New Year's Eve

Greetings, All.
Another couple days of ups and downs. Elsa and Jonas continue to struggle with their lungs. The doctors are trying to grow both of them out of their current struggles but there have been some rough times in the past 48 hours. It feels like a kick to the stomach every time we hear some bad news but we are blessed to have highly skilled doctors and nurses with plans and potential remedies.

Elsa has been fairly stable with her ventilator settings and continues to gain weight. Her eyes opened yesterday and she continues to rest comfortably in her isolete.

Jonas had a rough day yesterday. He was placed back on the high frequency ventilator and also heavily sedated to prevent him from fighting with the machine. He has since stablized and we are now in the waiting game to determine whether he can grow out of his breathing problems or if a small dose of steriods may be administered to aide his lung development.

We continue to pray for both our babies to grow and heal.

God Bless,
Dan & Mari & Elsa & Jonas

Downs and Ups

When it comes to the people you love, your heart and whole being wants them to be well and continually improving. We have been warned and our minds know that this journey will have both ups and downs, but it still doesn't fully prepare you for the setbacks.

Jonas was having a tough time on his ventilator. His tube was leaking making it difficult for him to get the oxygen he needed. They decided to intubate him with a new, bigger tube and try the Drager ventilator (the next step up). This went well for a while on Sunday, but later in the day his blood gases came back with several poor results and Sunday night they put him back on the oscillating ventilator. We have been told that this is common that babies may need to go back and forth a bit, but it was still hard because he was having such a tough time. They are also holding his feedings because he has been through a bit of trauma in the past 24 hours. On the up side, he did open his eyes for the first time that we had seen on Sunday--the picture above is of his little peepers. Monday he was pretty quiet and stable as well. For this we are thankful.

Elsa's infection cleared (yeah!) and she was able to receive her PICC line Sunday night. Things seemed well with her, so we were surprised today when they made the decision to put her on the oscillating ventilator as well (a step back). Her blood gases had been coming back with a high level of carbon dioxide and they were having to use a large amount of pressure to get oxygen into her lungs. As one of the nurses explained it, this is just a different ventilator and it will be more gentle on her lungs. These tiny precious beings need time to grow and heal and grow some more. In the tougher days it is hard to have patience, but we still have hope.

Thank you for all your support, prayers, and hope.

God Bless,

Mari & Dan & Elsa & Jonas

...and in our stockings we found...

Greetings, All.

We hadn't noticed that Elsa and Jonas had went out on the town and got some professional photographs taken as a Christmas present for us. Jonas also agreed to have his handprints taken in exchange for a slightly higher allowance in 2014.

Elsa had another good day. The doctor indicated that it is good to have 'no news' days for little ladies like Elsa and so we celebrated not having a ton to report. She is gaining a little weight...she is now at 570 grams (1 lb, 4 oz). Her blood test for infection came back clean...we now need to make it 48 hours with no new or recurrences for her to be officially clear.

Jonas is still waiting for his promotion to a new ventilator. The doctors and nurses have been weening him quickly from his vent--but he finally started to put up a fuss and now needs to ween a little slower. Jonas is also gaining weight...he is now at 700 grams (1 lb, 8.5 oz). He is now on a continuous feed line. We hope he continues to grow and grow and grow.

We are becoming very familiar with the routine of visiting the NICU. The first step is the hand wash. Signs everywhere warn of the danger of infection to the newborns in the unit and as such a premium is placed on being ever vigilant with hand washing and hand sanitizing. There are two sinks that greet us as we enter the NICU. Above the sinks is the sign "Wash your hands to your elbows for three minutes". I prefer the one on the left while Mari is a fan of the right one. My sink, as yet unnamed but I have a feeling there might be one coming soon, has some personality. To turn it on you must use the lever at thigh-level. At this point there are two settings, super fast and slight dribble. An additional challenge is that the temperature has two settings, arctic freeze and two degrees warmer than the surface of the sun. We wash up always with our eyes fixed on the second hand of the clock next to the sink. Three minutes is a long time to wait when all we want to do is see Elsa and Jonas. But we also know that three minutes is nothing if it is that extra precaution that will help.

We are so very grateful for the prayers and words of support from all our friends and family.

God Bless,

Dan & Mari & Elsa & Jonas

Boxing Day

Greetings, All.

Elsa and Jonas enjoyed a rather peaceful Christmas Day in the NICU. They both enjoyed our caroling by their bedsides and I think they were trying extra hard to open their eyes to take a quick peek at the clatter.

