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!

Someday at Christmas.....

I love Stevie Wonder. This is one of my favorite holiday songs by him. While the message is about world peace and things like that, the song has a much smaller, personal message to me. 

I know that someday at Christmas, Colin will not be in an incubator, but happy in my arms at home. 

I know that someday at Christmas, I won't have to travel 8 miles to see my son, but I'll only have to walk a few steps.

I know that someday at Christmas, Colin will not weigh just over 2 pounds, but will be a much heavier, chunky Campbell baby!

I know that someday at Christmas, I won't have to pump my breastmilk to a cold, unfeeling machine, but I can feed it directly to my little boy who will be in my arms. 

I know that someday at Christmas, we will not have to celebrate Christmas in a cold hospital, but in the warmth of our living room with a Christmas tree to look at. 

I know that someday at Christmas, we will be able to send a Christmas card with a family picture, and Colin will be included, right in my arms. 

These are the little things that I dream about that I can't wait to happen next Christmas........

I won't believe it unless pigs fly.....

Today was a hard day for us, but mostly for Colin. Let me start by explaining his brief history. On the 3rd day of Colin's life, he had a serious scare in that his heart rate suddenly dropped. I wrote about it in a prior blog post. After he stabilized, ultrasounds revealed that he had Intraventricular Hemorrhaging that occurred in both the left and right side of his brain, basically bleeding in his brain. Here is a picture of a babies ventricles, and a link to a description of what this is:

IVH description

Why does this happen? Well, preemies are so small, and all their blood vessels are more susceptible to being ruptured, especially when they have low blood oxygen levels (what happened when his heart was stopping). When it does occur, the hope is that the bleed isn't severe enough to cause too much damage to the brain. 

We always knew that this brain bleed would have to be dealt with at some point. Basically, the ventricles are like drain holes in a sink, and once they get clogged, things start to back up. The hope was that the blood that was there would slowly be reabsorbed over time. However, after monitoring it for the past 3 weeks, doctors realized that instead of being reabsorbed, the ventricles were slowly starting to enlarge. This meant that the "sink holes were backing up" and the blood was causing the brain fluid to build up, a term that is called hydrocephalus.

So yesterday when they noticed his head circumference had enlarged, his NICU team referred his ultrasounds to the Neurosurgery department to get their opinion about what should be done. We had hoped that they would give an answer like "oh, this is normal, we'll look at it again in another few weeks", much like they had been saying up until this point. However, they decided that the buildup could not wait any longer. 

Usually with hydrocephalus, doctors put in what is called a shunt, a small tube that is passed from the ventricles and drained into the abdominal cavity. However, Colin is still too little for that, so they decided to put in a Cerebrospinal Fluid Reservoir (or CSF for short). Please click on the link below and scroll down to "Neonatal Reservoir" for a description and pictures:

Neonatal Reservoir (CSF Reservoir, Ventricular Reservoir)

This is what leads me to the "pigs flying" title. After the surgery, the doctor came over to talk with us. He gave the usual details, "surgery went good; things should progress fine from now on", etc. However, when Rich asked him what this meant for Colin's long term outlook, what the doctor said got under my skin. 

He felt that because Colin had extensive brain bleed, the damage it caused was quite severe. He felt that Colin would "most definitely have neurological defects, like not walking, seeing or talking". Now, I'm a realist as much as the next person, but this is the one thing that I really have a problem with. I know that doctors look at "average outcomes" of patients, but I think it is wrong for them to assume that my son will automatically have this fate. 

I have read countless stories so far of other preemies who were diagnosed with Grade 3/4 brain bleeds and who are walking, talking and are lovable little kids! Google it yourself, or see this link: Other preemies with Grade 3/4 brain bleeds

So for now, he doesn't know what Colin is capable of. He can't predict the future. Yes, what Colin faces are real possibilities, but so is the possibility that I might get hit by a bus or win the lottery. Unless it ACTUALLY happens, I am not going to let that determine Colin's outlook. When pigs fly, I'll believe it!

But where does that leave us now? Sad, angry, confused. These are all things that I and Rich are feeling right now. Every day that we build up faith, something comes along and tries to knock it down. Some days are easier than others. But today, all I feel like doing is getting mad. I refuse to let someone else dictate what is not yet written. I am putting it in God's hands, and until then, I have decided that starting from today, I am going to spend the rest of my life helping my little boy find a purpose for his life. I know he was brought here for a reason, and whatever shape his life takes, I can't wait to help him develop that purpose. 

Pigs flying will be our reminder of this purpose. This has been the theme of his nursery to this point. While the drawings haven't been painted yet on his walls by me, they will now. And I will remind Colin every day that until pigs fly, no one can determine the future, not even his.......

