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

Saturday, December 11, 2010

December 11, 2010

Benjamin turned 9 months old today. I know it's been weeks since I last posted, but not much is new in his little world. Shortly after my last update, we took a ride to pick out Benjamin's glasses. Yup, the little man will be sporting a pair of specs in about a month and a half (it takes forever and a day for Mass Health to ship the glasses). I'm praying so hard they'll make a difference. We've been trying to get him to look at us, his toys, anything; and if he does, it's very brief. It really worries me.

As far as the rest of him goes, he's definitely more alert, but the arching is getting bad again. Most likely because we weaned his Clonazepam (Klonopin) down almost by half. We're not scheduled to meet with neurology until January, but we may have to make a phone call if it gets any worse.

He's still nursing and we've been experimenting with solid food! We just touch it to his lips, and if he's in a good mood, he'll start smacking. It's very cute. Obviously he doesn't get much... the point is just to introduce him to new tastes and textures. So far he doesn't seem to mind bananas, squash and prunes.

Last week we attended a mass of remembrance provided by South Shore Hospital for those families that suffered the loss of a child. It was a beautiful service, but depressing. Sometimes we feel very alone so it was comforting to talk to others who have experienced loss. I can't believe it's been three quarters of a year since I had my babies. Every day that goes by, whether sunny or not, is still cloudy for me. I'm finding the holidays to be especially tough. I push forward, and for the sake of Jadyn and Benjamin, I put a smile on my face, but the pain over the loss of Stephen is still so fresh and raw. Not a day goes by that I don't think about him and wish with all my heart that he was still with us.

Saturday, November 20, 2010

November 22, 2010

The crazy schedule continues. We have quite a few appointments lined up at Children's in between all the therapy sessions.

Tomorrow we're at the Children's Clinic at Mass Eye and Ear. Benjamin's eyes are still a mess. He will focus, but only briefly and then his eyes will either cross or he'll drop his gaze. He avoids his mobile completely now, but for some reason he's fascinated by the warning label on inside of his carseat. Go figure.

He's actually going to see a urologist next week. When we met with the nurse practitioner and doctor in CCS (Complex Care Service) we went over, in detail, his medical history. I mentioned that he had a renal ultrasound a while back and we were told it was normal. Well, when they uploaded the ultrasound report, we found out that he does still have calcifications in his kidneys!

Benjamin's been working really hard over the past few weeks with his physical therapy and we're noticing a slight difference. His neck seems to be getting stronger, and his grasp is a little tighter. He's 8 months old, 5 months adjusted, and at about 1 month developmentally (at least that's according to the milestone charts I've found online). We have a long way to go, and it's unbelievably frustrating at times, but even the smallest amount of progress keeps us pushing forward.

We are still having major issues with the bottle, but I am cautiously optimistic because he's started nursing a bit again. Knowing Benjamin, this could come to a screeching halt, but hopefully not. It's a good thing I didn't stop pumping completely, but I have been trying to bump my supply back up because he's losing a little weight and it's not easy. He's still being fed at night continuously over the pump for about 11 hours. That being said, if he's not getting enough right now during the day, at least he's getting a good amount at night. When we met with CCS, he wasn't taking the bottle, he wasn't nursing, and he was spitting upwards to 4 times a day. They started talking about more surgery (possibly a nissen fundoplication or converting his g-tube to a gj-tube). We were adamant that he does not need the fundo or the gj-tube. Since that meeting, the reflux is still noticeable, but he only spits maybe two or three times a week. I think now that he's not spitting nearly as much, and he's obviously not in pain when he swallows (because he's nursing), I don't think the endoscopy is necessary either.

Let's hope the little man keeps up the good work and starts gaining some serious weight again!

Friday, November 5, 2010

November 5, 2010

Life sure isn't getting any easier for Benjamin or for us. He's been vomiting almost after every feed and even when we administer his meds now. It's really hard to get the reflux under control when he throws up his medication!

We were at Children's on Monday and Tuesday of this past week for an upper GI and a swallow study. The upper GI took almost 4 hours because Benjamin had to keep getting x-rays every half hour or so. It ruled out any narrowing or strictures in his bowel (which was such a relief). The barium swallow was done to determine if Benjamin could be silently aspirating. We were in the room the entire time and I can honestly say it was the most bizarre and disturbing experience. They sat Benjamin in this plastic seat and asked me to feed him a bottle of barium. He started screaming which I knew he would do because he has an oral aversion. I told them I wasn't comfortable feeding him like that, and asked if one of the techs could take over. After a few failed attempts with the bottle, they decided to try and spoon some rice cereal mixed with barium into his mouth. At this point he was sputtering barium and gagging. They then brought out a sippy cup and told us they would have to pour the barium down his throat! They handed him back to us and the poor little thing even had barium around his fingernails. He never aspirated, but the conclusion was he has trouble protecting his airway. Umm, do you think it's because he was screaming the entire time?!? Anyway, we now have to thicken his bottles with this gel-like substance called simply thick. He seemed to do well the first few times we fed it to him, but now not so much. We're going to try a thickening powder to see if that makes a difference.

We were busy the rest of the week as well. Benjamin had his first session with his teacher from the Perkins School on Tuesday morning. It was a shame he slept almost the entire time! He has an opthamology appointment at the end of the month and I think the recommendation for glasses is going to be sooner rather than later. He's starting to have a lot of convergence (his eyes are crossing) when he tries to focus. It appears as though he can see about 6 inches in front of him and then loses vision beyond that. He has been maintaing eye contact with me for longer periods of time when I hold him, but he's still not doing a great job of tracking.

On Wednesday his Physical Therapist from EI came over. She was able to show me how to move him into different positions to stretch some of his muscles. He has major sensory issues and she spent most of the time trying to calm him down and get him into a position he could tolerate. I've noticed when I'm holding him and he's comfortable and sleeping, the minute I move even an inch, he tremors and screams.

Thursday morning we were at the Outpatient Rehabilitation Center at South Shore Hospital for an OT evaluation. Again, the therapists couldn't do much with him because he was so sensitive, but were able to learn alot about him and they couldn't get over his eyelashes. Everywhere we go, that's the first thing people notice! I think we'll be at the hospital at least twice a week, if not three times (one day each for OT, PT, and Feeding/Speech).

Benjamin got his first Synagis shot Thursday afternoon. He was not a happy camper. Even before he got his shot, he decided to vomit all over himself. Good times. We cleaned him up and then it was time for him to have his shot. They split the dose into two injections, but were kind enough to administer them at the same time. Benjamin screamed so hard he actually held his breath and turned blue. The nurse blew in his face and he still wasn't reacting. She scooped him up and started patting him and finally got him to breathe. This happens almost every time he has an immunization! I feel so bad for him and he has to have this shot every 30 days for the next 4 months. I think Dad might take him next time!

Next week is going to be just as busy. We have a PT evaluation at South Shore Hospital on Monday, Feeding Tuesday morning, EI Tuesday afternoon, and we're back to Children's Friday morning to see a doctor in the Complex Care/Cerebral Palsy Clinic.

I feel bad because I don't have the time to do as much with Jadyn. She's been a real trooper and I've been trying to spend as much one on one time with her as I can... even if it means taking her grocery shopping at 8:00 on a school night! Bad mommy. I am also starting to realize how neurotic I've become. The other night I was taking Jadyn home from my parents' house. Benjamin went in one car with Ryan, and Jadyn was with me. She said "I should be next to Benjamin... he's not in this car with us and I can't tell you if he's breathing!" I didn't know whether to laugh or cry when she said that.

Friday, October 22, 2010

October 22, 2010

Yesterday was an extremely long day and we're glad it's over. Our first appointment with Neurology (the one I was dreading the most) went as well as it could have gone. We saw two neurologists and they actually thought the spasticity (rigidness) in Benjamin's legs wasn't as bad! They decided to cut back on his Clonazepam (Klonopin) because although it relaxes the muscles in his legs, it's not helping the hypotonia or low tone throughout the rest of his body. It also sedates him so hopefully now he'll have more alert time. The attending neurologist also stressed the importance of Benjamin taking the bottle and not relying on the g-tube. He said this is the age where babies lose the suck reflex and it's crucial that he maintain it. He will be sending his report with a CP diagnosis to Early Intervention so Benjamin will be guaranteed the three years of service which is good, but a reality check for us.

After Neurology, we were off to the Pulmonary Clinic where Benjamin's pulmonologist put the fear of God into us. We're waiting for our insurance company to give the okay and schedule delivery of Benjamin's Synagis vaccine (to prevent RSV) to his pediatrician. Dr. R asked us if Benjamin has had his first dose yet and we said no. He said the minute it gets to the pediatrican's office, Benjamin has to have it. He also wrote a prescription for Benjamin to have an aerochamber spacer. Basically a fancy sounding name for an inhaler with a mask. We'll use it if Benjamin should get a cold. We also have to keep a log of his daily respiratory rate.

