January 31, 2007

Post Surgery Update

I was on my way to work a little early today and before I even got there Greta called and told me that surgery for Niklas was scheduled for 10:00 a.m. I got to the U of M NICU at 9:00 and held Niklas for about an hour before his surgery. As soon as I picked him up he smiled at me as if to tell me that everything was going to be O.K. The surgery went great and he now has a tiny little reservoir underneath the skin of his scalp from which cerebral fluid can be drained. Over the next few weeks, this flow problem may resolve on its own. If it does not, they will install a permanent device. After the surgery Niklas looked better than he ever has, really! He was very alert, totally content and looked fantastic. If all goes well, the band could be reunited as soon as Friday. In other good news, Lukas is going to attempt to breast feed tomorrow and they are considering co-bedding him with Gabbie in the open air crib. It was an exhausting day today, especially for Greta who spent time in 2 different NICUs, but we both feel a sense of relief.

January 30, 2007

The Trio Separated

Today Niklas was transferred to UM, his surgery will be either tomorrow or Thursday morning. Although Greta and I are very confident that everything will go well, it is a little sad to think that Niklas is separated from his brother and sister and all alone. I did not go to the NICU tonight as I needed to get home to catch up on some things (snowy driveway, trash, laundry), and I needed a little break as well. We are really praying that this surgery is uneventful, and that there are no complications after the fact. Now for the good news. It appears that Gabbie is approaching 4lbs and Lukas is getting close to 3lbs. Niklas was not weighed today, but we are assuming he is equal to or greater than Gabbie in size. Every time I see the little guys they look a little "porkier" to me. I can't wait to see them all tomorrow. Also, the head scans for Lukas and Gabbie came back perfect which was a huge relief.

January 29, 2007

Taking The Good With The Bad


First, all of the good news. Gabbie moved into an open air crib today and did great with it. She is nursing twice a day, taking 34cc's of milk every 3 hours and demanding more. Niklas also went to breast twice today. Lukas is on full time cannula, finally getting rid of his C-PAP. If it weren't for Niklas's brain scan, it would seem everything is going perfectly. However, today's scan showed a .5cm increase in ventricle size. Sometime on Thursday Niklas will have surgery to insert a reservoir to manage his post-hemorrhagic hydrocephalus. This is a relatively routine procedure that will allow the doctors to "tap" the fluid every few days. Eventually, the fluid buildup could resolve on its own, but if it does not, he will have a permanant shunt installed to manage it. Both Greta and I have been prepared for this procedure for a while, but we both hoped things would resolve before it got to this point. Just after I got the news today, a highschool classmate emailed me and told me how her son went through the same procedure 2 1/2 years ago and is doing great today. It's always great to connect with people who are going through the same thing, and it really helped me to digest the news. In the picture you can see Gabbie's induction into the 3 lb club. Yes they spelled "Myers" wrong and no, her name is not hyphenated, but it's still a great achievement.

January 26, 2007

Happy (Belated) 5 Week Birthday!



It's been 5 weeks since these little guys have entered the world, and they have been such little fighters making such wonderful progress. Today was another good day, Niklas's brain scan was unchanged and it was also his first day breast feeding. Lukas spent 6 hours off of his C-PAP and Gabbie had a stable day. I got to do Kangaroo Care with Niklas for about an hour tonight. What made me even happier was the temper tantrum performed by Niklas . He did the same routine of pulling out his cannula while screaming everytime I tried to put it in. However, all it took was for me to place my hands over him to make him go right to sleep. Greta, of course, spent most of the day in the NICU and in addition to the daily routine the daily reading selections were....
"Are You My Mother?" and "Cat in The Hat". It shouldn't be too hard to figure out who is in one of the pictures, the other is of Niklas. Also, check out the link on the side of the blog to our flickr photos. You need a Yahoo account to view them, but there are a bunch there.

January 25, 2007

Personalities






I would like to take a minute to mention how much Greta actually does with the babies on a daily basis. She usually gets to the NICU in the late morning and stays there often until 7, 8 or even 9 o'clock at night (close to 12 hours per day). She kangaroos each of the kids for a couple of hours each and breast feeds Gabbie twice. In between all of this she is changing their diapers, taking their temperatures, and constantly pumping milk for their feedings. I am so lucky to have such a great wife who actually loves doing all of this. When she gets home, she pumps more milk and then sets the alarm clock to wake up every 2 hours and pump some more.

