Day 78

Greetings,

We are happily amazed at the progress our babies have made in the past eleven weeks. Elsa is in a crib and doing a good job of keeping her temperature steady. She had a bath on Friday and "tolerated it well" and passed her eye exam with flying colors (her nurse had her wearing a party hat when we came up to see her after the eye doctor left). Also, it was a very big morning for us because she took in enough milk nursing to constitute her first full feed orally. She is moving full steam ahead and is weighing 4 pounds 5 ounces. They have even begun to mention starting to plan for home, which always makes her mom tear up.

Jonas is also doing very well, but taking his time. He had 18 hours on nasal cannula and it was determined that he was having to work very hard to breathe, so it would be better to go back to CPAP and give him some time to rest and recover and try again a bit later. He is doing a great job tolerating his feeds, sucking on his pacifier, and growing. Jonas's eye exam showed that he has level 2 retinopathy of prematurity--this is a condition of the eyes that can happen when preemies are on high levels of oxygen for long periods of time. Level 2 is basically a watch and see category. His eyes could heal and get better, or they could get worse, in which case he would need to have a procedure done. The good news it that it is possible his eyes can heal and if they don't there is a treatment. Jonas is weighing 4 pounds 6 ounces these days. We are enjoying his crib because it gives us a chance to interact with him a little more closely.

We continue to pray for healing of lungs, eyes and brains as we give thanks for how far they have come!

God bless,

Mari, Dan, Elsa and Jonas

Cribbage

Greetings.

For so long changes came ever so slowly. This past week, it has felt like Elsa and Jonas have taken several steps forward.

Elsa continues to enjoy the intermediate care unit and her new digs. Today, she was weened from her 1.5 liters of pressure on her nasal cannula setting to a 1/4 of a liter setting. The goal is to put her at the lower setting but increase her oxygen to get her to a place where her lungs are stable enough to go home on oxygen (if needed). I could go into a much longer description...although I don't really understand it all...but suffice to say this is a good move for her. She is also up to 37 ml per feed. This is almost comical when I think back to her first foray at feeding at 1 ml per hour.

Jonas is now the proud renter (he owns one at our house) of a crib! He moved into it an hour or so ago. Such a big boy now. He also tried nasal cannula for the first time today. While it is too soon to tell if he is ready for a permanent switch, I can tell you he looked pink and happy on it. It was very appropriate that one of the very first nurses that cared for our babies was there to roll in the crib for Jonas.

We feel blessed to have these reasons for celebration. We continue to pray for Jonas and Elsa to grow and be strong! Thank you for your continued prayers and thoughts. (Pictures: Mari & Jonas; Dan & Elsa; Elsa & Dan; Jonas & Mari; The New Crib)

God Bless,

Dan & Mari & Elsa & Jonas

Four Pounds!

Greetings,

Our little ones continue to grow. Elsa was 4 pounds today and Jonas was 4 lb 2 oz! We are so proud of them! Jonas wanted to let everybody know he made it to four pounds by holding up four fingers in the bottom picture. (Elsa is the top picture, the other two are Jonas. They are both in green outfits made by Grandma Jeanne because they are two peas in a pod!)

Both are working on holding steady with their temperatures so that they can graduate up to a crib. It sounds likely that it will happen for both of them within the next week. We are enjoying being able to hold them and interact with them a bit more. Although they are still supposed to be sleeping most of the day, they have been pretty alert during their evening care times lately which is fun. They continue to move up on their feeds and both are working on sucking their pacifiers during feeding times to begin making the connection between sucking and having a full belly. They will be 35 weeks (gestational age) tomorrow. We are told that between 35-36 weeks the nursing really begins to take off. We are hopeful this will be true, as getting the eating thing down can be especially hard for preemies and this needs to happen before they can come home.

Thank you for continuing to pray for our babies.
God bless,

Mari, Dan, Elsa and Jonas

Nearly ready for a crib...

Greetings.

