The baby whisperer

Greetings.

It has been a little over a week since Jonas came home and we have been overjoyed! There is always a baby to be held, fed, or changed now! Jonas and Elsa have been lighting up the house with their smiles...and keeping us awake with their frowns:).

Jonas had his checkup with the surgeon who performed his last surgery. The surgeon gave him a gold star for his recovery and indicated that no further follow-ups were needed.

Jonas also had his first visit from the Nicu home visit nurse this week. Again, he did great. He is putting on a lot of weight. He now tips the scales at over ten pounds!

Elsa was out of the limelight with the doctor visits this week but she also has been doing great. She is putting up with Jonas quite nicely. He likes to kick her while she sleeps in the crib.

We are working on becoming baby whisperers. There is some magical combination of kisses, head patting, blanket tucking in, and soft music that lulls both the babies to sleep. We stumble across the formula from time to time but forget to write down what exactly we did.

We continue to pray for Elsa and Jonas to grow and heal. We also pray for the families we know that are still in the Nicu/Icn waiting to come home.

Here's to sleepful nights!

God Bless,

Dan & Mari & Elsa & Jonas

Hey, are you smiling!

Greetings.

Almost one week has gone by since Jonas gave up his lease at the ICN and took up permanent residency at the Lysne Household. And what a week it has been! Our zone defence technique of taking care of Elsa quickly broke down and we needed to switch to man to man (parent to baby) defence. What a wonderful challenge to have! We have lost a lot of sleep but Jonas and Elsa are worth it.

Jonas has been doing really well at home. He has gone on two trips in the stroller around the neighborhood and has explored the first floor of the house. He has nasal cannula on that makes it a little more difficult to take him anywhere but we are so pleased with his eating and energy levels. His first visit to the pediatrician went great. He is doing well with his weight gain.

While I type this, Elsa is commenting, via crying, about her disdain for not being held. She also had a great doctor's visit. She is up to seven pounds and twelve ounces. We were really nervous that she hadn't put on any weight so this was great news...11 ounces in two weeks.

Both kids are doling out their smiles...quite a treat!

And with that, I am being paged by Elsa for lunch.

God Bless,

Mari & Dan & Elsa & Jonas

My name is Jonas...

Greetings! Wow. 158 days ago, Jonas was born. Today, he finally was able to come home.

It has been quite a special day. We arrived at the ICN and were warmly greeted by nurses, doctors, and case workers. So many people took time out of their assignments to swing by and congratulate us. Three of the four "special forces" Nicu nurses that were present when Jonas was born were at the hospital and each gave him a nice goodbye pat on the head or caress of his cheek. One of the doctors that was with us from the very beginning stopped by and gave Mari a huge hug. Several nurses were looking a bit misty and told us that this is why they do the job that they do...for graduations. On a lighter note, the custodial nurse offered to have me mop up and clean out his area as her going away present.

While we are celebrating, it is also a little bittersweet to know that some of the neighboring babies will need to stay at the ICN for several more weeks and months. We continue to hold them in our prayers.

Jonas is looking good. He has some minor swelling from his last surgery that will subside in the upcoming weeks. Otherwise, he is happy and healthy and hungry. He will be on oxygen, at a really low rate, for the time being to help give him energy.

Elsa, ready or not, your brother is home.

God bless,

Mari & Dan & Elsa & Jonas

Come Monday, it will be alright...

