Whew, I am barely getting in this post under the wire! I promised myself at least one post a month, and boy, has it been challenging with a little one at home! So since we last updated you, we had been going to our ABM practitioner Brendan and had just finished an intensive session in San Francisco with a more senior ABM practitioner. Now, we are on a weekly schedule with our local practitioner, with 4-5 sessions each week. Colin has been responding VERY well to the therapy! His left hand, which usually is in a fist, is now open at least 40% of the time. That is HUGE for Colin. He consistently rolls from side to side, and while we put him on his tummy and he seems to not mind, he hasn't been able to get himself on his tummy. My mommy intuition is that his G-tube (which should come out at the end of November!) keeps him from naturally getting to his tummy on his own. So I'll be curious to see if he starts to roll on his tummy once the G-tube is out. Another thing that Colin loves to do is TALK (just like Mom!). Here is a video of our chatty little guy:
We are also working on sitting up, and we are making good strides! The one place that Colin seems to love trying to sit up is his bathtub. So we have started bringing his tub in his bedroom for him to play in, which he seems to enjoy. He also seems to enjoy water! Here is a fun video of his first time in the jacuzzi with Dad (sorry the sound of my voice is annoying!).
Other than that, we have just been very fortunate to watch Colin grow and make progress (even if it is slow!). I recently learned of another local preemie family who had a daughter born at 25.5 weeks (just like Colin), but sadly, their journey with their baby girl ended a few days ago. If you can take a moment, please read about their story and donate to their fundraising efforts to help pay for the funeral costs. Link for Baby Jade Hood
Although we have Colin's birthday, Thanksgiving and Christmas coming up (whew!), I'm still gonna try to do my best to post once a month, if not sooner. So to make up for the lost time, here are some fun pics from the last month:
I know so many of you have been breathlessly waiting for Part 3 of our journey with ABM. I have said this before, but I will say it again, life moves SUPER fast when you are out of the NICU! So in my search for an ABM practitioner, I was lucky enough to find one 10 minutes from my house. His name is Brendan, and you can learn a little bit about him and the practice HERE. My decision to start ABM sessions was not an easy one. The hard part was the fact that I was choosing to do what most in the medical community had considered "alternative therapy". NO ONE had heard of it, and every time I talked about it, I was usually meet with incredulous stares. Since we had already been working with a Physical, Occupational and Early Intervention Therapist, most wondered if I wasn't happy with the results that I had seen upon working with them. While this wasn't entirely true, a part of it was. Colin was scheduled to see each person 2x a week. Since there were 3 therapists, this would equal 6 visits a week, with most overlapping each other on the same days. Soon, our weeks were spent either preparing Colin for a therapy, or getting him rested before his next therapy. Physical therapy was definitely the hardest. While the therapist meant well, I could soon tell that Colin hated the stretching exercises and tummy time that she would do with him. It would almost seem as if a part of him would mentally "shut down" while she would start to work with him. The one therapist that I felt really connected with Colin was the Early Intervention therapist. Her work consisted of "play therapy". In essence, this required her to just play with Colin to engage his brain in learning about his environment.
However, in order to add ABM, the practitioner advised me of one slight, if not huge, detail. He himself was open to whatever I decided, but the founder, Anat Baniel, STRONGLY suggested that no other traditional therapies were done while receiving ABM lessons. The belief was that the ABM work would engage their brain to a whole new way of thinking, that engaging in traditional therapy would confuse the brain and not allow the new skills to be learned. Stopping all other forms of therapy seemed liked my only option if I wanted to have the best possible outcome with this therapy. When I told Colin's pediatrician that I was considering pausing traditional therapies in lieu of this one, I could instantly tell that this decision was crazy in her eyes. Mainly, most just wanted to make sure that this was not some scam bent on getting as much money from a desperate parent (since it is not covered by insurance or Regional Center, we are paying out of pocket for each session.) But after much prayer and discussion with Rich, we decided that giving Colin every opportunity out there would only help, not hurt him. And as a way to hedge my bet, I decided that I would give this therapy 1 month. If I didn't see any radical improvements after 1 month, then I would go back to our regular therapies. We started our sessions with Brendan in early August. The sessions take place at his home, and for the first one, Rich decided to tag along. We had no idea what to expect, and I guess that was a good thing.