The last stop of the day was the CAIR clinic (Center for Advance Intestinal Rehabilitation). I was most anxious to go to this appointment because I wanted to talk to a GI specialist to get Bejamin's reflux under control. It's getting worse and he's starting to develop an aversion to the bottle. They decided to stop his Erythromycin and told us to try additives that are vanilla flavored. They're allowing us to refrain from using the pump during the day and only give him the bottle as long as we add the calories to the milk. They want us to continually feed him overnight through the pump which I'm not thrilled about, but they think it'll help with the reflux.

I think he's starting to associate the bottle with painful reflux. It's taking longer and longer to get the milk into him and he screams almost the entire time and then usually chokes. I'm the only one he'll take even the smallest amount from and it breaks my heart to force him to eat, but I'm persistent. It's so sad... the minute I sit down with him and he feels the bottle touch his lip, he goes crazy. It took me an hour and a half tonight to feed him an ounce. What should be an enjoyable experience for him has turned into torture. His pediatrician almost tripled his Zantac dose today and I'm praying that makes a difference. If not, we'll try to switch him from Prilosec to Prevacid.

Thankfully our appointments at Children's will not be as frequent anymore (we'll be there once or twice a month), but Benjamin and I are going to be busy, busy, busy! EI will come and assess him next week and hopfully they'll start therapy a week or two after that. Also starting in November, Benjamin's teacher from the Perkins school will be coming out and we'll be making trips to South Shore to meet with a Feeding Specialist and get additional PT and OT. Benjamin's pediatrician and I agree that this time in Benjamin's life is so important and we need to hit the ground running!

Tuesday, October 12, 2010

October 13, 2010

It's hard to believe Benjamin is 7 months old. At least half a dozen times when we're at Children's for an appointment, people have asked us how old he is and we have a really hard time answering that question. I start off by saying, "well, he's 7 months." The usual reaction to that is a raised eyebrow, so then I feel as though I need to explain and I launch into the following. "He's so little because he was extremely premature. If he was born on his due date, he wouldn't even be 4 months old." Blah blah blah. I think we may just start telling people he's almost 4 months. But, that's going to get tough because developmentally he's already way behind and I'm sure within the next few months that's going to be even more detectable.

Early Intervention will be coming out in two weeks to do an assessment and hopefully Benjamin's therapy can start shortly after that. He's showing more symptoms of the CP which is heartbreaking. He's got hypotonia, really low muscle tone, in his neck and trunk (I think that could be the reason why his breathing is so shallow) and increased tone in both his legs. We've been trying to work with him at home, but it's hard because we don't know what's most beneficial and what could possible harm him. We have him spend a lot of time on his tummy, but it's been more challenging for Benjamin because of the g-tube... I'm sure laying on a button sticking out of his stomach isn't very comfortable! He's also giving us a hard time when it comes to taking a bottle. He's stopped nursing, and now usually screams, turns red and tremors when you put the bottle in his mouth. This morning it took me almost an hour to get 55 mls into him. He likes leisurely sucking the bottle while he's in my arms and I'm walking around the house. Who would blame him for not wanting to stay in one spot after being in a hospital bed for 6 months? But jeez, the kiddo weighs over 11 pounds now and it's not easy lugging him around! But we'll do whatever it takes to get him to enjoy his bottle again. He used to do such a great job and now it seems like a chore to him. A few weeks ago I was sure we were on our way to getting rid of the g-tube and now I think he's going to have it a lot longer than we anticipated.

I think this is the first week that we don't have to drive into Boston for a clinic appointment. It's nice for Benjamin to have a break because let me tell you, those appointments aren't necessarily quick check-ins! It's great when we can schedule more than one appt. on the same day, but it's draining. Next Thursday we see Neurology, Pulmonology and Intestinal Rehab so we'll be there from 8am until probably 4pm. Plus, every visit almost inevitably involves a trip to the lab for bloodwork. Not fun for Benjamin or his mom and dad. In a couple of years, I forsee a stop at Toys R Us on the way home from these clinic appointments!

Aside from trecking back and forth to Boston and to Benjamin's pediatrician, we've been shut up inside the house trying to keep Benjamin healthy and both kids on some sort of schedule. We know there are a lot of people anxious to meet the little guy, but we've been told to keep everyone at bay until the winter months are behind us. We've even asked immediate family to keep visits on the shorter side because the scary part is that we can feel absolutely fine and still transmit germs to Benjamin! He will be receiving his first Synergist shot in early November. This will help prevent RSV which can be serious for babies with compromised immune systems. When we go into town, whether rain or shine, we actually keep a plastic rain cover over Benjamin's stroller. You'd be amazed at the number of people that want to stick their heads right in his face!

I haven't been as great about updating the blog and hopefully as things get a little easier around here (if that's even possible) I'll have more time. We think it's absolutely wonderful and heart warming when people tell us they've been following Benjamin's blog. Thank you.

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.

Sunday, August 29, 2010

August 29, 2010

Benjamin's still having some pretty severe spells. One of which happened only a few hours ago. Thankfully he hasn't had to be intubated, but we're walking a fine line. He's been almost comatose the past few days and he actually cried for about 15 seconds today which we were told is a good thing. We can tell he must be feeling a little better because he'll occasionally wake briefly and try to arch. We were actually hoping this whole experience could deter him from arching if he thinks it might bring him more pain.

They decided to hold off on the arterial line today, we're not exactly sure why, but there's a small, teeny tiny possibility that he may not need one because he pooped! This means he has motility in his bowel. We've never been more excited about poop in our lives!! We weren't there when he did it, but when we got the call from his nurse we were so close to asking her to save the diaper for us so we could see it ourselves. I know, it sounds totally gross, but this is such a huge deal.

Saturday, August 28, 2010

August 28, 2010

Benjamin seemed slightly better today after his doctors and nurses fine tuned his pain management. He's actually on double the narcotic (Fentanyl) that he was on last night and getting a number of boluses in addition to the continuous drip. He had one really bad spell around 3:45 this morning where he needed intervention; however, the rest of the day he would have episodes, but was able to bring himself back on his own. Unfortunately, the smallest little thing like taking his temperature or blood pressure sets him off. We would see him start to stir and hold our breaths hoping he wouldn't spell.

They haven't felt the need to intubate him yet although he is working so hard to breathe. They did attempt to try and get a central line in today with no luck. The last option is to do an arterial "cut down". They'll make an incision, lift a good artery and thread the catheter directly in instead of poking through the skin. If he's stable enough, he'll most likely have to be intubated and go to the OR for that. Ryan and I know it has to be done, but we were really hoping they would give our baby a break.

Four days ago we were cuddling with him and now we can't even touch him. It breaks our hearts.

Friday, August 27, 2010

August 27, 2010

We should have known, given Benjamin's history, that a smooth post-op recovery would be too good to be true. He's had a really rough day and so have we. Benjamin had two serious spells. It was like reliving a nightmare. We weren't there when it happened this morning, but we were there this afternoon. We weren't in his room at the time, but heard the alarms go off and just knew he was the one that coded.

Right now he's on the high flow nasal cannula, requiring 40% oxygen and working really hard to breathe. The pain management attending checked him out around 8:30 pm and said Benjamin's epidural isn't functioning properly. Basically we think he's in so much pain that he's actually shutting himself down. We're fully expecting he'll end up intubated by morning, but we're hoping that won't be the case because he'll take some major steps back. He still has the epidural in because they think it's helping a little bit, but they also started a Fentanyl drip.

Depending on how he's doing, the plan is to put in a central line tomorrow (if they can). They tried to get another peripheral IV and couldn't even do that. He's going to need PN and Omegaven again so they really have to find a good artery!

This is so unbelievably hard to deal with right now because he looked great immediately after surgery. Seeing your child in pain is the worst feeling in the world. We can't even hold him. All we can do is touch him, tell him we love him and that he's doing a good job.

Thursday, August 26, 2010

August 26, 2010

We are so relieved that today is finally over. When Dr. Buchmiller told us his surgery could last all day, she wasn't kidding. They took Benjamin down to the operating room a little after 7:45am and he did not return to the NICU until 5:45pm. Here's a recap of the day.

7:00am - Ryan and I arrived at Children's to a comfortably sleeping Benjamin

7:30am - The anesthesia team arrives for transport down to the OR

7:45am - We give kisses to Benjamin and make our way to the family waiting room

7:50am - I have a mini breakdown and start crying

8:15am - Dr. B finds us and tells us that the anesthesia team is working on Benjamin and he's starting to drift off to sleep. She tells us her plan is to put a central line in before they get started.

9:00am - We give consent for Benjamin to have an epidural placed

10:30am - We see Dr. B again... wait, she's not supposed to be here! I start to panic. She pulls us into a private room so we can have a talk. She proceeds to tell us that they're having a hard time getting a central line in. They were able to thread it into the artery above his clavical, but instead of going towards his heart like it should, the line kept going up his neck. When they went to pull it out, the wire frayed and a small portion is now stuck inside of him. My response: "You've got to be kidding me! This cannot be happening." So to make a long and complicated story short, he now has a piece of wire inside of him that will stay there forever because it's too close to major vessels to try and remove. She continues to tell us that they're going to try the other side.

