Thursday, March 29, 2012

Two months later

Here  it is, two months later, and at the behest of many out of state friends and family, I am going to update everyone with the latest on little Dane. First of all, let me start out by saying he is doing well.  We have been to every specialist and doctor known to mankind, and like I told a friend earlier today, nothing earth shattering has been revealed, although a rather large part of me needs to add *yet*.  So far, we have a small left ventricular septal defect, which means his left ventrical pumps at 50% efficiency instead of the 55-60% efficiency for babies his age, his head is smaller than normal for his age, but let it be said they are not adjusting for prematurity and it looks completely normal, he still doesn't have a completely coordinated suck/swallow reflex but that doesn't stop him from downing his bottles, and he is being tested for pituitary issues because, oh yeah, he has a mid-line abnormality in his brain that he may/may not grow out of by his first year.  It's a lot.  Too much in fact.  I think when you have 12 doctors appointments in one month, that is asking a lot. 
Other than going through his whole body with a fine tooth comb, we have been happy with our little man.  We switched pediatricians because we wanted him to be in the same medical system as his specialists, and this new one is amazing.  She has the ability to discuss scary possibilities in a non-scary manner, unlike my previous pediatrician that I still love and send Claire to, just not Dane.  He is holding his head up now really well, he smiles and gurgles at you, he just started splashing his fat little legs in his baby tub, what Claire likes to call his "swimming pool".  He is warm and snuggly and loves to be held to the point that you can't put him down, but I still blame Dawn for that, whom we still go see from time to time.  Stephanie, his other NICU nurse is still in our lives too, and we are thankful for them. 
As for the parents, we are dealing, and its a little easier to breathe now.  Andrew is handling the situation and anything that comes up like a champ, his favorite toast is, "To Dane, no matter what".  That being said, there are some definite changes from all of this.  I find that I need more routine and organization now than I used to, and I like to stay home a lot more than before.  Chalk it up to energy being put to the baby that was formerly able to be put towards outward things, as well as more uncertainty and scariness sometimes.  Well, a lot of times.  I also love my friends a whole lot more if that were possible, even though I show it less now.  I am not nearly as light-hearted and fun as I used to be and have become a lot more serious.  I would say my fun quotient right now is zero, possibly in the negatives.  So it is nice when people still call and want to come around or go and do things, and I appreciate when people do that because I don't have the energy to reach out and be the friend I used to be.  I also have written off people that drain me or make my life harder.  I'm just not dealing with that, and to be honest, no one should.  I find that I enjoy reading about friends that are doing cool things with their time, like renovating houses (Jami Dow Wolbers I'm talking to you), doing cool family things, or cooking, gardening.  There has been one gift in particular out of this. I've had two people in my life that are dealing with the same type of situation, one who ended up losing her daughter and one that I've never met, (but when I do I am giving her a huge hug), and I have been able to be a support to them and hopefully be encouraging and helpful.  My friend Arika was a rock for me, and it feels really great to be able to help other people in the same situation.  I think as time goes on it will get easier, the heaviness will lighten, and no matter what happens with Dane we will all love him and be really happy.  It will be nice when the time comes where I feel like I can take a deep breath again.  Before I know it I will look back on this and wonder what in the world I was so worried about.

Friday, January 13, 2012

Lucky Friday the 13th!!!

Andrew and I went up to the hospital for our usual visit and received some of the best news I have ever gotten, Dane is coming home today!!! We have a few little things to do like get diapers, balloons for the house, put the carseat base in,and thats it! I can't WAIT!!!!!!! From now on I will celebrate every Friday the 13th as a extremely special day!!!

Thursday, January 12, 2012

Stents are history!

Stents are out and surgery is over! He is in the recovery room now coming out of anesthesia! Whew!!

Wednesday, January 11, 2012

Over it, big time.

I think there comes a point in every parent's time here that you think to yourself, "I am completely over this now.  If I never come back to this hospital it will be too freaking soon."  I don't know if it is worrying about the logistics of taking care of Claire and making it up to the hospital to see Dane every day, or if it is the feeling that I am having to choose one child over the other on a daily basis.  Maybe I'm imagining it but now I think Claire is showing signs of abandonment issues...she is becoming clingy and doesn't want to go to bed at night anymore.  It may also be that it feels like our lives are centered around going to the hospital instead of actually living.  Whatever it is, one thing is for sure.  I am o-ver it.

