Saturday, December 31, 2011

The object of a new year is not that we should have a new year. It is that we should have a new soul

As 2011 comes to a chilly, icy close, I'm thinking back on how life has changed this year. Obviously, the biggest and most exciting change is this little miracle whos lying in his fishtank asleep right next to me. in his 80 or so short days on this earth, this little guy has taught us so much. We've learned to love more, we've learned to have more patience, we've found strength that we didnt know we had. We've also learned that everything happens for a reason, and we have no control over things. What we can control is how we cope with what life hands us. Alot of people would look at our little guy, and the strikes he has against him, and think about how difficult his life may be. We look at him, despite the strikes against him, and think about how wonderful his life will be, and how strong and beautiful he is, and how he has filled such a large place in our hearts. He has fought the odds against him since the minute he was born, and we have no doubt that he will continue to do so, and we will do everything in our power to give him everything he needs to thrive <3

Rowan has had a very busy few weeks since I posted last. He had surgery to place his gastrostomy tube in his stomach, and at the same time the surgeon repaired two hernias, and circumsized him. He came back to the NICU from his surgery, fighting the ventilator, so they took it out pretty quickly. Hes been doing wonderfully ever since.

A few days after the surgery, the question was brought up of when he can go home. The doctors felt he was pretty much ready, just needed to tie up some loose ends...get his car seat challenge, his synagis shot, that sort of thing. Also we needed to decide on a vendor for our at home supplies. After calling around, we found that only one vendor could supply us with everything we needed, so the order was placed and we had to sit and wait for the supplies to arrive from the warehouse, or wherever they come from. After being told that it could be three to seven days before they arrived, and then who knows how many days until the vendor could come set stuff up at our house, we began the fight to at least get Rowan transferred to CVPH so we could be with him all the time, and take care of him,and be close to home. Plus, at CVPH, grandparents and siblings are allowed to visit...a luxury we had not had for 2 months. His family has been waiting a long time to hold him.

Finally, thursday, after making numerous phone calls, and possibly frustrating  a few people, we got the good news that Friday morning, at 8:30 am, Rowan would begin the trek back to Plattsburgh. Jason and I went to VT first hing friday morning, and arrived shortly before the transport team got him loaded into his travelling fishtank. We got to say goodbye to his primary nurse, Mary, who made our NICU experience a bit less stressful, and we collected all the gooodies that had accumulated during our lengthy stay. We followed the ambulance all the way to CVPH. The trip was very smooth, and Rowan slept the whole way there.

It took us a little bit to get settled and get into a routine, but I think now Ive gotten things figured out, and we've began altering his feeding schedule so that we arent awake every 3 hours all night long. Not entirely sure how itll work, but its worth a shot. Going to talk to Dr. Lawrence about possibly looking into continuous feeds overnight. Worth a shot anyway.

Grandma Nina finally got to snuggle her first grandbaby yesterday! he fell right asleep in her arms, so obviously a very comfy boy. My mom has a sinus infection, but hopefully she can visit tomorrow. Ive been staying here at CVPH so I can do (most) of the care. Last night, though, Ill admit, I let one of the nurses do one of his feedings, because I was just exhausted, and this week long tension headache is kicking my butt. Feeling much more human today after a shower and a coffee :)

Abbie finally got to meet her little brother. Not too sure what she thought, but she loved that he would hold her finger, and she fetched some clean diapers for us, and held his pacifier in his mouth for him. I think she will be a great big sister. I hope anyway...She had lots of questions! "How does he eat?" "Why does he have two pacifiers?" "Where is his food?" "Can I hold him?" and so on and so on. Shes very curious about this tiny human. haha

Hopefully, when our vendor opens their offices on tuesday, they will have our equipment, and I will bother them until they come and set it up, because this little man wants to go home! And I want to go sleep in my own bed! Not that Ill be getting all that much sleep but still!

Wednesday, December 14, 2011

It's been a long, hard road, but the end is in sight....nothing can stop us now!

So as if my life wasnt busy enough, I decided to go back to work for a few weeks to make a little extra money until Rowan comes home (when I will stop working and devote my attention to him). Our little guy has been pretty busy himsellf. He's been doing great since he had his shunt put in! His head circumference has remained stable, and he hasnt really had any alarms at all! hooray for a super strong little boy!