The "fight" of his life.......

Victor Griego, aka "Bobby Herman"

For those that don't know, Colin's middle name is Victor. He is named after this man above. This is a picture of my grandfather. He was a boxer in the lightweight division in the 1920's-1930's, until he met my grandma and got married.

I think it is ironic that I choose Colin's middle name after my boxing grandfather. This is exactly what Colin is doing at this point in his life. Fighting, but for totally different reasons. 

I was also reminded of the double entendre of "Victor" when Colin was at Glendale Adventist. It was a few days after his birth, and the pastor who counsels families and prays for them came to Colin's incubator to chat with us. After a few minutes, he offered to say a prayer for Colin with us, and we obliged. 

When he was done, he said "Well, I certainly believe that Colin will live up to his name and be a 'victor' in his struggle". When he said that, I was instantly overcome with peace at that thought. How perfect was the choice of this middle name for him!

As the days have passed, I sometimes struggle to remember this comforting feeling of Colin's middle name. For every few days that are good, they have usually been followed by not so good days. Our recent bad days have been marked by the fact that Colin has developed an infection located in his lungs. 

Even though he is in the NICU, there is no way to prevent infections from happening, no matter how diligent people wash their hands or things around him are sterilized. In his case, the infection was noticed immediately, and antibiotics were started. 

But routine illnesses are tough on the little guy. And when the first antibiotic didn't seem to be working after a day, they had to switch to a different one. The 2nd day with his infection turned out to be a tough one. His heart rate which had been holding steady after his heart surgery at 150 was shooting up as high as 200. His blood pressure was either really low, or really high. And his settings on the ventilator were constantly being adjusted, where a few days before, they were not touched at all. 

It's the hardest thing of all to watch all this going on with your child, and there is NOTHING you can do about it. Well, almost nothing. After the high of being able to hold Colin, the next day they had to switch him to another ventilator, and now I can no longer hold him for awhile. Only touch him.

So at least I found that when I place my hands on his head and legs, after a few minutes, he calms down. This gives me some peace. But otherwise, this fight is between Colin's little body and all the medical challenges he faces. 

So I try and take solace in the fact that he has a strong middle name, and that his blood is descended from a fighter. And I read this wonderful story to him called "On The Night You Were Born", and I hope that somewhere in Colin's mind I am instilling him with the will to fight all these challenges. 

But sometimes I'm reminded of the fact that I need to "fight" too. Fight the despair that takes over my days of confusion. Of trying to find order in waking up, pumping, going to the hospital, pumping, sleeping, and then starting my day again. Of seeing other mothers so happy with their children, and wondering if I will ever be that peaceful myself. 

I am told all the time that I am strong, yet most days, I feel so weak. Weak with no medical degree to understand all the medical terms that I am bombarded with each day. Weak in not knowing why my little boy has suddenly become racked with constant "seizure" like activity. Weak in not knowing how to incorporate my past life of friends, family and most importantly, me. 

Yet again, I have to remind myself that I have my grandfather's blood too. And even if I feel weak, I am still here each day. So I cry when I can, and rest just as much, and always hope that the next time I wake, that I will feel that peaceful feeling that I felt that day with the pastor. Because I want to be a 'victor', just like Colin........

This is what a "Kangaroo" looks like....

It started out like any other day. We were making our usual morning visit to see Colin. We brought our camera in case he was on his tummy. We kept forgetting to take pictures of the scar on his back from his heart surgery, and we like how comfy he looks on his tummy.


As our nurse was giving us a general update on Colin (what his stats were, if he had a good night, etc.) she casually mentioned, "I was talking to the doctor and we thought now would be a good time to start Kangaroo care if you like".


My eyes opened wide, and Rich and I looked at each other in disbelief. Of course we like! How soon could we start? "Now, if you have the time". At that moment, the floodworks started. This was it. I was finally, finally going to hold my baby for the first time.


I can't explain the happiness I felt at that moment. It was as if I was being rewarded for all my pain and suffering to that point. I could really feel as if I was Colin's mommy. But then, a little bit of fear creeped in.


How would this work? He has what seems like a million tubes. None of those could be removed, as they indicate how well he is doing. And most importantly, he still needs his breathing tube. The tube always has to be positioned just so. What if me holding him wouldn't work well with positioning the tube.


But all that melted away as they laid him on my chest. After a few minutes of positioning, and then covering him with some nice, warm blankets from the heater, it was time for Mommy & Colin time.