When I arrived tonight, Greta was doing kangaroo with Niklas (2 of the pictures above), and the kid looks great. I sat down next to her and touched his face and he smiled! In fact, he smiled about 4 or 5 times which was so fantastic to see. He was so content, that his oxygen fell a few times because he was almost too relaxed.

Gabbie, on the other hand, was throwing a complete tantrum when I got there. She very deliberately pulled out her feeding tube while I was looking at her. She proceeded to pull out her oxygen. I put it back in. She screamed and yanked it out again. I put it back in, she yanked it out. I just placed my hands on the top of her and sort of restrained her, which caused her to instantly go to sleep. Somebody likes attention. Part of me wants her to stop doing that stuff, but another part of me loves it! Lukas was deep in thought tonight. Wide awake, but perfectly content just staring around. He spent over 6 hours straight on his cannula tonight, so he is making good progress. Everybody had a good day today. The other picture is of me holding Gabbie.

January 24, 2007

Still Waiting

Today was a good day for everybody. Lukas is spending a little bit more time off of the C-PAP, everyone is eating a little bit more, and things were relatively quiet. Today, the Doctors from the St. Joseph NICU delivered the film of Niklas's brain scan to the neurosurgeon at UM, and guess what? He decided to wait. We have another scan on Friday, with the same rules. For those who speak my language, here is how I see it.

while (!ready_to_go_home  &&   !condition_worse) {
   scan_brain();
   Thread.sleep(3_days);
}

January 23, 2007

Day 34


After the last post, could we really expect anything more than ambiguity from Niklas's test today? Of course not. If the test showed increased ventricle size, then we would have had the reservoir put in. If the test showed improvement we were told we would wait. If, however, the test was unchanged then it would all be up in the air. His test was unchanged, so there is no urgency right now and UM will probably not look at the film until tomorrow. Chances are, they will decide to wait, but we are not sure at this point. It's as if the kid is saying "wait, not quite yet, just a few more minutes, I have another trick up my sleeve". He may, or he may not. Greta and I are prepared either way and honestly I am not really worried too much about the outcome. Niklas is under close supervision and in good hands. Greta did Kangaroo Care with all 3 babies today. I held Gabbie for about an hour, and she also breast fed twice. All in all, this has been a good string of 3 or 4 days and we both hope it continues.

January 21, 2007

Happy 1 Month Birthday


I had 2 quick trips to the NICU this weekend, the one on Friday and one today. I am not sticking around as I still have something (malaria I think) that I don't want to pass on to the triplets. Yesterday Niklas pulled his cannula out of his nose, as he likes to do, but no one noticed since his oxygen levels never alarmed. They decided to just let him go without it and see how it goes. He has been without help on his oxygen for almost 2 days now and is doing great. This guy continues to surprise everyone. Gabbie is still doing great with her breast feeding and Lukas is just hanging in there, spending most of his time on C-PAP but doing well with his time on the cannula. It looks like the worst of the stomach infection is done with Lukas, as his feedings have resumed (although a little less than they were). Here is a picture of Gabbie in her civvies which make her look not so preemie like.

January 19, 2007

The Conundrum That Is Niklas

From day one, Niklas has been a mystery. It's actually something I like about him, unpredictability means there lies within the ability to beat the odds. Niklas was the only one who came out of the womb crying, which is a great sign. He had the mysterious PIE (lung condition) that would just not go away, but suddenly did. And the past week has been no exception. Earlier in the week, his brain scan showed an increase in ventricle size after seemingly improving on the previous scan. As a result, serial lumbar punctures were administered in hopes of relieving the pressure. Today we were told that they found Group B Strep present in his spinal fluid. This is a very very serious form of meningitis. Greta and I were at our wits end. But here's the thing, the whole time the kid's vitals were fantastic. He was down to room air on his cannula (oxygen turned all the way down), his temperature was fine, he was eating well and exhibiting no signs of discomfort. In other words, he was showing no signs of infection! In addition, this infection was not initially present in the fluid, it sort of grew in a "petrie dish" over the course of a couple of days. So, they are not totally sure if the infection was there or not, but irregardless they started clobbering it with antibiotics before there was even an increase in white blood cells. So, there is part of me that thinks that this increase in ventricle size may have really been a blessing in disguise allowing the doctors to find something that they otherwise would not have found until symptoms started to appear. Another scan is going to be performed on Tuesday. If it is the same or a little better we will continue to watch. If it is worse, it may be time for a reservoir to be used to drain some additional fluid.

