Perhaps a new Hallmark greeting card...

Greetings.

We are on the eve of seven weeks for Elsa and Jonas and we couldn't be more proud of our two babies. They continue to amaze us with their strength and will to grow bigger each day. Each day is another victory...another twenty four hours for their lungs to grow! Speaking of celebration...a student from our school gave us the most wonderful card to celebrate their birth! Very cool--we are so thankful for the kind words and supportive high-fives/fist bumps from so many of our amazing students at our school.

Elsa. My my my. So how does it feel to be three pounds? You would have to ask Elsa. Today she weighed 1380 grams. Three pounds and one ounce. She yawned at the news. Elsa is now at 8.5 ml of food an hour and is holding steady. Her ventilator is still about the same.

Jonas. Holding steady in second place in weight, Jonas weighed an impressive two pounds, fourteen ounces. He is also doing well with his feeds and his ventilator is still pretty low.

We continue to pray for health and healing for Jonas and Elsa.

(Pictures--red hat is Jonas & Dan; yellow outfit is Elsa & Mari)

God Bless,

Dan & Mari & Elsa & Jonas

Kangaroo Two for Jonas

Greetings!

I snuck into the NICU a little early this afternoon to find a beaming Mari holding Jonas next to his bed. Mari was able to kangaroo care with Jonas for almost three hours today. Quite a neat treat for both!

Jonas had another stable day and is now at full feeds. This means he receives 7ml of milk every hour. His belly looked a bit full as a result! The milk has an additive to it to increase its calorie count. Jonas did not seem to mind. He is also holding steady on his ventilator with no changes.

Elsa was a stable little lady today as well. Her blood gases were good and if she keeps holding strong she may be weened a little bit at midnight. She is also on full feeds and is doing well with them.

It is nice to have a slow day at the office--not a ton of changes and we have no complaints. Hold steady Jonas and Elsa!

We continue to pray for their lungs to heal and for their bodies to grow.

The pictures are of Jonas and Kangaroo Care, Elsa with a quick face tape change today, and our favorite sign at the hospital (Don't all doors open suddenly and without warning?).

God Bless,

Dan & Mari & Elsa & Jonas

Three millimeters and a momentary lapse of calm

Greetings!

We have enjoyed a couple of days of holding steady with Elsa and Jonas. There was one slight hiccup in this smooth sailing on Saturday night. Jonas was his normal active self at his evening care time. One minute everything was fine and then his stats plummeted downward. The nurses had been joking around in the room just seconds earlier talking about a recent nurse get-together. Then with Jonas's monitors beeping, the nurses circled him. They were calm, cool, and collected. Two seconds earlier, one might not realize the collective expertise that was in the room. They quickly determined that Jonas's breathing tube had moved out of his lungs. Out with the old tube and within fifteen minutes they had a new ventilator tube in three millimeters lower in his lungs. He was asleep five minutes later. Mari and I laughed, a laugh that I think only comes after experiencing the highs and lows of such an experience, at our mutual thought, "Crazy stuff goes down in the NICU."

After Jonas's little tube incident, he has been rock solid on his ventilator. He is at a setting of 20 breaths per minute on his vent and is usually in room air. He is now up to 4ml an hour of milk and handling it well. Keep up the good work Jonas!

Elsa is been fluctuating a bit on her ventilator settings. She is at 40 breaths per minute on her vent and has been doing well at that current setting. Previously, she has struggled a bit as the vent is weened in to the 30's or 20's. She continues to handle her 7ml of milk well. She surpassed Jonas in weight over the weekend. She looks so big!

We received a packet of letters from a first grade classroom that has been keeping up with Jonas and Elsa. Wow! Such a treat. The students wrote to us about three things that we should teach the babies. Every letter was amazing. Many students suggested that we teach the kids to read and write. Some suggested teaching them to hug, play, and drive a truck. One student wrote that we should teach them to sing. What a wonderful idea! Singing is such a great thing--it is fun to do and a gift to all those around you. The students included some artwork that appears in some of the photos. Thank you Mrs. Monson and your students!

