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

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!