The first thing we noticed was how quickly Colin started to respond to the work. While it doesn't look like much, each gentle movement seemed to awaken something in Colin. Soon into the session, he was babbling up a storm like we had never seen! Below is a recent clip of him having ABM therapy in San Francisco (I'll talk about that in another post!).
One thing that was amazing was after the FIRST session, Colin responded by relaxing his legs!!!!!!!!!! Why do I use the exclamation points with such excitement? Because this was something that Colin simply DID NOT DO before this session. Every time you would pick Colin up in the past, he would react by tightening his legs and back. This brain process was started early on in Colin's brain, and once we started Physical Therapy, it was something that we always tried to work on to stop Colin from doing it. But with the traditional therapies, nothing would work. But with ABM, it was as if his brain opened up and suddenly realized what we were asking of him. At this point in time, scientific work about brain plasticity is in it's early stages, but as a parent to a child with brain damage, I feel that it is IMPERATIVE to educate myself about this field. On an intuitive level, I have determined that getting new connections established in his brain is going to be the ticket in getting Colin to overcome his current physical limitations. And with each subsequent session, I am seeing this develop in his brain, and I know in my heart that this is working. I could go on and on, but here is a TED talks video by Anat Baniel where she explains about brain plasticity and how it shapes her work.
So please continue to pray for us as we go forth on this journey with an unknown destination. Prayers have gotten us so far, and I am excited to see how much farther we will go!
So in our last post, I talked about The Institutes. In this post, I will talk about the other therapy we looked into, The Anat Baniel Method. I was introduced to the Anat Baniel Method (or ABM for short) by many of the other preemie mommies that I have met online. I must say that I am very thankful to live in a day and age where connecting with other people in similar situations is only a few clicks away. So on many of the other Micro Preemie mommy blogs that I read, I kept hearing how many of them were doing a therapy called ABM. What is ABM? In short, ABM evolved from the earlier work of a man named Moshe Feldenkrais. His approach is more a form of self-education through movement as opposed to manipulative therapy that traditional therapies are based on (like physical and occupational therapy). What does this mean? In short, the therapy shows a person (or baby!) how to find their place in space by using movement. (This is the best way I can describe the method without having yet read Anat's book. I promise I will Lindsay!). Anat was a student of Feldenkrais, and she evolved the therapy into her own method that she calls the Anat Baniel Method (named after herself!). Here is a video straight from her website that includes testimonies and a description of the method.
How is ABM different from The Institutes? In short, you can bring your child to a certified practitioner who has been trained by Anat's center up in Northern California. For many of my fellow micro preemie mommies in other states, finding a practitioner was a challenge. For them, practitioner's were few and far between in states on the other side of the country, since it would require that those practitioner's would have to travel to get trained in Northern California, then go back to their home state to build their practice. And since this method is still in it's infancy of gaining acceptance, few practitioner's have discovered this method. In my search for a local practitioner, I was lucky to find out that there was one 10 MINUTES FROM MY HOUSE! Kind of a sign, huh? Each session would be similar in cost to a traditional therapy session, but would not be covered by insurance or our state Regional Center. Still, it was considerably less than The Institutes, and since a practitioner was so close to me, I figured ABM might be our method of choice. I know some mommies in other states who have to travel 4 hours to their nearest practitioner, or even travel out of state, so I feel pretty blessed in that aspect. So what would a session look like? Here is a sample video with a simple description:
While it doesn't look like much, I was told by our practitioner over the phone that in the FIRST FEW SESSIONS I would start to see results. Say what? Needless to say, I was intrigued............... (Part 3 to follow.........)