Elsa and Jonas continue forward, day by day, with their gradual healing and growth. They are no longer micro-preemies and are starting to outgrow some of their outfits. A nurse mentioned a few days ago that she remembered when they were the smallest babies in the unit. No longer! They are nearly four pounds and aren't looking back!

Elsa has started to nurse...when she feels like it. Sometimes she is a little indifferent to the whole process. She has shown though that she can coordinate the breathing, sucking, and swallowing that is necessary. A big step for a preemie! She is still on her nasal cannula and doing well. The next landmark for her is a forthcoming move to a crib. The nurses are slowly weening her isolette temperature to see if she can maintain her temperature outside. Her big move could happen in a day or two.

Jonas has quite the reputation in the NICU. He can be cranky on occasion and loves to make his machinery beep. "That's just Jonas being Jonas," is how the nurses like to put it. He is doing well on CPAP and continue to grow and grow. His heart has been racing a bit these days but the doctors do not seem to be overtly concerned about this. Otherwise, Jonas is doing well.

We have got to hold both Elsa and Jonas quite a few times over the weekend. What a joy!

We continue to pray for their healing and comfort in the days and weeks ahead.

God Bless,

Elsa, Jonas, Dan, and Mari

10 Weeks!

Greetings,

I feel as if I can breathe a little easier now, and the beautiful sunshine outside today reminds us that spring is on the way and we will be able to bring our babies home relatively soon.

Elsa is doing great. She no longer wears her temperature probe--further preparation for a crib. She is getting 2 additional ml during her feeding time. Both Dan and I have been able to hold her after her afternoon and evening care times the past two days. It is nice to feel like we are getting more quality time with her.

Jonas is continuing to stay strong on CPAP. He also had an additional 2 ml in his feeding today. I held him "like a big boy" (cradled in my arms instead of against my chest) for the first time yesterday. Babies are so amazingly fascinating, even if they are only sleeping! It is so fun to just look at him. His hair is beginning to poke out of the sides of the CPAP headgear--he might need a haircut before he comes home! He is beginning to like his pacifier, just like his big sister.

We are ever thankful, grateful, and prayerful that they will continue their progress.

God bless,
Mari, Dan, Elsa and Jonas

From the NICU to the ICU...Elsa's journey to floor three

Greetings.
As the title line indicates, Elsa is now a proud member of floor three intermediate care nursery. We were astonished to hear that she was in fact ready to move up to the quieter confines of floor three. Mari was with her as she was wheeled up to her new home in the ICN. Quite exciting. She is on full-time nasal cannula, staggered feeding to simulate normal eating, and, gosh, just doing great. Elsa was able to be held several times today and the nurse indicated that they were starting the slow ween of temperature in the isolette to prepare her for a...crib! Wow! She weighed in at 1620 grams today.

Jonas is also having a good couple of days. He is still on CPAP and holding steady. The doctors may start weening him on CPAP gradually--much in the same way they did with Elsa last week. He is handling his continuous feed well and is quite a producer of full diapers. Jonas was also 1620 grams today (they must be twins!).

We pray for continued healing for both Elsa and Jonas. We pray that their bodies continue to heal and grow in the days and weeks ahead.

God Bless,
Dan & Mari & Jonas & Elsa

Jonas vs. CPAP...round three..my money is on Jonas!

Greetings. The changes are coming quick as Elsa and Jonas have reached thirty-four weeks gestational age.

Elsa is almost ready to begin trying to feed normally! She has been making sucking motions and using her pacifer this past week as practice. The doctors have switched her feedings from continuous to the full amount over the course of an hour. This prepares her for the more normal on demand feeding that she is getting ready for.

Jonas has received a second round of a low dose of steriods to help prepare him for CPAP. He received his first dose yesterday at noon and the impact was huge. He went from 45 breathes per minute by the ventilator to 20 bpm this morning. He received a 2ml dose of caffiene yesterday as well to help his brain to remember to breathe. He will be ready for his next attempt at CPAP sooner than later. It may be in the next 48 hours! Both babies are still in the three pound crew...they both are receiving a little extra addition to the milk to boost their caloric intake. Last check, Jonas was at 1610 grams and Elsa was hanging in at 1510. If memory serves, the four pound mark is at 1800 grams. Almost there!

