Kindness

Greetings,

God works in amazing ways. Honestly, it has been a little hard the past couple of days. Elsa seems so close to coming home, but she just won't budge when she is sleepy. There is no point in trying to get her to eat during those times, even though nurses and mom has tried. I think she might be waiting for her brother. It is also hard to see Jonas back on the ventilator after he worked so hard to get off of it and to see him struggling a bit with breathing. So after feeling a bit defeated, how wonderful to be uplifted by others and reminded that there are so many prayers being offered. Our family and friends have been so consistently wonderful on this long haul--how comforting to be nourished and supported by daily acts of love like feeding us, leaving us messages and helping clean the house! I think the part that really brings me to tears is that people we don't even know care so much. I received a beautiful gift from a friend of a friend this weekend. It is a necklace from Simply Silhouettes that has Jonas's footprints on one side and Elsa's on the other so I can carry a piece of them with me when we are apart. It was amazing to me looking at the prints because they are recognizable to me--Jonas's left foot looks bigger than his right, just like on the print from the hospital. And Elsa's feet look more slender than Jonas's. They are precious and it reminds me how far they really have come. God knew we (I) needed a little encouragement this weekend. We also received a card from a women's Bible study in Idaho. How lovely to be reminded again of the prayers and support. The sticker on the envelope from the ladies is Psalm 37:7--Rest in the Lord, and wait patiently for him. This is becoming my mantra. My Grandma (who also is a twin) wrote. The card said something about remembering that children are a blessing, even at 3:00 AM, and she wrote on the inside that she wished she could take off the part about 3:00 AM because of course we know our children are a blessing all of the time. She is right. And that is where my focus needs to be especially when this road is seeming long. Thank you for walking with us. I kept thinking that when the weather gets nicer and spring is here we will be able to take our babies home. Slowly it is coming. Surely it is coming. We hope and trust and pray that it is coming.

Please pray for Jonas to heal from his surgery and that he will successfully get off of the ventilator.

Love, Mari, Dan, Elsa and Jonas

A weekend at the (NICU) spa.

Greetings.
We have had quite an eventful and long week at the NICU and ICN. Jonas is recovering from his surgery in his original nook in the intensive care room of the NICU. He is still being heavily sedated and is unable to move. The doctors want to give him a weekend to focus only on healing. It is tough to see him motionless in his crib with several IV's and a PICC line in, but we know that he is doing okay and needs this time to recover. The doctors will start letting him wake up a bit on Monday and begin the gradual ween of the ventilator to get him back on CPAP. I talked with Jonas today and told him to live it up in the NICU spa and get ready for some serious growing. He agreed to that plan.

Elsa continues to deliberate on whether she wants to eat at her feedings or sleep. It is about a 50/50 split currently. It is just a matter of time. Otherwise, she is doing very well and winning the hearts of all the nurses in the ICN.

We received several cards today that really lifted our spirits. It is easy to get frustrated sometimes because of the hiccups we have in the NICU. But it is in these times when we are feeling down that these encouraging cards of hope and prayer bring tears to our eyes and hope to our hearts.

We continue to pray for healing for Jonas and Elsa. (Pictures will resume soon--we forgot our camera)
God Bless,
Mari & Dan & Jonas & Elsa

Emergency Surgery

Greetings.
I arrived today to find Jonas being transferred to a transportation isolette. The doctors wanted to take a look at hernia and intestines via a special exam. The exam indicated that he did have a blockage in his intestine. The doctors decided to sedate him to see if they could manipulate the hernia to loosen the 'kink' in the intestine. After a valiant but unsuccessful try, the doctors determined that Jonas needed an emergency surgery. A whirlwind of actions then occurred, Jonas was placed back in his original location on day one in the NICU and sedated and placed on the drager ventilator.

The surgeon met with us and told us that this is one of the most difficult surgeries because of the frailty of the tissues in babies the size of Jonas. The surgery would be further complicated by the swelling that was occurring in Jonas. He indicated that there were three possible outcomes of the surgery. The first outcome could be that the surgery would be a traditional hernia operation. The surgery would only correct one of his hernias. The second outcome could occur if there was a breakdown in the colon. He would remove part of the colon and surgically connect the two healthy pieces. The final option would mean the colon was so damaged that he would have to route the intestine out of Jonas's body and into a bag. After signing the consent forms, Jonas was wheeled away and we waited.