So in our last post I talked about therapies we were exploring for Colin. When we were discharged from the NICU, we were advised that we should start providing Physical, Occupational and Early Intervention therapies as soon as possible. The medical doctors advised us that this would give Colin the best option to overcome some of the setbacks he had from the NICU and overcome any physical disabilities caused by his brain bleed. As I have mentioned in various posts, in California, the state provides automatic funding for therapies for kids that were born with "An Established Risk Condition". In Colin's case, because he was born so early and suffered a brain bleed, he automatically qualified. However, the drawback to allowing the state to pay for the funding is that they mandate how many sessions they believe would be beneficial for Colin for a predetermined amount of time. For this reason, I decided to go through our insurance for his Occupational Therapy and let the state pay for the other two. I considered Occupational therapy as the most important one, because this was going to help him to transition from using his G-tube to eating by mouth. Well, we soon started all 3 therapies, and all were going good. Lucky for us, Colin didn't need much help with Occupational Therapy, and he switched from his G-tube to eating with a bottle with no problem. Yet over time, I was still feeling like the therapies were ALOT OF WORK. For those with special needs kids doing therapies, you find that your life is CONSUMED with so much time going to therapies, preparing for therapies, and planning therapies. And as you can tell below, sometimes it got to Colin too.
Colin pooping out DURING a therapy!
Colin seemed to enjoy his Early Intervention therapy very much. This therapy pretty much consisted of him "playing" with his therapist. Basically she would show him toys to help his eyes track, or expose him to different textures and sounds, etc. You could literally see his little brain light up with interest during this time. The other therapies really focused on having him meet his milestones for his age, like rolling over, holding his head up, etc. These he usually DIDN'T enjoy as much. He would be polite for the first 5 minutes, then the rest of the time, he would fuss and sometimes cry while he was put into positions he didn't enjoy, like tummy time. Tummy time is done by ALL parents to help ensure that their kids can be on their tummy to hold up their head and eventually crawl. (This is a little info for your non-kiddo parents!) So to make sure were were exhausting ALL our options, we started looking into alternative therapies. We focused on two: Anat Baniel Method and The Institutes for the Achievement of Human Potential. In this post, I'll talk about The Institutes. "The Institutes..." (for short) was recommended by Colin's wonderful NICU nurse Krystal, who has become part of our family and whose opinion we value MOST HIGHLY.
Colin getting some attention from Krystal on his discharge day!
She had known a few families that had gone through this program and had seen REMARKABLE results in their kids. Because she had this first hand knowledge, I was intrigued by what it could offer. In a nutshell, the Institutes was started in 1955 by Glenn Doman. Many of you are probably already familiar with him, as he created the "Your Baby Can Read" program. After working with many patients with brain injuries over the years, the Institutes created a program that they believe can reverse or eliminate the effects of brain damage.
Parents are required to travel to their center in Pennsylvania and complete a weeklong intensive training course that teaches them how to work with their child. The program that the child will complete at home is intensive, and consists of:
Patterning – manipulation of limbs and head in a rhythmic fashion
Creeping – forward bodily movement with the abdomen in contact with the floor
Crawling – forward bodily movement with the abdomen raised from the floor
Receptive stimulation – visual, tactile and auditory stimulation
Expressive activities – e.g. picking up objects
Masking – breathing into a rebreathing mask to increase the amount of carbon dioxide inhaled, which is believed to increase cerebral blood flow
Brachiation – swinging from a bar or vertical ladder
Gravity/Antigravity activities – rolling, somersaulting and hanging upside down.
Once home, starting the program requires 3 adults, completing some of these tasks daily every hour for a certain amount of time. Then the child is reevaluated over time, and the program is adjusted for the improvements. Below is a sample video of what a typical session at home would look like. No need to watch the WHOLE thing, but a few minutes of viewing and you will get the gist.
Here is another video that shows some of the equipment that parents would use at home.
Pretty intense, right? But look at some of the amazing results:
This little girl has similar issues to Colin.
For us, we are VERY fortunate to say that money is not an issue for us. We are willing to travel to the ends of the earth for Colin, no matter what it costs. And needless to say, this program not only costs money (not just to complete the course, but to travel there, buy the equipment, etc.), but would require lots of time and energy on our part. But was this the right decision?............ (Next post we will talk about the other method we were looking into, Anat Baniel Method).
