October

Weight (10/15): 10 lbs.
I know everyone is waiting to hear how we’re doing… I can tell that I’ve really fallen behind when I start getting emails from people asking for an update! J We’re still so touched at the number of people that rode the roller coaster with us, the number of prayers, and the love that we continue to feel. We couldn't believe that the website had 5000 hits by the time he came home, and is still visited so often! I also want to say thank you to everyone that sent things recently, we continue to get nice cards and gifts… it has been fun to check the mail! I can’t list everyone here and we will thank everyone individually, but I have to mention how appreciative we were to get the card and gift certificate from the 23 people at FPMI that have been rooting for Lucas (Danny’s associates in Alabama). It was so thoughtful of you all to send a gift for our son, especially not knowing Bran and I personally. The fact that you would care to follow his story and send a gift is really a testament to the Stisher family and how much Danny and Saundra are thought of.

It is getting tougher to stay on top of writing—we stay pretty busy throughout the day as we’re still on a three hour feeding schedule and having to hold him up upright afterwards for 30 minutes because of his reflux, then we have playtime and our therapy exercises a few times a day (and of course tons of snuggle time), lots of appointments, and on top of all of that I’ve had to spend a lot of time interviewing nannies for the past two weeks. Bran has also had a fair amount of travel for work lately too, so I’ve been solo in taking care of him and our list of appointments. Needless to say, sitting down at the computer and writing updates tends to get pushed to the side!

Everything is still going very well…Lucas is gaining weight steadily (10 pounds now, can you believe it?!) and so far we’ve been successful at keeping any sickness away (knock on wood), especially in light of the fact that one of the three kids has the sniffles or a cough every time they visit. I’m so paranoid about him getting sick (as the last time he got a cold, he was put back on oxygen)… but every day that goes by that he escapes it, I feel a sense of accomplishment and more confident. We just want him to get bigger and stronger before he has to fight his first cold at home, our biggest fear is something sending him back to the hospital (which is a true reality, the more I hear stories from other preemie parents that have had babies back in the hospital the first year).

He continues to do new cute things every day. He loves to sit in his bouncy seat and bat at the puppies hanging from the bar. When he does this, he gets so excited and fills our home with the sweetest cooing sounds… we absolutely love it! In fact, he’s talking away right now as I write this! It is hard for me to be looking at the computer screen and not be staring at him while he’s chirping and smiling. It just makes me laugh listening to all the different sounds he makes! I also got our first real smile two weeks ago (something I was really waiting for and working on!)… of course, I cried, and couldn’t wait to call Bran at work and to let both of our parents know! Since then, he’s been doing it more and more every day. I finally got a picture of it as you can see here (after more tries than I can count). He’s especially cute in the morning, I usually bring him in to lay next to us in the bed, and he gives us smiles and gets very chatty!

Our biggest challenge remains his reflux and digestion, and we’re continuing to try new things at the advice of the GI doctor. Just to clarify…many people think that reflux is just spitting up, but the true condition is when the stomach acid comes up half way and burns his esophagus (medically referred to as GERD). The nights are the worst, and tough for us to watch or listen, because you can really tell it is painful for him. It usually hits about an hour after he eats, and all of a sudden he wakes up from a peaceful sleep with big wide eyes, and start squealing in discomfort and kicking his feet. Sometimes it will last a couple minutes to ten minutes before he can settle back down, usually panting from the event. If he’s on my shoulder, sometimes he’ll thrash around and practically climb up my chest as it burns. I absolutely hate it!

Luckily we got in to see the GI doctor two weeks ago and I’m glad we were referred to this specialist so that they can focus in on this area and his overall nutritional needs (as the most important thing for his health to improve in many areas is to gain weight, gain weight, gain weight). The doctor changed his prescription from Zantac to Prevacid, which is a broader medication to control acid and was supposed to improve. For the first two weeks, however, taking him off the first medication made it worse and the squealing was happening about every hour through the night, as the new one didn’t seem to be working. So, this past Friday she told me to double the dose and thank goodness, I think we’re finally seeing some improvement.

She also told us to add a little oatmeal to his bottle to thicken the feed to make it less likely to come back up. With reflux, we have two issues to deal with…helping keep it down (which is why he takes Reglan to speed up digestion and move the food out of his stomach more quickly), and the Prevacid cuts down on the acid to eliminate the painful burning that he feels when it does come halfway up. We’ve had a few challenges…he didn’t like the cereal at first and started to refuse eating the second half of the bottle (which also may have been caused by the reflux during those two weeks where it was the worst…because after he would burp, he would be in pain and refuse the rest of the bottle). We backed off for a few days and now are starting it again in very small amounts to get him used to the taste. The oatmeal works wonders though (even though he’s only getting a tiny bit), when I went back to milk only for a few days, he was spitting up constantly.