12:30pm - The liason nurse comes out to give us an update: "Benjamin is presenting a challenge... they still can't get a central line." I start to cry again. My poor baby has been intubated and under anesthesia for at least 4 hours now and they haven't even made the first incision!

1:20pm - We get another update. They were unable to get a central line, but have started the surgery anyway.

3:00pm - Bowel reconnect complete, starting on hernias.

4:45pm - Dr. B comes out and tells us that Benjamin did well, she's really happy with the reconnect and the g-tube, but could not complete the hernia repair. She tells us it's not a big deal and she'll do it either before he comes home if he's stable enough or at some point in the future. She then told us that anesthesia was actually waiting for him to wake up because they wanted to extubate him. Our response: "WHAT??!! Are you serious??!" We thought for sure he would be on the vent for awhile.

5:45pm - Benjamin is rolled back into the NICU, batting his beautiful eyelashes and breathing on his own.

We left the hospital around 8pm as Benjamin was falling asleep. The only concern at this point is his urine output. We're having flashbacks to 5 months ago when he went into kidney failure. Hopefully he'll start producing some urine within the next few hours.

All in all, today had a rocky beginning, but a great outcome. Thanks again to those who sent us texts and emails. You have given us strength and hope and we are unbelievably grateful.

Wednesday, August 25, 2010

August 25, 2010

In about 8 hours Benjamin will be heading into what we hope will be his last major surgery.

Because he was so unstable when he had abdominal surgery five months ago, his surgeon did not have time to check the bowel below the two perforations she found. She decided to perform two studies earlier this week, a barium enema and a stomagram, so she could have a better idea of the quality of the inside of his intestines and colon before she opened him up. The barium enema showed no strictures (blockages or narrowing) which is such a relief! Remarkably, the stomagram showed the same. The surgical team was surprised, as were we, considering how severe his case of NEC was. Let's just hope the outside isn't an inflamed mess.

While she has him open, Dr. B will also instert a g-tube. We can say bye bye to the ng tube! Although we're not thrilled to have yet something else sticking out of our little boy, it'll come in handy for his meds and alleviate any stress if he refuses the bottle when he comes home. We're hoping his reflux might get a little better once that ng tube is removed too.

Benjamin also has two hernias. Again, if he's doing well during the surgery, those will be taken care of as well.

We appreciate everyone who has reached out to us in some form to let us know that we have been in your thoughts and prayers. Tomorrow is going to be a long, stressful and emotional day and we need those prayers more than ever. We do not know how long he will be in the OR, but Dr. B has booked her entire day for Benjamin. I'm scared because I don't want to see him in pain, and would switch places with him in a heartbeat if I could.

Wednesday, August 18, 2010

August 18, 2010

As you know, the NICU at MGH had to close it's doors for awhile. The plan was for Benjamin to have the surgery at Mass Eye and Ear and then be transported back to Children's. Although he does love his bumpy ambulance rides, it wasn't the ideal situation right after surgery so we were relieved when the NICU reopened on Monday and he was admitted on Tuesday. I am actually writing this post from Benjamin's private room. For those who luckily haven't had to visit, it's quite an impressive hospital and he has the most beautiful view of the Charles River. It's been kind of a treat for us to stay here! We actually saw one of the nurses from Boston Med down in the cafeteria this afternoon. We thought that was kind of cool! Speaking of Boston Med, what an awesome show that was! If you haven't seen it, I highly recommend you watch it. Some of the episodes were a bit tough to watch because they really hit close to home and brought back horrible memories of waiting on pins and needles every time Benjamin was in the OR.

We were up bright and early this morning to prep for surgery and Benjamin did wonderfully. His left eye was the one that was operated on; however, upon examination this morning, his surgeon said the right eye was worse than he originally thought. As of right now, he think Benjamin may need additional laser treatment in both eyes, but no more surgeries like the one he had this morning. The laser surgery is something they can probably do at his bedside again once he returns to Children's.

Anyway, we're one surgery down, one more to go. We were told today that once he returns to Children's (which will most likely be tomorrow), he'll have a few studies done so his surgical team has a better idea of what they'll find when they open him up. I've been nervous over this surgery for awhile and I'm starting to get extremely anxious. We'll need lots of prayers next week. Although we're getting closer to coming home, this is going to be a long and difficult surgery and Benjamin is going to take some major steps back.

Thursday, August 12, 2010

August 12, 2010

Today was a very emotional day. After my last post, we found out that MGH has closed the doors of it's NICU and PICU for an indefinite time. Since Benjamin's bowel surgery is only two weeks away, it was decided that he would go straight to Children's from his eye appointment at Mass Eye and Ear. In all honesty, we know this means we're getting closer to Benjamin coming home, but we just weren't ready. I spent the half hour before the ambulance left this morning choking back tears and giving hugs goodbye. I promised all of Benjamin's doctors and nurses that we would come back for a visit, and we couldn't wait to be on the other side of the special care nursery doors! I had it under control while we were en route (partly because I was kept amused in the ambulance when the EMT let me push the button to sound the siren... it was really cool) and during Benjamin's eye exam (which was not so cool). It wasn't until the South Shore team left us at Children's that my eyes started to well up again and I wanted to scream "please don't go!" It was so sad! Thankfully we were coming back to a familiar place and warm, friendly faces. We're even in the same Bay and bedspace. It's like we never left.

Benjamin also spent most of the day crying (except during the ambulance ride of course). We left him at 9pm and he was hoarse from all the screaming and spitting up he did. Although he's going to get exceptional care at Children's, we know he's not going to get the sleep he needs. He's going from a level 2 nursery back to intensive care (level 3) and it's much louder. The only thing he'll maybe enjoy is the natural lighting.

He'll have his eye surgery probably next week (the two hospitals are trying to work out the logistics). All I can say is please God let this next month fly by as fas as the last month has!

Monday, August 9, 2010

August 9, 2010

I have about 5 minutes for a quick update (sorry it's been so long)! Benjamin has made some significant progress over the past week or so. He's off oxygen! He's been off since 7/31. He tends to drift a bit at times, but just when we think he may need the cannula back on he pops his saturation back up! We know when he has his major surgery he'll need to be intubated, and we'll start the process over again, but we're so proud of him... his doctors at Children's told us he would be on oxygen for a very long time. I don't know how many times I say he's amazing, but he truly is AMAZING!

He's taking about half of his total daily feed volume by bottle. This is huge!! He does have really bad reflux so sometimes what goes in comes right back out. But, the fact that he can do it is so promising. Remember how I said he was being tricked and they were slowly adding calories to his milk thinking he wouldn't catch on and notice the difference? Well, the little bugger caught on. Now he's getting straight breastmilk in the bottle and whatever he doesn't finish he'll get calories added to it and it'll go in by bolus or over the pump. What's unbelievable is he's still growing a lot, even without the added calories! We could never have dreamed this possible. He's actually over 8.5 pounds.

We finally have a bowel surgery date. He'll be going in on 8/26. Just a few weeks away. If he needs eye surgery (and we'll find out on Thursday), he'll stay at MGH and then probably go right to Children's. We have a rough couple of months ahead...

Thursday, July 29, 2010

July 29, 2010

What a long and strange day it's been. We're relieved to be able to return to South Shore, but unfortunately that doesn't mean all is well. The laceration Ben has on his left cornea is a major contributor to the "fold" that's pulling on his retina. Absolutely nothing can be done about that scar. There is a pocket of vitreous fluid that may also be exacerbating the fold; however, this doctor we saw today does not want to perform surgery yet. At this point the risks of the surgery (potentially causing more damage to the eye) outweight the benefits. In addition to the fold, the vessel growth behind the retina isn't centered (again because of the scar) and that can't be fixed. Bottom line is he's going to have extremely poor vision in that eye. Vision in his right eye will be better, so he'll most likely have to wear a patch on that eye so the bad one doesn't become lazy. As seems to be the case, we're experiencing what we were told at Children's would be "the worst case scenario." He'll go back to Mass Eye and Ear in two weeks for a follow-up exam and then the doctor will determine whether he thinks performing surgery to remove that pocket of fluid will lessen the pressure on the retina from the fold. If he wants to do the surgery, Benjamin will be admitted that day to Mass General (if there's a bed space) and he'll have surgery the following morning (if there's a 7:30 slot available). We never really expected to hear that they might not be able to do anything more for his eyes. It's so depressing.

