(Original appeared May 15, 2016)

Deb is on her third stint of holding Jacob today. We weren’t sure if it would be possible today since he’s had a bit of a rough time with his IV sites. They had to pull the IV from his right hand and place it in his scalp of all places. Despite our fears, the doctor and nurses reassured us that the benefits of close contact far outweigh the risks. Deb jumped at the chance! Add to that the fact that big sis got to visit today =)

He will get a repeat brain scan Monday. We are hopeful that progress is being made there. His lungs seem to be doing well, as they continue to wean him down on oxygen. There have been early discussions about switching vent settings to promote his own breathing. He also has had decent urine output so hopefully his swollen little body will begin to return to normal. Baby steps.

We are still waiting on the blood culture report to see if we can get the PIC line in. If it is negative (No infection) then we are a “go” for the PIC.

I’ll try to give a more detailed report later, when I get home and am not typing on my phone’s small keyboard with fat thumbs. Love to all.

(Original appeared May 13, 2016)

I wanted to add the following Bible passage to that last entry but could not think of it. After some searching, I rediscovered it. This passage means so much to us especially when times get rough. Those rough times seems to expose us to the temptation to get down on ourselves, to become angry with our circumstances, or to lash out toward our loved ones. But we take heart that if we focus on our blessings – on the good stuff – life is much easier to bear and our relationship with the creator of the universe and the author of our salvation becomes far more sound and gratifying.

“Rejoice in the Lord always; again I will say, rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. What you have learned and received and heard and seen in me—practice these things, and the God of peace will be with you.” Philippians 4:4‭-‬9

(Original appeared May 13, 2016)

I’ll try to catch you up with the latest but honestly it was a whirlwind today.
Deb was able to hold Jacob for about 4 hours today. I was proud of her that her bladder didn’t explode. Jacob did very well over all. Having him out of the isolette is a tad bit risky but the staff was nice and really helped out. There were a few times he struggled a bit with oxygen, primarily because he had quite a bit of fluid in his throat that had clogged things up. There were a few scary moments when some levels dropped (scary to us, but again the staff stays so calm with this stuff!) but he bounced right back.
For the moment, his most recent blood cultures have been negative. We hope it stays that way so they can try the PIC line maybe on Monday. His O2 levels have been outstanding – he is weaned down on the vent and has been breathing on his own for the most part which is great.
He is still really swollen though. We hope that his recent urine output (which has been decent and fairly steady) will help with that. His output has been okay enough that they were able to give him a new dose of antibiotics which should again help with the infection.
We hope to do kangaroo care again in the next day or possibly a few times this week again if J remains stable. Overall, we really think the contact today did wonders for both him and mama. It sure lifted my spirits!
We are so thankful for all of the support each of you give to us, in person, by card, or by messages and comments. You have helped us traverse this process of Two steps forward, One step back. Today certainly fits in the “Two steps forward” category. We fell very blessed by all of you, with your prayers, and your kindness. Thank you! -R

(Original appeared May 13, 2016)

Finally! Deb is holding Jacob close today, doing what is called “kangaroo care”. This skin to skin contact promotes bonding and growth. Both of them are loving it!

(Original appeared May 12, 2016)

Having been on this journey for over a month, we have learned to temper our excitement and anticipation that something wonderful might happen. This morning, we had hoped for Deb to be able to hold Jacob close, maybe even skin-to-skin, while they changed out his isolette. We knew that strange things happen, medical results can alter any “plan”, and yet we still looked forward to this day. As Deb arrived at his hospital room for the big event, we learned that Jacob was in need of a blood transfusion. That procedure basically puts a halt to everything else. The staff must perform regular assessments at tight intervals, and we really can’t touch him during that time, which can take more than an hour. In short, the fact he needs to get the transfusion pushes back the mommy-holding experience; at best until this afternoon, but more likely until tomorrow.
His blood pressure has dropped a bit today and so they are increasing a medicine to help with that. This is the same medicine that is preventing us from feeding him. We’d like to get him weaned off of that soon to restart the feedings which haven’t been available for over two weeks, but we must be patient for now.
We’ve been waiting for the results of his blood culture to see if the infection is still there before inserting the PIC line. That line is crucial for the long term, and will be used to give him meds, etc. Right now, we’re on borrowed time using IV ports in his hands. Today we learned that the latest culture was positive for infection. So long as the blood cultures are positive, it’s not a good idea to insert the PIC line which would just give the germs one more place to attach and grow. The doctor will try to take another blood culture today when he begins the blood transfusion, and we’ll know more in another 48 hours. We’re hopeful that, with the umbilical line removed and that possible source of infection being gone, the culture results will come back negative this next time.
There’s also a sense that one thing needs to be well before we can move on to the next step to get that other thing well. For instance, I mentioned the blood pressure medicine and its relationship to feeding him with mom’s milk. But also his body isn’t processing bodily fluids well, and so the antibiotic that he’s receiving for the infection is lingering in his system. He can’t get another dose until that content drops and it will only drop if his body processes it out. We can’t really attack the infection without the antibiotic doses. So long as the body won’t process fluids (including the antibiotic), we can give him more antibiotic. Without the antibiotic doses, the infection may remain. So long as the infection exists, we can’t get the PIC line in. Without the PIC line, there’s continued anxiety over the use of temporary IV blocs in his hands.
This is all part of the “two steps forward, one step back” routine. We’re very glad that the nurses warned us about this up front – it makes things easier to tolerate during times like this. We remain hopeful, always, because of the great hope that is in Him and His overall plan for us and for Jacob.
One certainly very good bit of news today: his respiratory system seems to be doing much better. They’ve been able to wean his oxygen level down to the lowest point I’ve seen him at in a long time. So we’ll hang our hat on that for now! -R