 After he recovered from his surgery, we decided to try and feed him orally, both with a bottle and breastfeeding. He latched pretty well, and seemed to enjoy breastfeeding but would fall asleep so it wouldnt really accomplish too much...and everytime we tried giving him a bottle, he would desat. The "feeding team" was called in to evaluate him and they didnt succeed either in giving him a bottle. He would suck and suck, and then desat, so we would remove the bottle, and he wouldnt have gotten much of anything out of it. A baby of his gestational age should pretty much be fine with nursing or bottle feeding, so the occupational therapist deduced that his problem was most likely caused by the PVL. Im not entirely sure how much I believe that this is the cause of his delay, but they seem pretty convinced. They strongly recommended that we have a g-tube placed, so that Rowan can get all the nutrition he needs while still working on feeding orally. To me, it seemed more like they were kind of writing him off because of his neurological status. After some convincing, we agreed to the g-tube, and we plan to find occupational therapists in NY that can help us, because i refuse to have someone give up on my child.

His g-tube placement surgery is scheduled for tuesday, december 20. Unfortunately, this means that we probably wont be able to bring him home by christmas, as he needs time to heal from the surgery, and we need time to learn how to feed him. It was also discovered the other day that Rowan has an inguinal hernia that will be repaired in the same surgery on tuesday. He will also be circumcised while under the anesthesia. We know he does well with surgeries, so we are confident that all will go well! The best news; once he recovers from the surgery, HE CAN COME HOME!

He is currently hanging out in the transitional nursery, in his big boy crib, because the NICU was full, and hes pretty much fine. Once surgery is over, he will go back to the NICU until he recovers. Its nice to have the week of peace and quiet in NTS though, and he gets to wear clothes! He no longer fits in preemie clothes! Hes a gigantic 5 lbs 11 oz as of today, but im sure that will change! he will no doubt be 6 lbs by the time he comes home! He also received his immunizations yesterday, since it was his two month birthday! I cant believe its been that long already! We are definitely ready to bring him home! He needs constant mommy and daddy snuggles, not just a few days out of the week!

Sunday, November 27, 2011

sometimes no news is good news...

So we have had a fairly uneventful few days. Rowan had his shunt placed on november 23, and did really awesome during surgery! The neurosurgeon sounded pretty optimistic that it would be the help that he needed. He was kept on a ventilator until friday morning, but has been off it since then and doing great, no alarms at all! Hes such a strong little guy! And he's so awake now, its so nice to see his beautiful eyes! He got to snuggle with Daddy today, since he will have me all day tomorrow all to himself, since jay has to work. There really isnt a whole lot of news to share, which is usually a good thing when youre dealing with the NICU. He will have his usual monday cranial ultrasound tomorrow morning, which will hopefully be stable like it has been...We havea care conference on wednesday to discuss more long term future Im sure i will blog again after that...hopefully we can get some of Abbie's christmas shopping done this week...since we have NOTHING for her...we DID get our christmas tree up steps...we will get things done...and hopefully little man will be there to enjoy christmas morning with us all <3

Monday, November 21, 2011

When the evening shadows and the stars appear, and there is no one there to dry your tears, I will hold you for a million years...

Its strange to think of our lives as being "incredibly busy" when they basically consist of sitting around at home (except jay went back to work, so he sits there) and sitting in the hospital. And sitting in the car driving between the two places. Yet every day I am completely wiped out. I think Ive just gotten to the point where I wander around like a zombie, only processing the important information I get...I had to go and get an iced coffee to make it through the day today...or else I wouldve been back in my room asleep all day instead of cuddling with my sweet boy...Have to get all the cuddles in that we can, he has a busy few days ahead of him...

It appears that tapping the reservoir is not as productive as they would like it to be...theyve had it do it every other day for the past few days, and it helps at first, but by the next day it seems to be bothering him again. I cant imagine having a constant headache...poor bug! He hasnt been having alot of alarms, but when he does have them, he seemed to be needing pretty vigorous rubbing to get him to take a deep breath and get the oxygen flowing...

He also seems to be having trouble swallowing his saliva and whatnot and its been building up in the back of his throat, and needing to be suctioned out pretty regularly...This is probably caused by the excess fluid in his brain putting too much pressure in the wrong places. With the Spina Bifida, his brain isnt exactly where its supposed to be in his head, its pulled back a little bit. which can cause swallowing issues.

Hopefully, Rowan will have a shunt placed tomorrow or Wednesday, that will continuously drain this excess fluid into his belly, where it will be absorbed, so that we will not have to continue on this cycle of waiting until it gets bad, then tapping, then waiting for it t get bad again, then tapping, etc etc...and it should stop the pesky headaches that the poor bug keeps this point im a big fan of ANYTHING that will help him feel better...I just want a happy healthy boy to bring home and cuddle...

Wednesday, November 16, 2011

35 days, 4 pounds, countless milestones...