I mentioned above that our day was strange as well and I feel as though I should explain. For those of you who aren't familiar with Mass Eye and Ear, there is no special ambulance entrance. Benjamin's transport system (which consisted of an incubator on a stretcher with a monitor on the top, oxygen underneath, and medical emergency bags behind) was wheeled right through the main doors and into the lobby. We, and when I say "we" I'm referring to Benjamin (who was contentedly sucking on his pacifier), myself, two EMTs, and three South Shore NICU/SCN team members (a nurse practitioner, respiratory therapist, and transport nurse), proceeded past onlookers and to the main elevators. As we were waiting for the elevator, there was a sweet little old couple incredulously staring at Benjamin. The man pointed and said to his counterpart (probably his wife, but you never know nowadays) "there's a baby in there!" She responds "a baby? A BAY-BEE??!!!" The look on her face was priceless and the way she said baby (BAY-BEE) gave us all a good laugh. Ryan had already checked Benjamin in and was there waiting for us when we reached the 12th floor. Because the contraption Benjamin was in is so large, they were trying to figure out where to have us wait and ended up putting us in a waiting room across the hall. After waiting more than an hour, the doctor came into the waiting room and decided because they didn't have an examine room large enough for the incubator, he would just do the examine right in the waiting room! At this point we were all stunned. The other patients were asked to leave, Ryan stood guard at the entrance, and the doctor actually performed an exam. Mind you this wasn't a basic 10 minute exam. Oh no, he also had a technician come in and take digital images AND another one to come in and do an ultrasound. All in the waiting room! Poor Benjamin will probably experience the same scenario in two weeks. I must say he was such a little trooper and again LOVED his ambulance ride. His vitals were rock solid as long as we were moving!

Before I say goodnight, I must thank Lori, Amy and Laura for their patience, time and assistance today. The snacks were a nice gesture too! Benjamin was lucky to have such a wonderful and competent group of ladies taking care of him, and we were just as lucky to have such great company. What could have been a potentially anxiety ridden situation for me, was instead one that we could joke about.

Tuesday, July 27, 2010

July 27, 2010

Just when we feel as though we're on the right track and it's full speed ahead, we get derailed. Today may have been the straw that broke the camel's back. You know you're not going to get good news when you find out the medical director at South Shore has been spending most of his morning on the phone to Children's with your son's medical records in front of him. To cut to the chase, Benjamin had his eye exam last night and it did not go well.

Okay, so we're thinking Benjamin has to go back to Children's right? WRONG! Oh no, apparently Children's, the mecca of all hospitals, can't handle this! They have referred him to Mass Eye and Ear. Apparently there's a doctor there that specializes in this surgery that Benjamin will most likely need. (I confess, I googled him and he is quite impressive.)

It's a good thing Benjamin loved his bumpy ambulance ride a few weeks ago because he will be taking another one on Thursday. We were told if he does have the surgery, he will spend some time (we're hoping only a few weeks at most) in the NICU at Mass General Hospital. If he doesn't need the surgery, he'll be brought back to South Shore.

Seriously though, have we not gone through enough??? This would be a lot easier to handle if we knew we were headed back to Children's where we could at least have some sense of familiarity. Please keep Benjamin in your prayers and we'll update as soon as we get more information.

Thursday, July 22, 2010

July 24, 2010

They cut back Benjamin's calories this week because he's been gaining so well (he lost 7 grams yesterday, but overall he's averaging more than 30 grams/day). The chuncky monkey is about 7 lbs. 3 ozs! He's been drinking his bottle like a champ (he's up to 7 parts breastmilk and 3 parts fortified); and because he loves it so much, they've increased his bottle feeds from 10 mls to 15 mls. After he gets a bottle, his nurse will bolus feed another 15 mls (the milk hangs from a syringe and drains through his ng tube by gravity over a few minutes) and then they'll run another 31 mls by continuous feed over an hour and 45 minutes. During the last 10 minutes of his continous feed, he gets extremely uncomfortable (tons of gas and reflux) so we're not sure this is the best feeding plan, but it's keeping him satisfied and he's obviously absorbing plenty.

He had a minor setback this week. He got his 4 month immunizations on Tuesday and had a reaction to them. He was super irritable Wednesday and his cry wasn't a hungry cry, it was more like an "I'm in pain" cry. He was spelling more than usual and there was definitely something wrong. When we were changing his diaper we noticed his right thigh had a red lumpy spot about the size of a quarter around the area where the shot went in. The doctor marked the outer area with a pen so they could make sure it didn't spread, put a heating pad over it, and ordered more Tylenol. As of yesterday, it looked much better and he seemed back to his normal self.

They actually tried to take him off the oxygen a week ago and he lasted about an hour before he started losing his saturation. He's been weaned down to 25 mls and most of the time he manages to get the prongs out of his nose (at times they end up almost in his mouth or sitting on the bridge of his nose) so he's barely getting a whiff. Apparently he needs just that little bit though! Because he's been so reliant on his oxygen, he had an echo this week to rule out Cor Pulmonale (a condition in which the right ventricles of the heart become enlarged and thickened and result in heart failure due to pulmonary hypertension). Thankfully his heart looked fine! They'll repeat the echo in a month to see if there are any changes.

The big question everyone keeps asking is when is his surgery going to happen? The answer our friends is not too soon. The bigger, the better. We know his surgeon's in no rush, and we obviously want to minimize his recovery time post op, but we would like to get him home at some point!

Although I love being one step down in the Special Care Nursery because it's not so intense as the NICU, it's still hard because we see families getting discharged after only a few days or weeks all the time. Last weekend I was in the elevator on my way up to see Benjamin and there was another couple in there with parent badges. The dad noticed mine and said "you're part of the club too huh?" I said "yup, we've been in the hospital for 130 days... we were here for 2 weeks, went to Children's for a few months, will be back here for awhile and then back to Children's... how about you guys?" I don't think the dad really knew how to respond and said "it's only been three weeks." I think their child was discharged a day later. We're at the point where we want to take our baby home. I want to be there in the middle of the night when he screams to rock him, and more importantly, I want him to bond with his sister. I won't lie, this has been extremely difficult for her.

Saturday, July 17, 2010

July 17, 2010

Benjamin is thriving at South Shore! In just one week he gained over 1 lb. He's now 6 lbs. 12 ozs. and completely out of his preemie clothes. We were wondering if such a dramatic weight gain over a small period of time was a bad thing, but his team seems happy and will keep him at 30 calories. He's still doing well with his bottle, although he can detect the additives and will usually spit it out and scream bloody murder until he gets straight breastmilk. It's kind of amusing. But, he has to get used to the taste because he'll most likely need the extra calories for a long time. That said, they're trying to trick him by adding a small amount of caloric milk into his bottle for a few days and then gradually increasing it. For example, today he was getting 9 mls of milk and 1 ml of the caloric milk. So far it's working, but I think he's going to catch on pretty quickly!

He had an eye exam on Monday so his new opthamologist could get a baseline and he was extremely pleased with the effects of the treatment Benjamin had at Children's. He said Benjamin won't need another eye exam until the 26th. We were thrilled... he hates his exams so a two week break will be nice!

His new doctors also ordered head, stomach and kidney ultrasounds to follow-up previous diagnoses. His ventricles are still enlarged, but because they have been that way for awhile there's really no concern. Kidney stones are still present and the "mass" or possible hematoma that was in his stomach is no longer visible which is great.

The plan right now is for Benjamin to just chill and continue to grow. Ultimately he'll go back to Children's for a g-tube (gastric feeding tube) placement and to have his bowel reconnection sugery. He doesn't care for his nasogastric feeding tube and tends to pull it right out of his nose. He won't be coming home with this because he could aspirate, and because it'll be a long time before he can take everything by mouth (due in part to his short bowel and his neurological issues), a g-tube makes the most sense. God forbid he gets a cold, the g-tube will be valuable.

Speaking of colds, we were told today by one of his nurses that when we do take Benjamin home, he shouldn't go to the mall or be around too many people. I remember his pulmonary specialist at Children's telling us how scary that first winter can be for parents with a baby that has chronic lung disease. One of Jadyn's first words was "sanitizer" and it's a good thing she knows the importance of it because we'll all basically be bathing in it!

Continuing with the topic of bathing, I got to help with Benjamin's bath this morning. Definitely not a pleasurabe experince for the little guy. The only time he wasn't trying to fling himself over the side of the tub was when I massaged the shampoo into his hair. We love being able to be so hands on with Benjamin. Until only recently, the slightest touch was too much for him to handle. Knowing now that we can calm him down and make him happy by kissing him, caressing his head or patting his little bum is so rewarding.

Tuesday, July 6, 2010

July 9, 2010

Today was a big day for Benjamin and for us. He was transported back to South Shore Hospital! Apparently he loved the bumpy ambulance ride and was welcomed with open arms. He was brought right to the special care nursery which I must say was a relief for me (I would have had a really tough time going back into the NICU). He was so exhausted from his trip that he ended up sleeping in our arms for most of the afternoon and evening. Although he adjusted to the loud sounds in the NICU at Children's, we think the SCN is going to be a nice change for him. His new nurses are wonderful; however, we already miss his Children's team. We can't thank them enough for the top notch care they gave our son, and for the kindess they showed us. We aren't too sad because we know it won't be long before we see them all again when Benjamin returns for his reconnection surgery.

