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!

You've come a long way baby!!!!!!

Today is little guy's 4 month birthday! Keeping this short & sweet, since my next blog post will be all about Colin coming home THIS WEEK!!!!! Details to follow soon. For now, enjoy the miracle........... 

What a difference a day makes.....

This title truly does say it all. No sooner had I written my last blog post did everything suddenly change THAT DAY! Let me explain.


We had noticed earlier in the week that Colin's use of oxygen was slowly increasing. At first, the nurses and doctors were not concerned, as they just assumed that Colin's lungs were just adjusting to find the right balance of how much additional oxygen he might require. However, by Wednesday, he was up to 2 liters of oxygen, when a few days earlier he was as low as a half liter. 


The doctors asked if anyone in our household was sick, and we said no. So if there was no sickness, another possibility was the dreaded "A" word: aspiration! It was speculated that since Colin was increasing his feeds by mouth, maybe a little bit was going down into his lungs and that was causing the lungs to look "wet" and made them work extra hard, therefore requiring more oxygen. 


To find out if he was aspirating, they scheduled a swallow study on Friday that would allow them to X-ray his throat as he was drinking his milk to see if he was aspirating. However, by the end of the day on Wednesday, they also realized that they had stopped his diuretics 5 days earlier, and that without the diuretics, it was probably causing his lungs to retain water (something that a preemie with Bronchopulmonary Dysplasia, or BPD/lung disease does). To see if it would make a difference, they put him back on diuretics that day. 


So by the time Friday rolled around, Colin's lungs were starting to improve drastically, and it was determined that weaning the diuretics too soon was probably the cause of him requiring more oxygen. However, since the swallow study was already scheduled, they decided to go ahead with it anyways just to rule out aspiration, just in case. 


Going into it, everyone said pretty much the same thing: "I'm sure Colin is not aspirating. He has never shown signs indicating he is. I'm sure this swallow study will be for nothing". Well, turns out, it wasn't for nothing. He was aspirating!


Not only was Colin aspirating, but he was doing it "silently". When this happens, a baby shows no outward signs that they are allowing liquid to go down their airway and into their lungs. Each time Colin took a sip of liquid, a little would go down his throat, and a little would go into his airways. They even tried to thicken the liquid, which sometimes helps them to coordinate their swallow better so they don't aspirate, but this didn't work either. 


So what does this mean? Well, the reason Colin is doing this is related to brain development. Because of his brain bleed and preemie status, he has delayed neurological processes. For this reason, he cannot coordinate his suck/swallow/breathe coordination......YET. The only solution for this to develop is to give his brain more time to develop. How long it will take, that is the ultimate question. 


Because Colin is already past term, any additional "unnecessary" time he spends in the NICU could be detrimental to his development. His occupational therapist put it this way: we could give him a few more weeks to see if his brain would develop this skill, and then re-evaluate him about a month later, all while he would stay in the NICU. However, if the skill didn't improve, then by that point, they would recommend a G-tube, and then send him home to to let his brain develop more.

OR


We could just opt for the G-tube now, and as soon as he recovers from the surgery, take him home, and let his brain develop. 


What would you do? Well, for us, we immediately thought it was a no brainer: G-tube now. 


Having a G-tube is not permanent, and as soon as his brain developed the suck/swallow/breathe coordination better, we can remove it. Plus, even with the G-tube, we can still practice feedings by mouth under direction/guidance by an occupational therapist, so the skills he has developed to this point are not lost. 


So Rich and I immediately advised the medical team that we would like to go ahead with the G-tube as soon as possible. Since he also needs surgery to repair a hernia, and a circumcision (yuck!), we wanted to see if they could do them all at once. 


After an upper GI and EKG to check out his heart was done today, he was given the ok for surgery. As of now, it is scheduled for tomorrow, March 6th, but since he is a low priority case, he could be bumped to the 7th or 8th. 


Everyone asks me how I feel about this. Well, like any diagnosis, my feelings run the gamut from relief, to panic, to sadness. Of course I am excited that this means Colin will be home soon (in 1 week if things go EXTRA smooth!). 


At the same time, my heart aches knowing that my only best option requires his little body to be subjected to more surgery. You would think I would be used to this by now, but I'm not. I think every time it has to happen, it has gotten harder each time. 


But what's the big picture? Colin is here with us. He can breathe (with a little help!), his brain is developing (with a little help!) and most of all, HE IS HERE WITH US! 


Is the future going to be a little tough? Sure, but every day that I can look into his little face and gaze into his little eyes, I am thankful. And that is worth any change that we have to be prepared for........