Greetings,

For you Jimmy Buffet fans out there, you know the next line of that song is, "Come Monday, I'll be holding you tight." That's right! If all goes well today and tonight Dan and I will be taking Jonas home with us on Monday! It has been over five months and we are just thrilled they both have come so far. Jonas has been doing great with just a little step backwards in his eating volume and weight gain, but on the whole, Jonas really loves to eat. Yesterday I was feeding him for most of four and a half hours with just a couple of breaks to try and get him to sleep before realizing that he really wanted more. Sometimes I get so caught up in the numbers for both Elsa and Jonas--they need to take in so much at each feeding and if they don't we are behind for our total on the day. For Jonas that might mean not coming home and for Elsa, who is already a little behind on gaining weight, it might mean not getting what she needs to grow appropriately. I had another great talk with a couple of nurses on Friday that reminded me of some truths. We need to learn to trust ourselves and trust that things are going to work out. If they are crying and refusing to eat anymore there is probably a reason why they can't eat right now and it's okay. You can't force-feed a baby. That might sound obvious, but we really have been trying to get Elsa in particular to take more and it really doesn't work out to force it. I learned about trusting myself to know her when after six days on a new reflux medication she seemed to be crying at every feeding and was really in pain. After calling and getting the prescription changed again she has been a new baby the past couple of days. She still has her feeding issues, but at least she is not crying, arching and turning red every time she tries to eat. Jonas will be coming home on oxygen (we have a tank that is as tall as me in the living room!) and an oxygen and apnea monitor. The monitor has the loudest alarm I have ever heard on it so I am hoping that it doesn't alarm as often as the ones in the hospital do, but whatever it takes to get him home. I am so thrilled to think about not having to leave one of my babies everyday. It will be so nice to be able to spend a day at home and not think about rushing to get to the hospital daily. We will have doctors' appointments twice a week for about a month, but hopefully they will slow down after that. I am also thrilled that Dan will be able to be home with us as well. When the babies were born it snowed and then it was winter vacation. He did not use paternity leave when Elsa came home because we thought it would be better used when they were both home, so with some personal leave thrown in there Dan will be away from work for a little over two weeks! What a blessing! We will post some pictures tomorrow.

The light is so bright at the end of this tunnel I can barely stand it. Thank you so much for all your prayers and support!

Love, Mari, Dan, Elsa and Jonas

Success!

Greetings.
We wanted to give everyone a quick update on Jonas's surgery. It was a great success. The surgeon indicated that everything went as planned with no complications. He noted that Jonas is at a risk of recurrence of hernias but that is really a manageable problem. We held Jonas about a half an hour after surgery and he was already showing signs that he was hungry and ready to eat. He is recovering in the Nicu for a short period of time and will eventually move back up to the Icn when the doctors feel he is ready.

Thanks for the good thoughts and prayers today!

God Bless,
Mari & Elsa & Jonas & Dan

Surgery number three...

Greetings.
Today is Jonas's third, and hopefully final, surgery. He is having a second hernia repair surgery today. The same surgeon that performed his hernia on the other side is operating on him today. Last night, in the late evening, Jonas was taken back down to the Nicu as a preparation for surgery. His feeds were stopped and he was placed on an IV. This is all common practice for surgery. Later this morning he will go in to surgery and we pray that it will be a successful and swift procedure.

Mari will be at the hospital to go with him from the Nicu and ride the elevator up to the operating level. I plan on meeting Mari in the waiting room for surgeries. Our surgeon is a really patient and a complete pro. At the last surgery, which was done under much more stressful circumstances, he was a true calming presence for Mari and I as he explained the procedure, possible outcomes, and his game plan.

We have a couple more hours to wait. Given that we have had several months to wait for our babies, it may seem like these couple of hours are nothing in comparison. However, it is in these real specific waiting periods...ie...a test result, a surgery, a phone call from the hospital...that we are a little more anxious than usual. We pray for God to guide the surgeon's hands and heart today.

Thank you for all your support.

God Bless,
Mari & Elsa & Dan & Jonas!

Jonas and Monday...

Greetings.

Mari wrote about how the doctors and nurses were debating on giving Jonas a try on demand feeding. I am pleased to report that Jonas confirmed what so many of us prayed, hoped, and kept our fingers crossed for...Jonas likes to eat. On the surface it is a pretty simple concept, Jonas needs to take a bottle and eat his food. However, in the Nicu and Icn, babies sometimes struggle to get the hang of it. Jonas amazed everyone when on his first attempt he took his full feed. He continued strong performances all day yesterday and today.

Knowing that he can eat and not have any reflux issues has convinced the doctors that he will not need to have any additional GI surgeries. They had talked of inserted a G-tube (a direct line that opens on his belly so we could insert milk) or a tightening of the stomach valve. My last conversation with his nurse indicated that the surgeon was ready to do his hernia surgery only on Monday morning. What amazingly wonderful news. So now we pray for God to guide the surgeon's hands and heart on Monday when he operates on Jonas.