We waited nervously in the surgery waiting area. While we weren't shocked at this development, we knew that Jonas would need a hernia surgery, we still must have looked quite tired to the receptionist in the waiting area. She went out of her way to show us around and get us comfortable for the wait.

After an hour, the surgeon came up and told us the news. The surgery went great. He said that he only had to perform the routine hernia operation and that Jonas's intestine looked healthy. It was an answer to a prayer. We were so thankful to the amazing doctors, surgeon, and nurses.

Elsa, sweet little girl, looked a little agitated when we visited her briefly while Jonas was in surgery. I think she could tell that her brother was having a rough day.

We continue to pray for Elsa and Jonas to heal and grow....heal and grow....heal and grow.

God Bless,
Dan & Mari & Elsa & Jonas

Happy B-Day!

Greetings.

The good days keep on adding up for Elsa and Jonas. Both are stable and growing.

Elsa is Ms. Consistent. She is sleeping, breathing, and digesting right on target. She is on 100% room air with no nasal cannula necessary. Her last hurdle to overcome is receiving all of her food via her mouth. She still has a feeding tube for when she is too tired to nurse or use a bottle. She'll get there! So close! She officially joined the six pound club today.

Jonas had a Bath-Day today. It was quite fun for Jonas and I. He had a constant look of bewilderment on his face while I lathered up his hair. Good times! He is now at 2 four hour trials on nasal cannula and is getting ever so close to full time cannula. Once there, he is a candidate for moving upstairs. Jonas weighed in at six pounds and thirteen ounces today...almost seven pounds.

Today is Mari's Birthday! She was able to hold both babies for quite a while today. What a great gift!

God Bless,

Dan & Mari & Jonas & Elsa

Oops...101 Days and counting...

Greetings.

We met with a cadre of nurses today and determined that, yes, you do count the day of birth in the day count. As a result of this discussion, I would feel remiss if I didn't announce that today is actually the 101st day for Elsa and Jonas at the NICU and ICN.

Mari and I heard from multiple nurses today that it isn't too often that parents are still smiling after so long in the hospital. I am going to attribute our high spirits to: 2/3 faith; 1/4 love; 1/8 cupcakes; 1/2 family and friends; 1/18 the latte stand in the hospital; 1/18 the latte stand in downtown sumner; and 1/2 all the other miscellaneous things that I am forgetting. Yes, the sum is always so much more than the individual parts.

Elsa had another good day. She is getting so close. She just needs to be a little more awake during feeding times so she can get all of her feeding via her mouth.

Jonas is looking good. Another good trial on nasal cannula and continued success with his CPAP. He continues to lose a little of the water weight and looks the better for it.

Both were joys to hold today. We continue to pray for more days of healing and rest like today.

God Bless,

Mari & Dan & Jonas & Elsa

Day 100

Greetings.

We have reached quite a milestone today. One hundred days at the NICU and ICN. I was talking with a nurse yesterday about this milestone and we both agreed that we have fewer days left in the NICU than we have already put in. We are very hopeful then that the Day 200 update has tons of stories about Elsa and Jonas sleeping in their cribs at home!

Jonas had a great day yesterday. He lost a little of the water weight gain and was looking rather dashing. We hung out for several hours and he did great on his nasal cannula. He has also continued to be weened on his CPAP; he is now at a four pressure setting (he was at a five at the start of yesterday and a six the day before).

Elsa was good yesterday too. She did quite well at one feeding and then decided that she would rather sleep the rest of the day. Again, the final hurdle for her and coming home is that she needs to get all her feeds by mouth. She is getting there ever so slowly.

We continue to pray for Elsa and Jonas to heal and grow. Thank you for your continued support.

God Bless,

Mari & Dan & Elsa & Jonas

SWEET 12 (Pictures)

Greetings!

Another fine fine day at the NICU and ICN.

Jonas had a great time on nasal cannula and has been weened a bit from six to five on the settings on his CPAP. He is looking huge! He likes to eat.

Elsa also had a great day. She started on some reflux medicine and was able to get over 50 ml at one feeding. You go girl.

A doctor in the ICN mentioned to Mari that he is going to be gone for a month. Mari told him that maybe when he gets back Elsa will be home and Jonas will be in the ICN. He smiled and said that maybe, just maybe, when he gets back both babies will be home.

