Ok so this post probably won’t answer all of your questions about Damian, but hopefully I’ll get most of them.
He’s doing really well. We’ve ended up staying in the Neonatal Intensive Care Unit (NICU)–not because he’s in critical condition, but because he’s little and he’ll get better attention here than on the general floor. At this point he’s only got one “IV” in him which is technically a PICC line. This is a sturdier version of an IV that is thread through his vein almost to his heart. This one is on his head… It’s kinda sad looking, but it’s better than the alternative which would have required surgery and sticking some sort of port like thing on his chest.
If you’ve been following his saga you know that he was throwing up pretty consistently before we went in for surgery. They’ve continued to monitor that and have started him back on foods very slowly. He’s thrown up a couple of times so they went ahead and did an upper GI scan. Thankfully, the scan came back fine. He finally passed a test! He’s been able to keep most of his ‘meals’ down though so they think it must just be reflux related. He hasn’t vomited since they did the scan yesterday, but if he does again they’ll order him a reflux test.
As far as eating goes, the little boy is HUNGRY! We’re increase every other feeding by 5 mL. When I left tonight he was getting 45 mL. A normal “full meal” would be around 72-80 mL for him. We’re almost there! I was also able to nurse him today. I asked that a lactation specialist come to observe a feeding since he seemed to struggle some beforehand. Damian showed her all his tricks, and she said that basically I was doing everything right, he just is horrible at nursing… I thought babies were born knowing how, but my little one lacks the coordination for it. This doesn’t say much for his professional sports career if we’re already struggling with coordination. Anyway, as the day progressed his nursing got a lot better. It was such a great feeling being able to nurse him! I felt like I was really his mommy again.
As far as his liver goes, he’s showing signs of a successful surgery. He’s been off pain meds for a few days now with no signs of soreness. They took blood to look at his liver levels and most of them have gone way down. He also has a lot of bile making it through his system, which we can see in his diaper. (I’ll spare you the description!) We aren’t in the clear yet because he’s still at risk for an infection at the surgery site on the liver. If this were to happen, Damian would need an immediate transplant. Also, as the doctor described it, the surgery is never officially declared a success. It just works until it doesn’t. So we’ll be periodically checking his liver levels for the rest of his life or until he needs a transplant. The GI specialist seemed fairly confident that we have at least a few more years left on this liver.
If everything goes according to plan (which has yet to happen in Damian’s life), we could have him home Monday! Say some prayers!! I miss my boy!
Nate and I are also doing fine. It’s hard to leave our baby behind each night since we can’t spend the night in the NICU, however we feel extremely blessed. The outpouring of support from friends and family is what’s getting us through. Thank you for all the prayers, food, kind emails, phone calls, and texts. I’m sorry if we aren’t able to get back to you as soon as we’d like. As you can imagine, things are a bit hectic. But know that we appreciate all of them! I think some people are surprised at just how well we are doing, but I know for me I just feel so lucky that Damian’s doing well. Most of y’all didn’t see me when we first found out about all this, but I was so scared I’d lose him. The fact that there are still options even if the surgery ends up failing is a miracle to me. Also, I sit in the NICU all day surrounded by babies much worse than Damian. It’s all about perspective and having hope. So thank you for all the prayers that continue to build up our hope in Damian’s future! I’ll try to do a bit better with updating the blog and getting back to everyone’s emails and text, just please know how much we appreciate it all!
Here’s a list of the top ten things I’ve learned by sitting in a hospital all day:
10. Nurses are amazing. – I don’t know how they do it all… Especially you NICU nurses… It’s awe-inspiring watching them work with these tiny little babies.
9. Hospital food is horrible. - As a breast feeding mom, I get free meals from the cafeteria. I’m not sure this is actually a perk.
8. Caffeine is a must. – There is definitely a reason the second thing you see when you walk into the hospital’s lobby is a Starbucks. And yes, I’ve already given up my promise to continue my caffeine free streak from pregnancy.