Today was a good day for the other two. We were told yesterday that Lukas may have a stomach infection, but X-Rays today showed improvements and he is going to start his feedings again tonight or tomorrow. Also, Gabbie breastfed for the first time today and knew exactly what to do! I wasn't there to see it, but Greta said it was amazing. She really is the show off of the group, especially since a 32.5 weeker should not even know how to suck or swallow yet.

January 17, 2007

Another Setback For Niklas

Today was another day working at home for me, since I don't want my germs anywhere near the babies. Greta and I were having our morning coffee when the home phone rang (which is broken so we can't answer it) and one of the doctors left a message on our machine..."Everything is fine, just give us a call". Well, everything wasn't fine. Niklas had another brain scan today and his ventricles actually increased 1cm in size since the last scan. Apparently this is enough to require intervention, so they are going to draw spinal fluid from his lower back in hopes that the levels in his ventricles recede. This will be repeated tomorrow and Friday, followed by another scan. If this treatment is unsucessful, the next step is a temporary reservoir that will drain the fluid from the "soft spot" in his head. If that is unsuccessful, then a shunt could be required. I don't really want to start thinking about all of the "what ifs", but its hard not to since all of this is so unknown. So, we need to rally up the prayer support again for better results on Friday.

January 16, 2007

Slow and Steady

I haven't posted in a few days, but no news is definitely good news. I am a little bummed because today will be the second day that I haven't visited the NICU. I started feeling a little bit funny yesterday and didn't want to visit if I was coming down with something. Behold, today I am sick as a dog, and am getting all of my updates through Greta. At this point, Niklas and Gabbie are on full time cannula and Lukas is still going back and forth between cannula and C-PAP. The other day when we were visiting Niklas had a drop in his body temperature and we started to get that feeling as if we were about to go down another hill on the rollercoaster, but he recovered nicely. Hopefully I will have some more pictures here soon, I can't believe this whole NICU adventure is approaching the one month mark. We are starting to think that there is a light at of the end of the tunnel here. On Sunday night my mom came down and helped us finish the nursery, and its really starting to feel like it will be full soon.

January 12, 2007

Happy (Belated) 3 Week Birthday

Yesterday was the three week mark for the triplets, which puts them at 31 weeks and 4 days gestationally. Everyone is making pretty good progress, and all are spending more and more time doing the Kangaroo Care. Today we got the results of Niklas's brain scan and the ventricles showed either a 1mm decrease in size or no change. In either case that is good, all we were hoping for was no increase in size. Hopefully we will start to see things healing on the next X-Ray. Tonight I went up to the NICU after work and got to do Kangaroo with Lukas for almost 2 hours, and for about half of it I slept right along with him.

January 10, 2007

Go Niklas!


Today when I arrived at the NICU, Greta had already done Kangaroo Care with both Lukas and Gabbie for about 2 hours each, so it was my turn. I got to hold Niklas tonight, and not only that, he was on nasal cannula the whole time. I held him for an hour and then they kept him on the cannula for another hour or so. He was at about 29% oxygen which is getting pretty close to room air. Looks like all they prayers for Niklas have been having a positive effect! Gabbie is going to have her lipids taken away tomorrow. Lipids are fats that are given to premies through the I.V. and since she is eating so well they are taking them away. I must say, there is nothing more gratifying than disappearing equipment and lines. Lukas had an uneventful day, which is also a wonderful thing. I know we have a lot more bumps in this road, but it is sure nice to celebrate the progress all 3 have made over the past week. The picture here is of Niklas, and its not really a good one as his color really doesn't look like that. Also, he had his eyes open staring at me for about 10 minutes or so tonight.

January 9, 2007

A Good Day For Niklas

When I arrived at the NICU tonight, I was surpised to see Niklas on C-PAP doing Kangaroo Care with Greta which lasted almost 2 hours. He has made such awesome progress over the past week. His breathing has been excellent and his X-Rays were spectacular. Gabbie is now on the nasal cannula 24 hours a day, while Lukas is up to about 50/50. Gabbie is also going up on her food intake as well, she was at 9cc this morning and will be on 12cc tomorrow. It's been nice to have such a good week after having such a down one. Not much else to say today except that we are both exhausted and are going to sleep early tonight. Thanks again for all of the support we have received through this blog, and all the comments from everyone we didn't even know were reading it.

