Who am I? Where am I? What am I?.........

Well, the high of having Colin home quickly morphed into a harsh reality. BABIES ARE TOUGH! I literally feel as if I am walking in a daze. I guess that is what sleep deprivation does to you, right?


So Wednesday we were able to take little guy home, and it was just like how I imagined it. Full of crying, pictures & hugs. We were VERY fortunate to have Colin's primary nurse, Krystal, working that day, so she was able to discharge us that day. With her help, things went sooooo smooth. Krystal did not just become Colin's nurse, she has become our very close friend, and has even offered to come to our house to help with the transition. I am so very thankful that the Lord places wonderful angels like this in our lives for a reason.

Here is Colin saying "see you later!" to his favorite nurse Krystal!

"Hey Mom, don't forget to put back on my oxygen. I still need it!"

So do you want to see how it looks taking home a kid in the NICU? Well, in our case, it looks like this:

Let's see, oxygen tank, check. Pulse oximeter to measure his heart rate & oxygen saturation in his body at all times, check. Over 7 different medicines, check. 2 large boxes of medical equipment to use at home, check. Oh yeah, and baby Colin, check!

And then before we knew it, we were home. Getting adjusted when we got home took up most of the first night. All that equipment and medical stuff was strewn all over our bedroom along with Colin. Being hyperorganized, I had to place most things in zip lock baggies to organize syringes, bottles, tubes, equipment,etc.


Over all the first night was not that rough, as I knew I was going to have to get up every 3 hours to feed Colin through his G-tube. A few feeds were going to require over 4 different medicines and a breathing treatment. And he was going to have to remain attached to tubes & wires at home. But at least he was home and he would probably be relaxed, right? Wrong!


The whole time Colin was in the NICU, he rarely cried. At first, this actually scared me because I thought it might be a sign of developmental delay. But shortly before he came home, signs of his "fighter" personality started to emerge. At first, I thought it was cute. But by Thursday night, small crying fits gave way to long crying fits. 


At first, it would start from 9pm till 12am. He would be super alert, suck on his pacifier like it owed him something, and would become overall agitated and upset. By Friday night, it started at 6pm and went non-stop till 12am. 


Being worried about Colin's health and hoping something was not wrong, we called the hospital, who of course wanted us to err on the side of caution and bring him in. So there we were, right back at the hospital which only a few days earlier I thought I wouldn't have to see for awhile (or at least till his first follow up visit). 


And after waiting for over 2 hours, the sweet ER doctor basically told me that Colin was ok. That is when I lost it. The toll of the past few days & nights caught up with me, and hearing someone tell me that although I was doing a great job, my son would probably still cry, was such a source of relief. At least I knew that I wasn't torturing him in some way by having him cry. Plus, it also showed me that after all this time, I finally had a "normal" baby who cried just like everyone else. 


So here we are back at home. Could it be colic? Could it be him adjusting to our house? Could it be he is going through a growth spurt? Could it be he needs a good poop? Well, it could be all of these things, or none of these things. For now, we just have to be patient and let things progress as they can. 


But the one thing I have learned is that angels are placed in our life for a reason, and after my breakdown in the ER, I quickly learned to call on those angels. So now for the next few days, we will have a little help from these angels so we can sleep, eat and maybe even shower!


If I don't see or talk to you all for the next few weeks (or worse, years!), don't fear. I'm just at home, getting to know my little guy and establishing our routine of feeding, medical issues and therapy. Soon enough we will both emerge from our cocoon and be ready to let the world know we are here to mingle. In the meantime, I'll just keep looking into Colin's eyes to remind myself who I am and why I am here.........

It's almost time!!!!!!

As I write this, we are being told that there is a 90% chance that we can take Colin home today. Why not 100%? Well, when you are taking a preemie home from the hospital, apparently there are a MILLION things that need to be signed off on. Reports, equipment to be ordered, exams to be done, etc. 


So although the only thing we are waiting for right now is the home medical equpiment to be delivered to Colin's hospital room, there could always be one last hiccup. For now, I am just going to go forward as if Colin is going to come home. And you know what? IT'S SO FREAKING EXCITING!!!!!!


