Hello Cupcake...

Greetings.

Six weeks old! Yesterday was a celebration. Jonas and Elsa celebrated this milestone with yawns, stretches, and wide-eyed wonderment. Mari and I celebrated with cupcakes from a local shop in Tacoma.

Elsa continues to hold steady on her ventilator. The doctors want to have her build up confidence before any further weens and are holding her at 30 breathes per minute. This is a nice low rate...when she is at 20 bpm she is almost ready for a go at CPAP. Her feeds are going well and she is looking almost plump. She gave Mari a gift yesterday. Kangaroo Care part II! Mari was stoked and held her for over two hours.

Jonas is stable. He practiced on the CPAP for 24 hours before he was too tired and needed to return to his ventilator. This was a great first attempt as sometimes babies only last a few minutes or hours before needing to return. The doctors and nurses really wanted to console us at this step back on the ventilator but we were so proud of Jonas and how tough he is. Sometime this next week he will most likely give the CPAP another go. Jonas also restarted his feeds yesterday at noon. We are hopeful this goes well!

We continue our prayers of healing for Jonas and Elsa.

God Bless,

Dan & Mari & Elsa & Jonas

I'm forever blowing bubbles

Greetings!

Tears were flowing today when Jonas received his promotion to the "CPAP" ventilator. His blood gases have been great the past few days so we knew this might be a possibility. The doctor told us at 5pm that he was going to look one more time at his chart to see if he could find any reason not to give it a shot. After one final chart review, he determined that we would let Jonas try it out. We were cautioned that Jonas might need to go back to the Drager but it would be worth a try to see how he would respond. He responded. We will know in a few hours if he responded well enough but it was an amazing sight to see him with the tube out of his throat. Bubbles stream from his mouth as the CPAP gives a steady stream of air through the nose which causes bubbles to bubble out of his mouth while he breathes. Quite a fun sight! If I have clicked the right buttons you should find a video of this event below.

Jonas is still not receiving his feeds but that may change in the morning depending on his next couple of blood gases and other measurements. So far all his lab work has come back infection free.

Elsa also had a good solid day. She is getting her rate down on her Drager but is still a ways off from having her tube removed. Her feeds are going well and she is nearly the same size as Jonas. Her nurses have outfitted her with a 'retro' blanket and isolette bedding. Check out the picture for decoration tips.

Thank you for the continued prayers of healing for Jonas and Elsa. We are so thankful for each day with them and pray they continue to grow and heal.

God Bless,

Dan & Mari & Elsa & Jonas

Yes we can

Greetings!

Wow. Jonas and Elsa are tough little cookies. They continue to grow while putting up with all our pokes and prods, face tape changes, ventilator weens, and a host of other minor inconveniences.

Both very patriotic yesterday during the new presidential inauguration. Elsa was sporting a new Grandma Jeanne created red shirt. Jonas opted to show off his abs and went shirtless in a clear nod to the new president's recent vacation photos from Hawaii.

Jonas has been pretty stable the past two days. He was being monitored for infections and so far there has been no growth in his blood culture. As a result of this monitoring, he has been off of continuous feeds and is back on an IV. Last night he had his IV removed from his forehead (not a look I really enjoy seeing but we know that the forehead was a good place for it). After a brief debate, the nurse decided that it made sense to put a PICC line back in leg. The nurse placed a new PICC line in him last night and he was sleeping sounding an hour later. We are hopeful that he will begin his feeds again today. He has continued to handle his ventilator weens well and is now in the low 30's on his settings. This is good progress as once he shows he can handle the ventilator in the low 20's for a while he may be ready for the tube to be removed.

Elsa continues to make progress as well. Her ventilator is now in the high 30's and she continues to tolerate her weens. She is chomping away on her continuous feeds and is nearly the same weight as Jonas. She has been very stable with few other changes to report. She loves to sleep with her hands tucked up by her chin and she continues to charm her nurses.

We continue to pray for Jonas and Elsa to heal in their lungs.

God Bless,

Elsa & Jonas & Mari & Dan

The two pound club

Greetings!

The mailbox had a special present in it yesterday afternoon. One of the envelopes contained two pieces of paper. Each paper was entitled "Certificate of Live Birth". It may sound a little funny to be so excited about government paperwork that verifies what we already know. Yet it was a cause for a small celebration in our family.