For long term NICU parents, there comes a point when you look back over the past however many days, weeks, or even months (though we havent quite made it that far yet), and you cant believe that its been that long, because it was just yesterday that you were terrified, wondering if your child would be okay, and its been 35 whole days, and look how far we've come from where we started. Its the strangest feeling in the world. it was just yesterday, but it was ages ago all at the same time...

There never seems to be enough time in the day to accomplish all the things I need to do. I constantly feel like im not in the right place. Sort of going through the motions until I can go to VT again. Things are getting better with Abbie. Now when she throws a tantrum, we ignore it. It doesnt last as long that way...shes not getting the reaction shes looking if only we could get her to nap....I really wish she hadnt chosen right now to outgrow naptime...

Over the weekend, Rowan got moved between the NICU and the transitional nursery two separate times, only to finally end up back in the NICU, where we requested that they please not move him again until he is ABSOLUTELY ready for it. Apparently he was having Dsats, meaning his blood was not oxygenated enough. He usually self corrected, and only needed a little O2 support once. He seems to have the issue when hes in a very deep sleep. His brain forgets to tell his body to breathe deeply. Theres no real reason that theyve been able to see for why he does that. As usual, everyone assumes its his brain, even though hes had stable ultrasounds for the past week. They tapped his reservoir yesterday morning, to see if it would help. It appears to have. The doctors feel like we should just continue with the course we are on, and that he should be tapped as needed, and eat and grow until hes big enough to have a shunt placed. At least the shunt will continuously drain fluid, instead of having to wait until it builds up and causes issues.

Oh, and our little bug is finally 4 more pound and he will have DOUBLED his birth weight...and he will still be three pounds less than his sister was when she was born...oye. And on that note, I am going to go watch the lion king with Abbie and Jason...wish our little man was home to enjoy it with us.... <3

Saturday, November 12, 2011

I am a Mother Lion...

Anytime the caller ID flashes any number from Fletcher Allen, my heart stops beating. literally, I cant breathe, because the first thing that pops into my mind is "Oh no, what happened?". So, when I saw the number come up only a few hours after we had called to check on Rowan, thats exactly what happened. I had been napping, and felt my cell phone ring. I didnt look at it right away because I was really tired and really wanted to continue my nap. Besides, I cant answer my cell at home anyway; we have no reception here at all, so I figured whoever it was would leave a voicemail, or call the house phone if it was important. Then the house phone rang. I glanced at my cell to see who the missed call was from, so I assumed it was the same person calling the house. It was.

Dr. Cole said to me "I have some good news". Well, that calmed me down immediately, and totally changed my attitude towards the entire conversation. He was calling to tell me that Rowan was stable enough that they felt comfortable sending him to the transitional nursery. There are only 9 beds down there, and its much quieter and more relaxed than the NICU, so we were thrilled! I couldnt wait to get over there on thursday to see him and check out his new spot! We werent expecting this until later this month or early december, so I was SUPER excited and proud of our little guy for doing so great!

The transitional nursery was exactly what Id been told it was. QUIET. no alarms going off all over the place all the time, no 15 screaming babies, just a very laid back atmosphere, which I feel is probably better for Rowan anyway. Not to mention theres a bathroom IN the nursery! AND the Ronald McDonald family room is right down the hall, instead of down the hall, down two floors, down another hall or two... (lazy girl likes her hot cocoa to be easily accessible [if anyone needs a christmas gift idea: I WANT A KEURIG]) Oh, and now we get to put the little guy in clothes! SO CUTE! My Aunt Bev sent us some cute outfits for him, which I will be trying out this week (pictures to come in a few days! theres a pointy hat involved, THATS how cute they are!)

We had to stay in Plattsburgh yesterday, because Jay had to work, and Abbie had the day off from school, so we of course called the nurse to see hwo Rowan was doing. Apparently overnight his head circumference had gone up quite a bit (it had been stable for a week), so the neurosurgeon decided that the nurse needed to tap his reservoir for the first time. They removed 10 cc of fluid through the reservoir. He seemed to perk up quite a bit after that, even though Im sure he was none too pleased with the situation. Thankfully the reservoir is doing its job, and thats all we can ask. When I called later that evening, his nurse told me that they were preparing him for his eye exam. I dont know exactly what that entails, but I have heard from a few former NICU mamas that it is very unpleasant to witness. I know they have to put clips on his eyes to keep them open. no fun. poor bug.