We are praying for continued breathing, digesting (and bowel movements), and healing for Elsa and Jonas.

God Bless,

Dan & Mari & Elsa & Jonas

Two months, Nasal Canula, and Double Kanagroo

Greetings.
Quite a lot has happened over the past two days. Elsa and Jonas reached the two month milestone. They spent quite a bit hand(foot)crafting a card for us (see picture). Elsa and Jonas are both in the same room now...which is nice...they are about five feet from each other!

Elsa has been doing so well on her nasal canula that the doctor left orders for her to go full time on it. She is off of CPAP! To be honest, she hated the CPAP headgear so I think this is even better news for her than us:).

Mari and I held Jonas and Elsa at the same time yesterday...a double kangaroo! Quite a treat. Mari held Jonas while I held Elsa a few feet away. Of course, with two babies that are little furnances on us...we were watching each other for the tell tale sign of a snooze. I stole a few winks without Mari catching me. What a great valentines day!

Jonas is beginning the weening process for another attempt at CPAP. We are praying that his lungs and brain are ready for the promotion this time. We continue to pray for Elsa's growth and digestion.

God Bless,
Dan, Elsa, Jonas & Mari

Boy Bonding

Greetings,

Another great day. Another day that we got to hold both of our babies. Elsa was promoted to the same room as Jonas today so they get to be neighbors. It is so fun to have them be close together. It is also nice to be able to keep a closer watch on their needs and try to help meet them. For example, Elsa was a little fired up when she went back in her isolette after hanging out with mom for a few hours. She had all her limbs going and was mad. Because the kids are so close now, one of us could help with Jonas's care time and one could help console Elsa and we could still be together. Dan got to hold Jonas for the first time today. They talked sports and Jonas took a nap. Both babies are up to 10ml of milk an hour. Elsa has extra calories in her milk and Jonas has protein added to his milk. Jonas is still the weight champ coming in at 3 lb 7 oz today. Elsa is right behind at 3 lb 5 oz. Jonas is hanging out on his ventilator at about 29-32% oxygen. Elsa is holding strong on CPAP and even gets to wear the big girl oxygen (nasal cannula) during kangaroo care.

We are thrilled to be able to hold our babies more regularly now and give them love and comfort. It's good for us, too! Thanks for your thoughts, prayers, and caring.

God bless,

Mari, Dan, Elsa and Jonas

Dream Big

Greetings.

What an exciting week of changes, growing, and kangaroo-ing. Good weeks like this one are such a treasure! As I entered the new room that Jonas is in, I found Mari holding Jonas. Mari had been holding him for...four hours! Way to go Jonas. He was doing quite well and seemed content to stay there all night. We eventually did have to put him back in and Mari earned a well deserved lunch break.

At Elsa's bed the nurse asked if I was ready to hold Elsa. YOU BET! For an hour or so, I kangaroo'd Elsa. She gave me several inquisitive looks but otherwise took the opportunity to sleep. The nurse apologized that she had been unable to arrange for us to hold Elsa and Jonas at the same time. It was just too difficult with their beds in different rooms. I told her that she never had to apologize for dreaming big about our two kids and that the day will come soon enough when we can hold them both at the same time. The nurses are truly amazing.

We continue to pray for Elsa and Jonas to grow, breathe, eat, and go to the bathroom regularly.

God Bless,

Elsa, Jonas, Dan & Mari

Room Change

Greetings,

Walking into the NICU today I got another surprise...Jonas wasn't there. He had been moved to the adjoining room. As one nurse put it, "one step closer to the door." Elsa will soon be joining him in the next room over when there is space available for her. This room has the same set up and nurses, but there is a little less room between the isolettes, so it is for babies who are a little more stable. Can you believe it? After 8 1/2 weeks in the same room it is wonderful to be promoted to a room for babies who are a little more stable!