Both babies had to do some backtracking the past day on their ventilator settings. In the big picture, they are still making progress but doing it in, well, baby steps. Elsa and Jonas both received blood transfusions over the past two days which has helped with their blood pressure, oxygen saturation, and pink coloring. Both babies are now official members of the two pound club. Elsa has been hovering back and forth at two pounds, but I think it is safe to declare her an official two pounder. Next stop--Three Pound Crew (TPC).

Elsa is continuing to do well with her feedings and did not appear as jittery today when given her sedation. The picture shows her in mid dance routine.

A few minutes ago, we heard from a doctor that Jonas may have indicators of an infection. We know to never underestimate these things but are hopeful that the antibiotics that he is now receiving will help him kick any bug he might have. The doctor said that Jonas was looking good but they want to be cautious and take action. Jonas will be taken off his continuous feed until the doctors feel he has kicked the infection or shown that there isn't one present.

We received a prayer shawl today and take great comfort in the prayer attached to the shawl, as well as, all the prayers for Jonas and Elsa. We ask for continued prayers of healing for Jonas and Elsa.

God Bless,

Jonas & Elsa & Dan & Mari

Another good day

Greetings, all.

Elsa and Jonas both had a stable Friday and Saturday. Both have begun a series of weens on their ventilators with some successes and a few stumbles. The ventilator that they are both on, the Drager--(kind of a cool sounding name for it), can provide a set number of breaths per minute. Both kids started out at sixty breaths per minute. They then began reducing the number of breaths by four every twelve hours if the kids' numbers were okay. Currently Jonas made it down to thirty per minute and Elsa is at fifty. Both have been going up and down on these numbers...it really can change rapidly but it feels like they have been trending down on the support they need.

Jonas has started to receive a little caffeine. It is a common measurement the nurses and doctors monitor and it was determined that he needed a little boost. The syringe has a starbucks logo on it (just kidding on that one). He continues to eat like a champ!

Elsa received a blood transfusion this morning. She had been looking a little pale on Friday and this really perked her color up. She was a little jittery today and the nurse thought it may be in response to the sedation medication she is receiving. She had been taking it before on an IV and now is receiving it orally which hits her system all at once. Overall, she seems to be stable and growing.

We are humbled by the number of people praying for our babies. It is amazing to hear from friends we haven't seen in a while that have heard about Jonas and Elsa and have been keeping us all in their prayers. Thank you and God Bless,
Dan & Mari & Jonas & Elsa

(Our camera ran out of batteries yesterday. I took it to school to show to a few students which turned into most students and now the batteries are recharging. Sorry no photos!)

Kangaroo Two

Greetings,

It was Elsa's turn today! We got to spend about an hour and a half just hanging out and snuggling. How wonderful. As I mentioned yesterday, she has been quite active during her care times recently. After the kangaroo care time she had a face tape change, which is usually not that much fun for the kids, but today she was totally calm and sleepy. It was nice to see her so relaxed.

Jonas continues to do very well with his ventilator settings. I was talking with one nurse who had been off for the past week and she was shocked at how much had changed in that amount of time. It really feels like a miracle that he is doing so much better. Having said that, I know that both of them still have a long ways to go. So we continue to be thankful for the steady days as we pray for healing, strength, and lungs that will be able to breathe on their own. And sorry to Jonas for no pictures today.

God bless,

Mari, Dan, Elsa & Jonas

Kangaroo Care

Greetings,

Another fabulous day. I was greeted with an amazing surprise when I came to the hospital this afternoon. Jonas's nurse asked me if I wanted to do some kangaroo care today. There were some tears of joy and then about an hour and a half of being able to hold our precious boy for the first time. Kangaroo care is the practice of holding a baby skin to skin with their parent. It is a great way to bond, and not only that, a baby's temperature is regulated, and they tend to have a decreased oxygen requirement, longer sleep periods, and burn fewer calories. It's just a great thing for everyone. Jonas's nurse was kind enough to be our photographer as well so that Dan could see our time together. Jonas is down in the 24% range on oxygen and is up to 6 ml of milk an hour.

Elsa had an outfit on for the first time today. The shirt looks more like a dress, but it was adorable. Her oxygen is a bit higher, in the 50% or so range, but her blood gases have been coming back favorable, so that is good and she is up to 5.5 ml of milk an hour. She is becoming a bit more of a wild woman during her care times--she has been moving her arms and legs like crazy. It makes changing diapers and avoiding all the wires a challenge, but one that we are up for.

We are thankful for stable days and time for them to continue to grow, rest, and heal.

God bless,

Mari, Dan, Elsa & Jonas