We continue to pray for healing for Jonas and Elsa. We also pray for God to guide the hands and hearts of our doctors and nurses.

God Bless,

Dan & Mari & Elsa & Jonas

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

Greetings, all.

We are becoming increasingly familiar with the routine of the NICU. In some ways the overwhelming sight of the rows of monitors, incubators, and other machinery has faded over the past several weeks. The nurses joked with us that we no longer had the "deer in headlights" look as we entered the room. What was once shocking--seeing our babies being 'bagged' to help them breathe--has become almost normal. As new babies enter our section, we can see that initial shocked look that the dad has as he first visits the unit. Usually, a day or two later, the mom is wheeled into the unit and has that first reunion with her baby. These initial reunions are amazing, they are a frequent reminder of these small, but growing, miracles we have received.

Over the past two days Jonas has been very stable with his ventilator. He has been on the Drager ventilator, he was moved down from the high frequency a couple of days ago, and has been in gradually decreasing amounts of oxygen. Several days ago he was needing over 60% oxygen. The last two days he has been in the low 30% to high 20%. He continues to do well with his feeding. He is now up to 5.5 ml an hour. In late breaking news...he is now receiving all of his nutrition via milk. This means his PICC line was no longer needed and at 4pm it was removed. The key benefit of the PICC line being removed is that it can be a gateway for infection. With it gone, the nurses do have to prick his foot from time to time for blood, but it is a worthy trade-off.

Elsa continues to be a stable little girl. Her oxygen needs have crept up a bit over the past several days but the doctors and nurses are happy with her progress. Yesterday she received a slightly larger tube for her ventilator. The positive of this switch is that it greatly enhanced the efficiency of the machine. The potential drawback is that it might cause more irritation in her throat. She is also receiving all of her nutrition via milk and is currently at 5.0 ml per hour. Jonas passed her up yesterday, but we are encouraging her to catch up when she is ready.

We thank everyone for their prayers of healing for Elsa and Jonas. In the days ahead, we ask for prayers of healing for Jonas and Elsa's lungs. We also pray for Elsa's brain bleed to continue to heal.

(The pictures: Elsa checking us out; a perspective shot of Elsa's bed with the various bells and whistles (literally); Big Poppa with Elsa's footprints)

*Jonas was not purposely left out of the photo session. His agent indicated the lighting wasn't right so he will be back in our next update.

God Bless,

Dan & Mari & Elsa & Jonas

Clothes!

Greetings!

There is not much to report (which is good news). Both babies go up and down a bit on how much support they need on there ventilators, but they are pretty stable. Elsa is up to 5 ml of milk an hour, which is the max for her weight, so that is very exciting. Jonas is right behind at 4.5 ml per hour. We are thankful for every day with them and continue to pray that their lungs will heal and they will be able to work toward breathing on their own.

The biggest news of the day is that Jonas got to wear some clothes! Grandma Jeanne bought them each a shirt and a hat. As I was washing the clothes I was laughing at how small they are, but of course they are still a little big. Elsa did not get a chance to wear hers today because she was needing more oxygen during her handling and it seemed best to let her rest instead of bothering her more.

Thank you for continuing to think of us and pray for us.

God bless,

Mari, Dan, Elsa & Jonas

Four Weeks Old!

Greetings!

What an amazing day! For days there has been talk of changing out Elsa's isolette (this happens periodically, just to keep them clean) which would mean that she would need to be held for a small amount of time. Today it happened and I was able to hold her for the first time. Her eyes were wide open and looking at me the whole time. As my mom says, she just melts your heart. It took a team of three to make this happen, including a respiratory therapist who was "bagging" her the whole time while she was not hooked up to her ventilator. It was an amazing, special moment for me and I was so thankful to those who made it happen. Elsa continues to stay stable on her vent. Her PICC line clotted last night and they had to take it out, but the good news is that they are thinking she will not need it anymore. She is up to 4 ml of milk an hour, which means she does not need any additional fluids or nutrition. Again, amazing.