As far as a surgery date, maybe a few months, maybe more. His surgeon said he's doing so well there's no need to rush it. He's going to have major setbacks with the surgery (back on the ventilator, back on PN, etc.) so it's best he grow more and his organs mature beforehand. He's now 5 lbs. 11 ozs. and he looks fantastic. He actually has chubby thighs and arms!

Friday, July 2, 2010

July 2, 2010

It's been awhile since we've posted, but not much has changed in Benjamin's little world.

He was having a few issues with malabsorption so they decided to change the formula they add to his milk. He had a huge weight gain within the past day so not sure we can say it's the new fortifier working so quickly (it's highly unlikely), but we're thrilled! He's now 5 lbs. 8 ozs. This was a welcome surprise. Because he was breathing so quickly on Thursday, we thought he was burning a ton of calories and would end up losing some weight.

They decided to go up a bit on his oxygen because of his rapid breathing (possibly from the eye exam he had the other day), and we've noticed a small improvement since the increase. He's still having quite a few brady spells every day (dropping his heart rate), but they're mostly self resolving and rarely followed by a desat which is good. As far as why he's having them, we're not really sure. He should have stopped them weeks ago. He does have an exam exam every week and the drops used in his eyes can be systemic and cause them. Also, he has bad reflux and we notice sometimes he'll look like he's choking and then he'll brady. He also has a tendency to spell while he's taking a bottle. At other times we're puzzled because he'll do it in his sleep.

Now onto his eyes. The opthamologist we spoke with yesterday said he was very happy with what he saw during his exam. He believes the ROP is regressing and he doesn't think we'll see a third wave which is such positive news! Before transporting him to South Shore, he wants to perform another exam. We're keeping our fingers crossed next Thursday's exam shows major improvement.

It will be wonderful to have him closer to home and to see our old friends from South Shore again, but we will miss the nurses at Childrens very much while we're gone. They've grown so attached to Benjamin. One of his nurses was telling me how annoyed she was the other day because she was trying to do his cares and a few of the other nurses kept coming over to talk to him and hold him. It's so comforting to know he's being well cared for and receives tons of attention when we're not there. At least we won't have to say goodbye for long. He'll be back in the NICU for another stretch of time after they reverse his ostomy.

Tuesday, June 22, 2010

June 22, 2010

Benjamin is finally gaining some weight! He's 4 lbs. 12ozs. and it seems as though his surgical and nutritional teams have found the magic mix of fortifiers to warrant this consistent weight gain. He's up to 32 calories which isn't optimal, but saves him from having to be put back on PN.

Because Benjamin's been doing so well, his doctors have been tossing around the idea of bringing him back to South Shore Hospital and putting him in the Level 2 nursery or moving him to the "floor" at Children's to grow before he has his big surgery. The "Floor" is like a regular wing of a hospital and a "lower level" of care for children that are considered more medically stable and don't require minute by minute care. It's been a little frustrating because the members of his team don't seem to be on the same page. A few of the neonatologists in the NICU think he would be best kept at Childrens, while others see no reason why he can't go to SSH. His surgical team thinks he can go to SSH. Opthamology wants him to remain at Childrens. We took a tour of the floor he would be moved to on Saturday, and although we were impressed with what we saw, we had our reservations. If he were to stay at Children's, he would have his own room with a bathroom and all amenities for one of us to stay overnight with him. However, he would have to share a nurse with two other patients. If his monitor should alarm, his nurse's phone would alarm as well as the nurse's station and they would rush over to his room. It seemed like a great place for a toddler, but not a newborn. We feel as though he should still be in a nursery. As his surgical team was rounding this morning and reviewing Benjamin's care plan, he had an extreme brady right in front of them which ruled out any imminent transfer to the floor. Although disappointing, this spell was probably a blessing in disguise and he basically told them he wasn't ready.

It looks like he will remain in the NICU until at least the beginning of next week or until he has his next eye exam. Opthamology decided to do one this afternoon and determined Benjamin would need an injection in his right eye, which has been the more stable eye, to help reduce some worsening in his ROP condition. His opthamologist wasted no time and did the injection this afternoon.

Unfortunately tomorrow is going to be another eventful day for our little man. He will be having his Broviac removed. A minor surgery by medical standards, but we still pray all goes smoothly for him. This has been used for antibiotics, Parenteral Nutrition and his Omegaven fats. But since he's off antibiotics and PN and is finally growing on breast milk and fortifiers alone, he should no longer need the central line (Broviac).

Tuesday, June 15, 2010

June 15, 2010

Overall Benjamin's days have been good since our last post, but what he accomplished this weekend was amazing. Ryan and I walked into his bed space on Saturday and were getting ready to get his lines in order to pick him up and we couldn't find the high flow equipment. Benjamin looked the same to us with the cannula in his nose, but we were puzzled. It dawned on us that he must be on the low flow now. Ryan and I caught one of the nurse's attention and said at the same time "is he on the low flow??!!!" Sure enough he was. I don't know if they've seen two more excited parents at that moment. Not only was he on low flow, but they weaned him from 3 liters (on the high flow) to a quarter of a liter. At one point we were watching him because the prongs had fallen out of his nose and he was essentially breathing entirely on his own without support for almost half an hour. However, yesterday he was really working on his breathing (he was hyperventilating a lot). We were afraid he was going to burn more calories, so last night they had increased him to 3/4 of a liter. He's been on 30% oxygen and doing pretty well ever since.

Sunday morning we got a phone call from his nurse telling us that the surgery team put an order in for him to try 5ml of milk in a bottle 3 times a day. She said she would wait for us to get to the hospital so I could give him the bottle. I was so nervous, but it turned out to be a wonderful experience for both of us. He was hesitant at first, but was able to swallow the 5ml in about 25 minutes without any episodes! Unfortunately since Sunday, the bottle feeds haven't been going as smoothly. This morning we tried and he was having brady after brady and then desatting. I guess for a preemie learning how to suck, swallow and breathe can be challenging. At least he did it the first time so we know he can do it again. It will be such a relief when he stops bradying. He's almost 40 weeks (my due date was 6/20) and they've discontinued the caffeine so he should have stopped bradying and desatting by now...

His weight is down to 4 lbs. 3 ozs. This is a concern for us. Breast milk only contains 20 calories per ounce and because he's got such a small amount of bowel and doesn't absorb the normal amount, they've been adding calories to his milk. He's already up to 30 calories and they really don't like to go any higher. We're hoping between the additional calories and the less labored breathing, he'll start to gain weight.

His eye exam that was scheduled for yesterday got pushed back to tomorrow. Hopefully we'll see improvement.

We can't forget to mention that Benjamin also passed his first hearing test this morning! He'll need additional testing as he gets older because he still may experience hearing loss due to the antibiotics he was on as well as the extended vent support he needed. But we think he's a little rock star. He should be by the time he leaves because he's been listening to some pretty awesome tunes. He has Rockabye Baby (Led Zepplin, Green Day, Guns 'n Roses, the Beatles and the Beach Boys) plus Baby Loves Michael Jackson and Baby Loves the 80's. Combine this with the mohawk and he's one cool dude in the NICU.

Thursday, June 10, 2010

June 10, 2010

We got both good and bad news this week. I guess we'll start with the bad... the ROP in Benjamin's left eye has worsened this week. The opthamologist decided the best course of action would be the injection since the laser treatment wasn't effective (probably because of the scar he has on his cornea). She did that yesterday afternoon and we'll see if it helped on Monday when he has his next eye exam.

He's lost a good deal of weight over the past 4 to 5 days and is slowly putting it back on. He's currently 4 lbs. 4ozs. He's down to 3 liters on the nasal cannula which is great, but he's using up a lot of his calories to breathe. On Wednesday they started adding calories to his milk and that seems to be helping. He's been tolerating his feeds very well and is up to 10.8 ml/hr. One of his nurses told us that the amount he's getting in proportion to his weight is equivalent to Ryan eating 15 pounds of food a day. Isn't that insane??!!

Now on to the good news! Drumroll please.... because he's tolerating his feeds so well, Benjamin is off the PN and they were planning on stopping the Omegaven today! If he stops spelling (which he's still doing with some frequency), and can put on some weight, he actually may get to go back to South Shore and grow while we wait for the right time for him to have his surgery. No talk yet as far as how long it's going to be before his reconnect surgery, but we're so excited that he's showing such great progress! I almost have to pinch myself to see if I'm dreaming because just a few months ago we were told it could be a year, if not more, before he was off the PN and the Omegaven and look at him now! I can't stop saying how proud I am of my little guy.

He was able to have a couple of reike sessions since we last posted and he finds them very calming. He also had physical therapy for the first time this week and he loved that! We weren't in at the time, but his therapists are going to make sure they show us how to work with him.

