"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Tuesday, September 28, 2010

September 28, 2010

I wanted to give a quick update. We called Neurology and Opthamology this morning because we were convinced last night that Benjamin was going blind. Opthamology wanted to see him today at Mass Eye and Ear at 1:00. After we scheduled the Optho appt., we heard back from Neurology and they wanted to see him immediately. I don't know if they thought he may have had a seizure, but they suggested we call an ambulance to take him into Children's. We decided to do that thinking it would get us in quicker, and the EMTs told us we had to go to South Shore Hospital first for an evaluation. The doctors at South Shore said Benjamin's pupils were actually responding to light, but it took awhile. We tried to get him to track and he eventually did that as well. They called the Neurology team at Children's, and they all thought it was more pressing for Benjamin to see his opthamologist. We left South Shore and drove him to Mass Eye and Ear where Dr. M was working.

Our wonderful opthamologist, who has been examining Benjamin's eyes since birth, said he's pleased with the structure of his eyes, but he is concerned about CVI and it's something we won't be able to know until later. Again, we have to wait and see. He does seem to think the problem could be the neurological meds Benjamin's on. We'll be discussing this with Neurology. I have reservations about he meds anyway. I would like to see how Benjamin does without them now that he's in a different environment, but unfortunately they're meds that have to be weaned. Anyway, Dr. M advised us to contact the Perkins School for the Blind because he feels Benjamin could benefit from the infant/toddler program they have. I'll be calling them tomorrow!

The first two years of life are critical as far as brain development goes. I'm determined to do as much as I can, and take advantage of the great resources (such as the Perkins School) that are available to us.

Sunday, September 26, 2010

September 27, 2010

Lately if Benjamin isn't sleeping he's crying. He had a rough couple of days last week. He had his flu shot and a few immunizations on Thursday and he was an absolute mess that night and the entire next day. I swear if he was hooked up to a monitor he would have been spelling all night. He's been a little better over the past few days, but definitely not the smiley baby we were getting used to.

We're extremely worried because he doesn't seem to be focusing as well anymore. I'm wondering if he can't see and this could be one of the reasons why he's more irritable lately. He used to love his mobile (he would actually track the animals as they spun around) and now we turn it on and he acts like he can't even see it. I'm afraid he has a condition called CVI or cerebral visual impairment. After researching, it appears to be commonly present in infants like Benjamin who suffer from PVL (periventricular leukomalacia). Basically his brain cannot send signals to his visual pathways. We have an appointment with opthamology on Thursday so hopefully they can give us some answers. We also have an appointment with neurology in a couple of weeks and my fear is if Benjamin is still irritable, they're going to want to increase the drugs.

I felt the need to update, but I really can't write anymore right now. We're emotionally drained.

Saturday, September 18, 2010


Does anyone know what day it is??? We've been home for awhile now and Benjamin seems to have his days and nights in check, but the rest of us don't!

He looks perfect, but in all honesty it's been hard to treat him like a normal little baby because of his neurological issues. A few days before we left the hospital we had a meeting with Benjamin's neuro team so we could have a better understanding of the new meds he's on and his condition in general. We were told that they are 100% sure he has cerebral palsy (although they can't officially diagnose him until he's 2) and they feel the type he has is spastic quadraplegia which, of course, is the most severe because all limbs are affected. We thought we had heard the worst, but this was just devastating. Every time we have to administer meds or set his feeding pump, we're constantly reminded of the struggles he's going to face.

As far as what we've been doing since he came home... we administer 8 different meds (17 total doses) between the hours of 6am and 9pm. He has to feed every 3 hours and we're doing almost exactly what they were doing in the hospital. He can nurse up to 2 times a day. Sometimes he does well, other times not so much. During the other feeds, we offer him a bottle and then what he doesn't take runs through the g-tube. If he's sleeping, we put everything through the g-tube.

He loves to be held and is getting spoiled rotten because the minute he cries, one of us runs right over to him and scoops him up because we still live in fear he's going to desat! He is sleeping in our room for probably the next few months and for a majority of the time we've slept with the light on because it was the only way I could tell he was breathing (my eyes would play tricks on me if the light was off). He does make some really strange noises in his sleep, like grunting sounds... if any of his night nurses are reading this... is this what he normally did?

We did make it outside for a walk today and I think he really enjoyed the fresh air! Hopefully the weather will stay like this for awhile so we can venture around the block a few more times.

He still has his fussy moments, but we get lots of smiles. Jadyn loves to make Benjamin smile and is an awesome big sister. I guess she's been talking about him quite a bit at school because all her friends and teachers knew he was coming home this week. She hasn't been able to go out much since he's been home, but she seems to understand and accept the fact that this is how it's going to be for awhile!

Friday, September 10, 2010

September 10, 2010

We got the greatest news yesterday when we went to visit Benjamin... he's coming home on Tuesday! We're still in shock because we didn't think this day would ever come. We've watched so many families around us leave with their babies and finally, after 6 long months, it's our turn.

