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

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...