When we arrived at the hospital today, we went to the transitional nursery, where we THOUGHT our child was. Well, his spot was empty. We thought maybe they shuffled things around and he was in a different spot. Jay asked the nurse, who told him that Rowan had been moved back upstairs. Well, that was the beginning of quite a clusterf*ck. We went upstairs, with Abbie, and Jason's dad (who had come to see the baby) and Jay and I went in the NICU, while his dad stayed in the waiting room with Abbie, so we could see what was going on. I had to ask the secretary where my child was. Once we found him (shoved way in the back by the outside windows, with barely enough room for us to even fit next to his bed), his nurse came over, and I asked her FIRST why was he moved and second WHY THE HELL were we not informed that he had been moved. She apologized (i knew it wasnt her fault), and explained that overnight he had had a few alarms where his heart rate would drop, and he would self correct, but for whatever reason they felt they needed to move him upstairs. We were also told that he had had no alarms at all since being brought up to the NICU. I had to go downstairs to get my pumping kit so I could make some foods for Rowan, and I was talking with the nurses, who all basically said that they saw no reason why he was upstairs, since he gets the same care with the same staff downstairs. I was pretty livid by the time we left for lunch, and told the nurse that I would be back to talk with the attending physician.

We went to lunch at Al's French Fries. yum-o! When Jason dropped me off at the hospital (since im the assertive one), he took Abbie to toys r us, and I made my way upstairs. As I was walking through the NICU to Rowan's bed, the Nurse Practitioner stopped me and said GOOD NEWS! we are sending him back downstairs! YAY! She mustve been told that I was coming back and that I was not amused. Because I am the mother lion. I dont like people messing with my cubs. It was pointless to have him upstairs. We spoke with neuro, they saw no reason to keep him upstairs, we spoke to his nurses, both upstairs and down, and the NP, and no one could really give me a reason why they were keeping him up there, or why they even brought him up in the first place. Nor could they explain why no one had bothered to freaking call me. I mean christ, when he had a teeny fever they called me at 7 am. youd think they would know that it would bother me a TAD to go to see my baby and have him be GONE.  I admit, I flipped out alittle bit in my head...but in any event, the issue was resolved before we left for the day...

My baby shower is tomorrow, and Im SUPER excited! It will be a little strange not being pregnant at my baby shower haha...but im excited for good food, good people, and presents for our little munchkin! Back to Vermont Monday-Wednesday...

OH, and his cranial ultrasound on thursday showed that the PVL may have stopped growing (YAY!) He will conitue with his twice-weekly ultrasounds, so we should know for sure by Monday or Thursday....We love him so much and hes been so strong...I hope he continues on this road...

Tuesday, November 8, 2011

leaps and bounds...

we have had a very eventful couple of days! it seems like everyday is something new...

after taking a few days off its amazing how much bigger he looks...still right around three and a half pounds but gaining a little everyday. today they decided to add vitamin d to his food, and tomorrow theyre going to add in iron also. so he can grow big and strong!

We missed rounds yesterday but when we did arrive we discovered that his high flow had been taken off! So he is now breathing on his own completely and has no assistance and is doing great! Normally underdeveloped lungs are a big issue for preemies, especially as small as he is...but he likes defying the odds apparently...

We were also told that his PICC line would be coming out today. it had been in long enough and wasnt really needed anymore anyway now that he is done with surgeries for the foreseeable future. He was not happy with the process of removing the central line but i bet he was pretty thrilled to get that silly boxing glove off!

its also pretty evident to us that the removal of some of that excess fluid in his head has improved his stats and made him so much more alert and awake! hes such a happy little guy when hes awake too its so cute! however he rarely lets me get a decent picture with his eyes open! camera shy already!

this afternoon when i got back to the hospital after dropping jason off at the ferry so he could go to work, Rowans nurse asked if i would like to try breastfeeding (until now ive been pumping and they give it to him'through his tube). i if ciurse said yes, and we got him out of his isolette. the nurse warned me that with babies his age, you have to slowly get them into nursing, and that if we got him to sniff around and lick a little, we were doing great. well, he had other plans, and latched on pretty good the first try! once we got the shield put on, he did even better! the nurse said that if, at some ooint tonight, he was fairly awake during a feeding time, they might even try him on a bottle!! one of the things they need before they go home is to be able to take all their feedings by step closer to going home!

Rowan had his usual monday cranial ultrasound, which showed that the swelling in the ventricles has gone down yay! and that the cysts are getting a bit bigger. neurology has been notified and they will now be involved in his care. catching these things as early as we have will not affect whatever outcome he has, however we will be able to get him into therapies much sooner than if he was a regular baby. these things can go nearly a year before being diagnosed.

get this thing off my arm!
we also finally got a tentative date to bring him home...december 20. right before christmas. depending on how he does, this date could change, the better he does the earlier he can come home! we have a meeting with the caseworker, and the neurologists and other various doctors that he will see in about two weeks to discuss his prognosis and what types of things we should expect to need when we get him home. theres a light at the end of the tunnel now. thank goodness.