Saturday, June 5, 2010

June 5, 2010

Benjamin had a great week! He's up to 10 ml/hr on his feeds (8 ozs/day) which is truly amazing. He's 2 kilos (approximately 4 lbs 5 ozs) and the hope is he can continue to tolerate the amount of breast milk they're giving him so he'll eventually not need the parenteral nutrition. They may also consider eliminating the omegaven and adding calories to the milk instead. It's a good feeling to finally be able to take milk out of the freezer and bring it to the hospital!

This week's eye exam showed significant improvement of the ROP in his right eye and only a little in his left. When he's awake, it almost seems as if he has better control of the muscles in his eyes and is able to focus on our faces when we're talking to him. Over the past few days, we've noticed that he has longer periods of alertness. When his nurses prop him up he loves to look around and can easily follow the sound of a voice.

He's at a pressure of 4 on the nasal cannula. They tried to decrease to 3 yesterday, but he didn't like that so they put him back up to 4. He runs the show and has been very good at communicating his needs; therefore, when he's ready to handle the reduced pressure he'll let us know!

He wasn't able to have a reike session this week because the nurse that does it had to take an assignment, but you only have to massage his gums to calm him down. It's the funniest thing! There's this little sponge that almost looks like a lollipop that is used to wipe out his mouth and he loves it. I guess it has a nice minty flavor to it as well. Turns out he loves minty things just like his mom and his sister. When he's finally able to come home, we'll have to make sure we stock up on them for those fussy times!

Monday, May 31, 2010

May 31, 2010

No sooner did I post the last update, Benjamin went back on cpap because he was showing signs that he was working just a little bit too hard to breathe. I figured it was pointless to post again because I was confident he would be back on the nasal cannula within a few days and he was. He’s been such a superstar. We’re so proud of him and the progress he’s made.

He’s up to 5.5 ml/hr. of breast milk which equates to about 4.4 ounces a day. He’s getting continuously fed from a tube in his nose and he’s been tolerating it well. However, his poor little nostrils are swollen and bloody from the prongs as well as the feeding tube and he’s been acting very agitated over the past few days. The nurse assigned to him today was able to get a nice size plug out and he was a happy camper after that! I had a wonderful afternoon just staring at him so content in my arms.

We signed Benjamin up for Reike and he’ll have his first session tomorrow. We think this is just the coolest thing! For those of you who aren’t familiar with it, it’s a form of energy healing where a certified Reike master will lay her hands on different parts of Benjamin’s body and channel her energy to him to provide stress reduction and relaxation. I can’t wait to see how he does with it. If only they offered it for the parents!

We will meet yet another new neonatologist at some point this week. S/he will only be on for the next two weeks. We found that as soon as we get comfortable with one, s/he is done with his/her rotation and we have to get used to another one. At least he will always be followed by the same surgical team even after he comes home and has his outpatient visits. We love his chief surgeon. We rarely get to see her, but the last time we did she was telling us that her mom out in California was asking her how Benjamin was doing. We thought that was unbelievably sweet and it continues to amaze us that there are so many wonderful people out there that are praying for our son each and every day.

Tuesday, May 25, 2010

May 25, 2010

Quick update… Benjamin lasted less than 24 hours on cpap and is now on the high flow nasal cannula. One of our favorite nurses told his doctors when they were rounding this morning how much cpap bothered him. They said he could try the cannula and he’s been doing well with it so far. He’s still having the occasional desat, but it’s usually only when he’s fussy. He’s also a bit tachypnic (hyperventilating) so that isn't good, but that should stop once he adjusts to the cannula. The good news is he’s keeping his milk down now. They vent his feeding tube so if he gets worked up he won’t aspirate and last night his entire feed was pretty much getting vented out of his stomach because he was so upset.

The other big change this morning was he was put in a crib! He’s no longer in the isolette since he can regulate his own temperature. I have to say, we thought he looked tiny in the isolette, but you can barely find him in the crib!

May 24, 2010

Today marked day 75 in the NICU and Benjamin came off the ventilator! They ultimately decided to transition him to the CPAP (continuous positive airway pressure) machine instead of the nasal cannula because it’s easier to regulate.

We can finally hear him cry, but we’re so sad because you can tell he hates it. The CPAP is the most cumbersome apparatus. We thought we couldn’t see much of his face before, now it’s even worse! He’s got this mask over his nose with a huge hose coming out of it and it’s strapped onto his head. Ryan and I spent more than 3 hours tonight trying to get him to settle down and we left the hospital with headaches and knots in our stomachs because we were so unsettled and tense. Hopefully he’ll do even better over the next few days and they can get him right on to the high flow nasal cannula.

His blood work came back good yesterday so he’s off the antibiotics and is now up to 2.1 ml/hr. on his feeds. He weighs 4 pounds 1 oz. and is 15 inches long. I honestly think most of his weight is in his cheeks. He’s got the chubbiest cheeks!

Wednesday, May 19, 2010

May 19, 2010

It appears as though the antibiotics are working their magic and a blood transfusion has helped as well because Benjamin looked great this afternoon! I was able to come in a little earlier today and found him calm and so alert. He had his eyes wide open and he was looking all around and listening to the harp (yes, the NICU actually has a harpist come in and play for the babies once a week for about half an hour… it’s awesome and Benjamin absolutely loves the music). He was sporting a new ‘do too. The nurse he had last night was cleaning him up and realized she could spike his hair so she decided to give him a mohawk!

His surgical team started his feeds again today which is both exciting and stressful. He’s getting .7 ml/hr. It’s such a small amount and he probably won’t absorb much because it’s only passing through about one third of his intestine, but he still might not be able to tolerate it.

He had another eye test and so far they think the laser helped stop the ROP progression; however, he still has plus disease, a complication of the ROP where abnormal blood flow in the retina causes the blood vessels on the retina to enlarge and become twisted. He’ll be monitored very closely, but as of right now they do not feel as though he needs additional laser or injection treatments.

His vent settings are up a bit, but that’s probably because he hasn’t been feeling well. Hopefully he’ll have a nice blood gas in the morning and they can start to wean him again. It’ll be a few days before they do a complete blood draw. Hopefully his platelets will be back on the rise as well as his white blood cells (both had dropped below normal levels over the past few days).

Sunday, May 16, 2010

May 16, 2010

Well Benjamin lasted all of 3 days off the antibiotics. He had been doing so well since Tuesday; however, this afternoon we noticed he started having clusters of extreme brady spells (drops in his heart rate) which he hardly ever does. His blood counts were way out of whack and indicated the start of yet another mysterious infection so his surgical docs will be putting in the order to administer the antibiotics again tonight.

His dye study he had on Friday went well. The contrast moved through his upper intestine at a slow pace, but there were no signs of an obstruction so they were planning on starting his feeds tomorrow. This probably won’t happen now since he’s battling this infection.

Good news is he’s doing much better respiratory wise. His blood gases have been coming back great so they’ve weaned his settings quite a bit. He has a little more to go before they’ll consider moving him to the high flow nasal cannula. This will be a very exciting day because we’ll finally be able to hear his voice!

Tuesday, May 11, 2010

May 11, 2010

Benjamin is two months old today and our little man had to spend a good chunk of the day back in the operating room. He was very agitated last night as his nurse was “doing him up” (taking his temp, changing his lines, etc.) and I went over to try and calm him. As I looked down at his legs, I noticed a lot of blood. We soon realized his PICC line (central line) had broken. This line is about 7 inches long and runs through his leg and up into his chest. He gets his nutrition and fat through this central catheter so we were pretty upset when this happened. The doctor on call thought it was a defective PICC because he said it should never have broken like it did. Go figure! They unsuccessfully attempted to run a new line a few times during the night. This morning the surgical fellow told us the best bet was to insert a line into Benjamin’s neck and out through his chest so that’s what they did.

The surgery took a lot longer than expected and I can’t even tell you how excited I was to see him when they announced over the intercom in the NICU that “the post op was returning to Bay 7.” I knew he had to be paralyzed during the surgery, but I was still shocked when I saw him because his eyes were open, but they didn’t move. It was only a matter of minutes before the paralytic started to wear off and he was wiggling his little toes. He was obviously wiped out because he spent the remainder of the day riding the vent (not taking too many breaths on his own) and in a deep sleep.

We did get some good news today… Benjamin’s platelet count increased a bit which means his body is starting to clear whatever infection he had! He’ll be on the antibiotics for a few more days and then they’ll do another dye study to make sure there isn’t any new scarring in the portion of his intestine above the ostomy. If all goes well, they’ll most likely try and start feeds again this weekend. He’s 34 weeks gestation and at the point where he knows when his tummy is empty and cries when he’s hungry. He’s really taken to the pacifier which is great, but it pulls at my heartstrings to know he wants to eat, but can’t. I have close to 500 bottles of frozen breast milk (I’m not kidding) and I would love to see him get some of it soon!

