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..........