Earmuffs and a wash

Dane had a good day today. He's still sleeping a lot and hasn't been gaining much weight (he had gained a lot of weight after taking the indomethacin for the PDA which had the side effect of temporarily shutting his kidneys off, making him retain a lot of water), but otherwise he's doing great. He is tolerating his tube feeds and is now up to 17mL / 3 hours. They were maybe going to try to give him some of his feeds via bottle today (which would be really exciting!) but decided to hold off until either later tonight or tomorrow because he was breathing a bit fast tonight. Why was he breathing fast? Because his mom and I gave him a washcloth bath in his isolet tonight. After finishing, we were pretty sure that his hair looked better before being washed, but oh well. :) At least we knew he was cleaner. He really is a good kid (at least so far). While we were moving him around and washing him, he only got annoyed at us once.

During the day today, while I was at school, Larissa hung out with Dane. The CDH NICU has been undergoing some renovations for the last several weeks/months, and today was one of the louder construction days. All the babies in the NICU got to wear little earmuffs today, but really they just were foam ear shells that stuck to the side of his head. We think he looked like a little air-traffic controller. Dane's first dress-up outfit? Knowing his parents, we are sure that he will have many more costumes in his future. :)

Visiting?

We've heard from a ton of people that they've been keeping up on Dane's progress through the blog, so we thought it'd be fun know who's been checking our babe out! Feel free to leave a comment letting us know what you think:)

Good News :)

We just heard back from the NICU and Dane's PDA has shrunk somewhat. 3 days ago it was classified as "moderate to large" and now they are classifying it as "small to moderate." The plan will be finalized tomorrow with this week's main NICU physician, but the plan will likely be to do nothing and repeat the echocardiogram in another ~3 days to see if it continues to shrink. If the PDA continues to shrink, they'll probably continue to take repeated echocardiograms to monitor its progress. If the PDA either 1) starts to grow larger or 2) starts affecting Dane clinically, then they would consider moving forward with either medical or surgical treatment. But the physician essentially said that he didn't want to do anything at this time because he thought that Dane was doing so well. So that's good news! (Even given the fact that we would really love to just have this PDA issue be done, dealt-with, and behind us....still great to know it is improving.)

A couple new photos of our cutie:










Dane snuggled in his blankets. Smiling. Looks like the tube going through his nose into his stomach isn't bothering him too bad. Notice the really cute giraffe blanket that he is snuggled up with (thanks Annie and Dustin!)

















Dane has gotten in the habit of shaking his hands above his head. We take it as his sign of saying I am DANE!
















Dane, winding up for a really big sneeze. Even sneezing, we find him cute. :)











And our favorite of today's photos... Dane in his little preemie-sized onsie (so it fits!) just relaxing in his bed. He was very active today, kicking his legs around and reaching around with his arms. (You can also still see the tube in his nose and the PICC line in his left arm.)

I'm a machine

So, obviously, Mark and I had a less-than-normal experience as far as Dane's arrival into our lives; however, I also realized yesterday that my experiences with pregnancy overall were not normal. Or at least, they're not the experiences that you hear about everyday. Hence, I thought I'd recount some of the craziness that brought us to the point we're at now.

I started out with a super easy first and second trimester, no nausea, no extreme fatigue, an ability to exercise at a normal intensity, even doing a Turbo Kick class until my 26th week. However, about 2 months before we met Dane, I started to swell heavily, at first just in my feet, then into my ankles and hands. It was pretty painful at night, and included things like an intense itch at night, enough to keep me awake despite steroid cream to kill the itch. It made simple things like walking up and down stairs and exercising nearly impossible. For someone who was really active before, it was really difficult to realize that I needed to stop most activities and do a lot of hanging out on the couch. I went through those months feeling unsure of everything, unsure if I could handle being pregnant or even a mom. It made me feel weak and helpless; thankfully, Mark was amazing at reminding me of it's temporal nature and also that he loved me no matter how many times I had to ask him to help me put my socks on or whether I was wearing compression stockings in "neutral beige". For the baby shower thrown by our moms, I had to buy a new pair of maternity pants because I was so swollen, even my original pairs of maternity pants no longer fit. I'd been wearing slippers to work for weeks...not a good thing. I had been mentioning the swelling to my OBs at each appointment, but hadn't been...well...pushy enough to get better answers about how to combat it or what it could be caused by (we eventually found out, a couple hours before Dane was born, that it was preeclampsia). If during pregnancy, you ever feel like things are out of control, make sure to get answers that satisfy you. Push until you feel like you can live with the results. For me, I don't know if the preeclampsia could have been managed better, or if Dane would have waited longer to come if I'd gotten better answers.