I'm glad I have told myself that writing a blog post at least once a month is good enough. Because taking care of Colin and all of his special needs, while trying to have a life at the same time, has been challenging to say the least. So good for me that I am getting this post in ON THE LAST DAY OF THE MONTH! :)
Well, first off, Colin is HAPPY! I say this because 9 times out of 10, the first question out of people's mouth when they see us is "How is Colin doing?". And while I appreciate the concern, I don't think there is an understanding to what that question is really asking me. Because Colin has SOOO many things that we are following up with the doctor and therapists, asking how he is doing is like asking me how every part in my car is working. There are so many aspects that I could discuss, that I get stuck on how to answer. I wonder, do they really want to know Colin's entire medical progress to date? Or are they just trying to make polite conversation? And sometimes even when I answer "He's fine", I'll still get follow up questions. If I could share with you all what my mind is really thinking, I would tell everyone to first start out by asking me "Is Colin happy?". Because that is the one question that has an easy answer. 9 times out of 10, it will be a resounding YES!
Mom & Dad, I love you!
But since most of you are here to find out how Colin is doing, here is where I can get in depth and REALLY tell you all the nitty gritty details!
First off, Colin is now 8 months chronological, 5 months adjusted. Wow! In another 4 months, it will have been a year since we started this crazy journey with him.
When we first came home, Colin had no less than 6 doctors that he was following up with on a weekly basis, was on no fewer than 7 medications, and used various medical equipment.
Now, we are down to 3 medicines (and maybe even down to 1 by the end of the month!), he uses ZERO medical equipment, and right now, I can't even remember the last time we went to the doctor!
Even with these progresses, we still are facing the possible outcome of Cerebral Palsy (CP for short). This medical condition will have the most impact on his quality of life.
Here are two videos that I think provide a good description of what Cerebral Palsy is, and how it affects the body.
Because CP centers on brain damage, trying to somehow rewire his brain has been a hope and focus of ours.
Science has determined that in the first 2 years of life, the brain is still developing to it's typical fullest potential. While science has also discovered that even past the age of 2 the brain still has the ability to rewire itself (ala Gabby Gifford in AZ) making changes in these first 2 years of life can have the STRONGEST impact.
For this reason, we knew that really focusing on his brain gave us a better chance of fighting off or reducing the impact of Cerebral Palsy. To be clear, at this point in time, his doctors have not OFFICIALLY diagnosed Colin with CP. Because of the 2 year development of the brain, doctors usually like to wait until children have reached this age to say with certainty what type of CP a child could have. However if you saw Colin in person, you can see some possible early signs that CP is starting to affect parts of his body.
Because of these early signs, shortly after we came home from the hospital, we quickly started Colin on various types of therapies to help him reach milestones like rolling over, crawling, etc. While each have had their specific purpose, all of them for the most part overlapped. I may have mentioned these therapies before, but in case I didn't, he was doing a combination of Physical, Occupational and Early Intervention therapies. To get an idea of what we focus on during therapy with Colin, here is another video of a baby with CP (I'm assuming this child is 2 years of age or older). Colin does similar things with his body, and has been doing similar types of exercises. (It's kinda long, so watch enough until you get the gist, or watch it all, your choice).
While each of them seem to make some progress on what his body can do, overall it was hard to tell if they made a HUGE impact. So with the prodding of a friend, we decided to start to look into doing alternative therapies.
Our choices for therapy lead us down 2 possible paths: The Institute or ABM. What are these therapies and what did we choose? Well, stay tuned to find out in the next blog post, and you will be stunned with the outcome!
One thing my husband has always loved about me was my positive attitude. I like to think of it as my "can do" attitude. I hate thinking about how things "can't" be done, and like to think of how they "can".
Having Colin in my life should mean that having that optimism will get me through so many of the tough days ahead, especially because he is a preemie.
Yet lately I find myself trying to remember that side of myself every day, especially when his life presents a plethora of complex riddles and challenges.
On the whole, things are going "GREAT" with Colin. Since my last post, we are now 100% eating by mouth! Yay! That in itself should be a great accomplishment, so for the moment, I'll pat myself on the back *pat, pat, pat*. :)
Still, trying to enjoy this accomplishment has been hard because of several reasons. First, he started having constipation issues, and without boring you with the LONG details, after several different formula changes and interventions, we finally settled back to giving him what he had been drinking all along (Neosure formula if you are interested).
