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Friday, June 25, 2010

Shes got a ticket to Ride...Shes got a ticket to ride and she really cares!!!!!

I am not sure how anyone deals with a crisis situation without any family around to help them.......oh wait, we are in that situation and I guess we are not dealing with it very well(at least I am not).

True to form, my mother is coming to the rescue. She will be here next Friday, not a moment too soon, as I was one Calaveras County frog jump away from the funny farm. Thank all of you who emailed me to see what I needed. I will get back to all of you and I got some great and interesting offers....hmmmmmmmm. Will write more when my Mom comes and maybe even catch everybody up on when Thurston was born. By the way, now that I know my mommy is coming, the cup now not only looks half full, but is overflowing at the top..............thats really all I mommy :)(and thanx grandma/mimi for helping....i love and miss you so much.

Wednesday, June 23, 2010

Its my blogy and I'll write what I want to....write what I want to....write what I want to, you'd write it too if it happened to you....

I find that every post I write is sad, whiney, complainy etc. Let me tell you why, I'll be brief.....because on the days that I am actually happy , or at least , not sad, I don't feel like writing. So its not that I don't have good days, its just that I'd rather just enjoy that moment. Misery likes company and I don't know the saying for Happiness....Happiness.... I guess......wants to be left alone:)!!!!!

All along the watchtower..........

There must be someway out of here
Said the Joker to the thief
There is just too much confusion
I cant get no relief

One of the hardest parts about being in the NICU, and something that is hard to avoid when you have been there for as long as we have(108 days and still counting), is watching other babies come in, get healthy, and then leave. I know I know, you are not supposed to compare, you are not supposed to pay attention to all of the other babies, out there in the open, hanging out with their nasal cannulas or sometimes nothing, sucking on their bottles, satting in the 99's/100's, on 21 percent oxygen, with their joyful parents taking pictures, bringing in the grandparents to ooooooh and ahhhhhhhhhh...yea they make it soooooooooo easy for us not to compare our kids let me tell you. Yea they decided to put pretty much the sickest baby this NICU has ever seen(not my words mind you but pretty much any nurse or doctor I have encountered likes to regale me with that phrase)smack dab in the entrance where we get to see EVERY SINGLE PERSON AND BABY walk by and where we have a perfect view of the entire NICU, almost as if we were a guard of the watchtower(they do call him the mayor, a term they use for the baby who is currently the longest NICU resident).

Thurston has now been on cpap for 11 weeks and has been doing nasal cannula sprints for about 2 weeks now. He is satting anywhere from the 40's to the high 60's(again 21 percent being the ideal)There is always another kiddos stats up in Thurstons room so the nurse can keep her eye on the other baby(or 2) she is watching....always the same.....high satting in the 99's/100's(Thurston usually hangs in the upper 80s or desats). He is 15 and a half weeks old(almost 4 months old). He is now 2 and a half weeks past his due date(3 weeks if you count my obgyn's estimate). AND STILL no light at the end of the tunnel. Still has not taken a bottle, still with the g-tube, still laying in his little bed. I had asked the doc yesterday to estimate when he could come home and she refused. They dont like to do that in case they are off.....I mean its not like Thurston is a car that needs repaired or something..NOPE its just not that easy to estimate.

In the meantime, Chad and I are hanging by a thread literally. We dont see each other at all, we are the proverbial two ships that pass in the night. As soon as he comes home I leave and stay at the NICU for 4 or 5 hours, come home around 1230-1am pump and go to bed by 230am. I have started to go up now in the day as well as I found a sitter for Viola so I am able to go for about 4 hours in the day. Chad goes at 4pm every day(thank god his work understands our situation). On the weekends we take turns going in the day and at night. In between, I pump and Chad watches Viola. People keep saying, you need to take care of yourself...With what we have no time or money to really do that....we have no family here, and even though our insurance is covering almost everything, we have incurred unexpected expenses(almost 700 dollars in breast pump rentals and storage bags, who knows how much for the extra gas going back and forth to the NICU, money for child care etc.). I really dont know how much longer we can keep up this pace. It seems there is no end in sight.......

I thought of so many solutions to our flight Thurston to a NICU in Ohio near our family, bring Thurston home with a 24 hour nurse(doesn't seem likely), sleep at the hospital at night on the couch in the waiting room so I could spend more time with him........I am at a loss, unusual for me, a person who has always found solutions to any problem I have had in life.....

I broke down again today. I wonder if they could estimate how much and how long it will take to repair me........................

Monday, June 14, 2010

One Hundred Days of Solitude..........

Gabriel Garcia Marquez once wrote:

“...human beings are not born once and for all on the day their mothers give birth to them, obliges them over and over again to give birth to themselves.”