Sunday, May 9, 2010

May 9, 2010

It’s been another rough couple of days. Our little man has some sort of infection and his surgeons and primary neonatologist can’t figure out where it’s coming from. It’s scary because he’s been on heavy duty antibiotics for almost 6 weeks now (minus a few days 3 weeks ago when they tried to start his feeds). So far all of his blood cultures have come back negative, but his platelet and hematocrit counts continue to drop and he’s having bradycardia (heart rate drops) and apnea spells. Last night they tried to do an LP (lumbar puncture or spinal tap) to rule out meningitis, but they couldn’t get any spinal fluid and instead got blood. We were told that the surgical team will decide if they want to attempt it again.

I didn’t feel comfortable holding him yesterday because his saturations were all over the place, but I was determined to hold him on Mother’s Day and he seemed to be doing better when we arrived. Although his oxygen levels weren’t fluctuating much, he received a larger ventilation tube last night and we noticed him gagging a lot on it today. We had been cuddling for about an hour and a half when he started gagging and I could hear crackling from his lungs. He was desatting a little more frequently and I told the nurse that I thought he had a lot of secretions in his lungs. She said she was going to suction him and as soon as she started, he dropped his heart rate and his oxygen saturation. Before I knew it, his heart rate was in the 50’s (from about the 150’s) and his oxygen saturation was 4 (normally between 87 and 95). They began bagging him while he was in my arms and nothing was happening. I looked at his face and he was blue and lifeless. At that point his nurse hit the “code” alarm. Doctors and nurses appeared out of nowhere and they were opening his blankets to get at his chest as he was taken from me. It was such a scary moment and although they kept telling me he was okay, I wanted to crumble. I felt absolutely helpless. I think I was only able to breathe once I saw his color come back and his eyes opening and looking around.

It’s really hard to see our son, who is already so sick, getting sicker. We’ve spent hours on the internet the past few nights trying to see if we can find anything that might help diagnose him. We know that’s not our job, but we know Benjamin and feel as though we are his best advocates. Our poor baby deserves to catch a break.

Friday, May 7, 2010

May 7, 2010

Just wanted to give a quick update and let everyone know that Benjamin's surgery went well today. It lasted about two hours and the opthalmologist said he was able to use the laser on both eyes so the injection wasn't necessary. We'll find out in a week or two if it worked! His eyes are a little puffy and bloodshot, but other than that he shouldn't have too much discomfort. He was out like a light when we left and hopefully he'll have a good night.

Thursday, May 6, 2010

May 6, 2010

We had a meeting with the ophthalmology attending today because Benjamin was diagnosed this morning with severe ROP (retinopathy of prematurity), a potentially blinding disease. Prior to this, we knew he was likely to have some degree of ROP because more than 80% of preemies who weigh less than 1000 grams (2.2 lbs.) will develop it, but we were hoping it wouldn’t be as severe as it actually is.

Some cases of ROP will resolve without treatment; however, Benjamin will need laser surgery to stop the retinal detachment. We were told it’s the best option to try and save his central vision (he most likely will lose peripheral vision in both eyes). The scratch on his cornea is still there, and the ophthalmologist said he may have a hard time “freezing” the abnormal vessels because of it. If he cannot get to the vessels, he will need to make injections of some sort of drug into his eye. His surgery is scheduled for 1:00 tomorrow afternoon and will take about two hours to complete. He’ll be sedated with Fentanyl and we’re praying he won’t be too uncomfortable.

He continues to battle some type of infection as seen from another recent drop in his platelets. We’re very concerned about this because he’s been on three strong antibiotics for the past two weeks and obviously they can’t clear whatever he’s come down with. They did a blood culture this morning so we’ll see if that shows anything.

They also performed another ultrasound on his head and his abdomen this afternoon. The head ultrasound was done because in addition to the evolving damage in the white matter of his brain, his ventricles looked enlarged last week and the attending neonatologist wants to make sure his spinal fluid is reabsorbing properly. There were a few other things they were going to look at, but I honestly can’t remember. As far as his stomach, he has an area that’s become a little hard to the touch so I think they want to make sure it’s not some type of abscess.

All in all he had a very busy day today and when we left him tonight we could tell he was absolutely wiped. The nurse coming on at 7:00 said he was going to have a quiet night (no blood tests or stoma dilations planned) and we were so happy to hear that. We won’t sleep tonight knowing what tomorrow brings, but we would love to see him rest as much as he can.

Sunday, May 2, 2010

May 2, 2010

This has been an extremely emotional week for our family and I’ve held off updating the blog because I really didn’t know where to begin. But, we know there are many people waiting to hear how Benjamin’s doing so I’ll attempt to give a synopsis of what transpired over the past couple of days.

Benjamin’s platelets dropped really low last week so he’s needed a few more transfusions. His doctors thought he either got an infection or he was taken off the antibiotics too soon. Because of his low platelet count, a head ultrasound was performed to rule out additional brain bleeds. We had a family meeting on Wednesday and we were told that based on this new head ultrasound, his brain damage has evolved. Basically there are significant holes in the white matter on both sides of his brain around his ventricles. On a scale of 1 to 10 (10 being the worst), his damage is a 9 and it’s likely he’ll have severe cerebral palsy. His neonatologists want us to have another meeting with the neurology and surgery teams to discuss what this means for him and for us. We’re trying to be strong, but it’s hard when I ask “can I hope at all?” and the answer I get is “I have to defer to neurology.” The frustrating part is that we know neurology is going to tell us it’s bad, but we’ll have to wait and see because they can’t predict until he doesn’t reach his milestones.

On a more positive note, he now weighs 3 pounds 5 ounces. Some of that weight is edema, but this is normal in preemies. His belly is still measuring large and there hasn’t been any talk about him starting back up on the feeds, but the resistance the surgical fellow has been feeling when he dilates his stoma is lessening which is good.

The little bugger hates his breathing tube and apparently Friday night he managed to gag it right out of his mouth! Ryan and I were mortified when we heard, but we were told the situation was handled very well and luckily his nurse and respiratory therapist were right there when it happened so it didn’t take too long to get a new tube put into place. We keep telling him that if he would just learn to breathe a little better he wouldn’t even need the tube! He’s very strong and unfortunately because he has a tendency to grab his tube and yank on it, the amount of tape plastered to his face is ridiculous. It runs pretty much from one side of his head to the other.

Please keep praying for our baby and hope this new week brings us smiles instead of tears.

Monday, April 26, 2010

April 26, 2010

Very early yesterday morning they had to stop Benjamin’s feeds because his belly circumference had increased even more, he was developing a lot of redness below his incision line, and he was so lethargic. They decided to start the antibiotic again in case he had an infection. We spent almost the entire day with him and knew something just wasn’t right. He opened his eyes maybe two or three times for a few seconds. Ryan gave him a manicure and that didn’t even bother him!

An x-ray was ordered as well as an ultrasound and they didn’t show much. There seemed to be a little widening of some areas of the “good intestine” (the part before his ostomy) and a potential kink near where the ostomy comes out of his abdomen. One of the surgical fellows had been dilating the stoma (trying to open it up and stretch it out a bit) a few times a day for the past couple of days, but that wasn’t really doing the trick.

On the way home Ryan and I were wracking our brains trying to figure out what was wrong with him. It’s great when an x-ray or and ultrasound doesn’t show anything alarming, but it’s extremely frustrating when there are no answers. His little tummy just keeps getting bigger and bigger and no one can figure out why. He’s growing so that’s part of it, but it’s still measuring a lot larger than it should.

The ultrasound did show calcifications in his kidneys. We were told this is due to the lasiks he was given to help him pee. So, today he was given another drug to try and clear up the calcifications.

The antibiotics must have helped a lot because when I got there this afternoon he was getting back to his usual feisty self. He actually pulled his feeding tube out of his nose twice! His belly is still measuring the same, but the redness is gone. He’ll be on the antibiotics through the week. They don’t want to start his feeds back up until they notice more output out of the ostomy.

Dr. Zahr, one of Benjamin’s neonatologists from South Shore Hospital, stopped by to see him this afternoon. I was so happy for his visit! Ryan and I are still in awe at how many people truly care about our son and how he’s doing. It’s extremely touching.

Friday, April 23, 2010

April 23, 2010

I can’t wait until we can go a week without being thrown a curveball. Benjamin had his first eye exam yesterday and they found a scratch on his cornea. We were thinking he probably scratched it himself; however, one of the surgical fellows believes it may have happened at some point in the operating room weeks ago. The neonatologist I spoke with today isn’t sure if he will have permanent damage because of it. He’ll have another eye exam next week and hopefully it will look better!

The eye exam was originally done to see if he has retinopathy of prematurity (ROP) which is a disorder of the blood vessels in the retina. His eyes are still too immature to determine if he suffers from this, but because his oxygen level fluctuates so much, he’s vulnerable to getting it. We should know more after next week’s exam.

