Swallow Study: Pt. 2 & a little fun in the sun!

Things have been moving at a breakneck pace these past few weeks! So at the beginning of the month, the swallow study was conducted. This time, I had so many hopes and expectations, it was hard for me to try to relax this time around. 


However, Colin has really come into his own, and this time around, he pretty much said "Mom, I got this!". And got this he did! He passed with flying colors! There was not even a hint of him aspirating like he did during the first swallow study. They even lay him on his side, used different flow nipples, and each time, he swallowed like a champ. 


With that HUGE monkey off our back, we were now ready to start feeds by mouth. However, as much as I (and Colin) would like to go full blast into eating by mouth again, because he is starting over again, we have to go slow so he doesn't tucker out and start to not like it over time. 


For this reason, for the first few days, we had to go slow and start with 1 feed by mouth a day. However, the next few days after the swallow study were crazy busy, and we had to wait about a week before we could start. 


First, it was our 5 year wedding anniversary! Every year we have usually done something fun and romantic, and with the past year we had, I wanted this one to be no different. 


I read about this hotel in Laguna Beach and thought it would be nice, so we stayed here:


Pacific Edge Hotel

The room literally looked over the beach!

For a little fun, I decided to book a kayak tour of the harbor. Sometimes my great ideas sound great in theory, but reality sometimes is rougher than I imagined, however, this was NOT one of those times!

After this relaxing trip, we met with Colin's Occupational Therapist who then helped us to devise a plan to get Colin eating by mouth again. Yet our plan had to wait a few days, as we had to travel to Houston to see Rich's daughter Lauren (funny blog post about our travel experience to follow!).

Once we did start 1 feed a day and Colin was doing FANTASTIC with it, earlier this week, our Gastroenterologist decided we could then increase his feeds to 3 by mouth a day. 

This is when I came to a crossroads. Up till this time, my plan had always been that I had wanted to breastfeed Colin if it was ever fully possible. Now was my chance! However, my bosom was not cooperating. 

A few weeks prior, I had reached a "pumping" burnout. Because Colin's growth had increased the amount of milk he had to take in a day, over time I was not producing enough breast milk by just pumping. For this reason, I figured that until Colin was ready to breastfeed, I would just reduce the number of pumps a day, then eventually transition from pumping exclusively to just breastfeeding. 

Yet in doing this, I had reduced my "supply" considerably, and now that we were suddenly ready to put Colin to breast again, I had to make a decision. If I wanted to go forward with my exclusive breastfeeding plan, it would have to mean I would have to start including multiple pumping sessions a day (in addition to Colin breastfeeding 3x a day) in order to increase my milk supply to a level that could sustain him. 

Maybe it was after reading this article: "Are you Mom enough?", or maybe it was just reality, but similar to my kayak type of idea, I realized, the idea sounded much easier than the reality. 

Because as much as the "idea" sounded great, the reality was much harder. I lasted 2 days! Is that pathetic? I don't know, in the end, I just said to myself, "Is being stressed out about this what I really want? Or did I just want the chance?". I realized just being given the opportunity to nurse at all was really all I could ask for. 

Being able to look into Colin's eye while he breastfeed was pretty amazing. Watching him fall into a blissful sleep was cute. Yet making sure he was growing and getting healthy each day, formula was just as easily doing the trick for me. With that, my mommy instinct grew a little stronger!

So now I have been bottle feeding my little guy 3x a day, and if I'm honest, sometimes 1 more time than usual, as I realized I have created a monster! To say Colin LOVES eating by mouth is pretty much an understatement. Just look at what he does when I have to take away his bottle to burp him:

"Mom, I'm not done yet! What ARE you doing?"

Guess he doesn't miss my boob that much...........

The day of travel from HELL! aka: Our trip to Houston!

Rich always teases me about this fact that I share with people about myself: I used to be a flight attendant. Why does he tease me? Well, much like I tease him about talking about the Highland Games as an expert, he teases me about being the flying expert. 