God Bless,

Dan & Mari & Elsa & Jonas

March Gladness

Greetings.
During the first couple of weeks at the hospital, we were really unsure of how long Elsa and Jonas would need to stay at the NICU. We knew it would be a while but we weren't sure if we were talking several months or closer to a year. One of the doctors sat down with us after a couple of weeks to review both kids' medical needs and to give us an overview of what challenges they might face in the days and weeks ahead. He noted that their expected due date was the end of March and he jokingly told us that we would have the whole college basketball season together. At the time I really appreciated that comment because it time-bounded our stay a little bit. A college basketball seasons isn't too long...we can do it.

Now that March Madness is here, picking my bracket is a little different this year. In year's past, I made my choices and hoped for the occasional upset and always picked Duke to lose. This year, I am rooting for the sixteen seeds (I didn't actually pick any on my bracket--but let's go Morehead State), teams to overcome amazing deficits, players to show gritty determination, coaches to show wisdom and grace, and Duke. The doctor is a Duke fan.

Our baby bracket update:
Jonas Bjorn is still doing quite well with the two a days on nasal cannula. He can use the cannula when he is being held. So far so good. The J-tube for feedings has seemed to have done the trick for his reflux problems. Mari reports that he really loves his pacifier but can sometimes still get a little too focused on it and need a quick reminder to breathe. With that being said, he hasn't had any serious apnea or brady episodes in days. He is still doing well in his new room assignment in the NICU. While it is a bit more crowded, it is a positive step because it means the doctors and nurses trust that he needs less supervision.

Elsa Joy is having a blast up in the ICN. She had one of the nurses make her a sign declaring her a princess. During the photo shoot for this sign that is placed next to her crib, she kept refusing to open her eyes. Yesterday, Mari said that Elsa took over 50 ml of milk during her morning feed. This is her best result to date. Elsa proceeded to sleep the rest of the day to celebrate her success.

Mari and I are looking forward to taking baby CPR sometime in the next couple of days. This is a check-off that needs to be done before Elsa (and Jonas) can come home.

Thank you for the continued prayers of healing for Elsa and Jonas.

God Bless,
Dan & Mari & Elsa & Jonas

Festivus

Greetings,

Our kids were feeling in the holiday spirit today. Elsa was celebrating St. Patrick's Day with her green attire and Jonas decided to celebrate March madness and the coming of the NCAA tourney with his basketball outfit. (Thanks Auntie Jane!) It was a big day in other ways as well.

Jonas got a bath from mom for the first time and he seemed to like it. He also gets to be on nasal cannula two times a day for two hours at a time and he did very well with it during his bath and cuddle time afterwards. Jonas also was moved to a room across the hall which means they trust him enough to be there and it is a step closer to going upstairs with Elsa. And, big Jonas weighed 6 pounds 2 ounces today!

Elsa did an amazing job nursing this morning. She took in 44 ml (her full feed is 45 ml). I think she got all tuckered out because she slept right through her next care time and then took 30 ml this evening. This is a big improvement over the last couple of days where she has taken between 14-18 ml at a time. There are rumblings of talk of home...but she still has to be able to take all her feedings either from nursing or a bottle. Not quite there, but on the way! Elsa weighed 5 pounds 6 ounces today.

We continue to be amazed and thankful for their progress. I believe their well being has a lot to do with the love, prayers and support we all receive. Thank you!!!

Mari, Dan, Elsa and Jonas

Two tales of nasal cannula

Greetings!

Tale #1...

Elsa had been taking her nasal cannula out by herself the past couple of weeks. After a while of this little game, the nurses and doctors decided that they would see how she could do without the nasal cannula during rest times. The rest times went well and then the doctors suggested that she try feeding without supplemental oxygen. This went well too. So, little Elsa, our sweet little girl, now has no supplemental oxygen and is hanging out in room air. Quite an accomplishment...room air at week 37! We are so proud of her.

Tale #2...

Jonas has had the J-tube in for a couple of days now. This tube lets his food bypass his stomach and dramatically cut down on his acid reflux. The first day with the new tube Jonas looked very unsure of this new change. But a funny thing happened over the next couple of days. He has been doing much better. His apnea and brady events have started to decline and he is down on his oxygen requirements. He spent much of last night in 24-25 percent oxygen on CPAP. Today, the doctor suggested that it was time to try the nasal cannula again while he is being held. I held Jonas for an hour on the cannula and he was a rock star! We are so proud of him too!

We are currently debating making some changes to how Elsa is fed...on demand versus every three hours. Over the next few days we might tweak this schedule. It would give her a chance to show if she is capable of eating all her food or if she still needs some via a tube. We are also waiting to see how Jonas responds to the nasal cannula. He needs to be steady on this in order to have a surgery for his hernias. We are hoping to have him on cannula for this surgery as opposed to being put back on the Drager ventilator for the surgery.

