See how we did at Life in the Nest!

We have made it  to the halfway point of our financial fast – read how we are doing at Life in the Nest!

Well I have hit the big time!  A friend of mine, and fellow blogger, asked me to be a guest blogger at her blog Life in the Nest!  She has a great blog about all things frugal, family and fun in the home and after I told her of our family’s latest challenge she asked me to chronicle it on her site!  How exciting!  Not to worry, this challenge is self-inflicted and one we are looking forward to with hopes of great financial rewards!!!  To read about it simply click on the link to Life in the Nest.  (This is just the beginning, when I become a famous blogger you can say you read me first here 😉

I didn’t even try to hold in the tears as we drove away from the hospital with our full  minivan Monday evening.  I can’t begin to describe how it felt to have all of my children with me, to be done with the NICU, to know that my boys are healthy and now solely in our care.  It was surreal, overwhelming, wonderful, nerve-racking, a moment I will never forget.  It was 115 days start to finish since I was admitted into the hospital with signs of labor till this moment.  115 days that have forever changed Tim and I, as well as Kennedy I imagine as she is old enough to be impacted by this life event.  To drive away from the hospital with the knowledge that we made it through was so  powerful, and beyond an answered prayer.

And then reality set in!  Our first 10 minutes at home with our two boys was anything but surreal.  Loud, chaotic, hectic would be a better description!  We set the boys down in their car seats and the next thing we know they are both crying and have alarms blaring.  The girls are asking for it to stop, the dogs are barking and Tim and I are laughing at the entire mess.  We can’t figure out which alarm is still beeping, which boy to pick up first and so the craziness continues for what seemed like hours (probably another 30 seconds).  But then we got our bearings and the beeping stopped.  Tim cradled both boys as I settled in the girls, and the house quieted down.  But still it was entertaining and made me wish we had a camera set up to capture the moment.  It couldn’t have been a more stressful homecoming if it was scripted.  Short lived, but stressful.  Since that first few minutes at home with Griffin and Carter we have all come to embrace our new roles at home.  The girls are wonderful and loving, the dogs are calm and protective and Tim and I are savoring each minute of sleep we can get and enjoying holding the boys as much as we are able.

I’m sure when I am farther away from it I will sit down and write a reflection of all that we have been through in the last 115 days.  I would even like to transition this blog from one chronicling our family’s journey in the NICU to one that reflects our daily life.  But as I type my 28th post I have Griffin snuggled in my wrap around my chest, one hand periodically rocking Carter in his bouncy seat, Beau’s ( our boxer/mastiff mix) head on my lap while listening to Tim and the girls do dishes in the kitchen.  Right now I’m too close to life to write about it.  But my goal is to keep writing because I love it and I feel like it centers me.  In the meantime here are the first of many pictures from a little photo shoot I did with the boys today!  I plan to finish the photo shoot tomorrow when they are sleepier (thus more cooperative), oh my poor boys – I just can’t help myself!

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Being an elementary teacher I have seen first hand the celebration that comes with reaching 100 days.  There are hats, parades, 100 treats, songs, and overall jubilation that the young students have reached 100 days in schools.  In Chinese cultures some families host a 100 day celebration for their infants’.  This is where they introduce the baby to the family and celebrate that the child has survived so long, thus showing its vitality for life.  The boys were 100 days on Monday – so how did we celebrate you ask?  Well, Carter is home and had his first pediatrician appointment.  He cried a lot while being examined.  Griffin, still in the hospital but in preparation for coming home was circumcised.  Man, what celebrations!  Poor boys!  In all honesty though, I didn’t realize Monday was 100 days.  I barely knew it was Monday – I’m so tired and busy working to perfect my multitasking skills!  But had I known I admit the elementary school teacher in me would not have been able to resist a little celebration – there would have been cupcakes and party signs for sure!  I guess I will have to save that celebration for when both boys are home.