It has now been 100 days in the NICU.......and Thurston has definitely re-birthed himself a 100 times over, everyday, emerging from his journey there, stronger, and more durable. It truly has been a surreal period of time for all of us.
If it were not for my daughter Viola, and of course my hubby Chad, I think I would have gone crazy by now. The NICU is a very strange place for any parent, but for me it is the antithesis of every parenting belief inherent deep within my soul.

When Viola was born, she was very coll icky. We were extremely frustrated parents and it killed me to know that my baby was in pain. She would not go in the stroller, car seat, baby swing, you name it. She would not let us put her down for two seconds. We had a few sleepless nights until I decided to just sleep with her in my arms, with pillows supporting us......that night, we all slept like babies,and after about 3 months, when her colic disappeared we were able to lay her next to us in bed where she has remained ever since. I pretty much breastfed her on demand as well and let her decide when she was ready to wean. I realized after meeting like-minded peeps that I am an AP parent, or attachment parent. I allow the child to lead and tell me what she needs. Most attachment parenting involves one or more of the following.....natural birthing, co-sleeping, breastfeeding European styling, NON-crying it outing, baby-wearing, organic-buying, cloth-diapering, tree-hugging, nature-loving, recycling, back to the basics mentality. Let me tell you, the NICU is the EXACT opposite of how I want to parent, and there is no one to blame for this, it is what it is and they have taken excellent care of my baby(saved his life as a matter of fact) but nonetheless, it does make me cringe when I think of how divergent it is with my own parental philosophy.
For instance
-Natural birthing....well that one flew right out the window didn't it!!!!
-My son has slept in an incubator, and now a crib, by himself, away from Mommy and Daddy and Sissy...........we finally got him a glo-worm so he could co-sleep with something!
-He does "cry it out", not anyones fault, but there isn't always someone there to pick him up and nurture him when he cries...wish I could be there 24/7
-He is getting 70 percent formula and other additives that are probably not organic, and only 30 percent of my breast milk, through an NG tube, again, not anyones fault, he really does need to grow, but again, UGH!
-Um the breast pumping is pretty much de-tached parenting at its best!!!!!
-He soon will be bottle-fed, again, a must before he can go home, which kills me because they wont let me try and nurse him exclusively, but they need to know exactly how much he is getting, and if he can master suck, swallow breathe.....
-He of course wears disposable diapers, which I have used on and off with Viola, but am happy to say I am back to using cloth......its been a long 5 months...

So my sweet boy has endured a 100 days of solitude, detached from his parents in so many ways......yes he has docs, nurses, RT's, Ot's, and just about everyone in between, but he is still alone in his little bed, waiting for us to scoop him up and take him and his glo-worm home.

Thursday, June 10, 2010

How it all started

Well I was not sure if I was going to write about this journey. It seems like such a long journey to tell and it takes a while to regale one with all of the details so I thought I should put it all down on virtual paper and have a common spot for all. I am in the process of back tracking so if you want to read how it all started come back often as I am trying to get everyone caught up from the beginning. I am pretty much done with February which was when I found out something was wrong with the is probably the saddest of what I will post, outside of when Thurston's birth and first few weeks of life, which I will try and get up shortly.

Tuesday, June 8, 2010

On the sunny side of the street......

I am now the proud parent of a 5 pound butterball......Well ok so he is only 4 pounds 15.9 ounces, but if you threw a feather on the scale it would have read 5 pounds. YIPEEEEE. I realized looking back at writing this blog, that it seems kinda somber. When I started writing it only a couple of weeks ago, my intention was only to update people on Thurstons medical progress really, but somehow, within one day, it turned into a very cathardic outlet for what we had been through. I didnt realize how rough it really was, mostly for Thurston poor little guy....I still need to write about his birth and first few months in the nICU....more somber moments to regale you I thought I would change the mood and give you all some extremely positive news.....

My little man is 5 pounds. He is now a sumo-wrestler of the preemie world or even the size of a small newborn, a very small tinee tiny newborn, but a newborn nonetheless. He is still on the cpap as his lungs are just still needing that extra help, but the doc says its just a matter of time(hopefully a week) that they will try him back on the nasal cannula.....which means hopefully within the next couple of weeks we move on to trying to orally feed him where he gets to practice his suck, swallow and breathe technique, something he needs to master before they send him a packin!!!!!

His ROP (retinopathy of prematurity) is now RESOLVING....more yippppeeeee. It had been zone 2 stage 2 which is a little scary and they had to keep coming back to check his eyes, and if it continued to progress they would have had to do laser surgery on him. Now the eye doc says it is in zone 2/3 which is great(zone one is the center of the eye and the most dangerous zone for rop) and is 0-2 stage which means its regressing. So hopefully it will continue on this path. Whew, one less thing to worry about.