7. The digestive system is complex. – I’ve learned more about vomit and poo than I could ever want to know, not to mention the liver and gall bladder.
6. You will wait. – 95% of your time spent in a hospital is waiting.
5. All kinds of people come to the hospital. – This is great for people watching though it makes me wonder about society some…
4. Pumping is also horrible. – Because I can’t breast feed him (until today), I’ve had to pump every two hours. I think I spend most of my time behind a curtain in the lactation room…
3. Doctor’s don’t do much. – Don’t get me wrong, I’m sure they’re useful and all, but doctor’s really don’t do much when it comes to the patient. Today the NICU doctor asked me if Damian had ever been home along with what treatments he had received that day… I feel both of these things should be in the chart, which I’m thinking they should read. But what do I know…
2. Children’s hospitals are depressing. – Walk around the place for 5 minutes and the fact that some horrible Atlanta driver cut you off seems like small potatoes.
1. Children’s hospitals are wonderful. – Yes, it’s sad seeing these poor kids sick, but this place saved my son’s life, along with the lives of countless other children. From the surgeon who was able to fix him to our nurse who has helped me probably more than she’s helped Damian, this place will always hold a very special place in my heart.
For those of you who don’t know, I have a horrible fear of clowns. Friday, in the PICU, happens to be clown day. Thankfully these clowns are trained to be in a hospital and know to stand outside the room and wait to see how the patient responds before entering. I wonder how many times it’s the parent’s look of fear and horror that keeps them away…
On a serious note, Damian’s doing fine. He’s had his breathing tube removed, and they’ve got him off the sedation. Thankfully he’s still sleeping a lot meaning he’s not in much pain. In the next hour or so, they should be removing his catheter and his Art-line so we’ll be able to hold him again. All his vitals are doing well, and the doctors are saying nothing but positive things regarding his recovery.
Nate talked to the specialist this morning on the phone and discussed more about the long-term care Damian will need. He said that the main reason Damian would need an immediate liver transplant is from an infection near the procedure site. As long as this doesn’t happen, we should have a number of years depending on the success of the surgery. We’ll have him on steroids for about a month because some studies have shown that this increases the likelihood of bile moving into the intestines. We’ll also have to do regular liver screenings to monitor the progression of the disease. Our doctor told us that getting a liver transplant, especially for children, is fairly easy because they only need part of a liver. If necessary, Nate and I could donate part of ours. Damian and I have the same blood type, so I’m more than ready to donate if I need to.
I’ll keep you posted as we know more. Thanks for all the kind thoughts and prayer! We love you all!
After 4 hours of surgery, Damian is recovering in the ICU. He has been diagnosed with a rare disease known as Biliary Atresia. In a nutshell, the disease causes the liver to eventually fail by destroying the bile ducts of the gall bladder and letting bile back up in the liver. If left untreated, it is fatal. However, the surgery today was able to attempt to fix it by removing the gall bladder and connecting the liver directly to the small intestines in hope that the bile will start to drain directly into the intestines.
In a third of patients, this works and the liver is fine. In another third, the bile doesn’t drain completely, the liver continues to degenerate, and the child will eventually need a liver transplant. In the last third, the procedure doesn’t work at all and a liver transplant is needed almost immediately. So…. Odds are in the favor of an eventual liver transplant. But we aren’t giving up hope because there are better odds when the surgery is performed before 2 months of age. We won’t know for a few weeks as to whether or not the surgery has worked, which will be tough. However, now this problem has a name. We know what we’re fighting. And I know that we will win this because I’m not losing my baby, that’s just not an option.
Damian will be in the ICU for at least two nights. They have him on a ventilator and will keep him sedated until that comes out. After a full 24 hours without the ventilator, he will be moved to a regular room where one of us will spend the night with him. He should be in the hospital for about a week.
