Wonderful sleepness nights (part two of the update)

Greetings!

A great visit at the hospital today. Jonas was Mr. Smiles. We all hung out and had a grand time. The eye doctor checked out Jonas again and said that his eyes had not gotten any worse. He most likely will need glasses in the future...no treatments needed!

The pictures above are from our visit today. The last three try to capture the sequence of events that included Jonas laughing, Elsa crying, and then both looking around bewildered.

God Bless,

Mari & Dan & Elsa & Jonas

Wonderful sleepless nights

Greetings. A little over a week ago Elsa came home. We have so enjoyed the sleepless nights with her! It has truly been a blessing to hear her cries at 3am (Mari hears them a little better than I do--but I am sure I'll get better:). She continues to be a champ. She loves to snuggle, eat, and talk. On Thursday, she was getting some tummy time on the floor. After a few minutes she managed to roll from her tummy to her back. We were duly impressed.

Jonas is doing wonderful at the hospital. He just keeps getting bigger. He was quickly weened down from 1.5 liters per hour of pressure to .25 liters per hour. This is the final setting before being able to handle room air with no support. We are guessing that he has three or four weeks to go...as long as he keeps behaving...before he comes home. We can hardly wait!

We continue to pray for Elsa and Jonas to keep healing and growing.

(We are going to take some photos today and post again this weekend:)
God Bless,
Mari & Dan & Elsa & Jonas

Remembering/Thanks

Greetings,

It seems this past week has flown by. We are still adoring having Elsa home and we raised a shout of joy when she finally stooled for the first time tonight since being home--six days is way too long to be storing it up! She also went for her first walk outside yesterday in the beautiful sunshine. Several neighbors said hi and although she was excited to meet them, she slept right through it. Although I wouldn't change a thing, having Elsa home has made it hard for me to go see Jonas. I have only seen him twice since she has been home and it breaks my heart a little, but I am happy Dan can go and give him some love.

The three of us made the trek to see Jonas on Sunday and for a little while I got to hold both of my babies at the same time. How wonderful! It was just perfect, except that we forgot the camera. Next time. It was surprising to me after holding Elsa so much how big Jonas feels. He is about a pound and a half bigger than she is and he just feels solid. Jonas had the pressure on his nasal cannula turned down today--a good step for him. He continues to do well on his full feeds of breast milk and I was told today that he got in some good snuggling time with one of the nurses last night.

This morning as Elsa was waking up for her first feed in the daylight I started singing a song: "Good morning to you, good morning to you. We're all in our places with bright shining faces. This is the way to start a new day...." As I was singing I remembered this song being sung by my parents, aunts, uncles, and most boisterously by my grandpa Morgan as his eight grand kids finally came upstairs for breakfast during our summer family reunions. It brought tears to my eyes remembering how he loved having us around, how he would give us rides on his tractor, how he would let us help around the garden, how he always called me his girlfriend. Grandpa had a great life and he will be missed. I pray that my grandma Mabel will be able to feel some comfort. His memorial service is tomorrow and I am sad I will not be there, but I know that my family will wrap each other in love as they remember this special man.

On a different note of remembering. I keep forgetting to put this information on our blog, so while I am thinking of it, here goes. The nurses from the NICU and ICN are walking this Saturday in the March of Dimes March for Babies (the babies' auntie Alison is also walking!). I bought some cookies from their bake sale and one of the nurses suggested that I could put their link on our blog. The mission of the March of Dimes is that one day all babies will be born healthy. The money raised goes to support research and programs that help moms have full-term pregnancies and babies begin healthy lives. It has been amazing to me time and time again how even though our babies were so small these professionals knew what to do to help them grow. If you are at all interested in giving to this cause, the direct link to the NICU team who took care of our babies is: www.marchforbabies.org/teams/577564

Thanks God for our babies, for the life of Morgan Hoseth, and for the caring of so many people.

Mari, Dan, Elsa and Jonas

Babies on board

Greetings.
Elsa has been home for a couple of days now and the giddiness has not worn off. We still come up to one another and ask, "Hey, did you know we have a baby in the house?" Quite a wonderful feeling. Elsa has been doing great at home. She has been sleeping about three hours at a time and then politely suggesting that she be fed. Mari took her to her first meeting with the pediatrician today and all went well.

Jonas was promoted to the ICN today at 3:00pm. He is in the space next to where Elsa previously resided. He is on full feeds now and also takes 10ml via bottle. He has just had a great week. We are hoping that the estimates of three to four weeks are not too far off for him.

It has been a whirlwind week and we wouldn't have changed a thing. We are feeling so blessed to have Elsa home and to know that Jonas is making good progress.

Elsa and Jonas's great grandpa Morgan passed away yesterday. I had the privilege to play, and lose, a game or two of cribbage with him a couple of summers ago. While we are rejoicing for our kids this week, we are also thinking about great grandma Mabel and sending prayers to Minnesota.

God Bless,
Mari & Dan & Elsa & Jonas

Day 124 and Elsa is home.