I keep telling Rich, "Is this how parents feel when they are about to give birth?". You know that when you come back to your house, you are going to have a baby, and things are going to be SOOO different. Are we really ready? I sure hope so!


So after Colin's triple whammy surgery last week, the rest of the day of his surgery was rough. The doctor's were able to move quickly and got Colin in for surgery first thing in the morning on Tuesday. Surgery went great, and Colin was back in his room by 11am, OFF THE VENT and right back to using the nasal oxygen cannula only! When you were on a breathing tube as long as Colin was, and you make it back from anesthesia not having to use the breathing tube after a surgery, it means you recovered real well!


However, he was in pain, which was a first for all of us. For 6 hours, I stayed right by his crib, and while I couldn't hold him, I could only touch his head and legs and try to calm him as much as I could. It was tough, because every 2 minutes, he would cry in pain. The doctor's had prescribed morphine for his pain, and kept giving him a dose every 4 hours, but it didn't seem to do too much. 


By 6pm, he seemed to calm down, and finally got to sleep soundly with no cries. I knew we did the right thing for him, but inside I was so heartbroken that I had to put my little guy through so much physical pain. 


The next day, all that morphine caught up with him, and was making his heart slow down TOO much, and affected his breathing as well. So the doctor's were able to switch to Tylenol for pain, and hoped that all that morphine would leave his system so he could get back on track. 


But it's amazing how resilient babies are, because by that next afternoon, Colin was awake, alert, looking around and all around calm. I love this little guy!

See Colin's G-tube near his diaper?

So as quickly as Colin recovered, then it was just a matter of time to let his body heal, and then start feeding him through his G-tube. But during his recovery, we quickly learned that my little guy was a piggy, and had gotten used to having a full tummy all the time. 


When his feeds had to stop for the surgery and then food was started out slowly, Colin was NOT happy! It was actually kinda cute. He would attack his binky (pacifier) hoping that milk would come out of it, and get frustrated when it wouldn't comply. 


By Friday, our occupational therapist said it was ok to let Colin breastfeed for no longer than 10 minutes so that he could still practice eating by mouth. Colin latched on quicker than he ever had, and was going to town! At the end of the 10 minutes, I had to stop the little guy, and boy, was he mad! It was a side to him that I never saw before, and I'm quickly getting to know!


I've always known Colin was a fighter. Obviously he couldn't have made it this far without that quality. But he never really showed that side. Now in the past few days, he really shows his "demanding" side, and I have to say, I LOVE IT!!!


So now what? Well, once Colin comes home, we have ALOT on our plate:


1. Quarantine: If you were able to attend my shower, you learned how Colin being a preemie is much different than other "normal" babies. While the old adage "you have to expose them to germs" usually works for other kids, in Colin's case, it could be detrimental. His compromised immune system and lungs still need more time to grow, so for the first 2 years, his contact with the outside world, espcially during flu season, has to be limited. However, he can still go out for doctor's appointments, which brings me to #2......


2. Doctor's appointments: Colin is going to be seeing the following: Pediatrician, Pulmonologist (for his lungs), Eye doctor, Neurology (for his brain development), Neurosurgery (for his shunt), Gastrointerologist (for his G-tube), AND Occupational/Speech Therapist (for his eating and muscle development). Whew! As he gets older, he will start to see less and less doctor's, but for now, it will be a full plate. And as many of you know, doctor's offices are germy places, so trying to stay healthy is going to be a chore!


3. Therapy: Because Colin is a preemie, he will qualify for state Early Intervention Services to ensure that he reaches his milestones, like rolling over, walking, talking, etc. We will also be looking into additional resource therapies to help Colin develop as well as he can, and since I won't work, helping Colin will be my full time job. 


4. The future: This part is unknown. As we have said many times before, because of his brain bleed, Colin is at a high risk of developing Cerebral Palsy. However, much like autism, it is a spectrum disorder, than can be either really mild, or very severe. However, brains are very plastic, and have huge potential to rewire themselves. Gabby Giffords, the US Senator in Arizona that was shot, is a prime example of how the brain can recover with extensive therapy. And with Colin being a baby, he has an even greater potential to do so.


This journey is far from over with Colin coming home, but it is interesting to see how the path is going to change. I am forever grateful for all the wonderful friends and family who have been a HUGE source of support and understanding as we have made it this far. I'm looking foward for Colin to getting to know all of you, at his own slow, safe pace with your understanding. 