Thank you all for the kind thoughts and prayers that surrounded us today. I know it’s what will get him better and get him through this. Please continue to pray for little Damian as we still have some time to go. I’ll try my best to keep everyone updated as we find things out.
I’ve prolonged posting about all this for a number of reasons. Part of me didn’t want this blog to become a pity party for one. Another part of me was worried at some point Damian will find these posts and think I was miserable when he came into the world. And then of course part of me just didn’t want to talk about what’s going on because it hurts. But I’ve decided to tell you the reality of the situation because I need to–not only for myself but because this blog is to chronicle parenthood, and, as I’m learning, that’s not always a pretty story.
I love my boy with an intensity that could only be described as maternal. Yet, this first month has been the hardest of my life. Of course there’s been the normal stuff every new parent goes through… The sleepless nights, the crying, the constant feeding, changing diapers every five minutes, etc… But Damian’s decided he’d rather start off with a bang.
When they’re born, babies lose weight. By around two weeks, they should start gaining some of that weight back and be close to their birth weight. Damian decided he’d rather be on the skinny side like his mom and dad. I tried telling him chubby babies were much cuter but he decided not to listen. And so began my constant worrying and our trips to the doctor every 4 days for weigh-ins. At first, I tried a different breast feeding technique. No weight gain, just more constant feeding (me nursing for an hour or so at a time every other hour) and fighting him to stay awake and eat. Thankfully, he wasn’t losing weight, he was just not progressing.
Finally the doctor told me I was going to have to supplement with formula, which I really didn’t want to do. But I knew I had no choice. I was to nurse for thirty minutes and then offer Damian a bottle to see how much he wanted. I was to also go have Damian’s frenulum snipped because his was a bit short and may have been causing problems with his nursing skills. Four days later Damian had gained weight. Not a lot but he was moving finally!
And then the doctor decided he looked a little yellow/pale. I had noticed this too but thought “babies grow out of jaundice, no big deal.” I guess I was just more concerned with him not gaining weight. The pediatrician ordered a blood test just to see. And then last Thursday I got a call that changed everything.
Damian’s liver isn’t working properly. The pediatrician wasn’t sure what was going on, but the results showed a certain enzyme being much higher than it should be. He was concerned because this could be very serious. The words “life threatening” were used. We needed to see a specialist immediately, and he had gone ahead and scheduled an appointment for us for the next day. Let me tell you, when the words “life threatening” are used with regards to your baby, your heart stops. And then it breaks. I got off the phone and fell into a puddle of tears holding Damian. What the hell was wrong?! Was I going to lose my baby?!
We went to see the specialist who said it could be a number of things causing this issue so we needed to start running tests to narrow it down. They would start that day and he sent us to the Children’s Hospital of Atlanta. When I was pregnant I was more emotional, but still not a big crier. However, every time I saw an ambulance for the Children’s Hospital I would cry. To be walking through those doors took everything out of me. I did not want to be there, especially not for my baby.
The doctor’s biggest concern was that there was something physically wrong with the gall bladder–a blockage, something didn’t form correctly, etc. And since this would require surgery to fix, we would investigate this option first. We started with blood tests and then an ultrasound. Damian wasn’t allowed to eat at all before the ultrasound so he ended up going almost 7 hours without food by the time we were done. He was not a happy baby. We were not happy parents. The ultrasound was looking at the size of his gall bladder. We wanted a big one, we got a medium size one which doesn’t tell you much. More telling was the fact that a major duct from the gall bladder appears to be missing. To confirm this, a more intensive scan was scheduled for Tuesday.
The scan lasted from 8 am to 4 pm. He had an IV keeping him hydrated because again he wasn’t able to eat. Thankfully, he slept. The scan took part in steps as they traced the radioactive material through his digestive system–more specifically through his liver and gall bladder. If after the first round of imaging the material was seen passing through successfully, we could stop the test and go home. We didn’t pass. We had to come back again today at 8 am for a final scan.