Greetings.

Words can not express how joyful we are right now. However, since this is a blog, I will attempt to capture as best as I can. Elsa passed her final tests in flying colors and the nurses asked Mari if she wanted to take Elsa home today. Before the sentence was completed, I believe Mari had said, 'YES!'.

She is now resting up nicely at home.

In an almost ironic twist, Jonas was almost moved up to the ICN to her spot. The doctor decided that she wanted to keep an eye on him for a bit more though and held off on the move. He still has a bit of reflux and they just want to make sure he gets all of his feeding issues behind him first.

One of the final tests that Elsa had was an ultrasound on her brain. When she was born, she was diagnosed with a level four, the most severe, brain bleed. Over the past months we have heard increasingly good news about her brain. The doctors decided to save the best news for last. The final ultra sound showed a full recovery of the brain tissue. What wonderful news! We have many checkups for both kids over the next couple of years but it is so amazing to hear how their bodies can heal.

I feel as though I might be rambling on so I am going to go hold Elsa.:) Thank you for the kind words, prayers, and support!

God Bless,

Dan & Mari & Elsa & Jonas

Happy Easter

Happy Easter!

Jonas and Elsa celebrated Easter today with us. It was quite a special day for us all. Mari and I spent the night in one of the parent rooms so that we could feed Elsa on demand. She did great. Every couple of hours she would politely remind us that it was time to eat...and did she! She hit her required amount in style and then quickly fell asleep. I should note that she did spit up on me at 6am...I only mention this so you see the trend in a second.

Jonas celebrated Easter with his first forays into bottle feeding. The doctors determined that it was time to give him a chance on the bottle with small amounts of milk. This morning, I fed him 12 ml (1/3 of an ounce...approximately) in about 30 seconds. He was ferocious. Thirty seconds later he spit up the entire 12 ml on me. The trend continues. The nurses weren't very concerned about this as it was his first go at a bottle and he recently had surgery.

Jonas is going great on the nasal cannula and is beginning to tolerate his feeds quite nicely. Elsa is eating almost always on demand. Good times. Elsa is so close. She may be home this week! The car seat is at the hospital. The oxygen tank (for nasal cannula while eating at home) will arrive tomorrow. We are close!

Happy Easter to everyone. God is Great. We continue to pray for growth and recovery for Elsa and Jonas.

God Bless,

Mari & Elsa & Jonas & Dan

A quick update...

Greetings!
Just a quick note before I head out to work. Jonas was taken off the drager ventilator ten minutes ago. He is now resting comfortably with nasal cannula. The nurses and doctors will check his blood gases in a few hours to ensure he is handling this switch. It is great to see him recovering so swiftly from this surgery!

A proper update will follow later today or on Saturday.

God Bless,
Dan & Mari & Elsa & Jonas

A smiling surgeon is a wonderful sign...

Greetings.
Jonas had his surgery today. As the title suggests, it is quite a wonderful sight to see a smiling surgeon enter the conference room. She told us that it went very well and that Jonas had one of the larger lower stomach muscle masses that she has ever seen. We took this as a compliment:). She made a small c-shaped incision around his belly button and took care of business. While operating, she took a couple of photos of the incision she made into the muscle mass. After surgery, she showed us the work that she did and indicated that it went very smoothly. There are a few potential complications but the rates of these occurring are very low.

Mari and I visited with Jonas shortly after the surgery and he looked quite well. I should mention he did look a little angry at times but this is a good sign of a fighting spirit so I will chalk this up as a positive. The nurses carefully made him more comfortable and at last check he was asleep. He is on a drager ventilator but the hope is that he can be off it quite a bit quicker than the last surgery.

Elsa has a new neighbor. We were so happy to see her new neighbor arriving today because it is a little boy and his family that have spent a long time in the NICU as well. There is something about having a similar experience of the NICU that makes it easy to support one another during this long journey. We are so happy their little boy is doing well enough to move upstairs and also pleased to have such great company for Elsa's last few weeks in the ICN.

Elsa is doing fine. She continues to be a little stubborn on the feedings but our case worker suggested bringing in the car seat. We are getting close...maybe next week?

We pray that Jonas and Elsa continue to grow and heal. We especially are praying for Jonas's recovery.

God Bless,
Dan & Mari & Jonas & Elsa

Pyloric Stenosis

Greetings!

A day of potential answers for Jonas. We have been watching Jonas struggle with his acid reflux and general discomfort the past month or so wondering what might be done for him. The past couple of days, Jonas has been throwing up quite a bit and looking rather upset. Today, the doctors and surgeon made a diagnosis. Jonas has a term baby problem called Pyloric Stenosis. (I note term baby problem because it is nice to be considered a term baby these days--a big victory on its own).

Well, Pyloric Stenosis is the thickening of the muscle at the base of the stomach. About three out of every 1000 babies get this condition. The problem with being a body builder in this part of the body is that as the muscle gets bigger it cuts off the flow of food, saliva, and stomach juices into the intestine. Emergency doctors see this condition from time to time when babies come into the Emergency Department projectile vomiting.