Elsa continues to do well on CPAP. She is breathing room air, or just a tiny bit of oxygen most of the time. She even has a pacifier now and was enjoying it briefly after her care time today. She is back to full feeds at 8 ml of milk an hour and weighed 1500 grams today (about 3 lb 4 oz). It is a little hard to see Elsa in her picture today admist the IV padding on her arm, the CPAP mask, and the green binkie, but she is in there!

Jonas is doing well on his vent, chowing down on 9 ml of milk an hour and he is proud to regain the weight title as he was 1510 grams today (3 lb 5 oz). Jonas's isolette was due for a change today so I got to kangaroo with him for about two hours. So much better than last week's attempt that only lasted about a minute because he was holding his breath.

Some people have asked when they might be coming home. Good question. All we can say is that typically preemies stay until around their full term due date, which for them would be April 1. Sometimes babies go home sooner, sometimes they need to stay longer. A lot depends on how their lungs are doing. Some babies do go home with oxygen or other medical aids such as sleep apnea monitors. We will just have to wait and see. It sure feels good to have some stable days with our babies.

God bless,

Mari, Dan, Elsa and Jonas

CPAP Surprise

Greetings,

Entering the hospital for care time each day, we typically go to Jonas's isolette first, since his care time comes first, and then make our way over to visit Elsa. On Saturday as I was visiting with Jonas and waiting for his care time, one of the nurses passed by and asked what I thought of Elsa's new hardware. I had no idea what she was talking about so I went over to take a look and was shocked to find Elsa on CPAP! Apparently she had decided it was time. She pulled her ventilator tube out herself, so the doctor decided to give her a try on CPAP and as of Sunday evening she is doing great. Her blood gases have been coming back with good results. When the doctor stopped by to chat with us he was laughing about the fact that they had been discussing that morning when to give her a try with CPAP and they had not come to a conclusion yet. She is a girl who knows what she wants and yesterday was her day. I'm not sure she is so happy about the new mask, but it must be a step up from the tube down your throat. I also had the opportunity to do some kangarooing with her tonight. She slept peacefully and even sucked her thumb a bit. It was just wonderful.

Jonas is doing a great job of holding steady on his ventilator, his feeds, and his digestion. He continues to grow and seems very peaceful when we visit him. Maybe he just needed his big sister to lead the way and show him how it's done with the CPAP. We know he will get there when his lungs and brain are ready.

It is amazing what a difference a couple of days can make. We continue to be thankful, hopeful, and prayerful.

God bless,

Mari, Dan, Elsa, and Jonas

It's a Victory

Greetings,

We are celebrating tonight and thinking that we have never been so thankful for a poop in all of our lives. After yet another suppository this afternoon, Elsa had a stool at her evening care. Yes! Her digestion of milk was much better as well after getting things moving. Although her parents were a bit worried, she has seemed quite unfazed by it all. She only gets upset when she is unswaddled for care time. Once we wrap her back up she is happily snoozing again. Elsa weighed in at 3 lb 4 oz today.

Jonas had a good try on CPAP last night, but after about four hours his blood gases showed that it was not the right time. He was reintubated and put back on the ventilator. He was doing well and resting comfortably today. We know that it will happen when the time is right and continue to pray for his lungs to heal and grow and his brain to develop so he remembers to breathe. Jonas is catching up to his sister in weight again, weighing in at 3 lb 2 oz today.

We are thankful for another day with our babies and we strive to keep our eyes on the big picture goal of bringing home our happy, healthy twins. Thank you for caring, supporting, and praying!

Mari, Dan, Elsa, and Jonas

Countdown for CPAP...one hour...GO JONAS!

Greetings.
Elsa and Jonas continue their slow and steady journey in the NICU.

In less than an hour Jonas will try round two on CPAP. His blood gases have continued to hold steady and he is ready and raring to go! We know he will give it his best effort and we are praying for him.