I’m not going to go into details about his digestive issues (for reasons I don’t need to explain)… we’ve just had a lot of belly aches, crankiness, and trouble in that area since transitioning to formula (combined with the side effects of the medications), which the GI doctor is also helping us work through. Unfortunately, I could not keep up after all that pumping for six months and it was necessary to transition him to formula (which sucks because he never had a single GI issue when he was on breastmilk in the hospital)… but I guess it is better that we’re figuring out all of this now, rather than when I’m back at work, as we would have had to transition him eventually. The most important thing is that he received it the first six months and got him through the critical first few months born pre-term. I don’t know if I’ve really mentioned it in my updates before, but breastmilk for preterm babies is extremely critical and the milk of preterm mothers is actually very different than that of fullterm (with extra nutrients, proteins, and amino acids that preemies need). Our bodies are truly amazing, that what the mother produces is automatically adapted for the needs of a preterm infant.

We think he may have a milk allergy based on some of the things going on with him, so after 6 weeks with a milk formula, we’re now trying to introduce soy formula. The milk allergy may be temporary for the first year, and is not the same as being lactose intolerant, it just may mean that his system is too immature to handle processing lactose. This is what I mean by lots of trial and error… Its been exhausting trying to figure all of this out and making sure he’s getting enough calories every day! But if we can get this and the reflux under control (I think we’re close), I know he will be a much happier baby (it is the only time he gets upset… the rest of the time, he is a m-e-l-l-o-w little guy)! And, the sooner we can get there, the better he will eat and spread out his feeds past the three hour window (which will be great for Mom & Dad too)!

Our appointments at Children’s definitely went a lot better than seeing the Pulmonologist a few weeks ago. We saw the neurosurgeon and had a CT scan to check the shunt and the overall progress of relieving the CSF pressure in his head. Getting the CT scan was interesting… even though he had about 30 of them while in the hospital, we were never present for any of the scans. It was very intimidating, never seeing one of these machines before… and furthermore, having to place my tiny infant on this massive machine. He did great, it was Mom that was scared. I had to put him on this huge bed (a little larger than an adult hospital bed) and they had two metal sides that slid in to adjust to the width of his little body, then they tucked some padding at each side of his head to keep it from moving. I can’t even describe how little he looked, it seemed so unfair that he has to endure so many of these procedures. They gave me some sugar water to dip his pacifier into to keep him focused during the scan. They suited me up in a lead smock and left us in the room by ourselves, while the two technicians stared at us through a big glass window and talked to me through a speaker (I remember thinking it was just like on TV when they do an MRI). They turned it on and the bed moved slowly until his head was inside a huge cylinder that whirled around him taking images. It was very loud, and there were lots of lights flashing as it was spinning around his head. I thought for sure he’d be frightened (I would have been), but he seemed content with his pacifier. He was sucking on it pretty hard though, so maybe he was a little more bothered by it than I could see. Luckily, it only lasted for a couple of minutes and it was over in less time than it took to get him situated. I was happy when it was over, and I’m sure the next one will be easier because I’ll know what to expect. There was a little girl in the next room that we could see through the glass (2 years old) and she was kicking and crying not wanting to lay still… I asked the technician, “it probably gets harder the older they get, huh?” She laughed and agreed, that the infants are the easy ones!

Our appointment with the neurosurgeon, Dr. Yuan, went great… she was happy to see Lucas and kept saying how pleased she was with his progress and how healthy he looked. Everything with the shunt is good and the CT scan showed that there has been more brain expansion in comparison to the last CT taken in August (meaning the pressure from the fluid is still diminishing as it is slowly being relieved with the shunt and the brain tissue is expanding back and revealing that there is more healthy tissue there than what they originally thought a few months ago). There is still a lot of tissue that appears to be gone where the bleed occurred on the right side, and we will not know for another 1-2 years how much of the “missing tissue” is just compression due to pressure, versus loss of brain matter. Either way, the overall picture looks much more promising than it did in August, and also from May when we had the first view of the damage. She did say there is one area of concern… one of the ventricles is not reducing and looks like could possibly be expanding (there are four ventricles—and three of the four quadrants have shown a reduction). The way the shunt works, is that the tubing is placed in one ventricle and the four ventricles are supposed to communicate with each other… as one of them drains fluid, the others should compensate, keeping the overall fluid in the brain at the proper level. She said it is not uncommon for scarring to occur with meningitis, and that it is possible that one of the ventricles scarred and walled itself off from being able to communicate with the others. She is going to keep an eye on it (we go back in three months for another CT), and if the ventricle/fluid is the same size, then she will not worry about it. But, if it is larger in three months (meaning it is not draining, and continuing to build) then she would need to go in again and splice the tubing so that it is draining from two ventricles instead of one. Sorry if this sounds confusing, it is hard to explain without pictures. She told us not to worry too much about this yet, that it could possibly resolve on its own… but if not, a surgery will be necessary to correct it, which would be a 24-hour hospital stay.

