They told us there would be the lows...and today is one of them...so, it is time to gather all the love and strength we have and pull it together for our little boy...tears are behind my eyes...and there are not due to fear, but rather helplessness...not being able to take care of my son physically (but energetically....I am rocking it for him!!!)...it breaks my heart...but thank goodness for the amazing doctors and nurses of NICU...they are able to take care of him...and Clark's pediatrician...Dr. Efron, who is so darn sweet...he comes in every day to check on Clark and calls me to update...and always, always, greets me with smile and a hug...a good man. He was referred to me by Dr. Rothbart (the OB who delivered Clark)...they are actually best friends and went to high school together. They are both amazing! So, I must get my ego mind out of the way...the one that says I should be taking care of him...and just send him all the love I have..this is how I can take care of him...giant heart beams to you baby boy...giant, vibrant, sparkling, radiant, heart beams.
Clark did gain some weight and is at his highest yet...a whopping 805 grams (1 lb 12 oz). High! And then there's the lows...although Clark is digesting my milk with no residuals...he is not eliminating it...still not pooping...they are having to help him out with suppositories...which they don't want to do for too long as then he will come to rely on them and not develop the necessary functioning of the elimination organs...his belly is fully and showing 'loops' (where you can see the organs outlined on the belly)...so, they have taken him off the feeds once again and he is back to the IV. Also, the feeds could contribute to this next part. Lots of episodes of As, Bs and Ds as they call it. Apnea-forgetting breath, Brady-lowered heart rate and D-Saturation-lowered O2 levels...SO, they have put him back on the back-up to the CPAP...which basically gives him bursts of air in case he forgets. They are discussing intubating him, which is basically a ventilator that will do the breathing for him. They want him to work, but not too hard. He is getting lots of tests today, to make sure there is no infection, to check his blood, etc, etc. They want to make sure what is happening is just him being premature and not something else. He may be anemic...which will lead to a blood transfusion. Jason donated yesterday and we are hoping for a match...will know in a couple of days. And, his jaundice is kicking in again...so back under the lights he goes.
SO, today is a valley...today is a low. I must continue to breath slow and deep. Focus on the positive...Clark needs our love and our strength. Life is always handing us obstacles and the yoga is to have deep faith (sraddha) that despite the obstacles...we can achieve the goal of samadhi, complete absorption...with this life...our son...this moment...while also looking forward to the day we get to bring him home, healthy and happy....we must remember it no matter what...
Sraddha virya smriti samadhi prajna purvaka itaresam...
And this is why things like my husband's pumping post are so necessary to show that we still have a sense of humor in all this and we are just taking it one day at a time...
Om shanti, shanti, shantihi...in everything peace...
Ok, sweet thing, so this is not the best day, but remember yesterday.....OMG, what a happy day it was. So, little Clark may have to take a step back, cause he's sooooo damn little, he needs help. HE thinks he can do it all on his own, that's probably one of the reasons he decided he was ready to be born! The more I read, the more I see that he has a lot of Jason in him, in particular, his feistyness! The pooping thing? Remember this...cause when he starts to shit like a man, you will reflect back on this!!! I know you already are taking deep breaths..there is a light at the end of this tunnel and it won't be long before you start to see it flicker!! Hang in there, tomorrow is another day, let the experts take care of him for now, and you and Jason keep on doing what you do best, loving each other and Clark so much, it cannot help but make him stronger! Sending you all tons of heart beams!! ILY
ReplyDeleteHas Melissa Shore told you the story of her VERY chunky nephew yet? He was a preemie, too, smaller than Clark. Now he's a marshmallow. And I'm not just saying that. I truly think you should send pictures of the breast pumping, that way the whole world will be giggling with joy, and that pure laughter will translate to Clark. Just a thought. Love you!
ReplyDeleteAs they say, "One step forward, two steps back." But we are very optimistic for you both. I hope that little Clark is as comfortable as he can be. I feel like I want to cry when I think he is struggling SO hard to stay strong. We are going to look back one day on this and say, "I can't believe he was a preemie!" or "Are you sure that's Clark?" because he'll catch up.
