms and dads to realign their lives and spend time with their children in evening devotions and prayer.

(Original appeared April 26, 2016)

Early reports are that Jacob’s kidney functions are back in line. Not only is his output still good, but his blood tests are confirming that some of the alarming numbers from last week aren’t so alarming anymore.
He is also having a PIC line inserted today. PIC is “peripherally inserted central catheter” and is a form of intravenous access that can be used for a prolonged period of time. This will go into his arm and replace the line that has been inserted into his umbilical cord for the last 17 days. The line will allow a more long term solution to giving him his meds. It is also another step toward allowing Deb to hold him, so we’re excited about that.
They have adjusted the settings on his ventilator to reduce the amount it helps him breath so that he doesn’t become too reliant upon the machine, and begins to learn to work for himself. So far, he’s been doing pretty well with it. The “weaning” process is so touchy though. One day he’s great, and the next he struggles. So they constantly monitor that for him.
Finally, I’ve been waiting to show you a photo of his eyes open. Big sis wanted to be the first to share the news with her buddies and teachers, and rightfully so. I have attached a picture taken just a few days ago soon after he opened his eyes for the first time. He can’t “see” anything just yet other than maybe detecting differences in light and darkness. But having his eyes open truly “humanizes” the experience for mom and dad even more. The tubes, wires, beeps, buzzes and patches all disappear when we see those wonderful eyes.
Today, our little guy is 17 days old. That’s 17 days more than we thought we might have with him when all of this began. And we’re so very thankful for each solitary minute of those 17 days.

(Original appeared April 25, 2016)

The nurse weighed him today and even after the benefits of renewed kidney function he is now up to 1lb 9 oz. As a bit of quick history, his birth weight was 1 lb 7oz. He dropped to 1-4 in the first week, and then slowly gained over the second week to his current weight. This is positive news and suggests that mom’s milk is helping quite a bit.

The next oddity his is bilirubin level. We still need to get that under control because it jumped once again to a high level despite meds. We don’t want jaundice to set in.

The doc spent some good time with Deb again today. He comforted her by adding at the end of his report: he’s just acting like a 23-weeker. This helps put things into perspective for us. What we see as odd or dangerous, they anticipate as normal. I’m glad we have a good medical team. -R