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

God Bless,

Dan & Mari & Elsa & Jonas

3 Months Old

Greetings,

Every day with our babies is a celebration. In some ways, it is hard to believe they have already been around for three months. On the other hand, I have gotten multiple, "You've been here a long time" comments from staff this week. Maybe it is beginning to show.... We celebrated three months today by singing happy birthday to each of them in Norwegian, doing some hand holding, and some cuddling.

Elsa continues to eat a little when she is awake and gets fed through her tube when she would rather be sleeping. Learning to eat is a slow process, but she is doing very well all considered, and we know she will continue to improve. She had her second bath given by mom today and seemed to enjoy it. She was a little more wiggly this time. It sure is difficult to hang onto a naked, wet, squirmy baby! But what a joy to be able to do something as normal as give her a bath. She was sure tired after getting clean and a full tummy--what a workout!

Jonas had a fairly steady day. He has a new tube that goes from his nose past the stomach into the jejunum (a new body term for me). The hope is that he will no longer reflux if there is not milk in his tummy to reflux up. In talking with the doctor this morning we are also hopeful that this new plan could help to heal his lungs as well. He was having significant reflux, so chances are that he was aspirating some milk into his lungs, which doesn't help the breathing or healing process. We are praying that he will rest and heal and grow out of these breathing issues. There is a chance he will need to have a procedure done later on because of how significant his reflux was, but we will cross that bridge when we get to it and keep praying for healing. Jonas also received a brain scan today (routine checking) and the eye doctor was going to follow up on his eyes tonight as well. I think Jonas was a little tired of all the prodding of late as he seemed a little agitated tonight. We are praying he sleeps well and will relax.

Thanks for your prayers!

Love,

Mari, Dan, Elsa and Jonas

Reflux, Results, and Relaxation

Greetings.

Another couple of days, and our babies continue to grow.

As the title suggests, acid reflux is still a central conversation at the NICU with big Jonas. He had a test done on him today that did not go so well in terms of his behavior. He had a reflux moment about 28 minutes into the hour long study that necessitated a quick return to the NICU from the lab to get him breathing again. While this was scary, the nurses were able to get him going again and he was doing okay by late afternoon.

I was holding him when the doctor came in with the results. Jonas was having lots of reflux during the study and the doctor decided that the best bet was to try to bypass his stomach and put his milk feeds into his intestine. This would allow Jonas to keep breathing and hopefully not reflux as much. The process is rather simple, the feeding tube is placed just past the stomach...no surgery--just steady handiwork of the highly skilled nurses. The plan is to continue to monitor this. To paraphrase the doctor....Jonas can go home with a feeding tube but he can't go home if he is turning blue twice a day. I tend to agree with this thought.

Elsa had a good day. She continues to feed well when she is awake. Occasionally she would prefer to be asleep and opts out of participating in the feeding practice. She will figure it all out.

By late afternoon, Jonas and Elsa were both conked out and ready for some good relaxation. So are we!

We pray for Jonas and Elsa to continue to grow, eat, smile, sleep, breathe, and look with wonderment from time to time at their parents.

God Bless,

Dan & Mari & Elsa & Jonas

Five pounds (more or less)

Greetings.

We are so close to it being official we are just going to go ahead and call it. Jonas and Elsa are five pounds! Jonas weighed in today at five pounds and four ounces! Elsa was a close second at four pounds and fifteen and a half ounces. Elsa celebrated this news by smiling at me multiple times over the weekend and opening her mouth like she was hungry whenever she saw Mari.

We are waiting to hear the results of a specialist's examination of Jonas. Jonas continues to struggle with acid reflux and takes a couple of breaks from breathing every day. We are hopeful that the GI specialist has some suggestions to help Jonas get over this hurdle. Jonas is taking Prilosec now and is back on continuous feeds in an attempt to help him.

Elsa just keeps on trucking. She receives her food either via nursing or a tube currently. We are still adjusting her feeding to give her the best shot at being successful. She now occassionally snoozes without her oxygen cannula in.

We are so proud of both of our kids! Each day is a victory and we love every minute we get with them. We continue to pray that they heal, heal, and heal!

(Pictures--the first two are of Elsa...the rest are of big Jonas Bjorn--Jonas doesn't have his CPAP oxygen on during these pictures)

God Bless,

Dan & Mari & Elsa & Jonas

Remarkably Improved

Greetings.