I am also grateful for the wonderful blessing of Rich's business that is allowing me to stay at home with Colin and take care of his needs. I have meet so many parents in the hospital or in other parts of the country who don't have this blessing, and I pray for their needs every day. 


Mostly, I am so, so thankful to be here today with Colin. In the beginning, we had no idea how far we would make it with him. And to look at him to today growing in leaps and bounds is so wonderful! I would do this all over again just to be able to look at his cute face every day. And I'm excited every day for the future, and what it holds. Time is all we have now.........

Hi Mom! I'm ready to help you give my medicine!

You've come a long way baby!!!!!!

Today is little guy's 4 month birthday! Keeping this short & sweet, since my next blog post will be all about Colin coming home THIS WEEK!!!!! Details to follow soon. For now, enjoy the miracle........... 

What a difference a day makes.....

This title truly does say it all. No sooner had I written my last blog post did everything suddenly change THAT DAY! Let me explain.


We had noticed earlier in the week that Colin's use of oxygen was slowly increasing. At first, the nurses and doctors were not concerned, as they just assumed that Colin's lungs were just adjusting to find the right balance of how much additional oxygen he might require. However, by Wednesday, he was up to 2 liters of oxygen, when a few days earlier he was as low as a half liter. 


The doctors asked if anyone in our household was sick, and we said no. So if there was no sickness, another possibility was the dreaded "A" word: aspiration! It was speculated that since Colin was increasing his feeds by mouth, maybe a little bit was going down into his lungs and that was causing the lungs to look "wet" and made them work extra hard, therefore requiring more oxygen. 


To find out if he was aspirating, they scheduled a swallow study on Friday that would allow them to X-ray his throat as he was drinking his milk to see if he was aspirating. However, by the end of the day on Wednesday, they also realized that they had stopped his diuretics 5 days earlier, and that without the diuretics, it was probably causing his lungs to retain water (something that a preemie with Bronchopulmonary Dysplasia, or BPD/lung disease does). To see if it would make a difference, they put him back on diuretics that day. 


So by the time Friday rolled around, Colin's lungs were starting to improve drastically, and it was determined that weaning the diuretics too soon was probably the cause of him requiring more oxygen. However, since the swallow study was already scheduled, they decided to go ahead with it anyways just to rule out aspiration, just in case. 


Going into it, everyone said pretty much the same thing: "I'm sure Colin is not aspirating. He has never shown signs indicating he is. I'm sure this swallow study will be for nothing". Well, turns out, it wasn't for nothing. He was aspirating!


Not only was Colin aspirating, but he was doing it "silently". When this happens, a baby shows no outward signs that they are allowing liquid to go down their airway and into their lungs. Each time Colin took a sip of liquid, a little would go down his throat, and a little would go into his airways. They even tried to thicken the liquid, which sometimes helps them to coordinate their swallow better so they don't aspirate, but this didn't work either. 


So what does this mean? Well, the reason Colin is doing this is related to brain development. Because of his brain bleed and preemie status, he has delayed neurological processes. For this reason, he cannot coordinate his suck/swallow/breathe coordination......YET. The only solution for this to develop is to give his brain more time to develop. How long it will take, that is the ultimate question. 


Because Colin is already past term, any additional "unnecessary" time he spends in the NICU could be detrimental to his development. His occupational therapist put it this way: we could give him a few more weeks to see if his brain would develop this skill, and then re-evaluate him about a month later, all while he would stay in the NICU. However, if the skill didn't improve, then by that point, they would recommend a G-tube, and then send him home to to let his brain develop more.

OR


We could just opt for the G-tube now, and as soon as he recovers from the surgery, take him home, and let his brain develop. 


What would you do? Well, for us, we immediately thought it was a no brainer: G-tube now. 


Having a G-tube is not permanent, and as soon as his brain developed the suck/swallow/breathe coordination better, we can remove it. Plus, even with the G-tube, we can still practice feedings by mouth under direction/guidance by an occupational therapist, so the skills he has developed to this point are not lost. 


