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