The day of our appointments, we went up to the NICU to see our old friends since we had some time in between. Within minutes of me walking into the waiting area, word spread that we were there and it started a line of people coming to see him. Everyone kept saying “Lucas is here!” as they came to the window and out to the waiting room. It sounds like I’m exaggerating as I write this, but I’m not at all. It was so sweet and really warmed my heart seeing their reactions and genuine excitement to see him. We were happy to see Jackie again, who was the first one out the door, and then nurse after nurse came out to say hello (about 15 of them), including the transport nurse that met us at GW Hospital to move him to Children’s back in May. We saw a few of his doctors, and Sharon (the social worker) was so excited to hold and talk to him (they actually paged her from another area of the hospital so she wouldn’t miss him). They all kept saying how great he looked, and had gotten so big. Too bad his primary nurse Kristen has moved away, as we would have loved to have seen her (but we did get emails from her and Carrie the same week saying hello and checking in on him, which really touched us). I guess that happens when a baby is there for so long and wins over so many hearts. The people that work in that place are truly amazing. Another thing really stood out for me that day… one of the fellows, Tanya, was walking through the door with a team of doctors and residents for rounds (meaning she was busy)… but she made a point of stopping to talk to Lucas (really talking to him, smiling in his face and making baby talk)… she kept saying to me how great he looked. What was so special about this, is that she is one of the few that was there since the beginning (she was on staff at GW Hospital when he was born and I remember talking to her for the first time standing by his isolette a few days into his life (when everything was so new and we were scared to death)… and then she was on staff at Children’s during the latter half of his recovery and his discharge). You have to consider that when doctors are working on your baby as a patient, they are very clinical (they sometimes talk to your baby, but at a very surface level, and non-attached manner). It was so sweet to watch her really connect and be personal with him the other day, and to talk about how far he’d come. She should be just as proud as we are of him, because she was one of the people we are indebted to for getting him here.

His OT, Gabrielle, comes once a week to our house…she’s the sweetest girl and so good with him, and he really responds to her. He’s come a long way in a couple weeks...he’s almost able to hold up his head and is tolerating tummy time much better (actually, he’s figured out he can just lay his head down and go to sleep…ha). We are working on a few more things with OT… now it is eye contact and getting him to loosen up his shoulders and focus his head mid-line. He tends to turn his head to the side and looks upward, and rarely will look straight ahead (most likely due to all the time laying on his back in the hospital). His shoulders are pulled up too tightly, so we are working on stretching them downward and showing him more range of motion. He also gets overstimulated very easily with faces, and often looks away while you’re talking to him, so we’re doing a few things to get him over some of these sensory issues. She explained that preemies’ nervous systems are just so immature and it may take a bit of time to get him used to some stimulating things. It is interesting because when things are very quiet and still, he’s much more comfortable and able to make eye contact. Sometimes I wonder how much of this is from being a preemie versus just his personality, as I am very much this way and tend to get overwhelmed with lots of people and noise, and am much more settled and at peace when things are quiet and serene. We are also working on getting him to notice his hands and feet by bringing them together into sight at mid-line. This may seem like typical a baby thing that they will eventually do on their own, but the intent here is to help him strengthen, focus, and to “catch up” his time (considering that he is really 6.5 months old but at the developmental age of a 2-3 month old).

They also sent someone to our home to teach infant massage, which is proven to be particularly beneficial to preemies to enhance their growth, sleep, and socialization. She explained that this technique originally came to the US from India, where it was discovered in an orphanage where the children did not have the best medicine, nutrition or parental contact… but they were absolutely thriving and growing due to infant massage. He LOVED it…she actually said she was surprised that he took to it so well because most preemies initially show some signs of distress. He cooed during certain strokes, and at times was so relaxed with all of his little toes spread apart as I did his feet (so cute). I’m really excited to make this part of our routine, and so far he agrees!

Sorry for the long update, there’s so much to tell when I let a few weeks go by in between! We have five more appointments this week at Children’s, so I’ll try to let you all know later this week how they went. We are enjoying him so much, he just keeps getting cuter, and I personally fall more in love with him every day! I’ve read in several preemie books that it can take 6-8 weeks for mother and baby to truly bond when they come home after months in the NICU (it is typically two weeks for a normal birth). When I read this, I didn’t really believe it because I figured we were already bonded by spending every day together of his first 156 in NICU. We certainly had a bond through that experience, but honestly, something shifted recently here at home in the last week making me fall completely head over heels in love with this little guy. I know all mothers feel this, so I’m not saying anything that anyone with children doesn’t already know… but this has been a very long road and the most “non-traditional” way of getting here, and every day introduces new emotions. I loved him before he was even born, and it grew all the days we spent fighting for his life, but now it is something deeper than I can even put into words.

We’re excited to say we got clearance from the doctor to take a road trip and are heading to Ohio this Friday to spend a week, and we are looking forward to introducing Lucas to his many friends and family. We’re very much looking forward to seeing everyone! I'll have some new pictures up this week.