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

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.