So Rich and I immediately advised the medical team that we would like to go ahead with the G-tube as soon as possible. Since he also needs surgery to repair a hernia, and a circumcision (yuck!), we wanted to see if they could do them all at once. 


After an upper GI and EKG to check out his heart was done today, he was given the ok for surgery. As of now, it is scheduled for tomorrow, March 6th, but since he is a low priority case, he could be bumped to the 7th or 8th. 


Everyone asks me how I feel about this. Well, like any diagnosis, my feelings run the gamut from relief, to panic, to sadness. Of course I am excited that this means Colin will be home soon (in 1 week if things go EXTRA smooth!). 


At the same time, my heart aches knowing that my only best option requires his little body to be subjected to more surgery. You would think I would be used to this by now, but I'm not. I think every time it has to happen, it has gotten harder each time. 


But what's the big picture? Colin is here with us. He can breathe (with a little help!), his brain is developing (with a little help!) and most of all, HE IS HERE WITH US! 


Is the future going to be a little tough? Sure, but every day that I can look into his little face and gaze into his little eyes, I am thankful. And that is worth any change that we have to be prepared for........

So close, yet so far.........

I never really thought about the act of eating. Actually, the act of sucking, swallowing and breathing. It really is a complicated effort. You have to position your mouth just so to get liquid in. Then you have to coordinate your muscles to move it down your throat. And during this, you have to remember to pause and take a breath in.


I have this funny habit of drinking water from my water bottle. I take a looooooong drink that requires me to hold my breath for like 10 seconds, then when I'm done, I take in a loud gasp of air. Rich always asks me why don't I just pause to take a breath, but I seem to like doing it this way.


So as Colin is starting to find his way in this world, I guess he is trying to figure out how he likes to take in liquids. But the process seems like it is taking F.......O.......R......E.......V......E......R.


We have been giving this "feeding" project 3 weeks now, and we are slowly making progress. When we started, Colin was allowed 3 feeds by mouth a day. Since I really didn't know when he would be up for feeding, I decided to come to the hospital for 3 feeds in a row. He is given my breastmilk every 3 hours, so I would show up for the 9am, 12pm and 3pm feed.


So this is how it would go: I would get up after my 7am pump, and once done, I would quickly get dressed and head over to the hospital by 8:30am (you know, traffic and all!) Once I was there, I would get set up in my chair with a Boppy in my lap to prop up Colin and a nippleshield to place on to get him nursing (texture is important for this little guy!)


Then we get him out of his bed, and for 10-15 minutes, I would try to wake him up to eat. I would rub his head, undress him to his diaper, shift him around. And then maybe 1 time out of 10, he would latch on and start to eat for at least 10 minutes. 1 time out of 10 people!


This means that most of the times, nothing would work to wake him, and by 9:30am, he was back in his bed, with his feeding tube setup to start his feeding. Then I would have to wait another 3 hours before I could do this all over again. And then another 3 hours to do it AGAIN for the 3pm feeding.


By the end of the 1st week, exhausted was not quite the word I was feeling. More like overwhelmed. Nothing seemed to work. While babies are normally very sleepy, dealing with a preemie is sometimes even more so. He is dealing with medications, fluctuations in oxygen doses being administered and delayed neurological processing issues which make just trying to be awake to eat hard for him.


At the end of this first week, we ended up having a parent meeting with his hospital staff of doctors, nurses and clinical staff. We discussed vaccinations (a modified delayed schedule was agreed upon) and NOT moving him out of the NICU (which they were initially thinking of doing since he was doing so well).


So since he was going to stay in the NICU, I asked them how long I was going to have to keep up this effort of trying to get him to eat. Would he always be this sleepy, or would there come a point when they would try alternate measures?


To this, his doctor said that by the time Colin was 44 weeks (at the time of our conversation, he was 39 weeks), we should see him taking more feeds by mouth. If not, then we would MAYBE have to start discussing a G-tube. What is a G-tube you ask? Please watch this short 1:26 minute video to find out:



While it is not permanent, it could be used until Colin grows stronger and starts to master the process of eating food by mouth. Plus, it would reassure the hospital staff that Colin could come home with us with a fail safe way to continue to grow and gain weight. 


But still, it's a G-tube for crying out loud! Another surgery! Needless to say, I DO NOT WANT THIS. But then again, it's not me who can decide this. This really is up to Colin. If he couldn't eat much by mouth, then who was I to force him?