Jonas also had an incredible day. He was down at 29% oxygen when I came this morning and stayed in the 30% range for most of the day, AND he is back on the Drager ventilator, coming off the paralytic drug and doing very well. It was fun to see him moving around and getting rid of that extra water weight. His blood gases continue to come back with positive results. If he continues progressing well, the doctor said he may be able to be extubated soon and graduate up to using a mask for oxygen support. The steroids seem to be giving him a great boost. We are so thankful! Jonas also had a face tape change today. It was nice to see his whole face again for a moment.

Sadly, we learned today that our friend Aiden, who was also born at 24 weeks, passed away last night. Our hearts are breaking. Please pray for his mom, dad, and brother. It reminds us how precious life is.

God Bless,
Mari, Dan, Elsa & Jonas

Finding Patience

Greetings, everyone.

In just a couple of hours, Elsa and Jonas will be four weeks old! We are starting to notice how much they have both grown and changed. Their pictures from just a couple weeks ago look so much different than they are now. Elsa has tufts of dark hair growing and Jonas has long blond eyelashes! Elsa is getting stronger. She has pulled her ventilator tube out a couple of times over the past few days. This keeps the nurses running, but they are really impressed with her strength! Both kids are 'tolerating' their feeds and are getting 3 ml an hour. Elsa is doing so well on her nutrition that she no longer receives additional fats. Milk does a body good!

On Wednesday night, Elsa did decide to give us all a little scare. She had two seizures during the night. When we called in the morning this news was rather scary and startling to hear. The doctor met with us later in the afternoon to get us up to speed on her night and the news of the day. Elsa had another brain scan done because of the seizures to see if there was some connection. Apparently there are many reasons for seizures in premmies and this was done to start ruling out causes. The doctor indicated that the brain scan suggested that there was some healing occuring by the blood clotting and beginning to disappate. The seizures may have been some misfiring in the brain while it heals. There are no certainties but we were stunned by potentially good news! I think we both felt very nervous in the long walk from the car to the NICU that morning and were expecting to hear the worst. While we were with her yesterday and today, Elsa was stable and allert, looking at us with her big eyes.

Jonas began his steriods treatment for his lungs on Wednesday. Since then he has gone back and forth on how much sedation and oxygen he has needed. He was up to 96% oxygen for much of the day Wednesday, but today was in the 25-35% range. He has actually been moved down a little bit on his vent support which is good but it is still too soon to know if the steriods will be the ticket. While sedated he tends to retain a little bit of water. This impacts his weight but even if we add a bit for the water, he is looking chunky! He is right around two pounds and growing.

In some ways the past four weeks have flown by. It is amazing to see all the changes. We know we still have many months ahead of us in the NICU. We are finding ways to be patient for the future as we continue to pray for strength and health in each coming day.

God Bless,
Dan & Mari & Jonas & Elsa

Keep on growing and growing and growing...

Greetings, all.
It is always amazing to enter the NICU and be surrounded by information about Elsa and Jonas. I can tell you their blood sugar and the subsequent medicine they would receive if it is outside of a specific range. I can watch on the monitors how many breathes each receives from the ventilator and what level of support the ventilator is providing. Hanging by their bedsides are several IVs and syringes filled with very specific amounts of vitamins, medicine, fats, milk, electrolytes, and more! Every four hours, or more when necessary, Elsa and Jonas have their blood gases measured. There is so much information that it is so easy to get distracted by the machines and the activity. When we see both of the babies looking around we hope that all the fuss outside will become a long forgotten memory. We do hope, and I think we really do believe, that they will remember the soft words, gentle caresses, and whispered prayers that we send through the isolette doors.