Now to Children's Hospital's disadvantage, they did not have any comfy recliners or gliders for me. The nurse did find me as comfy a chair as she could, and put a pillow behind me for comfort. However, after a few minutes, I realized that it would not be as comfy as I would like it.


But then I remembered all the times I complained during my pregnancy. And all the mommy guilt has tripled since Colin's early arrival when I think about all the times I said "Man, I can't wait to not be pregnant anymore". Never in a million years did I mean that I wanted Colin out at that moment. But now that he did arrive early, sometimes I can't help but wonder if I put that intention out there unwillingly.


So no matter how uncomfortable I am, I decided that I would sit in that chair for as long as it would take. In general, Kangaroo care is suggested to take place for a minimum of 1 hour (the length of one full sleep cycle). Kangaroo care has the following benefits (taken from Wikipedia):


Kangaroo care arguably offers the most benefits for preterm and low birth weight infants, who experience more normalized temperature, heart rate, and respiratory rate, increased weight gain, fewer nosocomial infections and reduced incidence of respiratory tract disease. Additionally, studies suggest that preterm infants who experience kangaroo care have improved cognitive development, decreased stress levels, reduced pain responses, normalized growth, and positive effects on motor development. Kangaroo care also helps to improve sleep patterns of infants, and may be good intervention for colic. Earlier discharge from hospital is also a possible outcome. Finally, kangaroo care helps to promote frequent breastfeeding, and can enhance mother-infant bonding.


With all these benefits, I would sit in glass for an hour if I had to! But overall, it wasn't that uncomfortable. I hummed some songs to him, I tried to rock him as best I could, without moving the ventilator. He was positioned a little too close to my face, so I couldn't really look at him. But at the very least, I got to talk quietly to him. But after awhile, I realized, "Mommy, you need to be quiet. Little boy here needs to rest and get his sleep cycle started." So mostly, I stayed quiet. 


And before I knew it, my bladder interrupted. I had to end our session. I made it for 1 1/2 hours.  And it was great! So they slowly removed him from my chest, and I watched as they gently put him back in his incubator. 


From now on, I can hold him whenever I visit. It is such a wonderful feeling to know that I can hold my son. Now, I'm pushing Rich to hurry up and get ready for our twice a day visits. Because now I know that every time I see Colin, we are going to be enjoying some serious snuggle time.........or at least until my bladder interrupts........

The long "roller coaster ride" ahead......

Since Colin's birth, many people and organizations have described having a preemie as a roller coaster ride. However, another mother of a preemie described having a preemie specifically as one roller coaster ride. It is like Space Mountain at Disneyland. 


With other roller coaster rides, you usually can see the dips and turns ahead. On Space Mountain, you are in the dark, and while you know there are dips and turns, you can't see them when they happen. 


I would say that is exactly how I feel about Colin's situation. Everyday that gives me a few moments of happiness is foreshadowed by fear that at any moment we might face a huge dip, or a slight turn. 


To help others understand some of the issues we face, here is an overview of some of the issues that Colin has, is or will face as a preemie in the NICU (Newborn Intensive Care Unit). Many of these definitions are taken from a booklet I was given written by the March of Dimes.


1. Anemia: Preemies are often anemic, which means they do not have enough red blood cells. Preemies may not have enough time to store iron, which makes red blood cells. While some infants can be treated with dietary iron supplements or drugs that produce red blood cells, in Colin's case, his needs have been immediate, so they have used blood transfusions. While I started to count the number of times he had blood transfusions when he was first born, I have lost count after 6 (and we are only on day 13 since his birth!). 


2. Breathing problems: While there are NUMEROUS breathing conditions that preemies face, for now, I'll just say that Colin is using a mechanical ventilator. It delivers warmed and humidified air to his lungs through an endotracheal tube (a small, but long tube inserted down his mouth into his windpipe). As of right now, he only needs some extra oxygen to breathe, however, it can change depending on how distressed his body and lungs are. 


3. Patent ductus arteriosus (PDA): This is the most common heart problem in preemies. Before birth, much of a fetus' blood goes through a passageway from one blood vessel to another instead of through the lungs, because the lungs are not yet in use. This passageway should close soon after birth, so the blood can take the normal route from heart to lungs and back. Since Colin was a preemie and it didn't close at birth (usually only for full term babies), he had to have the surgery to close the hole. They cut a 2 inch incision in his back at his shoulder blade, pushed his lung aside, and used a staple to close the gap. Pretty simple, right? (if you can't tell, this is said in my "sarcastic" voice).


4. Feeding: Colin is a LONG way off from being breast or bottle fed. For now, he is fed intravenously through his belly button with sugar and essential nutrients until he can successfully breathe on his own and his intestines are much stronger. 