Elsa continues to fight a blood infection but is otherwise fairly stable. The doctor we spoke with yesterday indicated that while she had an infection it was not causing her blood pressure, tempature, or other critical vitals to change signficantly. This was such a relief to hear! The IV in her head made it through another day as well which is another blessing. She needs forty-eight hours of no infection before she can receive her PICC line. Once her PICC line is in she no longer needs the fragile IV line in her head. C'mon Elsa! Elsa continues to 'tolerate' her feeds and is digesting them well. Tolerate is the medical term the nurses and doctors use...we like to think that she savors and enjoys the nourishing milk every four hours.

Jonas enjoys the swaddling the nurses have been wrapping him in. I should note that he enjoys the swaddling except on his legs. He likes to stretch and wave his legs in the air from time to time. Jonas is up for a big promotion later today or tomorrow if things continue to progress positively. He may be ready to change from his current ventilator to the Drager ventilator. This is a good step as this ventilator is a little easier on the lungs. We had another cheer around the NICU yesterday when we changed Jonas's diaper...another present! This is great news as his digestive system is working on some level.

Our 1st Christmas with the twins was very special and such a blessing.

God Bless,
Dan and Mari

Christmas Eve

Greetings, All.

Elsa and Jonas continue to grow! It is hard to believe that both are now slightly heavier than their birth weights. Both lost a bit the first couple of days and have slowly been putting on 10 grams here and 10 grams there. Being in the NICU everyday makes it sometimes difficult to notice the small changes and daily victories that they are making. I know that we sometimes get caught up thinking months or years down the road but are really thankful for each day and moment we get to spend with Elsa and Jonas.

Elsa has an infection in her blood and the doctors are now treating her with one, perhaps two later this evening, antibiotics to help her. Once she has gone 48 hours without a positive infection result, she will receive her PICC line. This line will allow doctors and nurses to better deliver the necessary medicines and fluids to her body. We continue to pray for her brain and her blood.

Jonas continues to work with his high frequency ventilator. Sometimes when he takes his own breath in this is in conflict with the machinery so it really is best that he rests and lets the machine do the heavy lifting for now. He has seemed relatively stable with his oxygen and breathing the last couple of days.

Last night there was what I can only describe has a moment of calm in the NICU. I might have mentioned before that there are so many machines and monitoring devices at work for all the babies that there is seldom a second or two of quiet. However, last night there was a minute of absolute silence...no beeps...no alarms...peace. I'd like to think that Jonas and Elsa made a deal with the other kids to keep down the noise as an early Christmas present. So very sweet.

A dear friend mentioned to me that Elsa and Jonas were born on Day of our Lady of Guadalupe, December 12th. How apropos that our little miracles were born on a day centered on miracles!

God Bless and Merry Christmas to all!

Dan & Mari

Silent Night

All is calm, all is bright.... We are always relieved to hear that the babies have had a quiet night (or day). At our visit today Jonas and Elsa were both resting peacefully. Jonas is still doing fairly well on his oxygen (mostly between 30-40%) and we were really pumped he had a bowel movement. I know that sounds crazy, but that is one of the systems that can give preemies problems, so it is wonderful that his got working. Elsa is on antibiotics for an infection which means they needed to take the IV line out of her umbilical cord and she has a new IV in her head. Because she is so small, there are limited places to put lines and she is not quite ready for a PICC line (Jonas has one in his leg--these tend to last longer and are a good thing). We are praying for a PICC line for Elsa for Christmas, as well as for her brain to be able to clear the blood, and continue to ask for healing and strengthening of Jonas's lungs.

As Christmas approaches we are so thankful for the many gifts we have received.

We are thankful for your prayers. Our babies are miracles and it is amazing that they continue to grow and do fairly well. We have also felt peace in our hearts and we know this is a gift from God that will be needed in the months to come.

We are thankful for excellent doctors and nurses. They care, take time for us, and are vigilant. Our babies are in good hands.

We are thankful for the meals and generous gifts from our colleagues at LMS and from our church. Not only are they wonderful and nourishing, but it has made a big difference for us to have one less thing to worry about.

We are thankful for our friends and family who love us, call us, support us, listen to us, read about what's going on with us, and are just amazing. You lift us up and we feel it.

Merry Christmas and God bless,
Mari and Dan

December 22nd--A good day!

Greetings, All.

Elsa and Jonas had good days. Elsa is pretty stable at this point with minor changes in her ventilator but no huge changes. We met with a doctor today that really encouraged us to focus on the day to day victories in our journey. He was really positive and indicated that the doctors can not predict the future but only offer generalizations based on large scale studies. He also is a huge Duke fan and mentioned that we have the whole college basketball season to get to know each other better.

Jonas has been doing very well the past couple of days. He continues to improve on his ventilator settings.