Also, the doctor had been concerned with his muscle tone last week. He has been pretty stiff in his legs and arching his back, both of which could point to some neurological issues(cp being one of them) although this could also be just a preemie issue, or what I have always thought, an issue related to how stressed out he is on the cpap, with reflux and gas bubbles from all the air pumped into his tummy. Well last night, the doctor came in when I was holding him and wanted to assess him. As she was bending his legs, checking his body she said, "Hey, I am really liking what I see here". She had told me that his muscles seem far more relaxed and his flexion is much better. She said she had never seen him relaxed before because she always does his assesment when the nurses are messing with him(in other words when he is stressed out and tense). She had a huge smile on her face and was very pleased. I of course am ecstatic. It is more common for preemies, especially IUGR preemies, to have developmental issues, sometimes mild, sometimes more severe, and Thurston from day one has pretty much been in the highest risk category as he is both IUGR and a preemie. So far, he seems to be developing great(for being born 1 pound 4 ounces)so the future just keeps looking brighter and brighter. I guess we can start looking on the sunnyside of the street!!!!

Friday, June 4, 2010

D-day: storming the beaches of normalcy!!!! 13 weeks actual 40 weeks gestation 1 day old adjusted

Yes today was the day, the day that my sweet boy should have been born. Due date day I will aptly nickname D-day. And boy has he been at the frontline of a battle, the battle for his life. His prematurity a nazish nightmare, an invasion of a full term pregnancy. So we continue to storm the beaches of normalcy. To try and find some kind of peace with our reality. It is today that the NICU will start counting his "adjusted age". So he is 3 months old actual, 1 day old adjusted. I cant believe he left my womb so early. I am feeling the mental duress of all of this. Today I did break down as one would expect. I should have been in a hospital room full of flowers and well-wishes with my sweet boy and husband and daughter snuggled up and warm, instead I am sitting here attatched to a pump, my sweet 2 year old daughter by my side watching Max and Ruby, my beautiful son, being seen by a pulmonologist to tell us how bad his bpd is and what the long term prognosis will be. I just never thought I would be in this situtation. It is one of those things that you only thought happened to other people. But I would never want anyone else to go through this. It is simply to painful for words.

Tuesday, June 1, 2010

Basic Instincts........

So my sweet little man is now 4 pounds 10 ounces way over the 2000 gram mark!!!!!! He is gaining like a champ. His lungs are still bad and they had to put him on cpap again and are not switching out the nasal cannula until he can start satting in the 20s/30s. Right now he is satting in the 40s/50s. I got to help give him a bath last night and oh boy did he not like it. He screamed and screamed(music to my never realize what you take for granted until you dont have it....for the first 2 months of Thurstons life I never got to hear him due to him being on the vent and ng tube crying is the most beautiful sound I will ever hear). Anyway, I started paniking because the nurse had to take his cpap mask off in order to bathe him and I was worried that he was not getting the oxygen he needed. She noticed my concern and told me that unfortunately parents are trained to look to the monitor to see how their babies are doing, rather than trained to look at the baby. She said you know he is doing well by the color of his skin, his lips, the fact he was pissed off and squirming, and crying. If he wasnt doing these things, thats when you start worrying. I kept thinking about this notion, that parents in the NICU turn off their natural instincts and start relying on what the doctors, nurses, and equipment are saying. She is so right that I need to just start listening to my sweet boy.
Because Thurston has IUGR(or growth restriction) they have constantly cautioned us at how this will effect his development. I like to nickname some of the doctors Oh there is Dr. Gloomy and Dr. Doomy just for some levity. I even had a run in with a nurse practitioner(this particular one I call Dr. Strangelove) that mentioned CP(cerebral Palsy..which you cant really diagnose until a child is around 18 months or so unless it is extremely severe)even though I only asked about Thurstons chronic lung disease. Chad called the doctor the next day and he told us that cp would havce nothing to do with his lungs and he wasnt sure why the nurse practitioner would even have mentioned it. I am really done with what seems to me hyperbole and all of this crystal ball bull shit. Chad has always told me, even in the bitter first few weeks,"he looks good Donna, he looks like a normal baby, just small". I am now inclined to believe my husband, who has never once lost faith in Thurston. He does look and act normal. He looks around, tracks, looks straight at you when you are talking to him, turns his head to noises, he is now clasping his hands together, he flexes his legs and arms and really, just seems like a normal baby. I wont delude myself to think that he may not have issues as he grows, but I am tired of also deluding myself into thinking that he doesnt have a shot at a somewhat normal life either. I am finally going to grab the proverbial bull by the horns and start utilizing something that every new mother has within her, those eternal motherly basic instincts.......