5. Intraventricular hemorrhage (IVH): This refers to bleeding in the brain and is most common in preemies his size. This is the scariest of the things he face, although at the moment, we don't know the long term damage yet. This bleeding usually occurs in the first 4 days of life, and occurs near the fluid filled spaces in the center of the brain. The brain bleeds are graded from 1 to 4, with 4 being the most severe. Colin has a 3 to 4 brain bleed, and while it hasn't continued bleeding, the vessel has not changed. This means it can either erupt again, or may require a shunt (a drainage hole in his head). Grade 3/4 cases can cause neurological defects, some as severe as Cerebral Palsy. 


6. Jaundice: Occurs when the liver is too immature or sick to remove a waste product called bilirubin from the blood. A bright light can help the body break this product down, and that is why in some pictures you have seen Colin wearing his "sunglasses". As of right now his bili levels are down, but from time to time depending on his surgeries, this could go up again. 


7. Keeping warm: Preemies have a hard time controlling their body temperature, and don't have enough body fat to prevent loss of heat. This is why Colin is kept in the incubator, and probably will be in it for a long time. A baby will grow faster if they can maintain a temperature of 98.6


8. Necrotizing enterocolitis (NEC): This potentially dangerous intestinal problem most commonly affects premature babies. As of right now, he doesn't have it. However, he had something similar to it, and this could lead to NEC if he is not watched carefully. It was called Focal Intestinal Perforation (FIP). This was why he was transferred to CHLA. This small tear in his intestine caused "free air" to accumulate in his abdomen, and the only solution was to create 2 drain holes in his tummy to release it. Every day they monitor the drain holes, and for right now, they believe that the tear has already repaired itself, so hopefully soon the drain holes will be taken out. However, if his intestines suffer because of this, he could develop NEC, so they are watching the intestines closely. NEC could cause him to have feeding problems, abdominal swelling, and could require sections of his intestine to be surgically removed. Scary stuff.


9. Retinopathy of prematurity (ROP): This is an abnormal growth of blood vessels in the eye that can lead to bleeding and the formation of scars, which would result in blindness. We don't know if he has it yet, but at some point later, he will be examined for this. 


Are you exhausted yet? Because I am. However, so far, the most scariest thing we had to face happened in the first 24 hours of his life. It was the 2nd night after his birth, and he seemed to be resting fine. I wasn't sure how I was going to sleep again after my first restless night of sleep, so the nurses suggested that I take the Valium that was prescribed for me. 


I took the full dose (2 pills) at 10pm, and proceeded to go to sleep. I was then woken up at 2am by 2 nurses who calmly but nervously informed me that the neonatologist doctor in the NICU wanted me brought to the NICU immediately because of an issue with Colin. 


Being so out of it, I had to be carried on both sides by the nurses, but as soon as I was brought in the NICU, I soon became hyper-alert. 


4 people were perfoming manual CPR on Colin because his heart rate was rapidly declining. In a sense, his heart was stopping. All the nurses in the NICU were watching this horror scene unfold. And as his mommy, they gave me a seat right at his bedside. 


I had no idea what this moment meant. Was it the end? Was there anything I could do? Was this a final "dip", or was it just a mild "turn". This was when my roller coaster ride as a preemie mommy began. 


For 30 minutes I watched in horror as they performed manual CPR on Colin. I had the brief insight to ask the nurses to call Rich so he could come down to the hospital. He made it during the last 10 minutes of the ordeal. 


But until Rich arrived, I came to understand the depth and magnitude of a mothers love. Because even though I was painfully crying the whole time, I knew that Colin had to know that everything would be ok, no matter what the outcome. So I decided to repeat these 2 sentences out loud for him to hear: 


"Colin, I love you sooooooo much. Please give me a chance to be the best mommy ever."


"God, please let him breathe, please let him breathe". 


That was it. For 20 minutes straight until Rich came. And then just as Rich arrived, the doctors determined that his heart was stabilizing, and slowly they worked to get him stable. Was it a miracle? Modern medicine? I think it was a little bit of both. But either way, I had my little boy back. 


So while each day we face all these problems, after facing the depths of how low this journey can go, I know that it won't help my situation to fall apart now. Colin is still here. Each day that he breathes is another day I can show him that no matter what, I can be the best mommy ever.


For now I'm just trying to learn to get used to this roller coaster of a ride. Wait, scratch that. I don't want to get used to this roller coaster ride. I really want off. But for now, I'll ride it out till it's done. Then I'll never look back.......or maybe only when I read this blog..........