(Original appeared April 20, 2016)

Sorry for the delay in updates. Yesterday was very busy at the office, and Deb and I both (as well as our awesome administrative guru) were scrambling a bit. At the end of the day yesterday, I sat back and took a moment to absorb the fact that we are still very blessed with work, with the opportunity to help people, and that Deb and I had been blessed for the first week or so with things being handled for us that we could focus on Jacob.
Jacob had to receive a platelet transfusion last night. Platelets are a type of cell in the blood (like red and white blood cells) that are made in the bone marrow. They help form clots by piling together if bleeding occurs. His count was low, and we hope that this transfusion helps him. It is just another reminder that his body isn’t ready to do big-boy stuff, like make the ingredients for blood. He was also struggling more with his oxygen levels. At times, he would be fine. The next moment, his levels would drop and stay low for a while. Typically this would happen if he had a glob of mucus stuck in his air way. But last night he had no such globs. So we’re not sure what was going on. His breathing is still pretty erratic, which I suppose is to be expected at his age. His lungs are still very immature. Deb and I each took turns spending some alone time with him last night. He just seemed so uncomfortable, particularly with the tubes down his throat. Just as he would drift off to sleep, he’d startle and twitch and grimace. You could see that he was trying to cry, but no sound could come out since his vocal cords aren’t quite formed and his throat isn’t big enough yet. More than one time I wanted to reach in and yank that stupid tube out just to give him some rest. But for now, he will just need to suffer with it. The nurses do such a good job trying to keep him comfortable, and we are grateful to them for their loving care. We enjoy watching them interact with him in such a sweet way, as if they’ve already developed a bond with him (and us!).
This afternoon, the doctors and staff make rounds together, and we really hope to receive a lot of information. They use this opportunity to speak to the parents as a group, so we get a report from everyone together as a team. We’re looking forward to that.

This morning I had a close friend send me his morning prayer. He’s been through a lot himself, and so it meant that much more. Thank you to all of you for reminding us that you are really out there being our “prayer warriors”. The words “thank you” just don’t quite cut it, but know that we cherish your prayers and encouragement!

(Original appeared April 19, 2016)

Some have asked whether a donation/tribute to CaringBridge will work its way into our hands. The answer is “no”; those donations stay with CaringBridge to help with their expenses of running their site. However, I have discovered that this site is very useful, and I’m very glad to have it as a tool in order to reach all of you. I would encourage you to donate if you so choose.
And we certainly are very humbled, not just by the offers of generosity shown to us, but perhaps even more by your encouraging words and “Likes” each and every day!

(Originally appeared April 19, 2016)

Things apparently calmed down from this morning. He’s doing pretty well. I forgot to mention in my last post that his third and final Bili light is gone! The lights, used as phototherapy to help break down the bilirubin in his blood, we necessary but they blocked our view of him in his isolate chamber. They also gave the appearance of a whopper being warmed under a heat lamp – just not something you want to associate your little guy with. Here’s a recent photo of Jacob. He squirms and flails when he gets uncomfortable, and seems to calm right down once his hands find his face, a tube to grab, or whatever. In this photo, he’s found his own arms, and calmly posed for this shot with arms crossed.

(Original appeared April 19, 2016)

This morning was a “one step back” type of morning. Jacob struggled with breathing, and the medical staff are trying to figure out how best to regulate the new ventilator to meet his need while also fostering his own efforts. For a few moments, his heart rate dropped quite low, and his oxygen levels did too. He’s restless and seems to be fighting the whole set up. We will be speaking more in depth with the staff about the situation, and perhaps come up with a different plan. For now, we think the doctor has things dialed in. We need to be cautious not to jump to something different too soon so as to let things work out a bit, but we also need to act as soon as possible when something isn’t right. Ugh.
Also, his kidneys now seem to be struggling. We are watching that closely. They are immature, and not developed enough to handle life outside the womb yet. It’s difficult to remember that he’s processing so much that we all take for granted (nutrition, air, hydration, medicines, etc) when he’s just not built for that yet. Double-ugh.
We are also facing the time when his remaining umbilical line must be removed. Those lines are not intended to stay in for long, and we’re pushing the time as it is. When that is pulled, he will get a PIC line (a catheter inserted into his arm or leg) which will be the main delivery line for him. There are pros and cons to that, but one of the major pros is that a PIC line is required before we can move and hold him. There’s no time frame on that just yet, especially given the unknown with the current status of his brain bleed. We’ll see how it goes, but we cannot wait for that day.
We rejoice he is at day 10. Each day brings new hope that things will end up okay.

(Original appeared April 18, 2016)

Tonight when I visited Jacob, he was finishing his afternoon snack and sleeping so soundly. Finally, after another busy day of testing, heel picks for blood, heart ultrasound, bath, oxygen adjustments, and bed changing, I think the little guy was just plain tuckered out. I watched him sleep for what must have been 5 minutes. Staring as all parents do at their little ones when they are sacked out, wondering what their dreams could be. No dings. No buzzes. No alarms. For once, just quiet. I left comforted, feeling that all will be well no matter what. Tomorrow will bring a new day. And I think Deb are finally ready to say… Bring it on.