Since it happened how it did, I ended up losing an insane 30 lbs in the 4 days after the pregnancy, with 4 of those being Dane, and about 26 of water weight. I still hardly recognize myself, but am so thankful to fit back into my normal clothes and shoes already. My blood pressure, also affected by the preeclampsia, may take up to 6 weeks, even on two medicines, to get back to normal. Crazy how much the body's affected by hormones!

During the last week, I've also started pumping to make breastmilk for our little guy, as it's the healthiest option for preemies, especially. In the first couple days, I realized that I again hadn't gotten the greatest answers about what to expect or how to do it, and was pumping for approximately 6 hours a day, making almost twice as much as the normal first time mom...that's just not feasible long term! So, after learning a lesson or two about getting answers from the pregnancy, I talked to some great lactation specialists at the hospital. I learned some specific things about how to control how much/how long I was pumping and how to deal with my physical responses to this new process. So, in the meantime, we have a stockpile of breastmilk that may last Dane (at his current feeding amounts) until he's 18, but I'm now at least capable of controlling how much it's happening, instead of feeling like I'm just a soda fountain with one flavor (thanks for that visual, B:)) Bottom line, when you have questions about your health, if you feel something isn't right, or you're not satisfied with the answers you're being given, keep seeking more information until you are satisfied with it.

life is good, despite the fact that it's snowing in April...

Today was a really good day. This morning, Grandma and Grandpa Anderson drove down from Madison to see Dane (and his parents). We went to church at Harvest which had a really good sermon on accountability and how we need to share our trials and triumphs with the people around us (you can listen to it online if you wanted). While listening to it, I thought about this blog, and how we are able to share all of the things going on in our 3 lives. Maybe you find it informative, maybe it helps you remember things you or people you know have gone through, maybe it will help you if you go through similar things in the future. We also appreciate the calls and emails we've received from people in our lives who have already gone through similar situations in the past - it is such a blessing to hear that babies have been in Dane's situation before and ended up being normal and healthy.

After church, we went out to breakfast at Egglectic Cafe in downtown Wheaton. It is always awesome. I have yet to order something there that doesn't taste great. And food always tastes better when Larissa and I are not paying for it. It is fun to go there with my parents, because they used to take me there on weekends when they could come visit for swim meets during college.

Once we had finished a great lunch, we went to the NICU and introduced Dane to his Anderson grandparents - they'd seen him after the delivery, but hadn't been able to hold him until today. They also came bearing gifts! They brought fresh fruit, juice, some dry munchy-foods and some frozen food. Awesome. They also brought a the rest of the baby stuff we left at their house after the baby shower (thanks everyone for all the gifts! your thank-you cards are on the way...we never dreamed we would be needing all of those things so soon!) and some cute clothes that mom and grandma bought for Dane. He has a little ways to go to fit into them, (He has been wearing some newborn clothes in his isolet here at the NICU but the groin snaps sit all the way at his ankles...) but he's doing well and will be bigger by the time he finally gets to come home.

We have also had both sets of grandparents offer to help with some babysitting once Dane is home and Larissa goes back to work. Especially while he is so small, it would feel so much better to leave him with family. We'll see how everything works out, but that would be a huge relief. (Not to mention the fact that we are finding that child care costs ~$300/week around us. That seems really steep but we guess it isn't surprising to people who know about that kind of thing.)

Sunday night we were blessed to be able to talk to Aunt Bethany again on Skype, all the way from Brazil! It was great to catch up and be able to have her see Dane in real time. The wonders of modern technology....