(Original appeared May 11, 2016)

Remember that 80’s song from Simply Red? I found myself singing primarily the refrain of the song for the 45 minutes while I held Jacob’s tiny hand this morning. (More like he was holding my finger tip.) He woke up for a bit as if to say ‘good morning mama’ and then slowly drifted back to sleep. With his air leak it sounded like he was snoring. What a way to spend the morning!
Last night the line in his belly had to come out. It is strongly believed that the infection is stemming from that line. We pray the blood culture will come back negative in order to get his PIC line in. (Culture results won’t be read until late tomorrow or so.)
For now I’ll need to find a pee-pee dance song to play for him tho. He is back to minimal output again. While holding his hand this morming I tried to describe for him various waterfalls, rivers, of course the lake… he probably thought I sounded like a babbling brook.
All in all he stayed stable last night. He now weighs 2lb 2oz. (That is up 120 grams). His bedding was changed out last night & replaced with Cubs bedding. Go Cubs!
I look forward to another opportunity to hold him tomorrow while they change out his isolette.
For now I’ll keep holding on to these awesome memories and positive moments to come!
Blessings on your day everyone! -D

(Original appeared May 10, 2016)

I want to put in another mention about the wonderful care we (Jacob and well as the rest of the family) are receiving. This last month has been a time like we’ve never seen, with challenges like nothing we’ve ever faced. The insecurity, the unknown, the worry, the heartbreak followed by joyful small victories are routine. And each step of the way, we’ve had nursing staff holding our hands (sometimes literally!). They have encouraged us to be advocates for Jacob, and have involved us directly in his care. Even the doctors are willing to take the time to explain the latest findings, and their ideas about how to proceed. If we have a question, they answer it. It is just a different world in the NICU.
We’ve developed quite the bond with the staff. I suppose some of that is to be expected when you spend 30+ days straight with a group of people. We just wish there was more we could do to thank them for their kindness, and for the little touches they do to make all of this more… acceptable.
So, although Nurse Appreciation Day has come and gone, please take the time to say “thank you” to the next nurse you run into. They handle so much more than we could even imagine, and yet they do it with compassion and care.

(Original appeared May 10, 2016)

We’ve updated the main photo for the journal to a picture taken just this morning. Deb and the nurse had just got Jacob tucked in for a nap, and he opened his eyes and gazed into Deb’s. He also began to suck on his fingers – a first for him. You might also notice the little bit of peach fuzz that has begun to grown on his head.
I am still amazed at this wonderful opportunity for us to watch him grow and develop during a time when he would have still been in the womb.

(Original appeared May 9, 2016)

You may be familiar with the scripture passage which reminds us that there is a time or season for everything. If you grew up in the 60’s you’ll remember this was immortalized in a popular song. That passage is found in Ecc 3:1-8. It speaks to Deb and I particularly, reminding us that there are and will be contrasting times in our lives. Some we will enjoy and others we will suffer.
Deb made a wonderful analogy regarding the trying times we are facing: changing seasons. If you live in the Arctic or near the Equator, just go with us on this for a moment. Here in Indiana, we enjoy (or suffer, depending on your perspective) all four seasons. Sometimes we even get to enjoy them all in one day. A gentleman who joined us for a round of golf in Scotland joked about Scottish weather that Scots might enjoy all four seasons in the process of a golf swing!
Seasons come and go whether we like it or not. We have no say in the matter. We can get frustrated or joyful, impatient or content; and then things switch on us. In essence, we are along for the ride. Although we have no control over the seasons, they are still meant for our benefit. Our desire for the short term is trumped by the larger story God has in place for the long term.
We might struggle watching Jacob crash, or when we learn more rotten news. Then the season changes and we discover good news, or that something is beginning to resolve. The fact that we have had to give up control has been one of the most difficult lessons learned these last 4 weeks. And yet, we are still here. Each of the good and bad times must be enjoyed or endured and we trust, now more than ever, in His unfailing love for us. This trust has become easier as the changing seasons have become more frequent. Interesting how that works. -R

(Original appeared May 9, 2016)

Jacob gained a bit of weight over the weekend (only 10 grams) and has grown to a length of 12.75 inches. He’s still a little squirt by any measure =)
He’s already has his head ultrasound early this morning and we’re anxious to see the results of that. His doctor may try the PIC line today or at least early this week again. We are very hopeful that will work this time so that he can continue to have a line available for meds, etc, while they remove the umbilical line.
They were able to wean him quite a bit on the ventilator last night. He had been running around 68% oxygen, and this morning he was at 48%, which means that it’s taking less oxygen to pump into his lungs from the ventilator in order for him to still stay oxygenated. This is good progress. However, bad news seems to always follow the good news. His kidney output has dropped again to very low levels. I can’t even describe his fluid retention at the moment. Our hearts ache to see him so swollen. Unfortunately, there just is not much more that can be done to alleviate that. We need to be patient and hope that his entire urine and fluid control processes kick in on their own. And soon. We now wait for his heart echo to help us determine how bad/good his PDA is.
We were able to spend quite a bit of time with him yesterday. Deb spent lots of mommy time with him appropriately on Mother’s Day. I went up in the evening and was able to touch him a bit more, and help the nurse change him and his bedding around. Once he settled back down, he relaxed and opened his eyes with that dreamy, inquisitive gaze that newborns tend to have. So peaceful and gentle. Let’s just say that we had a moment.
Please continue to pray for positive progress. Thanks! -R