Speaking of having them home, we are in heaven having Carter home with us.  We are so grateful to have him with us we hardly complain about getting up throughout the night and poopy diapers!  When I walked into Carter’s room on Thursday and his nurse said we could take him home it didn’t seem real.  All of those months, watching him from his bed.  Helping the nurses take care of my child was coming to a close, making Carter ours to take care of all by ourselves.  A very surreal feeling.  We didn’t tell the girls on purpose since they had been hearing Carter was coming home any day for weeks now, we knew if we told them it would just be lip service and they wouldn’t believe us.  The joy on Kennedy’s face is a joy I will remember forever – her show of excitement makes me wish I was five again and could feel such joy without  the burden of stress along with it.

Carter being home, with all of his oxygen tubing, beeping monitors and medications has been easier than I had expected.  After all, that is all we have known for our boys – wires, alarms and medical needs.  Not to mention, unlike bringing home a “normal” newborn where you may have a few encounters with a nurse to teach you all the tricks of keeping your baby happy, eating, comfy and calm I had three months!  I should write a book with all the tricks the nurses taught me, if I can’t make my boys content then shame on me for not paying attention to their insider tips.

However, the stress of not being able to see Griffin as much as I would like has been hard.  I know that Griffin is being taken care of in the NICU and I know that Carter needs me at home for his home nurse visits, multiple doctors appointments he has already had since coming home, and of course for snuggling time!  Still, I miss Griffin terribly and am counting the minutes until we can have everyone healthy and under one roof.  We hope that will be home some time at the beginning of next week or this weekend.  Griffin still has brady spells in which his heart rate drops dangerously low.  Most of these are when he is eating and are caused by reflux, which is common for preemies.  But some are when he is sleeping and without warning, these are the scary ones and the ones that are keeping him in the NICU.   Like his younger brother, Griffin will come home with a heart and respiratory monitor just to keep us on our toes and as an extra layer of attentiveness for him.  Still, these machines are not always reliable and are forever sending ear-piercing beeps throughout our home.

In the end the bottom line is my boys are 100 days old and they have only one surgery between them, no brain bleeds, no major heart problems, in fact no major problems to speak of  after being born 15 weeks early weighing only 1 pound, 8 ounces each.  So I will take the loud beeps and the long hospital stay if I have to.   A belated happy 100 days to my tiny little fighters!

Carter is home!!!!   I’m not sure that it has set in yet that he is finally home – maybe tomorrow when I wake up, or in the middle of the night when I hear him cry it will become real.  It is just so amazing – I have no words.  Griffin should follow soon! 

I will post more details and thoughts later including video (thanks Pam:) and pictures!  Right now I am busy…holding my son!

For those of you who read my last post, where I wrote that 90 days doesn’t seem as long as three months.  Where I wrote that I can handle it as long as I keep my mind on the light at the end of the tunnel, where I wrote that segmenting the time helps it pass faster.  Forget all of that.  I want out!  Talk about segmenting my time, I am close to counting the minutes! 

I think I have asked every doctor that ever worked on my boys when they think they will be able to come home.  Can you blame me?  We received Carter’s home oxygen equipment on December 20th and they made sure we were set for him at home three weeks ago!  I have canceled two pediatrician appointments for him and told the home nurse three times on the phone that “no, she doesn’t need to come to check on him, he is still in NICU”.  Can you blame me for getting antsy! 

I have become quite skeptical when the Doctors send a young, sweet resident in to the room to tell me their idea of when the boys will be leaving.  I suppress a cynical smile, knowing from experience it never turns out the way that they say.  That truly, the boys will be home when the boys are ready to be home.  I appreciate the sympathetic tone of the resident who has just begun their tour in the NICU but you can’t pull the wool over my eyes, I have been here for three months.  So there is no placating me.  I have seen too much and experienced a delayed discharge now for three weeks to hold them to their discharge dates.  It is my fault really, for being so antsy, I should know better than to focus on the end.  It is like when you are on a road trip and you need a rest stop.  You can hold it in without problem, but when the road signs start counting down the nearest rest stop by the mile,  you feel as though you will burst.  You jump out of the car before it comes to a complete stop, as you walk/run into the building and dance in place as you wait in line – time stands still.  And you doubt if you can wait any longer.  But you do, you have had a lifetime of learning to hold it and wait and everything turns out fine.  Well – I am dancing in line!  Reason tells me I can hold it, but in the moment, I have doubts.  I will simply have to be patient, and keep calm and content with what is.  Easier said than done!