We thought he would be in there for at least another month because he was going to have his hernia surgery, but his surgeon pushed it off for two reasons. The first is he still has some fluid in the area and she's afraid doing the surgery now will leave more of a scar than she would like. The second reason is he started two medications (Klonopin and Neurontin) for his spasticity (rigid tone from his brain injury) and she doesn't want to risk putting him under anesthesia until his body has adjusted to the meds which can take weeks. Bottom line is he belongs at home and it's time!

You hate to see your child on such strong drugs, but I have to say they seem to be working. He's not arching as much and he looks more relaxed and less agitated. Usually when we walk into the unit and he's not sleeping, we find him arched and screaming. Today I walked in and he was in his crib just chilling and smiling away. He was going to be fitted for a back brace, but because he's not arching as much, PT doesn't think he needs it right now. That's such a relief because the brace would wrap around his abdomen and we were told it would be horrible for his reflux.

Ryan and I have a lot of work cut out for us over the next few days. We're going to refresh ourselves on how to perform infant CPR, we need to paint Benjamin's bedroom, put the crib together, buy his carseat, learn g-tube care as well as how the feeding pump works and how to administer his meds, book follow-up appointments, fill prescriptions, etc.

I can't even believe that months ago, when we were talking about that day in the distant future when he would come home, we were told he would be coming home on oxygen, with a monitor and would need up to 80 hrs./week of in home nursing. He's NOT coming home on oxygen, he's NOT coming home with a monitor and he might get a visiting nurse to stop in for maybe a week. We're not going to get much sleep, but we could care less. We'll be able to pick him up without tripping over wires and more importantly we're going to get to bond with our baby and finally be a family.

Monday, September 6, 2010

September 6, 2010

Thankfully, Benjamin's white blood cell count has lowered and he seems to be feeling better, although he's had periods of extreme agitation lately. This irritability could be lingering pain from his surgery as well as a result of his reflux which is back full force. They started his feeds again on the 4th and he's tolerating them from a bowel standpoint, but he's having trouble keeping it down. He actually spit up twice today.

One thing we noticed is that he's been favoring one side when he's in his crib and unfortunately because we can't be there 24/7, he's not held as much and his little head is misshapen. I pointed it out to his nurse today because I was worried and she said he'll probably need a helmet. Good lord. I've started calling him my little handyman special!

His weight gain is still ridiculous... he's 9 lbs. 4 ozs. Ryan and I keep joking that he's not ours because we don't make big babies! Seriously though, he's got the chubbiest cheeks! We can't comprehend the obsession these doctors have with fattening up babies. It just doesn't make sense... he's got a tiny head and is only 19.5 inches long. I mean, come on now! We were told today that once he's reached what they consider "full feeds", if he's not gaining a certain amount of weight on straight breast milk, they're going to give him additional calories. Then I'm sure they'll tell us they're concerned because he hasn't reached his milestone of rolling over... well of course he won't do that because he's going to be so big it'll be too much for him to maneuver!

For those who have prayed with us that we get more smiles, we want to let you know that we have been. He's not only smiling more over the past few days, he's started cooing! He is the absolute cutest little guy.

Friday, September 3, 2010

September 3, 2010

We've had quite a few ups and downs over the past couple of days. Shortly after Benjamin pooped, they decided to start him on pedialyte and breastmilk. They began his feeds aggressively because he was losing peripheral IVs by the day and they needed to get meds and fluids into him. Unfortunately, when he began throwing up green bile, he was obviously not tolerating his feeds so they had to stop them. At this point he was in desperate need of that central line so on Wendesday he was intubated, put under general anesthesia, and after two hours, the Interventional Radiology team was able to insert a PICC line. I cannot even tell you what a relief this was. I was in the waiting room practically in tears because it was taking so long, and I honestly thought they couldn't get it and my baby would end up in the OR the next day for a cut down.

Once the PICC line was in, he started back on PN and the Intralipid (he's not able to get Omegaven because of the type of PICC he has so hopefully he won't have to be on the Intralipid for an extensive period of time). He had an awesome day on Thursday. Probably one of the best days he had. He gave me three beautiful smiles... he totally made my day!

I wish today had been as great. They discontinued his antibiotic yesterday and started him back on feeds and he's been miserable since early this morning. He was definitely not the relaxed little boy I saw the day before. He hadn't slept all day and his heart rate, which is usually around 110 and lower, was around 190 and even over 200 for a better part of the afternoon and he kept crying out in pain. They were giving him Fentanyl boluses, Tylenol, Atavan, Klonopin and Protonics (to help with the reflux), and nothing was working. He came down with a fever so they stopped his feeds again, took blood and an x-ray of his abdomen. He has zero veins left to draw from so thankfully they could take from the PICC line. His white blood cell count is elevated so they think he's come down with an infection. He's back on the antibiotic for now. Luckily his x-ray looked okay so hopefully the area we're most concerned about, the part where he was connected, is functioning properly. Even though he only had one reconnection, the two pieces of bowel that his surgeon connected have a fairly large size discrepancy (a ratio of 4:1).

I'm praying he has a better night and they caught whatever it is he has early on. People have been asking us how we're able to have the strength to keep doing this and it's been really hard lately because Benjamin is having such a tough time. I was on cloud nine yesterday when he was smiling at me and today I feel totally deflated.