I flew for 4 1/2 years as a flight attendant. I saw many things in my travels. So when I married Mr. Travelling Man (aka: Rich Campbell), it has come in real handy. 


Yet this time around, we have a preemie. Before Colin's arrival, we always said that no matter what, we were going to incorporate our baby into our travel plans as soon as possible. I knew exactly how I needed to make travelling with a child possible, and I couldn't wait to test out my "idea" (remember this earlier description of me?). 


So after blessings from our Pulmonologist and our Pediatrician, we were given the ok to travel by airplane. I was to take strict precautions to make sure germs were kept at bay. I figured, with as much medical waiting rooms we have seen over the past several months, an airplane was pretty much no different. 


Yet nothing could have prepared me for the day of travel from HELL! Everything and anything that could go wrong that day, happened. Where do I start............


First, it started innocently enough when we got up at 6am on Friday morning to get ready for our 9:30am flight. After a restful night sleep, I was ready to get my sleepy little boy up from his bassinet to start getting him ready. Yet right away, I noticed that his blanket was SOAKING wet. Thinking maybe his overnight feeding pump had somehow malfunctioned, I looked around for the cause, until I found the reason: HIS G-TUBE HAD COMPLETELY COME OUT OF HIS STOMACH!


Never having had this happen before, we ran around like chicken's with our heads cut off before we were told by his doctor to quickly head over to the ER at CHLA. And so our day began!

Rich helping with Colin's xray's.

After 4 hours in the ER, we finally got the tube put back in. Cause of it falling out: undetermined. Somehow the balloon that was supposed to hold it in place under the skin burst, but how, we will never know. For now, it's back in, and hopefully, not for long! (see earlier post here.


Undeterred, we decided to reschedule our flight for a later one, but this one was not going to be a non-stop (a must when you travel with a little one! Get it over and done with as soon as you can, I say!). 


When we got to the airport, Rich forgot that he left a pocket knife in his backpack from an earlier camping trip. While Rich would usually just chalk it up to "oh well, just confiscate it", this time it was hard for him because the pocket knife was bought on his trip to Finland! But as we were short on time, there was nothing left to do but let them confiscate it. 


Continuing on, we started our 4 1/2 hour flight to Houston. Another tip I learned from watching so many parents travelling with infants: buy them their own seat to sit in. While most people can't afford the cost and figure they will just have the infant sit in their lap, trust me, while doable, it makes things super tough!


So with his car seat in place on the plane, for the most part, Colin did fine. In the back of my mind, I was still concerned over the fact that Colin hadn't pooped in 5 days! I knew something was gonna come out sooner or later, but never figured it would be anywhere else but his behind. However, about an hour before we landed, Colin's tummy pretty much had enough, and decided it couldn't handle any more milk, so he spit up about a cup of milk on me!


With my bags checked, the only one who really suffered was me, since I couldn't change my top (well, Colin did have a sad look after he did it, so I guess he suffered too!). But by the time we landed, I was pretty much dry (although I smelled horrible!). 


As we collected our bags in baggage claim, we soon realized that Rich's bag was not there. Soon enough, he was told that his bag didn't make the flight, and wouldn't be there till the next morning. Our luck was only getting better! 


As we started in the shuttle to the car rental lot, it suddenly started raining like crazy, with lightening going off all around. And of course, no rain gear! Thank heavens the lot had an awning to stand under. 


Yet with our luck, we soon found out that the car we reserved was not available, so another vehicle was given to us. Since it was so late by this time, we didn't care and decided to just load up and get out of there. 


However, this was our lucky day, for no sooner did we have everything loaded up, but we found out the back seat was broken and we couldn't fit in Colin's car seat!


After transferring everything to a new car, we soon thought we were on our way. But just about a block away from the car rental lot, we discovered the GPS device they had given us was not working! Ahhhhhhhhh!


Back to the lot, and after that delay, we were finally on our way. Yet our 1 hour drive to the hotel was a tense one for us, because as we drove along, signs on the freeway indicated that a tornado watch was in effect till 2am that night! You haven't lived until you stare out of a car in fear for tornado's I tell you!