Elsa's nurse commented that they were monitoring her head growth because the measurement yesterday was significantly different than the previous day's measurement. Preemies can sometimes have issues of brain swelling, or water on the brain, as a complication to earlier brain bleeds. Mari and I were both very concerned but trusted that the doctors and nurses would do what needs to be done. As in previous scares, we prayed boldly and we trusted boldly that whatever the outcome would be we would have the strength to handle it graciously.

With that as a preface, we were both a bit nervous about what today would bring. I was at work when my phone began to buzz. "It's me and I'm calling with good news..." I should mention that my work location is notoriously bad with cell reception and I only really heard "It's me...good news." After reconnecting on a land line, Mari relayed the update. During the night, the nurse remeasured Elsa's head...no change. The nurse thought that the variance from the previous measurement was due to different measuring angles taken by her and the previous nurse. The doctors performed a brain scan on Elsa and it was 'remarkably improved' since her last scan over a month ago. Swelling and clotting were resolving themselves and it appeared that she had significant healing to her brain. While we won't know for years what complications she may have, this report is the best possible news we could have hoped and prayed for.

Later today, we visited Jonas and his nurse. It was quite a moment of relief for all of us because the nurse had taken care of Elsa early on and was very familiar with her journey in the NICU. Jonas celebrated by taking a few breaks from breathing but did self-correct a couple of times. Perhaps he is beginning to feel a bit self-conscious about not breathing or perhaps he didn't want to take the limelight away from Elsa. I'll chat with him more tomorrow and find out.

Otherwise, Jonas was good. He likes to eat and sleep and usually breathe. We'll keep working on that last one and help him grow out of it.

Our prayers continue for Elsa and Jonas. We also pray that God continues to guide the hands and hearts of the nurses and doctors at the NICU.

God Bless,

Dan & Elsa & Mari & Jonas

Demand Feeding?

Greetings,

So far, as far as feeds go, our babies have had continuous feeding in the beginning and more recently have moved to getting their milk once every three hours, but as of yesterday Elsa was allowed to feed "on demand" when I am at the hospital. She wasn't super sure about it yesterday. I think she got all tired out at her first attempt of the day and then we had to wake her four hours later to try again and it didn't go as well. She is still thinking about it and learning what a hungry tummy feels like. Today, interestingly enough, she was awake and ready to eat at almost exactly three hour intervals. She is doing a great job attempting nursing and is very sweet to be around. She is very patient waiting for her mom to unhook all her cords, weigh her, then re hook everything before settling in to feed. Trying to accommodate Elsa and being there for her has made it interesting the past couple of days getting from the third floor to the second to try and spend some quality time with Jonas.

Jonas has continued to have some episodes where he stops breathing and his oxygen and heart rate drop. The doctors think it is due to reflux, which all babies have to some degree. Some preemies with reflux will stop breathing when milk comes back up because they are protecting their airway so the milk does not go into their lungs. This is good, but stopping breathing and not starting again is obviously bad. Jonas is now on a wedge in his bed (more than a 45 degree angle--we tease that he is checking out the ladies in the room) and he just started some medication that we hope will help with the reflux. He is doing a great job eating and could teach his sister how to let us know about hungry tummies as he gets a little upset if his meal is not started right at three hours. He does love to snuggle, as much as is possible with the CPAP contraption on his head.

We continue to pray for healing and strength.

God bless,
Mari, Dan, Elsa and Jonas

Continued small victories

Greetings.

Elsa and Jonas continue to amaze us. Wide eyes. Semi-smiles. Hand holding. Each day is a victory and each day makes us one day closer to home. This weekend, we clumsily attempted to install car seats. We have waited so long to do this! We've held off, not wanting to have these tangible representations create impatience to get our babies home. But we know that they are coming home. Perhaps sooner than we could have imagined on December 12th!

Elsa is on the fast track. She is most likely several weeks away still but she is doing wonderful with her feeds and breathing. During her feeding times, she can be very alert and awake or conked out. The doctor checked her hearing today and she passed with flying colors. Great job, Elsa!

Jonas continues to be Jonas. He likes to take the occasional break from breathing causing his heart rate to plummet like the stock market...but his heart rate always comes back up with a little coaxing. Otherwise, he has been really stable and continues to charm us with his attempts at smiles.

We continue to pray for Jonas and Elsa to heal and grow and...when they are ready and stable...to come home.

God Bless,

Elsa & Jonas & Mari & Dan