January 8, 2007

Day 19





Overall, today was a good day. Starting on Saturday night, Niklas was started on a round steroids to hasten his lung development and to give him relief from his PIE (respiratory condition). He has been doing very well with his breathing, blood gasses etc. He moved from the oscillating ventilator to the conventional ventilator and his x-rays are looking excellent. The effects of the steriods are temporary, so we are really praying that he doesn't make backwards progress (at least not too much) when the effects wear off. Niklas also received another brain scan today, and the way that I understand it there was a little bit more swelling, but not enough to warrant an intervention. We were told to expect this on the next few scans before things start to improve. It's really hard to wait for the next scan, and then not see improvement, but that is the way these things work.

Lukas and Gabbie have been progressing very nicely, they are spending more and more time on the nasal cannula and are tolerating it well. All 3 of the babies are eating, with Gabbie tolerating the most food at this point. On Sunday, we got to wrap Lukas and Gabbie in the same blanket and hold them for well over an hour. I think the roller coaster adage really still applies here, Greta and I are extremely happy with all of the progress of the past few days, but its hard to get excited when we have such a long way to go.

January 5, 2007

Day 15

First, I want to say how grateful Greta and I are for all of the support and visitors that we have received on this blog. We are getting comments from people we haven't even met, and that is very cool. It is the highlight of our evening to come home and read all of the comments. The blog has been a really great tool for keeping everyone informed and it has spared us both the exhaustion of having to repeat our story over and over.

So, today was another relatively uneventful 24 hours, which is good. We were told today that Niklas's PIE (lung condition) is showing some small signs of improvement. This one may take a little time to clear up. He also had another brain scan today and after our conversation with the doctor I am feeling much better about this. There was no further bleeding in Niklas's brain which is good. On the other hand, the ventricles in his brain have enlarged a little bit more (1mm). In a nutshell, here is what is happening. The brain produces cerebral fluid all of the time which washes over the brain and is recycled. Niklas had small bleed in the beginning that was pretty low grade and not too much of a concern. Commonly, when these bleeds heal, the clots can restrict the draining of the fluid that is produced and this causes the ventricles to expand. In the case of Niklas, this blockage is very small, evidenced by the slow rate of expansion. He has another scan on Monday and they are hoping that things either stay the same or start clearing up. Nonetheless, since this is not a rapid collection of fluid, there is no need to get alarmed yet. If the ventricles continue their expansion, they will drain the fluid from his lower back until the clot heals up. At this point I am very relieved about the results of this scan and feel pretty good that Niklas is going to get past this one just fine.

Also, Gabbie and I had a real moment today. I was doing Kangaroo Care with her when she started moving, strecthing, and wiggling around until she could turn her head and look at me. She had her eyes wide open for about 20 minutes and we both just stared at each other. Her eyes were so big and beautiful, and she was so alert. I wish Greta had been in the room to take a picture. Soon after, she snuggled in and went to sleep again. Both Lukas and Gabbie are making good strides with their time on Nasal Cannula and both did well with feedings today. I still can't help but feel like we are still on a rollercoaster, I just hope we have gone over the biggest of the hills. Oh, and last night, all 3 kids were blessed by one of the hostpital's chaplains. She was also amazed by the sight of these three little miracles.

January 4, 2007

Happy 2 Week Birthday!







It's already been 2 weeks since these little guys have been born, and today was another pretty good day. When I arrived at the NICU, there was a little sign on the side of Lukas's isolette that read "Welcome Lukas Myers to the 2lb club" and had stickers all over it like it was something that he brought home from school. That means this guy has gained a little over 1/4 lb, which in relationship to his total size is a pretty nice chunk considering he lost weight initially. Niklas had another day of status quo, and although we would like to see some improvement, holding steady is not too bad. Also, Gabbie and Lukas each spent some time off of the C-PAP and on nasal cannula. Nasal cannula is oxygen through the plastic tube with prongs that go in the nose. It is the final step before they are on regular room air. This step isn't done at once, they will gradually spend more and more time off of the C-PAP. Niklas is still on the oscillator, and is finally comfortable and has stopped trying to fight it. His chest tube also came out tonight since his nemothorax has healed up. His lungs still have a ways to go to heal, and its not going to happen overnight. Greta got to do Kangaroo Care with Lukas and Gabbie, and after work today I also got to take a turn with Gabbie. It really is such an awesome feeling and takes the stress of all of this away. The top picture is of our little fighter Niklas, finally asleep and peaceful. The middle picutre is of Lukas in a weird sleeping position. He was really playing with his hands before this and looked like he was figuring out how his fingers work. The bottom one is of Greta and Gabbie doing Kangaroo Care.