Well, we've told you plenty about how we, the parents, are doing. Dane is doing very well, too. Yesterday morning the NICU moved the feeding tube that goes to his stomach from going through his mouth to going through his nose, instead. This made him seem more comfortable and let us see his chin finally! He has another echocardiogram scheduled for tomorrow that will examine if any progress was made in closing his PDA with the indomethacin last week (or if it has closed any on its own). Pending the results of that (which we will hopefully have tomorrow afternoon), the neonatologist on service this next week will then decide how he would like to proceed. He told us today there are really 2 options: 1) repeat trial of indomethacin (maybe with a lower dose due to the trouble it caused with Dane's kidneys and him retaining water) or 2) the surgical ligation. We'll see what they want to do. They seem to both have their risks and I almost prefer the surgery because it would be a difinitive once-and-done fix. But I'm not the NICU doctor, so we'll see what he says - maybe tomorrow.

Dane also has resumed his tube feedings...they were holding his feeds for several days after the indomethacin because after the dosing they had noted some blood in his stomach, possibly due to some minor ulceration due to the medication. After several days of letting him heal, just to be safe, they resumed the tube feedings yesterday. Initially he was receiving 5mL of breast milk every 3 hours. Because he was doing so well and not having any residual in his stomach prior to the next feedings, he was increased to 10mL every 3 hours today and has been tolerating them very well.

On a side note, as we spend more time with Dane, he really looks like he is dreaming sometimes. While he sleeps, he will twitch and move his little head around or run with his legs...what exactly does a newborn dream about? He doesn't have almost any sensory experiences...he must just be dreaming about being warm and snug and having a full stomach. What else is there for a newborn? He's living a pretty good life right now, even though he isn't home with his parents yet.

The many faces of Dane

Dane is starting to show lots of little expressions. While Mark was at work today, I was able to get some fun photos of his faces. For example:

Giving a big grin...

Giving a little wink...

Or scrunching his eyes and looking slightly annoyed (he gives this face whenever we turn the lights on in his NICU room)...

Or just looking content with his eyes cracked open, looking at who is holding him.

We're being reminded every day how thankful we are that we live so close to the hospital. I was able to go over and hang out with our little guy for almost three hours. My blood pressure was still pretty screwed up, and so following an appt. on Thursday, I was put on a second BP medicine. I was on a beta blocker called labetalol; now in addition, I've added nifedipine (a calcium channel blocker that works by causing vasodilation, or making all my veins more open, and decreasing the force of contraction of the heart. Both of these effects work to lower my blood pressure). Today was my second day on it, and I woke up with a splitting headache. Mark was at work, and while I was showering I almost blacked out. Apparently, the combo of meds worked so well that my blood pressure dropped too low...it's so weird after being so healthy all my life for my body to be unable to respond normally. All this just takes some getting used to - our doctor says that it shouldn't take more than 6 weeks for things to start improving, but that seems like such a long time not to be able to do normal stuff or prep stuff for bringing Dane home. I would love to just take a walk outside! It makes me realize how much I was taking for granted; I even miss being able to just vacuum and clean:) Really, though, hanging out with Dane makes everything seem doable lately - we are SO excited for him to keep growing so we can bring him home!

so is that good or bad?

Sometimes I wish they would just wait to tell us things until they had a clue...We are still waiting to hear back with all of the results from some of Dane's blood tests. After first being told that Dane probably has adrenal insufficiency, now today they said his cortisol levels look good and he probably doesn't have any problems with his adrenal glands. They might know more tomorrow, but most of the most helpful blood tests won't be back for about a week still. Waiting is hard.

On another note, Larissa and I are still pretty tired and have a bit of a cold. Larissa caught the cold in the hospital while not sleeping well at night. She was then nice enough to share it with me. I think we're both over the hump and getting better, but its hard to heal when we're stressed and overtired. One thing that helps is free food. Today, we were able to cook up a frozen lasagna that Larissa's parents made for us when they came to visit.


Today's photo is the first photo we got of Dane with both eyes open. I think he looks a bit annoyed at the camera being in his face...