The good news for Jonas is that this can be fairly easily treated. The doctor told us that in the UK babies would go on an IV for a month or two until it self corrected; however, in the US there is a surgical procedure with a relatively quick recovery. The surgeon will make several small incisions in the muscle and allow it to 'vent'. This will allow all the stomach contents to once again flow unimpeded to the small intestine. So tomorrow, at 11:00am, Jonas Bjorn Lysne goes for his second surgery. Such a tough cookie! We pray that this surgery will be just the ticket for making him feel better. The best outcome could be that his acid reflux diminishes and he is soon able to eat!

Elsa, not to forget about our sweet little girl, is doing fine. She is on a slightly modified on demand feeding schedule and is wearing a nasal cannula for additional oxygen support just during eating time. This has seemed to help her stamina the past couple of days, although she is a grabber and likes to take swipes at it during the feeding process. The social worker hinted that her release may be near. Perhaps next week!

Today was a long day but also an answer to prayers for Jonas. We pray that God continues to guide the hands and hearts of our babies surgeons, doctors, and nurses.

God Bless,

Mari & Dan & Elsa & Jonas

A weekend for four at the ICN Suites

Greetings.

Mari and I just returned from our overnight stay at the ICN family room. The ICN offers a room for families to stay overnight with their babies when the babies are stable. Elsa joined us in the room and we had a great evening! Every three hours or so, Elsa would wake up and politely suggest that she was hungry. This was a great practice for her...on demand feeding. She finally tuckered out at 8am this morning but we are all very happy with her progress.

Being in the ICN room made visiting Jonas very easy too. We hopped down a flight of stairs and were at the NICU. He also made some huge progress this weekend. He was removed from the ventilator and placed back on CPAP. Yesterday, the doctor decided that he was big and strong enough to go on to full-time cannula. He has been going strong for a day now! Great news as this is a big step forward for his breathing and also would eventually allow for his second hernia operation to occur with out having to go on ventilator.

We had a great weekend and enjoyed our first sleepness night caused by babies crying and not by late night hospital calls.

We are praying that Jonas keeps on getting stronger on his breathing. He can do it! And we pray that Elsa eventually gets tired of the ICN day spa and wants to come home:)

God Bless,

Mari & Dan & Elsa & Jonas

Off the ventilator!

Greetings.
After a long week it is nice to have finally made it to Saturday. Jonas had the rougher time of the two but had a big win on Thursday. He was taken off the ventilator and put back on CPAP. He had a couple of forgetful moments during the evening and had to receive manual breathes but otherwise has enjoyed the change back. The surgery corrected one of his hernias so he still has some discomfort from the other side. We are hopeful though that he can get some rest this weekend and keep making progress on his breathing.

Elsa continues to slowly learn to eat. She had another sleepy day yesterday but is making progress. Since she has been receiving her feeds automatically into her stomach since she was born it is a little challenging for her to realize that she needs to eat to be full. But we are getting there!

This weekend, Mari and I get to stay in a parent room at the hospital. We are of the firm belief that this counts as a vacation! We will be 50 feet or so away from Elsa and just a flight of stairs away from Jonas. The hospital sets these rooms up for parents as the babies get closer to going home. What a great motivation!

We pray for Jonas and Elsa to know that we love them. And we continual to pray for healing.
God Bless,
Dan & Mari & Elsa & Jonas

The original due date...

Greetings!

The original due date for Elsa and Jonas was April 1st. It is with a grateful heart that we can officially announce them both full term babies! While we have a ways to go in the hospital, it is reassuring to reach another milestone. Sometimes it feels like the deck is not being dealt in our favor, but then we remember how awesome it is to have a hand to play at all. It has been a hard week but I have to say that our spirits were lifted when we opened our shades today to an April 1st snowstorm. Snow on both their birth days and their due dates...our winter miracle extends into spring! And with that...an update on our two babies:

Elsa met with the speech therapist today to work on bottle feeding. While she didn't take a great amount, the specialist was pleased with her breathing and swallowing. Elsa has made progress these past couple of weeks. Two weeks ago she was only receiving about 30 percent of her milk via her mouth. Now she is up to the mid 40% range. She is so close!

Jonas has had a long week. His surgery went well on Thursday with the surgeon happy with the outcome. He has been up and down in his recovery. When he started to come out of his sedation, he fought the ventilator which required him to be further sedated. The past couple of days it seems like he has been doing better. While he is sedated, he no longer is on the paralytic medication. His eyes are open and he grasps visitors' fingers but he is still a bit out of it. We are hoping that these extra days have given him more time to heal. The doctors and nurses have been pleased with the incision area and feel it has closed up nicely.

Again, many thanks for the kinds words, prayers, cards, and thoughts for our family. We continue to pray for healing and growth for Elsa and Jonas.

God Bless,

Dan & Mari & Elsa & Jonas