The fun continued when we made it to the hotel. We soon discovered that they did not have a crib in our room for Colin, so we had to wait until one was located. In the meantime, I decided to help Colin get ready for bed and finally had a chance to change him out of his smelly clothes!


Yet, I soon realized that the smell wasn't just attributed to his spit up earlier. No, his tummy had finally decided to cooperate, and when I opened his diaper, Colin finally had the blowout that I had been looking for all week! To make it even "better", he decided to add a little pee to the mix while I was trying to clean him up!


I quickly scooped him up while Rich tried to clean up the diaper pad. Of course, this allowed my shirt to have the lovely look of spit up AND poop! Lovely! 


And that folks, was our day. 


However, the entire trip wasn't all horrible. Colin ended up sleeping through the night as usual. We were able to relax the next day with Rich's daughter Lauren and her husband Ian. We checked out some yummy Texas eateries around town, while Colin would politely nap in my Ergo carrier. And my 1st Mother's Day was spent exploring the NASA Space Center in Houston (another tip: not much to explore here!). 


After our Friday trip, our return trip on Monday was a breeze. We made the non-stop flight no problem, and Colin's tummy cooperated throughout the flight. Even better, Colin is showing NO signs that he caught a cold on his first plane ride! 


So despite all this, watch out world, the Campbell's have decided that we are ready to travel with Colin (at least till flu season starts again!). Just have to make sure Colin has pooped before we go..................

I have nothing to fear but fear itself........right?

This little guy is so cute! Yet, he has made me worry more than I have ever worried in my life.


As mentioned on my Facebook postings, we were able to wean him off of oxygen as of last week. He is doing great! It is so great to not have to use the pulse ox machine (that beeped like crazy ALL the time!), or tape his face with the nasal cannula, or just have 2 cords attached to him at all times. Now, it feels like I have a regular little baby!


We have also officially started therapies. For those that don't live in California, the state here offers what they call "Early Intervention Services". This is provided to children that the state deems need additional help to catch up with their peers or ensure they reach certain milestones, like sitting, crawling, walking, etc.


Colin automatically qualified because of his micro preemie status, so after an evaluation, he is now eligible to receive Occupational Therapy, Physical Therapy and Early Intervention therapies......in our home!


Aside from the state paying for this service, we are also trying to use our medical benefits through Aetna to pay for these services as well. Just trying to cover all bases so our little guy can get as many therapies as possible, without it coming from our pocket (which after our IVF & NICU stay has been a pretty penny!).


So 2x a week, Colin will be meeting with an Occupational Therapist who will help him to transition from using his G-tube to doing feeds by mouth. However, we can't really ramp up his therapy in this department until we find out if he is still aspirating (see my old blog post here).


To do this, we have scheduled another swallow study next Wednesday. I must say, I am having serious anxieties about it. Before, I really had no idea what to expect going into the last swallow study, because we had no idea that he was silently aspirating. Now, I know alot hinges on whether he has improved in this area. 


If he is still aspirating to a serious degree, it may mean that we will have to still use the G-tube until we can start transitioning him to solids, which at that point we would have to evaluate and see if he still aspirates on solids, which sends us down ANOTHER path of therapies. 


However, if he aspirates just a tiny amount (and we have all done it. Think about the times you have swallowed something down the wrong pipe!) then we would be able to slowly increase his feeds by mouth and wean him off the G-tube. 


Both outcomes can mean the road ahead changes, and I guess that is what is making me a little nervous. 


Because if I thought things moved at a slow pace in the NICU, on the outside for me, things seem to move at a FAST pace. Every day doctor's appointments determine medicine dosages, feeding amounts, therapy appointments, etc. And sometimes changing just one area affects another area. Which means I have to rethink where we are at overall. 


But one of the other things that has been weighing on my mind were 2 separate doctor visits recently. 


One visit was to his neurosurgeon to check on the status of his VP shunt (see earlier blog post here). Somehow I had gotten it in my head that we had a possible chance of maybe taking out the shunt at some point in Colin's life if his brain bleeds resolve themselves. But the doctor clarified that because he has had the shunt put in at such a young age, the brain develops around it, and removing it could cause problems such as strokes, further brain damage, etc. It's not really the end of the world for Colin, but at the same time, makes me a little scared for his future. 