The nurse also noted that once his surgery is done and he has recovered, he will be ready to come home. We are so close.

Elsa spent the day with Dad today. We both napped frequently. Elsa's goal is to put on weight a little bit quicker. She is 7lbs and 5ounces and needs to catch up with Jonas. The doctors have been changing her prescriptions and milk formula to hopefully get her growing a bit more. Otherwise, she is doing great.

We pray for patience, healing, and growth for our babies and us in the days ahead.

God Bless,

Dan & Mari & Elsa & Jonas

Keep on Truckin'

Greetings,

We have been a little slower on posting now that Elsa is home. With the swine flu outbreak the hospital has changed the visitation rules to protect the babies. Currently, only Dan and I are able to visit Jonas. It is not too different from before, but we are not able to bring Elsa in with us on weekends, so we end up taking shifts watching her and seeing Jonas. It is a bit hard to only see him a couple hours a day.

Jonas continues to want to eat very badly (he sucks down his allotted 20 ml in no time and loves nursing once a day), but he also continues to throw up quite a bit and we are not sure why. It looks as if there will be some more GI testing in his future. They are taking a look at the muscle at the top of his stomach to see if it needs to be tightened by surgery or not. Jonas is getting pretty big. He was 9 pounds 2 ounces on Monday, and I just accepted the fact that I need to not bring in any more of his newborn sized clothes. In these days where it feels like he is not moving forward and frustration starts to creep in there have been moments where people share insights I cling to. One of the nurses in the ICN asked how Jonas was doing the other day--I told her there was not much progress. She paused and said, "Masterpieces take time. You just need to wait for your masterpiece to be complete." What a dear thought. I also had a conversation with one of the doctors in the ICN whom I had not met, but who took care of Elsa quite a bit. He was laughing about what a mind of her own she has. All she needed to do to go home was wake up and eat and it took her eight weeks to decide she was ready to do that. This doctor was meeting Jonas for the first time and he was commenting that one of the other doctors had said that Jonas was one of the most remarkable babies he had seen, and he had seen a lot of babies. It was just five weeks ago that he was trying to recover from the first surgery and having a hard time on the ventilator, at times requiring 100% oxygen and now he is doing great on the lowest oxygen support available. Sometimes, when I want him home so badly, I start to forget how far they have come. It is good to remember and be thankful.

Elsa has her outpatient checkups with the pulmonary doctor (hopefully she will no longer need oxygen for feeding) and the GI doctor (to check on her reflux issues) tomorrow. I am hoping these appointments will go well as it will be a long day for both of us!

Love to you,

Mari, Dan, Elsa and Jonas

No Place Like Home

Greetings,

I apologize that it has been so long since we have posted anything. We have been having so much fun having Elsa home and trying to juggle getting back to the hospital to spend time with Jonas. Elsa is doing great. She sleeps in her crib sometimes, is eating pretty well and really likes to go for walks and be held. The pictures show her getting ready to visit her brother at the hospital, sleeping with dad, talking with Grandma Jeanne, and getting ready for a walk in the beautiful sunshine.

Jonas has had an eventful week. He tried a couple of days without nasal cannula at the beginning of the week, but it didn't take and they decided he needed to stay on it for now. Jonas also got the green light to breast feed once a day this week. It is amazing to me that after four and a half months of waiting he still knows what to do and has done well for his first couple tries at nursing. The doctors tried to shortened his feeds from going in over two hours to going in over an hour and a half. This also did not take as he ended up having lots of spit up, so he is back to the two hour plan. This led to a study of his small intestines, which we found out today came back normal. They are also monitoring his thyroid to see if it might be causing him issues. It is a bit of a mystery why he is not able to tolerate feeds going in at a faster rate. So, we'll just keep waiting and hoping he will grow into eating well. He is growing big and is getting stronger all the time.

We are so thankful for our babies and for your prayers and support.

Love, Mari, Dan, Elsa and Jonas