One mistake that I have made is that I keep a timeline in my head.  The doctors will say something like, "When he learns to drink from a bottle consistently and gain weight, then he can go home!"  and I will automatically think to myself, "what should that take, two weeks at the most?" and now I am on a false timeline.  I was hoping he would be home by this weekend, but now I am seeing that it was wishful thinking to have him learn to drink from a bottle within a couple of days when he has spent the last two months on a feeding tube. 

Part of it is, we are getting really tired.  The emotionality of the whole experience, the ups and downs, really takes a long term toll.  I think it is worse now because we are getting close to the end.  There is a feeling like we don't have to buckle down anymore because its almost over. Probably.  It's not like the doctors are going to tell you how long you may have, then we would pester them and hold them to their guesstimate.

As for Dane, he is doing great.  He is healing well from his surgery, taking more and more of his feeds from the bottle, and even got rid of his feeding tube today.  I also got to start trying to nurse him, which can be a harrowing experience for even a full-term baby straight out of the chute, let alone a two month old that has been fed through a tube his whole life.  However I must say we have had a promising start. I have been advised by the South American lactation consultant extraordinaire, Marta,  (she can get a baby in a deep sleep to latch on, she wants you to eat chocolate because that is what European and South American nursing moms do, so of course I have to do what she says...) to use the football hold tomorrow and see how that goes. 

He has surgery tomorrow at 7:45 AM to remove his stents in his nose and all of his stitches.  We'll be really glad when that is over, because he will be under anesthesia yet again. I will post again tomorrow to let you know when he is out of surgery and back in the recovery room.  After this, he will be moved to the intermediate nursery, which is even more progress toward going home.

Sunday, January 8, 2012

Going for the bottle

Dane has done really well after his surgery, even with Dawn picking on him and calling him Cindy Lou Who because his swelling made him look like a Who from Whoville for a couple of days. His nose is healing well and he is more and more realizing he can breathe normally now.
Having an everything bagel with cream cheese in the hospital Einstein's Bagels while we visit her little brother

Andrew in the pediatric surgery waiting room after we heard Dane came through surgery,  waiting for him to come out of anesthesia

Sleeping off his anesthesia, really swollen nose!


One of the biggest hurdles we have to jump now is having him learn to drink from a bottle. He has been on a feeding tube for the past 7 weeks and has never had to use his suck, breathe, swallow reflex. It is a slow process!  At first it seemed like he caught on immediately, but then we would have setbacks to where he would drink only a few cc's (mL)when he would normally take in around 25. The goal is to take all 61 mL at every feeding and then he can come home. The stitches in the roof of his mouth and his feeding tube don't help matters, but he gets the stitches and nasal stents out on Thursday so hopefully he makes really rapid progress then!
video

It is getting harder and harder to leave him now, I am starting to cry every time I go again. He's getting chunky at 7 lbs 4 oz, he's beautiful and so healthy that it feels wrong to leave him there now. Not that it ever felt right in the first place, but when he was preterm it was different, he was so fragile and small that we knew he needed to be there, and that was the only thing that made leaving tolerable. But on his due date, Jan. 2nd, I thought all day about what it would have been like if everything went according to plan. It was a mourning of sorts. I ended that day being grateful that we had him at all, and that he made it through those first few hours when the doctors didn't know whether he would pull through or not. And I look forward to his homecoming.
Our beautiful baby 
Monkey feet

Tuesday, January 3, 2012

Recovery Room Joy!!

Dane is in the recovery room and did really well during his surgery! He now can breathe through his nose and has little stents in. He will have them for the next ten days until next Thursday. I am not sure how many days after that they will need to keep him, but he could realistically be home not this weekend but the next!
The surgeon came out and showed us pictures of the repair in his nasal passages so that we could see the changes that were made. It is such a huge relief to be on the other side of all of this now. I just hope his recovery for the next ten days is smooth and uneventful!

Surgery time!

Dane is in the operating room having surgery done on his nose right now. We just got the call in the waiting room that they are getting started. I do believe this is the most stressed out I have ever been in my entire life.
We got to be with him for an hour before they took him back, and to watch a tiny baby get wheeled away for surgery when they aren't even two months old is pretty excruciating. It doesn't help that they go over all the risks right beforehand. I wish there was a different way to do that! Now I'm back upstairs with Andrew and the wait is on. As soon as we know how it went I will post again, in the meantime, pray for us! Thanks and much love to you!