I need a closet of white dresses.......

I've been thinking about what I was going to write about in this blog post for a few days now. My feelings have been running all over, and at the same time, I have to communicate what is going on with Colin. Let me preface by saying that the bigger picture is that I know things will be ok. My faith is what keeps me going and gives me hope. So I never really "need" encouragement in that area. What I struggle with is getting through the fears and making it out to the other side. I hope that makes sense.


Now, to explain the current situation. As I explained in an earlier post "I wont believe it unless pigs fly" because Colin suffered a brain bleed in the first 3 days of his life, the blockage of blood in his brain ventricles has caused Hydrocephalus, a term for brain fluid buildup. It has been managed up to this point with a Reservoir, and for the most part, it was doing it's job. However, the doctor did explain from the beginning that this was only being considered because he was too small for any other alternative treatment, and most likely this would only be a temporary solution.


Throughout this time, I have been hoping and praying that his little ventricles would somehow absorb the blood that had accumulated there. It wasn't entirely impossible, but it was a long shot. However, after he got his breathing tube out coupled with the fact that he has now reached a larger weight, the Reservoir has not been able to keep up with the fluctuations in brain fluid buildup.


For this reason, his team of doctors decided that he was ready to have a VP shunt placed. What does this mean? Well, first, PLEASE view this short 6 minute video prepared by a doctor at Childrens Hospital Boston that explains what Hydrocephalus is and how a shunt can treat it. He does a GREAT job of explaining the situation.



Here is a picture of what a little baby looks like once the shunt is placed:

I don't know about you, but I get kinda scared when I see this. However, the doctors & staff have kept saying that once he gets bigger his hair can cover the bump and you can hardly see it. They have also stated that once he has the shunt placed, if everything is working correctly, we should see HUGE improvements in Colin as far as eating and breathing. 

So this should all be good news for me, right? Then how come I am literally having a panic attack just thinking about all this? Probably because I see that this could most likely be something that Colin has for his whole life. Plus, shunts can malfunction and not drain the fluid correctly, which would require Colin to go to the hospital for a correction surgery. Or the shunt could get infected, and he would have to have it taken out temporarily then put back in. 

Most cases of kids that I read that have shunts, their parents said that mostly they deal with having a shunt revision, which means their child outgrew the shunt and need it replaced, or they deal with a shunt infection. It is a medical issue that can have great rewards with some tough risks. 

At the same time I was doing my research about shunts, I found out about a possible alternative treatment. Actually, in the video that you just watched above. The doctor in the video begins to talk about this alternative form of treatment at the 4:03 minute mark of the video. It is called ETV/CPC, and is is a treatment that he pioneered as a way to treat children in Africa with Hydrocephalus who can't have shunts because of the maintenance shunts require. 

If Colin could get ETV/CPC surgery AND it worked (and in some cases it doesn't) it would mean this would be a one-time surgery with no shunt placed  that would allow the brain fluid to flow through and be reabsorbed with no buildup. This sounds wonderful to me, but I don't know if Colin is a good candidate for it. In some material that I have read, it usually works better in an older child. 

One of the hard parts of this is that I would like to explore and ask questions about the wide range of possibilities of this condition and surgery with the neurosurgeon. However, his neurosurgeon is the one that gave his negative prediction of Colin's future quality of life (not being able to walk, etc.). How would you feel about talking with someone like this? 

How can one balance being pragmatic vs. being pessimistic? Some of the doctors I have encountered that seem to be the best in their field seem to think they are being pragmatic, yet I feel they are just being pessimistic. How can I continue to balance out their view with my optimism and idealism for Colin's future? 

It's like wearing a white dress and all around you is mud that is bubbling and splattering. I keep trying to go forward keeping my dress white, yet a doctor bubbles and sputters negativity around me, and I am left trying to keep my "optimistic" white dress clean. It is so hard to do!

Overall, I keep trying to remember that in the end, I just want Colin to have the best quality of life that he can. However we can acheive that, I am open to the journey of reaching that goal. Yet sometimes I want to just scream that I need a break. It gets hard being a tough mommy trying to navigate this sea of decisions. 

So every night I start my prayers with all the things I'm thankful for: Rich and his calming sense of direction, the smiles that Colin makes in his sleep, the finished nursery that I pass every day, friends that somehow suprise me with the right thing to say even when I think they won't know what to say. And the panic and fear that I have slowly dissapates and I fall asleep, finally able to wake again in the morning with the strength to face this road again. Sometimes I just wish that I had more than one white dress to wear, you know what I'm saying?.........

2012, you better be good to me!

Well, things have been moving so fast, that I haven't been able to update my blog as much as I would have liked. So I figured that I better get one in before January was over so I could at least have one a month.


As of today, Colin is doing FANTASTIC! He is finally off the breathing tube and is down to just using a nasal cannula. Here is one of my favorite pics taken last week:

So as long as he keeps it up, hopefully in a few weeks he could be off the nasal cannula altogether. Crazy! Since he is now off the nasal cannula, we are now starting to try to teach him how to breastfeed. While breastfeeding in general is hard for mothers of newborns, it is especially precarious when you are a preemie like Colin.


Because he is just now learning to breathe on his own without the breathing tube, we have to be careful that when he takes in breast milk, that he doesn't aspirate (breathe) it into his lungs. Even just a tiny spray of fluid could cause MAJOR lung damage. Of course this terrifies me, and each day that we try, I try to stay calm. At the moment, he hasn't quite remembered how to latch onto me the way he did a few days ago. This could take weeks, if not months. However, I am patient with him, and seeing how far we have come, I am pleased.


As for his medical issues, we are still dealing with them as new information is presented. Preemies are at risk of having ROP, an eye disease that can cause blindness. Here is a great 3 min video about how it is identified and treated:




In Colin's case, we decided to go with a new procedure that puts a medicine in his eye to enable the blood vessels there to develop like they should. As of right now, it seems to have worked, however, he is still showing signs of being on the cusp of it MIGHT returning. Ugh! So for the next 5 months, he has to have a weekly eye exam to make sure it doesn't come back. If it does, then they will give him more of the medicine or perform laser surgery on him.


As for his brain bleed, he still has the reservoir that is in his head and they use it to drain the brain fluid that accumulates. Here is a pic where you can see the reservoir on his left side:

We are still not sure if he is going to get the permanent shunt that can manage this better, but my mommy intuition says we might get this soon. We just need to make sure he is SUPER strong breathing on his own, so that when he recovers from the shunt surgery, he can go back to breathing on his own.


Which brings me to my other "mommy intuition". For some reason, it is telling me that we might be able to bring him home in March. However, no doctor at CHLA has even HINTED as that as a possibility. But I will continue to pray and hope it comes true.


2012 has a lot riding on it. So far it has seen my baby come so far. Look at this contrast from his birthday, 1 month birthday, and 2 month birthday:

I'm so proud of him!