January 3, 2007

A Better Day

Niklas made a slight improvement over yesterday, and at this point a slight improvement is a welcomed change. Lukas and Gabbie were pretty much unchanged, which is also completely fine by me. It's also refreshing to get perspectives from different doctors, as they all have different personalities. While I was up at the NICU tonight, I got to see both Lukas and Gabbie throw temper tantrums, it was great so see them so mad. Hearing both babies cry was like music to my ears tonight, but I am sure my opinion will change after they come home. Also, since Niklas is on the oscillator, they have to sedate him so he doesn't breathe over it. I noticed tonight that he is a very hard baby to sedate, the nurse very much agreed. This confirmed my belief that this kid has a lot of fight in him. I am a little tired at this point, so I am very satisfied writing a short blog entry. Thanks for all of the comments on the blog, they are much appreciated.

January 2, 2007

Another Tough Day For Niklas

Niklas had another rough day today. His lungs stayed about the same, which is better than backwards progress. I will say that this guy is a fighter, his blood gasses and oxygenation were so good today, that if he didn't have lung problems he would be on room air with little or no help. The nurses were actually joking about how good his lungs are working, despite the injuries that they have sustained. The one piece of bad news regarding Niklas is that he now has a Level II IVH on both sides of the brain and the original side is seeing a little bit of swelling in the ventricles. It is still nothing too bad as long as it doesn't get much worse, and even if it does get worse many kids end up being just fine. Its just a very unknown part of the body to be dealing with. I am still pretty confident that he is going to pull out of this, its just discouraging to see him have so much trouble while his brother and sister are doing so well. I never thought that I would know so much about neonatal care. It really makes me glad I am a computer programmer. Computers are predictable, there is always a root cause for problems, problems are usually fixable.

On another good note Gabbie and Lukas are doing very very well. Their oxygen requirements keep going down and they are eating and pooping like champions. Greta got to do "Kangaroo Care" with both of them today which is where the baby lays skin to skin on your chest for about an hour or so. I have got to do this a couple of times, and I must admit that it really makes all of this worth it. Greta and I are both doing pretty well with this, as she gets to go interact with the babies during the day, and I get to lose myself being a geek at work. Thanks again to everyone for all of the support!

January 1, 2007

The Roller Coaster Begins

Our first week with our 28 week triplets seemed to go so well, and for the most part I think it still is. On Friday, however things started to get a little bit nerve wracking. First, we were told that Niklas has a Level II IVH (Intraventricular Hemorrhage) which is essentially a brain bleed. The good news is that most Level IIs clear themselves up with no problems, they will do a follow up next week to make sure that everything is okay with it. Saturday was a relatively calm day, and everyone made a little bit of improvement, Niklas and Lukas were both fed breastmilk through their feeding tubes for the first time and they both tolerated it well. Sunday, things got scary again when we were told that Niklas has developed pulmonary interstitial emphysema. The way that I understand this condition is that one of his lungs doesn't release all of the air, so with each inhalation the lungs progressively expand. He was put back on the ventilator and they attempted to deliver less air to the side that was over inflated. Throughout the day, Niklas's ventilator requirements kept rising, so to avoid further lung injury he was placed on the oscillating ventilator once again.

Sunday, we got to the NICU around noon, and started asking the doctor some questions. She described his condition as "critically ill" which really rattled Greta and I. We anxiously awaited his next chest X-Ray at 2:00 and blood gas test at 3:00. The doctor told us that she did see some improvement in the last X-Ray and was hoping to see more with this one. The 2:00 X-Ray came back showing much improvement and the blood gas test was excellent. They were able to move Niklas down a couple of settings on his ventilator. We felt a sense of relief as we left the hospital and went home to get some rest.

Around 10:00 p.m. we received another call from the NICU, apparently Niklas had another air leak in his other lung and they had to put a chest tube back in. The doctor on the phone seemed to think that he was doing well, but honestly its hard to interpret news from these different doctors who all have different personalities. Please pray that Niklas starts to make some progress and gets back on track making progress with his brother and sister.