My brother sent me a nice email the other day reminding me that the Lysne family is a stubborn and determined bunch. Each day we can see Elsa and Jonas determinedly survive. They continue to grow and are now each an ounce more than their birth weight...Elsa is coming in at 1 lb 2 oz; and Jonas is 1 lb 8 oz.

Today we were able to participate in some of the care of Elsa and Jonas. We were able to lift and hold Elsa while she was weighed. Quite a gorgeous girl! We also finally got to see Jonas's face without the tape that has been covering his upper lip the past ten days. Very hansome!

We are continuing to pray for Jonas's lungs and stomach and Elsa's brain and lungs.

God Bless,

Dan & Mari

Day 8

Greetings, All.
Elsa and Jonas slept well through the night. Both are enjoying a full belly of milk every four hours.

We did receive some hard news yesterday. The analogy of the roller coaster keeps getting mentioned to us about our time in the NICU. You know the dips of the roller coaster are coming up...you've heard about how scary and frightening it is when it takes the dip...you feel prepared for the dip...yet the dip is still scary. Elsa's brain scan showed a level four brain bleed...the most severe...yesterday. That means she is at a higher risk for learning disabilities and cerebral palsy. We have had an onslaught of emotions and feelings...anger, denial, sadness, and hope. We continue to ride the roller coaster another day.

Jonas did not show any signs of brain bleeds. Hurray!

God Bless,
Dan & Mari

One week old! 12/19/2008

Greetings, All.

Another day! Our babies our one week old today. We have created somewhat of a routine. We call in at 8am after the nurses change shifts. After the call, we slowly get ready and begin the drive in to the NICU. We visit the kids for a couple of hours and then make the trip back home.

Jonas (in blue with the sweet sunglasses on) has been struggling a bit the past days. His lungs are a bit beat up and he needs the help of platelets and prayers over the next couple of days. The doctor has a couple of plans depending on how Jonas responds over the next couple of days.

Elsa (in pink) has been fairly stable over the past few days. She is still on room air with the help of a ventilator.

Both kiddos are getting a belly full of milk every four hours and we are hoping that they continue to fatten up:) The holidays are for belt loosening after all!

We have been blessed with many calls of support, hand crafted meals (and restaurant created pizzas too!), and other stories of miracles over the past several days.

There are many things to worry and pray about but we are so thankful that our babies are under the watch and care of the nurses and doctors at the NICU at Tacoma General. We have run into many former Lutes that are taking good care of Elsa and Jonas.

God Bless.

Dan & Mari

I believe in miracles

Greetings, all. A miracle happened the other day. Or perhaps a better choice of words would be countless miracles happened the other day and I am privileged to report on one in particular. Mari and I welcomed Jonas Bjorn and Elsa Joy to planet Earth on December 12th around 5:15am. Our babies were born sixteen weeks premature.

In what I can only describe as surreal, the moment arrived for the delivery of our babies. A small army of nurses and doctors surrounded us and shouted orders back and forth. Machinery hummed but the lights remained so stable. As our babies were removed from the womb they were immediately placed on small tables to the side where doctors worked on getting them the oxygen they would need.

Several minutes into the delivery, two two-person teams of NICU nurses descended into the room. Their level of expertise was apparent by the calmness they brought into the room. The nurses stabilized both babies and prepared them for the fifteen minute journey to Mary Bridge at Tacoma General Hospital.

If I am honest, I am leaving out lots of details because it all happened so fast.

Several hours passed before I was able to see Elsa and Jonas in the NICU. Entering the NICU the first time is a scary experience. I did not know what to expect. After a three minute scrub of my hands to my elbows, I entered into a long room that had eight babies of various ages in incubators providing them the necessary air and nutrition for their, and our, long journey ahead. I wasn't sure if I could touch our babies and there was an ever present hum and the staccato of beeps coming from the various machines. But after another hand sanitizer, I was able to reach through two hand-holes and touch our fragile babies. Gorgeous.

My first visit with a NICU nurse was very comforting. He explained that this is a long roller coaster ride with many ups and downs. If we can keep making two steps forward for every one step back--we will be doing great.

After a couple of days, Elsa was able to take some milk in addition to her IV. Her lungs are more stable. She is on a ventilator but is able to process room air (approximately 21% oxygen). Jonas is struggling a little bit more with his lungs. He is on a different ventilator and fluctuates on the amount of oxygen supplement he needs. His current challenge is to heal up his lungs via a platelet transfusion. The doctors are optimistic with both. The babies haven't thrown the doctors anything they haven't seen before.

It is currently snowing outside and our backyard is covered with a beautiful white blanket. Jonas and Elsa are currently vacationing in the warm glow of the incubators, but I imagine they will enjoy many winters of leaving those first footprints in fresh snow in the years to come.

God Bless

Dan & Mari