Do I have to become the overprotective mom that doesn't let my son play football, ride dirtbikes, or do any sort of activity that could cause injury to his head? Will Colin even care about these things? This is what I wonder and worry about, even though Rich reminds me all the time that I constantly worry about building a bridge over troubled waters........when there isn't even any water.


The other appointment was with his pediatrician. She casually asked me how I felt about Colin's eye contact. I never really thought about it, but had small inklings in the back of my mind that he still hasn't made continuous and constant eye contact with me, let alone even smile.


Preemie's have 2 ages: Chronological vs. Adjusted. Here is how the March of Dimes website explains:



Babies who are born prematurely often have two ages:

• Chronological age is the age of the baby from the day of birth—the number of days, weeks or years old the baby is.
• Adjusted age is the age of the baby based on his due date. Health care providers may use this age when they evaluate the baby's growth and development. So, if a baby is 6 months old, but was born two months early, his adjusted age is 4 months.

In Colin's case, right now he is 5 months Chronological, 2 months and 2 weeks adjusted. This means he would be evaluated as a 2 month old. 


Since he is only 2 months and 2 weeks adjusted, our pediatrician is still not too worried that he hasn't developed consistent eye contact or smiles yet. But now, it is all I can do to not think about making sure this happens. 

So do I continue to worry about whether his brain bleed has already affected his social and physical development? Yes, I know the answer is just love my little guy no matter what. But it's so hard not to let those fears dominate my thoughts.


Oh why can't this mommy thing be alot easier than I thought............

"“Every man is guilty of all the good he did not do.” - Voltaire

People prepared me for the sleepless nights. For the ton's of dirty diapers I would be changing. For the crying bouts that most times seem to have no answers. But the guilt? That is one that I feel most people don't prepare you for. 


As a mommy (and more specifically, the mommy of a preemie), I always feel as if there is more I should be doing. On days that Colin seems to just want to sleep, instead of relishing a moment to take a shower or make myself something to eat, I find myself constantly thinking, "Is something wrong? Could he be sick?" (no, he's not. Perfectly fine the doctor tells me.)


Or when he is awake and I am holding him and doing double duty of reading an article or watching a TV show on my iPad, I think, "Shouldn't I be playing with him right now? Isn't there some brain development activity that I should be practicing with him?" (For the record, he doesn't 'like' to play. Actually, he doesn't even know how!)


And then I talk to other mommy's and they tell me, preemies or not, they worry too. Alot. So I guess this is all normal. 


But it sure does make adjusting to life with Colin at home a weird adjustment. So far, things have been great. Our routine is eat, sleep, doctor's appointments, therapy, bath's and snuggle time. Not necessarily in that order. 


Yet having Colin in the way I had Colin has reminded me that I am not living the life I thought I was going to live. I told myself that my life was not going to change just because I had a baby. No sireee! That baby was going to adjust to MY life. 


Yet.........my life has completely adjusted to his eating, sleeping, doctor's appointments, therapy, bath's and snuggle time. And while it's not horrible, it's just......different. 


I guess I knew that when I had him at 25 weeks. Things definitely did not start out the way I planned. But somehow, I now feel as if my life is on hold. Maybe it doesn't help that being in the middle of RSV season, I can't take Colin out anywhere for fear of his being sick and further weakening his lungs. So being homebound makes you think crazy thoughts. Or are they? 


I mean, is this readjusting to mommyhood something that all mother's face at some point? Thinking you are going to plan it another way, and then that cute little bundle comes along and says "Sorry lady, that's not how it works."


Some people say, "Wait till 4 months adjusted (when Colin is 7 months old). That is when they'll suddenly come alive. They'll smile, be alert, things will just be different". So I wait. And I try not to feel guilty about sometimes wishing that I could fast foward to that time when things will be different. But then I realize, they already are different. So I start to understand that here is where I need to be, guilt and all. And that is ok. There is always more good to be done tomorrow..........