So by Friday night of that first week, I was feeling dejected. I went into the hospital for his 9pm feeding (I started trying as many different feedings to see if he would be more awake at other times) thinking "this is it, he is probably going to need a G-tube". 


But then, Colin decided that night to latch on and breastfeed for 30 minutes, the maximum amount of time he can do so without burning too many calories. It was just the boost I needed! 


The next day was his baby shower, so I wasn't able to get to the hospital all day until 9pm that next night, and again, he did 30 minutes breastfeeding. I thought, YES!, we are on a roll!


He was then allowed 4 feeds by mouth each day. That way, I could be there for at least 2 feeds during the day, Rich could do 1 feed at night (he likes being there for his 9pm feed to spend Daddy/Colin time!) and the nurses could do a feed if neither one of us were there. 


But this meant that while I could breastfeed when I was there, Rich and the nurses would have to feed Colin a bottle. And this is where lactation consultant vs. nursing staff had differing opinions. 


My lactation consultant (hospital provided) believed that only doing breastfeeding was the best option for Colin. She stated studies that showed that breastfeeding is easier for preemies to do, and that bottles put them at higher risk for aspiration (taking fluid into their lungs). 


But I was slowly staring to find that while breastfeeding had it's benefits, it also seemed tough for Colin. First, I realized that he needed to be swaddled to contain his squirmy arms that were getting in the way. However, when I would wrap him tight, he would then get cozy and sleepy, which I would then have to fight to keep him awake. Add that to being placed in a lying down position next to my warm and soft chest, he would find it hard to stay awake in his condition. I also soon realized that my little baby has his days & nights mixed up (which is common for NICU babies) so the feeds during the day he was at his sleepiest. 


However whenever Rich would come for the 9pm feeding at night to bottle feed Colin, this is when he would have the most success. We soon realized that several factors contributed to eating success at this time. Hearing his daddy's voice, having a bath, being very alert, and taking a bottle sitting up were allowing Colin to eat with Rich each and every single time. And this combo was allowing Rich to have more success with Colin, and it was allowing Colin more excercises in learning how to eat by mouth.

Colin awake after a feeding with daddy!

While a bottle contradicted what the lactation consultant was telling me, I soon realized that what the NICU nurses were telling me made sense: getting Colin home from the NICU was going to rely heavily on giving him a bottle, plain and simple. 


No one else could breastfeed him. Bottles were readily available. And the passive act of simply sucking in some milk and then swallowing it from a bottle was less taxing then breastfeeding was. I could see this!


Are we any closer to increasing his feeds by mouth? Not yet. I only came to this realization a few days ago. But I think we have stumbled onto a strategy that is going to work on increasing his feeds by mouth. This goes to show you how tricky it is dealing with a preemie. Or really any child with special needs. You have to figure out how things work FOR THEM, not what general guidelines say. 


At the same time, for the 2nd time yesterday I tried feeding Colin a bottle during his 12pm feeding (one of his usual sleepy times), and with Rich helping, he took 30 ml of a 52 ml bottle! But I find that I doubt myself when I give him a bottle. I don't feel as confident as when I breastfeed him. I hear the lactation consultant's warning about aspiration in my head, and I feel panic the whole time I'm feeding Colin his bottle. 


It is making me realize that being a mommy is wonderful, but it also comes with soooooo much guilt and responsibility. Am I making the right decision by limiting breastfeeding to only 1 feed a day (for now I am going to try the 3pm feed as a time to breastfeed)? Can I really feel comfortable feeding him a bottle at other times? So many questions, and of course, there is no guidebook to say "yes, you are on the right path". 


So I just have to trust my instincts, and hope that this course of action will lead us to our end goal: no G-tube and home from the NICU by March 24th, when Colin will be 44 weeks. Of course I have this date looming in the back of my head. But in the end, the only person that can determine the outcome I want is Colin. So wish us luck as we keep trying our strategies. In the meantime, I think Colin is just going to do what Colin is going to do. 


I just hope there is more of this:

Awake after a bottle session during the day!

And less of this:

Taking a short snooze after eating with Daddy!

As The Smith's say: "How Soon Is Now?"........