Elsa has had a couple of days of, to be honest, wonderful blood gases. She has been steadily weened down on her vent and she is now hanging out at 25bpm provided by the machine. This is the same rate that Jonas hung out at for a week while he prepared for CPAP. She is making great progress on her lungs currently. What we really are praying that she will do is...poop. Sorry to be so blunt but she hasn't gone in several days. We are hoping that overnight she does. The doctors have reduced the amount of milk that she is receiving and are going to give her a bit more time to see if she can do it. Otherwise, they will need to do further exams to figure out if there is blockage or other more severe problems going on. We have our fingers crossed.

We continue to pray for Jonas and Elsa. We will post tomorrow with an update on Jonas and CPAP, as well as, a diaper update on Elsa.

God Bless,
Dan & Mari & Jonas & Elsa

Step by step...forward!

Greetings.

We continue to pray that Elsa and Jonas will grow and heal under the watchful care of the nurses and doctors at the NICU. Elsa gave us a bit of a worry on Sunday but it has been three days now of good prognosis from the doctors. A G.I. specialist came and looked at her and felt pretty confident that she was most likely just having typical preemie issues with digestion. Sometimes preemies intestines aren't quite firing 100% of the time and cause a large residual. With several days of good indicators, the doctors are getting ready to restart her feedings in the next two days. This is wonderful news and we are hopeful that this goes smoothly. Even with all this commotion, Elsa has had a couple of days of really good blood gases. Keep on going sweetie!

Jonas is now a member of the three pound crew (T.P.C.). He had another steady day with good results on his feeding and his blood gases. If he holds steady we are going to give him another go without the ventilator on thursday! Our prayers are with him and we know he will give it his best effort.

Thank you for the continued prayers and support during these hectic times. Prayers of healing for Jonas and Elsa.

God Bless,

Dan & Mari & Elsa & Jonas

An update on Elsa

Greetings.

We rushed to the hospital this morning to see if there was any additional news on Elsa. When we arrived the doctor brought us in to his office. There he showed us the x-rays of Elsa's intestines. He explained that the x-ray showed her large intestine was a bit enlarged but it did not have the indicators of NEC. He indicated that there would be a follow-up x-ray at noon, six and on Monday morning to monitor. His early preliminary diagonosis was that she may have something obstructing or narrowing of the colon that is causing some backing up to occur. This was very good news as NEC is not good. At noon the x-ray came back and affirmed the doctor's diagnosis. They are not 100% certain that Elsa doesn't have NEC so they will continue to monitor and have already begun her antibiotics treatment. Her feeds are off and she is back on IV nutrition. With all that being said, she looked relaxed with a soft pinkish glow. The nurses give great hugs and we remain ever hopeful that this is a hiccup for Elsa. We will know more in the next 48 hours.

Jonas remains stable. He fought me with the strength of a 1000 lions while I tried to change his diaper. Good boy. He's a fighter.

We pray for continued healing for Jonas and Elsa's lungs, brain, and intestines.

Pictures (1. Jonas gettings some mouth care--imagine all the arms and legs moving in motion; 2. Elsa on saturday night before a mega diaper extravaganza; 3. Jonas on saturday chilling out after care; 4. Jonas after the diaper battle today; 5 & 6. Elsa today.

God Bless,

Dan & Mari & Jonas & Elsa

Prayers for healing for our Elsa

Greetings.
The NICU can change quick. The last few weeks we have had relatively stable times with Elsa and Jonas. This morning at 6:30am we received news that Elsa may require emergency surgery. The condition is an infection of the intestines that occurs with preemie babies. The normal bacteria that we all have floating around in there infects a weakened area. The doctors are worried that this may be occurring with her because of her swollen belly and high residual (left-over food in her stomach). They took an x-ray and saw lots of gas backing up. She did go to the bathroom while the doctor was examining her which is a potential good sign. We are in a holding pattern right now as they monitor the situation. Please pray for our Elsa and for healing of her intestines.

Jonas continues to keep on trucking. He has been stable on his food and breathing.

We continue to have hope and faith.

God Bless,
Mari & Dan & Jonas & Elsa