(Original appeared April 18, 2016)

Deb got to hold Jacob today! We were both in his room as his nurse was planning to change this bedding. She asked Deb to help, and so the both of them, one on each side of his isolate chamber, and all four of their hands reaching in through the portholes, began the process. The nurse first asked Deb to switch out the blanket underneath him while the nurse held Jacob. As the nurse began to lift him, the nurse then said one of the most profound things: “Why don’t you hold him?” At that moment, without flinching, and in full mom-mode, Deb calmly cradled Jacob in her hands as the nurse switched out the blanket underneath him. For 60 seconds, I doubt Deb and I even took a breath. Then Deb laid him gently down and together she and the nurse worked to tuck him back up and arrange his lines.
Deb turned to me with the biggest smile and then she asked if I took photos of the event. I immediately realized that I had been so engrossed in the moment that I forgot to snap a few pics. The feeling was worse than going on a fishing trip, and after traveling miles into a lake, realizing that you forgot the bait.
I’m sure we’ll have more chances to do this as he continues to grow and I’ll be sure to take some photos next time. But you should all know that Deb and I giggled inside a bit over the fact that our “audience” on CaringBridge will be so disappointed that there’s no photographic evidence of this beautiful moment. I promise to try hard next time =)
Also, while Deb was rearranging him, the nurse changed out his stocking cap. We were able to see his bald head, and his blond eyebrows. What a moment.

(Original appeared April 18, 2016)

Deb and I had wonderful morning already. Sharing a nice breakfast together with Addison and seeing her off to school, coupled with a visit to the hospital to see Jacob may not seem like the kind of facts that set up a description of a wonderful morning. But we’ve grown to appreciate the small things. Spending time with Addison over the last week has been a high, if second, priority of ours. And so even breakfast allows us time together. And although we travel to a hospital to visit our second child, we cherish the opportunity that we have yet one more day with him!
Over the weekend, Jacob began to blow bubbles. This is an indication that he’s making saliva which apparently is a positive response to the feeding as well as the sensation of having the tube in his mouth/throat (similar to chewing gum). He’s not happy about it, and the nurses suction it out from time to time, but it’s the little things that perk us up like this.
The doctor also put him back on caffeine to help his breathing (see my earlier post on that). We removed the caffeine when his heart rate was so high. Now that it’s dropped to a more normal level, we feel better about reintroducing the caffeine. This is especially so since his rate of breathing hasn’t been the best; he’s relying more and more on the ventilator to help him rather than taking breaths himself. His morning cup of “coffee” should help trigger the brain to send the right signals and we hope to see progress with breathing soon.
Deb has now changed at least 3 of his diapers which is a bit of a challenge in an isolate chamber. He got a “bath” also, which helped clean off some of the flaky dead skin that was making him look a little scraggly.
The rests of his blood tests continue to yield both positive and iffy results. His kidneys are still very immature and are just not ready to act. But they are at least making urine which is a good sign. Again, you can tell that we’re just happy for these small victories (ie Yeah, he peed!)
As I write this, they’ve finished his heart ultrasound to see if the “hole” in his heart has healed up. We should get the results later this afternoon. Stay tuned on that. The other night, I (Rob) was alone with him and as I left, I said “good night”. He moved his hand around a bit and seemingly gave me a thumbs up. It was perfect. Then, this weekend, he kept raising his hand a bit and stretching his finger (see photo). He seemed to point to the sky. We figure he’s reminding us of the verse: “I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth.” (Ps 121:1-2)

(Original appeared April 17, 2016)

Number of visits to our Jacob’s journal now: 527. Wow. I am reminded of our wedding day (May 27) almost 21 years ago. How young and immature we were back then! Although we wanted to start a family soon, God had other plans. He waited for just the right time to bring Addison into this world almost 10 years ago. And then he waited another 10 years, when we were apparently just able to handle the job, to bring us Jacob. Both are such gifts to us, you see. We do not take them for granted as we might have been tempted to do had our parenting journey come easier. We are so thankful to our own parents for being shining examples for us. Certainly without them, we would not have been prepared as a couple – as a team – for what lies ahead.

(Original appeared April 17, 2016)

Today is a good day. The Jakester made it through the night just fine. He is now a week old and we are very grateful for that! Up to now he has had lines running into his umbilical cord, one feeding things to him from the outside (vein), and one drawing things from the inside (artery). The arterial line cracked and they had to remove it. This means that they can’t read his blood pressure or draw blood tests as easily. Now They do pressures by old fashioned cuff and draw blood with heel sticks. Sad but he’s a trooper and will just have to suffer with it. Overall, his numbers look good. Kidney function was a bit of a worry but those numbers improve and he continues to wet his diaper like a champ. So that’s good. He still struggles a bit with the new ventilator called NAVA (see my earlier post) and needs help breathing often. But that’s expected at his age.
I do want to add that Deb and I attended church service this morning and received such a boost. It’s like adding kindling to a campfire – the flames are stoked and the fire burns hotter to last longer. We are so thankful to our family and our friends through all of this. Gifts, hugs, words… you name it. You have all inspired us to keep going. We read each and every comment posted and notice the “likes” on these journal entries, and even though we don’t necessarily respond, please know that they lift us up.
So I’ll end this entry by telling you that I’m staring at him at this moment, with his foot kicked up, tiny toes stretching, and am so thankful. -R

(Original appeared April 17, 2016)

As I watch the absolutely beautiful sunrise this Sunday morning so soon after Easter, my thoughts instantly roam to what the scene must have been like for the ladies who discovered the empty tomb on that first Easter morning. I’m glad that He cared that much for us, that He’s holding us right now through all of this.
So far, things have been well for J-dub. We hope to have a full update later this morning. But he tolerated his blood transfusion well. He even “pinked up” a bit with the nice new dose of fresh blood. Deb and I plan to speak to the nurses and “press” them gently to allow us more opportunities for touch. Laying our hands gently on his legs, or allowing him to grab our fingers is a two-way benefit we believe. We’ll try to post some pictures of those experiences for you. Deb is doing well. She’s been sleeping at home every night, and typically heads into the hospital for morning assessment between 6-7am. That’s the time when so much information is available. It really sets up her day, knowing what’s been going on. The hospital staff is wonderful, and they share everythingabout Jacob.
That’s all for now. We hope you all have a great day today! -R