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

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.