All of this being said, I do believe Carter will be home by the end of the week.  He is starting to pick up on his eating and getting back to himself after his eye surgery last Thursday.  Realistically I think he should be discharged some time this weekend.  But I could be wrong.  Carter is in charge here when it comes to him being ready.  We will follow his lead.  As for Griffin he is on the right track too.  Yesterday morning they thought he could be home by Friday.  I nearly choked – as a nurse and resident that I had never met before told me he was ready to go.  Thirty minutes later he had a bad Brady spell when refluxing and both of them recounted their statements.  That is the Griffin I know.  On the up side though, he is starting the process to discharge and is officially on a “spell count”.  While he will most likely come home on a monitor to check for spells he still needs to go 7 days without a bad spell.  Yesterday the earliest he could come home was next Monday, today he had another bad spell – so we are looking at next Tuesday.  Let the counting begin! 

Don’t worry about me, I’m not looking for sympathy.  I just needed to vent a bit.  I know the boys will be home soon, I know this is temporary, I know that we have come so far and we are thankful for that,  I know that the boys will come home when they are ready, I know this is the home stretch, I know that in a month from now we will look back and forget what it was like to count the minutes, I know we will be fine – but I still want out…yesterday!

I must say I am not sure where my days go.  (Which is not a good indication for how may days will be when I have all four kids at home!)  I mean to post all the exciting changes happening with the boys but then the next thing I know I am exhausted and heading to bed.  So I apologize to my followers.  A couple of months ago, when things were rough I posted all the time to focus my thoughts, but now that things are moving quickly and somewhat smoothly I only post every few weeks.  That isn’t fair that I keep all the good stuff to myself!  So here is a little happy update for you – a little gift with pictures and all! 

• Griffin is off of oxygen support!  It has been nearly a week and Griffin is thriving without any O2 blowing up his nose!!  Go Griffin!!
• Carter’s oxygen was set to what they call “home settings”.  because of his lung disease Carter will need to come home on O2 so instead of trying to wean him off the cannula they simply switched his settings to match what he would be at when he came home.   He took the switch so well that they set the course for him to come home!  So…we have all the equipment (including 50 ft. of tubing so we can still move about the house with him) for him to have O2 at home.  The only thing keeping him in the NICU now is his eyes.  He has a common preemie problem in his right eye that needs to be checked on Saturday.  If it isn’t correcting on its own he will need laser surgery, if it is getting better we can take him home!  Amazing!
• Both Griffin and Carter have attempted breastfeeding.  This takes lots of practice for them since it is usually a skill they won’t master until close to 40 weeks.  (they are 36 weeks now)  And even though Carter doesn’t seem to like the taste of breast milk he is getting the hang of feasting on the free stuff! Very important when feeding two!
• Carter is now considered a “feeder and grower”!  A big deal for me, meaning that his only issue (minus the O2) is that he needs to grow up!  He has already broken the 5 lb mark and is quickly moving into newborn clothes!
• Griffin should be moving to a crib this morning.  He tried last week when he was smaller but couldn’t hold his temperature.  Hopefully now that he is 4.5 lbs he will be good to go!  This is a big deal for Tim and I because once they are in a crib we are pretty much self-sufficient in taking care of the boys in the NICU.  It is like having real babies!
• On a few occasions I was able to hold both boys at the same time (see pictures below).  Carter still is in somewhat of isolation because he tested positive for a bacteria in his trachea.  However this was long ago when he was ventilated.  the bacteria is gone but protocol requires him to be in contact precautions until he goes home. 
• I have given the boys baths!  And was able to put all of their leads back on for their monitors with success!  A very important skill since Carter will still be wearing them when he comes home.

On a personal note I think we have found a minivan to buy to fit our big family and we are quickly getting the house prepared to have newborns at home.  Hopefully Carter first in a week and then Griffin will follow when he is ready to figure out his eating/digestion skills.  Things are coming together so far, but as always we are very cautiously optimistic.  The boys have come so far, but they still have a long way to go so we try not to get ahead of ourselves. 

The pictures below are from my phone, the quality isn’t wonderful but offer a glimpse of my view of the boys each day! 

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