Continuing with the Neosure is not without it's issues, because his GI doctor has determined he has a Milk Protein Allergy (not lactose intolerant), and until he outgrows it around 1 year of age, he will continue to sound mucosy in his throat when he eats, and his poops look.....let's just say, not normal.
At the same time while we have been trying to continue feeding him by mouth, several "quirks" and problems have now presented themselves.
So the second hindrance has been that Colin has developed this weird habit of taking only about 1oz of milk for his day feeds, and then the rest of the time he twists his head from side to side like he doesn't want the nipple, but then gets mad when it is removed from his mouth. This makes feeding him a 2-4oz bottle take over 30 minutes if I'm real persistent. And that's if he even decides to finish it.
The last hindrance has been that when he had his pediatrician appointment this Wednesday, we determined that he was still gaining weight, and in the past week he had gained 7oz (for a current grand total of 12.7oz). Way to go Colin!
Yet.......I can't even revel in this accomplishment either, because the pediatrician has determined that this amount is not "enough", and that if he doesn't gain what she determines is "enough" weight by his next appointment in 3 weeks, I may have to go back to feeding him by G-tube during the night to increase his weight gain.
Which makes this head twisting thing frustrating, because now that he does this, it is all I can do to get him to consume the amount he used to take when he was feeding by G-tube. Each day he seems to be taking in less and less. Except for the early morning after he has slept 6-8 hours straight at night. Then he can take a 5oz bottle no problem! Go figure......
Am I sounding too Negative Nelly yet? Well, one last thing kinda sinks me even lower into negative thoughts. One that I'm almost afraid to admit for fear of hurting feelings or making others feel bad. Yet this blog is a place for me to vent and document my feelings on motherhood, and I guess I wouldn't be honest to myself if I didn't disclose them.
So what's this last revelation? Well, it seems that every little person around Colin's age (mostly his adjusted age, because let's face it, he is WAY off from other's at his chronological age) is doing things that seem so simple, yet so far off from what Colin can do.
Little things like standing on their legs with their parents help, or pushing themselves on the ground, or gazing intently at the world or people around them, or even just taking more than a 5 oz bottle like it's nothing.
I know, I know. Colin is on his own schedule, he will simply just do things a little different, blah, blah, blah. I know this, really I do.
Yet, why can't my mind just allow me to enjoy the little things that Colin can do? Like the fact that he can now hold his trunk upright with a little help from me so he doesn't fold over like a piece of paper.
Or his eye contact has improved to the point where he can stare at someone or something for at least 3 REALLY GOOD seconds.
Even the fact that he can suck a binky and hold it in his mouth on his own for at least a minute (and longer if I prop him on his side!).
Still, what kind of person am I that somehow these things seem trivial compared to the world around him. It breaks my heart knowing my mind thinks these things. And that is the conundrum that exists within myself every day.
The fact that one side of me is GENUINELY happy for these little milestones occurring in others lives, while another side of me is sad and perplexed that my little guy is no where even close to doing these things.
And how another side bursts with pride and happiness when Colin shows a small improvement in therapy, like reaching out for a toy or person in his vision, yet another side wonders why he can't hold his grip.
The only time that these other "negative" sides seem to go away is when I live life within the confines of my house, only seeing what is in front of me, and not paying attention to the fast pace around us.
Yet is this a way to live life? In a bubble? I know the answer is no, but still, I find myself wanting to. Wanting to keep the bursting pride of seeing small accomplishments in Colin as the only BIG thing that happens in the life around us. Wanting to forget that there is a time and place for things to progress in this life, and just wanting them to happen whenever they decide to, no expectations.
And I know it's there. The side of me that is still optimistic. Because that side is the one that tells me that things are going to be different tomorrow. That no matter what, one day we are going to wake up and Colin will be standing on his legs, or crawling on his belly, or even drinking like it's no big deal.
So I wait. Wait till I have come to the end of the day when I can tell myself that we have another WHOLE day ahead of us tomorrow. And I forget about the bubble bursting at some point, and just patiently wait for it to grow again...........
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:
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...........
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..................
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............
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.)
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?
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.........