Test results showed that bile was not moving, as expected. He is scheduled to have surgery tomorrow afternoon to confirm that something is wrong with the ducts and then hopefully to fix it. He will likely have a week long stay at the hospital. During this time they will hopefully be able to figure out why he’s decided to start throwing up after every meal. This little trick he started doing on Monday. I tell him he can’t gain weight if he doesn’t keep food down. One day my little boy will grow… (and maybe stop trying to give his parents heart failure…)
I know this post is long, and I apologize. I wanted everyone to know what was going on. Nate and I are hanging in there. Thanks to him and our families, I’ve received constant support and renewed strength to keep fighting for Damian. Had the first two weeks not been so draining both physically and emotionally because of the feeding/weight issues, maybe everything would be a little easier to handle. I know it’s ok to get upset and to worry, but I’d like to be strong for him. I want to feel that everything is under control and I’ve got everything together. I’m the far from that though. However, despite my lack of strength I know I will do whatever it takes to get Damian better and that has to count for something. Please keep us in your prayers that we get everything taken care of in the next week or so. We want our sweet little boy to be our big healthy baby again!
My baby boy is two weeks old ?! How did this happen?! I swear I’m going to wake up and he’ll be 18… (There’s probably some truth in that statement since to wake up I’d have to sleep first, and I’m starting to worry that won’t be until he’s 18. However, I’ve been told the teenage years are just as bad when it comes to getting any sleep. Goodbye soft bed, hello dark circles under my eyes!)
Nate went back to work yesterday leaving my mom and I alone with Damian. I miss him already… It was nice having him home. Without him I have so many more diapers to change! Monday will be my first time completely alone with the baby as Mom leaves Sunday. I think I’m ready to handle it… It’s amazing that something so small can become so intimidating at times. I just have to remind myself that babies cry a lot, that’s normal. They also only sleep during the day, that’s normal. New moms like to cry for no apparent reason, that’s also normal. There are a ton of things that no one could ever fathom as being normal that suddenly become the norm when a baby arrives in this world. It’s a total mind shift, one that I think I’m slowly accepting.
Despite the poo and screams at 3 am, Damian’s wonderful. When I’m holding him and he’s all snuggled up in my arms, I forget how tired I am or how he may have peed on me. He knows how to capture my heart with just a little smile or fat-and-happy sigh after eating. Hard times always containing some manner of sweetness to them, and I’m learning that from my two week old…
It’s now been over a week since we brought Damian home from the hospital and Mary Helen and I have learned quite a lot. As our families have told us, and I’m sure any new parent will agree, babies like to cry. A lot. Some may cry more than others, but it’s a pretty well known fact that the child you bring home from the hospital will be bawling, angry mess during a large portion of his initial weeks.
Unfortunately babies also tend to choose the night hours to bring out this habit. Damian has taken a particular liking to sleeping very well during the morning hours and then tormenting us during the EARLY morning hours. His nights and his days are backwards. Maybe it’s because he started his first day close to midnight, but it sure would be nice if he could get this figured out sooner rather than later.
As countless people have said, it’s just how babies are. They fuss and cry, sometimes without good reason. But it is still tough as a new dad to see your boy crying and not be able to do anything about it. The other day I tried bouncing, rocking, putting him in his swing, and even introduced him to a little Spanish guitar with no success. Usually I got about a minute of calm Damian while he processed this new attempt before it was soundly rejected with a resounding WHAAAAAAAAAAA!
On the brighter side, Damian is just so darn cute (when not crying) that I can’t help but be happy to see him. He is very big on flailing and stretching his arms, and has a seeming knack for giving himself the hiccups. We have also decided he at least has my nose. My mother brought over baby pictures the other night, and sure enough, that same nose appeared on me as a baby.
I’m looking forwards to seeing him grow up each day and hopefully getting a couple extra hours of sleep each night!