(Full disclosure- I am not depressed! Just musing on my thoughts of motherhood. No need to be worried.)

Home Sweet Home.......

Sleep has been the one thing that has dominated my thoughts since Colin has been home. Either his or mine. But so far, we are both doing a pretty good job of getting some!

About to fall asleep in his bassinet

This is a picture of where Colin spends most of his time (aside from our arms!). His bassinet is right beside my bed, and he really likes hanging out in there. It has a cute little noise machine that plays classical music, has a light so I can see him in the dark, and vibrates his bed! Most evenings after his long afternoon nap, he likes to just chill in there, listening to music, looking around.


Our daily routine has been pretty much been established. After struggling for the first few days with some help, Rich and I decided we would get a nanny/mother's helper. And boy, is it a necessity! However, I am quite sensitive that others may not be able to have this "necessity", but I am grateful that we can. Because I believe it is VERY hard trying to manage a baby like Colin with no outside help.


For one thing, Colin has a daily routine of medicines that have to be added to 3 of his feeds. On top of that, he has to have breathing treatments 2x a day. And on top of all that, he has to be fed through his G-tube, which is kinda like feeding a kid with a bottle, but through their tummy.


So with all those things comes the equipment that goes along with it. Everything needs to be washed and rinsed daily, if not after every single feed. On top of that, I am still pumping since my little guy cannot breastfeed completely yet, so that means all the pumping materials need to be washed & sanitized daily.


Oh, and another thing. Since I am feeding Colin breastmilk, the doctor's still want to make sure that Colin is growing as best as he can. So to make sure, we have to add special preemie formula to the breastmilk. The process of "making" my breastmilk is one that involves measuring, mixing, pouring, and calculating how many "feeds" are produced.


Once I have "made" my special breastmilk for Colin, it has to be used up within 24 hours (for sanitary purposes). Because that breastmilk is soooo special and precious, it takes serious calculations to make sure that I don't thaw too much breastmilk, or else I end up making too much that I can't use.


Have I mentioned the doctor's visits? In the 2 weeks since we have been home, Colin has had 7 visits. Some at Children's Hospital, others at various doctor's offices around the Valley. My poor nanny Courtney looks like "a pack mule" (Rich's words, not mine!). She helps me to carry his portable oxygen tank, his pulse ox machine that measures his oxygen saturation and heartbeat, and of course, Colin in his carseat!


I am terrified that someone will inadvertently try to sneak a peek at Colin and God forbid, touch him, so I keep him in his car seat covered until we are right in front of the doctor. So we lug all this stuff in his stroller, all the while I carry his diaper bag and large binder of medical information. Yes, I said a large binder of medical information!


But, all this hard work has certainly paid off. After a shaky start of only gaining an ounce the first few days he was home, Colin is really starting to take off. He is now 8 pounds! We have also weaned his oxygen down to .25 liters from half a liter, so hopefully we are soon on our way to no oxygen. 

Colin in his second favorite spot, with his "kissing" monkey pacifier!

Aside from venturing out to doctor's visits, I am still working my way up to just trying to "hang out" with Colin at home. Having my little guy with cords and wires makes simple things complicated. We have 2 oxygen machines in our house, one for upstairs and one for downstairs. Each one has a tube that extends 50 ft, so it allows me to roam that floor. However, his pulse ox machine has a very short leash, and must be carried around with Colin. So usually I end up putting Colin in his little bouncy chair and put it next to me while I pump, watch TV or work on the computer.

See the pulse ox machine in the background?

Only recently have I figured out how to use the body wrap's and baby carriers that can allow me to carry Colin hands free, however, that darn pulse ox kinda defeats the purpose of being "hands free". So then I contemplate taking a walk around the neighborhood. But then I realize that means I have to carry his portable oxygen tank AND the pulse ox machine again, so usually the lazy side of me wins out and we just stay at home doing this:

And I guess being snuggled in Mommy's arms is really all that he needs anyways, right?

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!