NICU life is a roller coaster. This is said over, and over and over and over again. By doctor's, nurses, social workers, and other preemie mommy's. The past week we have navigated the following:


1. Surviving shunt surgery: Colin recovered well from his surgery, and was off his breathing tube and back to the nasal cannula within 2 days! Doctor's and nurses were VERY pleased with his progress in this area. While I'm still a little scared to hold his head with the shunt, everyone in the hospital says that it doesn't hurt him and holding it won't hurt.


2. Nasal cannula: Doctor's are still trying to wean Colin off of having to use supplemental oxygen, and as of now, he is on the lowest setting. The next step would be taking it away and letting him breathe on his own! We are so close we can almost taste it, but for me (and mostly Colin), this will be a whole new world. Breathing on his own! Wait, can he really be ready for this? I mean, you want something for so long, but then you also become dependant on it, that you wonder if he can survive without it. Hoping that when it goes away, it doesn't make things harder.


3. Vaccines: Doctor's have been bringing up the fact that now that Colin is 2 1/2 months and over 5lbs, he should be ready for vaccinations. This has been a source of fear and uncertainty for Rich and I. While I don't believe at this point in the Autism-vaccine link, I am worried about the possible neurological effect that getting so many vaccines at once can do to his brain. Because Colin has one of the most severe brain bleeds, I look at his brain as such as fragile and delicate organ that needs to be protected and strengthened as much as possible. Could vaccines do more harm to it than good? Long talks with his neonatologist team and pediatrician's are on the agenda for the next few weeks. (And if you are slightly interested, here is an article that I felt was pretty well balanced in laying out the facts. A User Friendly Vaccine Schedule)


However, the one issue that has the potential to bring so much joy or sadness is the task of teaching Colin to feed by mouth. For most new mom's, teaching a newborn to breastfeed is always a challenge (so I hear!). But teaching a preemie is sooooo much more of a challenge.


See, from birth, Colin had a breathing tube in his mouth, stuck down his throat, 24 hours a day. So the only way he has been fed from day one has been a feeding tube placed down either through his throat or nose (currently it is through his nose, so that his mouth is completely free!).


For some babies, having things in their throat for so long can make them develop an oral aversion. How can we know if he has an oral aversion? Only by trying to teach them how to feed by mouth can we learn if they have an oral aversion. So for now, time will tell with Colin.


Second challenge, being fed with the feeding tube. Up until this point, Colin has received all his food from a feeding tube, on schedule at 12am, 3am, 6am, etc. No work on his part, all he has to do is lie there and wait for his belly to get full.


So now, here is his mom shoving this HUGE "pacifier" (aka, my breast!) into his mouth, and is trying to teach him, "Hey, guess what, your food can come from this thing from now on. Wanna try?". I'm sure Colin is saying, "Yeah right lady, I'll just wait for my belly to fill with the yummy food right on schedule, and maybe if I want, I'll suck on that 'large' pacifier of yours."


And last challenge of all (but it can be a big one), is the fact that he has a disadvantage because of his brain injury because of the brain bleed. While we can't know for sure, he may not have all the neurological resources to be able to quickly understand how the whole process of breastfeeding works, and may not be able to grasp the most important skill of "suck, swallow, breathe".


So how do we overcome these challenges? With EXTREME patience. Because while I'm sure this process is hard for a mom, I feel it is even harder for me knowing that I have these extra hurdles to overcome. Because if he can't master feedings by mouth, then it delays him coming home, or could even mean he would have to get a G-tube (a permanent feeding tube) if we want to take him home. If I could have a shot of alcohol or take a Xanax before our lesson, believe me, I would!


However, I have to say to myself, "be patient, let it flow naturally", while the back of my mind is saying "how soon is now?" These two struggling voices in my head really get on my nerves, you know?


So for the next few weeks, or months, or who knows, if I'm lucky, it could be days, I will constantly try to find myself in a state of zen, trying to teach my son how to feed. And all the while, I will hope we have no other setbacks, like infections, or breathing problems, or vaccine complications. Because like a house of cards, if one falls, it all can fall down. I won't even think about a delayed discharge from the NICU or permanent feeding tubes. 


I'll just play this song and get through each day..........

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?.........