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?