ReplyDeleteChristy, at some point in the future, you will be in the middle of a very messy diaper change, and you will look back and say "I can't believe I was actually looking forward to this". And you being you, you will laugh and smile about it.
ReplyDeleteBTW, you said something about blood transfusion?? I have a couple of pints of nice top of the shelf O positive here if you need it. Just say the word. But don't ask where I got it from. You do NOT want to know.
Christy, just remember, you and Jason are going through all the ups and downs -- completely typical in each and every situation in a hospital setting -- for the first (and last!) time, but your doctors have all gone through this countless times with the tiny ones they care for. So trust Clark's in the best of hands, in the best of places. I met a new student in a Yoga Blend class and we shared being preemie stories. She too was born a rather looonnnng time ago, when technology and medicine were not as advanced as today, so trust that wee Clark is being beautifully cared for, will be provided what he needs to grow and strengthen and learn, and is of course, loved, loved, loved.
ReplyDeleteChristy - you are a rock! Don't worry, Clark is strong with all the love you and Jason have for him...not to mention all the love being sent your way from everyone you know. The doctors have given you every bit of information about this journey. You know about the peaks and valleys. Today is just a valley day...it will change. Your positive attitude and all the love you bring to Clark everyday is what counts. The technology and medicine are what the doctors are responsible for. This is going to be a long and winding road, but it does have a rainbow at the end of the it and Clark will be home - happy, healthy and pooping up a storm!
ReplyDeleteHi Christy,
ReplyDeleteAnthony had many of the same complications. Let's start with jaundice. I hated seeing him under those lights! But then I would try to envision he was just sunning, all cool with his shades on. He too was anemic and we even had a bout with anemia when he was home too -- Poly Vi Sol with Iron is still a daily supplement he takes and it is fantastic. Now seeing Anthony at two and a half and at the same level as his peers developmentally...he may have had to work a little harder to get there with therapy help, but sometimes I think he is better off than some of the kids who did not ever get any extra help. And finally on the growth scale -- 3 percentile in weight, but hey, he'll be long and lean cuz he is 75th percentile for his height and climbing! I'll be looking up to him one day soon!
I agree with the approach your doctors are taking. All of it. Try to make him work on his own but it is important to be cautious as far as not making him work too hard. Also, the digestion of your milk is unreal to me. Anthony never digested my milk until near the very end of his NICU stay. Suck, swallow and breathe was also incredibly difficult for Anthony once he did start digesting. He preferred the gavage. It was less work for him. So it was always this balance of making him work for it, but having compassion that other babies would still be in the womb kicking back and living the life at their age. So we push them. Then we pull back and help them. One step forward, two steps back.
And you have an amazing pediatrician in your corner. My son's pediatrician was also recommended by my OBGYN. I had another doctor all picked out before knowing what would happen. Dr. Klein came into my room the day after Anthony was born and said "your baby looks great." I asked who he was and he said "I'm your baby's pediatrician." I said, "oh I already have another one lined up," and he responded dead serious, "no, I'm your baby's pediatrician." That exchange has given me so many chuckles these past two years. He assigned himself to Anthony and I've never crossed that man since. Preemie doctors are very special, sometime tough. Dr. Klein too was at the NICU daily checking in on Anthony, fighting for him, showing face, telling the nurses what's up and talking to the doctors.
So Clark has got peeps. Boy does he have peeps. The amazing and professional professionals at the NICU, all of us, and mostly, you and Jason. You guys are doing great. Amazingly great. Wow is he a lucky kid. Your love and devotion to him -- incredible! He is going to be the stronger for it.
lovely girl - clark will have valley days but tomorrow he'll be on top of that hill again. I am sending many, many, vibrant, bright, pink and gold moonbeams tonight. tomorrow is a new day...
ReplyDeleteLove to Ya Girl...
ReplyDeleteOkay, reading this after I read Jason's (which is later in the day) never thought I would say, but "YEAH he pooped!" I really never realized how exciting this is till now, I am like giggly and happy that things are moving along...
AHHHH, breath by breath... Keep on Keeping on my Love, you have so much support.
(((smiles and hugs)))
ps. A special meal is waiting at home for you and Jason...Love me and Jay