Elsa continues to have good days. She had a little bit of a hiccup yesterday and was moved back to the Drager ventilator. She has been fairly stable and continues to move down on the ventilator settings. Today, Elsa weighed in at 1 pound 9 ounces! The nurses have continued to monitor her heart for a slightly open artery that normally closes on its own with full term babies. Some times it sounds like it might be open and other times it is not noticeable. This is fairly common with premmies and they will continue to monitor.

Jonas has been stable the past two days. Today at 6:00pm, Jonas started to receive a small dose of steroids to help his lungs. This has been in the plans for several days and the doctors decided that now was the time to act. He is weighing in at two pounds now and based on his current stable responses with the ventilator it was the right time to try to help his lungs. We will know in the next couple of days if the steroids give him the extra strength his lungs need. He has been enjoying the 2 ml, yet more information that we see everyday:), of milk every hour and he is definitely getting bigger.

We continue to pray for Jonas and Elsa and our new friend Aiden for strength and healing. Aiden is a 24 weeker resting up between Elsa and Jonas's beds. The three of them enjoy keeping the nurses and doctors hopping! We pray they continue to feel our love and hope.

God Bless,
Dan & Mari & Jonas & Elsa

Steady On

Greetings!

We are happy to say that there have been another couple of steady days for our babies. Jonas was doing well on his ventilator settings until the late afternoon on Saturday when he was needing more and more oxygen to meet his needs (he was up into the 70% range). The doctor decided to put him back on the heavy sedation to help him rest again and not fight against the ventilator. Since then he has also received a blood transfusion. When we went in today, Jonas was on 30% oxygen and doing really well. Some of his test results suggest that he might have an infection, so he was started on some anti-biotics while they wait to see if his blood cultures grow anything. He was also was able to continue his feedings of milk and is doing well with them and is weighing in at 1 lb 10 oz! In the picture above while the nurse was repositioning him after his care time, Jonas thought resting his head in his mommy's hand was a really comfortable position to be in.

Elsa is continuing to be steady and stable. She is also in the 25-35% range for oxygen, which is good. Her continuous feeds are going well. She had a blood transfusion the other day as well, and it seemed to give her a boost and allow her to stay more stable on her oxygen needs throughout the day. She is weighing in at 1 lb. 7 oz. We are enjoying seeing her eyes open once in a while. We are just so thankful for a couple days in a row that the babies are able to rest and grow and have some forward progress.

We continue to feel blessed by your prayers and interest in how things are going.

God bless,

Mari, Dan, Elsa, and Jonas

Three weeks!

Greetings, All.
Elsa and Jonas are three weeks old!

Elsa has had two really good days. She has continued to be very stable on her ventilator and "tolerated" her feeds. She opened her eyes a day or two ago and she looks so much better from her first couple of days. Her PICC line went in earlier this week and she no longer has an IV in her head. She is now on a continuous feed line which gives her a small amount of milk throughout the day.

Jonas has also done well the past two days. We were really worried two days ago when he was fighting the ventilator. The doctors ended up heavily sedating him so that he could rest and receive the full benefit of the ventilators for a couple of days. It was a little hard seeing him really knocked out but we knew it was to help him heal. He did really well while sedated and was brought out of his sedation early this morning. He continued to show progression and has been weaned several times on his ventilator today with success. The doctors will continue to closely monitor his blood gases and may still decide that a small dosage treatment of steroids might be beneficial although they are giving him some more time to grow out of his lung troubles first.

In the NICU it is really hard to be physically 'close' to Elsa and Jonas. The nurses encourage us to participate in the daily care of our two babies as a way to keep us close with them. This means we get to take their temperature, change their diapers, and give them a mouthwash for their ventilator tubes. The first couple of times our hands were a little shaky and unsure but we have really grown to love this time with our kids.

We continue to pray for the healing and growing of Elsa and Jonas.

God Bless,
Dan & Mari & Jonas & Elsa