He seems to be tolerating the feeds fairly well! He’s getting so little right now that it won’t help him gain weight, but it’s lining his belly and getting the top part of his intestines to function properly again. I like how they’re managing the feeds by starting slowly. I’m so paranoid about him getting a repeat of necrotizing enterocolitis (NEC). It’s getting to a point where every time they mention something, like the amount of output from the stoma or the color of his stool, I panic and immediately ask the doctor or nurse at his bedside if they think he has NEC again. I finally told them today to get used to my paranoia because I’m going to be acting like this for a very long time!

In the past few days he’s packed on the ounces. He’s now 2 pounds 7 ounces! Still hasn’t made much of an impact on his oxygen saturation leveling off, but hopefully over the next few weeks his desats won’t be as extreme and they’ll become less frequent.

As a side note, Ryan and I had a conference call yesterday with one of the surgeons that performed my laser ablation procedure in Providence to discuss the findings from the examination of my placenta. It was even worse than we originally thought. Unbeknownst at the time, I also had a condition called velamentous insertion where both umbilical cords were not directly rooted to the placenta, just the membranes. The vessels could have ruptured at any time, and I would have lost both of my babies in utero. Benjamin and I are extremely lucky.

Tuesday, April 20, 2010

April 20, 2010

Benjamin is a proud member of the Kilo Club (he weighs at least 1000 grams)! We were presented with an “award” today with his hand and foot prints on it. It’s absolutely adorable!

He had a dye study done this afternoon to see if there were any strictures or obstructions in the top part of his intestine (before the ostomy). We’ll get the official results tomorrow, but they will most likely start his feeds very soon. He’s still at risk for NEC which make us so nervous, but the longer they hold off the breastmilk, the less likely his intestines will function normally. The next few weeks are going to be stressful and difficult for us and for him as he’ll most likely tolerate some feeds, but not others. He’ll start off with only a few drops and they’ll gradually increase the amount if all goes well. We still don’t know how much “good” intestine he has left below the ostomy, but that dye study won’t be done for awhile.

The desats haven't lessened, and they’ll probably continue for another few weeks if not longer. We hope that as he grows, and his lungs get bigger, he’ll be able to regulate and maintain his oxygen levels. We’ve noticed a few more apnea spells, but he seems to be able to bring his heart rate back up on his own and fairly quickly.

Since he’s been off the Fentanyl, we’ve noticed he’s become extremely sensitive to sound again. We need to whisper when we’re in front of his isolette or else he’ll become agitated. There’s a NICU nurse who is an absolute sweetheart, but has a boisterous voice. She was talking to us the other day and Benjamin started to squirm and his vitals were all over the place. Well, we peeked into his isolette and his little hand was covering his ear. We got a kick out of that! Thankfully, there aren’t many babies in there right now so Benjamin has a Bay all to himself and he’s had peaceful and quiet nights.

Saturday, April 17, 2010

April 17, 2010

Benjamin started the Omegaven on Thursday because his bilirubin levels were starting to rise and cause injury to his liver. Basically the Omegaven takes the place of the Intralipid he was getting. It’s a fat emulsion comprised of fish oils and it is administered the exact same way; through his central line. Although he hasn’t put on anymore weight since our last update, he should continue to grow on this, and after a few weeks we should expect to see his bilirubin levels begin to return to normal.

Because Benjamin started this new “investigational” lipid, he will not be able to return to the South Shore NICU. It costs $50 to $100 a bottle for this stuff and Children’s Hospital will cover whatever isn’t covered by insurance. Unfortunately, we were told South Shore will not. We had such high hopes of returning to the wonderful doctors and nurses we grew to love there! But, while Benjamin will most likely be part of this study for a long time (possibly years), Children’s is the best place for him.

He will finish his antibiotics today. He was on them for three weeks because of his intestinal surgery. Infection can be a common occurrence among extreme preemies that require long stays in the NICU; therefore, his blood will be continuously tested while he remains there.

I was very worried on Wed. when I heard he dropped his oxygen saturation into the 20s, started to turn blue and needed to be bagged. But, although his desats have continued, I am happy to report that he’s been doing much better over the past couple of days. He’s drifting down into the 60s and 70s, but for the most part has been able to bring himself back up with little intervention (maybe an extra breath or two of oxygen). The pulmonary neonatologist is coming back on Monday and I’m anxious to talk to him. Two weeks ago, he was thinking Benjamin could move to the CPAP, but held off because he didn’t want more trauma to his belly. Now that he’s on higher vent settings than he was two weeks ago, I’m wondering what Dr. Rhein’s thoughts are. It doesn’t seem like Benjamin will be moved to the CPAP or high flow nasal canula anytime soon, but we could be pleasantly surprised!

Around 8:30 last night he was wide awake. I got to change a diaper and Ryan and I looked into his eyes and talked to him for at least half an hour. Normally he’s been having his caffeine dose around 8 pm so we were shocked when we found out he hadn’t had it yet and was this alert. We cherish these times since his isolette is usually covered and we can’t see much of him.

Tuesday, April 13, 2010

April 13, 2010

Our little guy has surpassed 2 pounds! As of today, he weighed 2 lbs. 1 oz. and he’s grown 1.1 inches since he was born (he’s now 13.1 inches long). The PN he’s on is doing the trick; however, his bilirubin level is increasing… not a good thing. His nurse talked to us tonight about starting him on a new omega that’s in a trial phase. Apparently a surgeon at Children’s Hospital has been experimenting with it. We were told that it’s been quite effective and long term use shows no signs of damage to the liver; babies are actually coming to Children’s from all over the country just to get it. I’ll talk to the doctor tomorrow and most likely sign the consent for him to enroll in the study as soon as possible.

His desats (drops in his oxygen saturation) have continued; some of which are really bad. I guess all micro preemies (babies born before 26 weeks gestation) have this problem, but he’s dropping his levels too frequently. To rule out infection as a contributor, his blood has been tested. We’ll have the final culture results by the morning, but so far it’s been negative. He’s also getting a dose of caffeine every night at 8:00 to try and minimize the desats.

Dr. Hansen detected a faint heart murmur when she was rounding yesterday. According to her, it’s nothing to be concerned with at the moment. Hopefully it will go away as quickly as it developed.

When I called in for an update around 4 am this morning, his nurse said he had been crying. Because he has the vent tube down his throat and between his vocal cords, you can’t hear him cry. All you see is his little face scrunch up and his mouth open wide… it’s so heartbreaking! He was taken off the Fentanyl drip yesterday afternoon and his nurse said he started showing withdrawal signs last night and early this morning. Once she gave him a Fentanyl bolus he was a much calmer baby. He’ll get a few boluses a day for a bit and then he should be able to kick the habit!

As Benjamin has stolen our hearts, he’s stolen his nurses’ hearts. As hard as it is for us to leave him at night, we know he's loved and in good hands.

Sunday, April 11, 2010

April 11, 2010

Benjamin is one month old today! I must say, as he’s getting bigger he’s starting to look a lot like his older sister. He’s weighing in at 850 grams which equates to 1 lb. 14 oz. Besides a little swelling in his tummy, this should be his true weight. The nutrition he’s been getting has been bumped up a bit because his growth has been so slow. He’s going to be on perinatal nutrition for months (even when he does start feeding) and he has to have his bilirubin levels monitored closely because it can damage his liver. He’ll be getting another blood transfusion, but other than that, he should have somewhat of a quiet day.

I did get to Kangaroo hold him last night! It was both a wonderful experience and yet a bit stressful. It was great to finally bond with him, but it was hard for me to relax because he kept desating (his oxygen level would drop).

We had our first family meeting at Children’s Friday afternoon to go over the results of Benjamin’s MRI. Apparently the images show extensive brain damage on both sides of the back of his brain, but we were told we will have to wait until he gets older to determine exactly what this means. We didn’t really get any answers. When I asked if my son might not be able to ever walk or talk, we were only told “it’s a great possibility.” Dr. Hansen said that we would probably be dealing with vision problems as well as issues with motor skills, but we must wait, wait, wait. After this unsettling consult, Ryan and I decided we can’t think about what may or may not be, we have to focus on the issues at hand (Benjamin’s stomach problems, his lung disease and his slow growth). We went back into the NICU and he was bright eyed and alert and we were able to hold his little hands.

He’s down to 1 mcg of the Fentanyl and they may take him off the drip completely today. He was showing some signs of withdrawal Thursday night and early Friday morning, but now he seems to have adjusted quite well. We thought about changing his nickname to “Fent” because he’s been on the narcotic for a month now!

Benjamin continues to amaze us and we couldn’t be more proud of him. We are so in love with him, and although this wasn’t the path we would have chosen for both of our boys, we cherish the little miracle we’ve been given. A friend of ours shared the following poem with us and I think it explains in a nice way a few of the emotions we’ve been feeling and what our future may hold.

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
© 1987, by Emily Perl Kingsley. All rights reserved.