Thursday, June 16, 2011

Post Op...

Monday 6/13/11 - Addison underwent surgery to hopefully cure her reflux, help her gain more weight and get her home with us. Doctor's performed surgery for nearly 4 hours to place a Nissin, G-Tube and complete two bilateral hernia repairs. She and I now have matching scars on our bellies, mine of course from the c-section, hers from the hernia repair.

Monday she was doing very well and they said they probably could have taken her off the ventilator in the OR, but they wanted to wait and let the NICU staff handle during recovery. (Mind you she was only on 1 liter nasal cannula pre surgery), We were elated and relieved that she had done so well. By the next morning Addison had declined rapidly from a respiratory stand point. It was obvious that she was in a lot of pain too, but it didn't seem like much was being done about. That being said, I know there is a fine line between keeping her comfy and sedating her to a point that she needs too much support from the ventilator.

By Wednesday she was a little worse. Higher vent settings and conversation about putting her back on the Oscillator were now in play. Addison was touchy and again still in pain. Her oxygen requirements were as high as 70% at one point. At this point Jake and I both are scared and concerned. They decided to start her on Nitrous to help with O2 deliver and finally after a looooonnnngggg day they decided last night to increase her pain medicine and sedate her a little bit more to make her more comfortable.

And that is where we are now, overnight they were able to bring her rate down from 45 to 40 and her O2 is now right around 30%, this is very small progress but progress none the less. There is talk that they might start trying to feed her tomorrow or the next day, until then she continues to get her nutrition in I.V. form.

Just keep praying that they can at least get her settings low enough to put her on Si-Pap for a while, anything to get her off the damn ventilator. I hate it... I hated it when they were born, and I hate it even more now. Seeing a 8 1/2 pound - strong, otherwise healthy baby - with that tube down her throat is not for the faint at heart to say the least.

God obviously thinks we can handle this. All I know is she is ours and we love her more then anything in this world. Our wish is to have her home and healthy so we can start living life as a family and actually enjoying these moments rather then visiting a hospital all day every day. It's tiring especially with Blake in tow, but let me tell you this little boy has been a trooper. I know he hates it there but he is such a big boy and loves to see his sister every day.

One of the hardest things about this whole transition is the fact that there are a lot of missing pieces and there is that loss of  "respect" for us as parents. HUGE parts of her history are missing, and this person isn't aware of this, etc. Last night the resident told me that she had no clue they used steriods to get Addison off the vent the first time. I am pretty sure that is documented somewhere and that to me is VITAL and HUGE peice of information.

And then there is the relationship with the nurses. I seriously had a nurse who has only known Addison for two days, tell me "Do not touch her." Excuse me but by gently placing my hand on hers and calmly talking to her to try and soothe her, is probably the best thing for her right now. I realize you may be her nurse, but I am her Mom, I know what is comforting to her and that's what she needs right now when she is having a moment where she is freaking out and looking at me with these eyes, screaming "DO SOMETHING MOMMMY, MAKE IT STOP." I would give anything to hold her and surround her in love, but I know I can't right now. The least I can do is hold her hand and let her know I am there. I have been doing this long enough to know if she doesn't like what I am doing and I know when to leave her alone.

I should also add this is the same nurse who found it vastly appropriate to criticize how I was feeding Blake and tell me that after only 5 minutes of being there he was bored. Not exactly like I have alot of options at this point to entertain him but I am pretty sure it wasn't boredom but rather hunger, and I am pretty sure there was nothing wrong with holding the bottle in his mouth while he was still in the stroller, at least long enough to calm him down so I could pick him up. Seriously she whacked me in the arm with a pile of papers and demanded that he deserved to be held and cuddled close and if I was breastfeeding I wouldn't be able to get away with that foolishness.

Ok but yet you think it's ok to let a baby's high O2 stat alarm go off for over a half an hour and not adjust her oxygen because you are too busy checking you email and you think its appropriate to say "enough Addison stop with the bells now." and silence that high stat alarm while you gripe about how much you hate your job??? Very professional. You may be having a rough day, but seriously if you think this is bad you should have seen Addison when she was first born and those nurses who cared for her did it gracefully and never once complained. After only caring for her once, I am very sorry but I don't think you get that right. This is very mild compared to the beginning.

When I talked to the charge nurse about her behavior, I was told this nurse is famous for being harsh and abrasive and that it's not the first time they've gotten complaints about her behavior. Then please tell me why something hasn't been done about it. I probably would have tolerated most of her behavior, but to smack someone with a pile of papers like they are a dog or a child is beyond disrespectful. And I'd like to know even more why she was assigned to Addison again the following day.
I miss the old hospital and the people there who took such good care of both babies. I wish we could still be there. The nurses there were like family to us and we all had a mutual respect for one another. Here it's not the same. They treat us like we are new at this game and like we are clueless.With this hospital comes a "big time name" and there for a "big time attitude" from some of their employees, like because they work there they are better then anyone else. Sigh... we'll get there I suppose, one day at a time, one foot in front of the other.

Thursday, June 9, 2011

Not so random ramblings of a "we've been in the NICU too long" Mom.

Being a NICU mom, I've experienced a lot of things. In the beginning they tell you it's going to be a roller coaster ride, so fasten your seat belt. No one asked if I liked roller coasters (I don't) and no one asked if I wanted to get on the roller coaster (I didn't). But none the less I stood in line for 26 weeks, to endure the longest roller coaster ride of my life and to witness a beautiful miracle unfold before my eyes.

I've learned a lot...

ALWAYS TRUST YOUR MATERNAL INSTINCT....and don't be afraid to speak up and voice your concerns.

IT'S OK TO QUESTION AUTHORITY (just because they have the medical degree doesn't mean they know your baby as well as you do, you are part of a vital team that is making sure your baby thrives!)

YOU HAVE VERY LITTLE CONTROL OF THE SITUATION... very very little control.  I'd say 95% of what happens in the NICU just happens, and quickly too. 95% of the care your child receives is what I always "have to care" as in it has to happen for your baby to survive. You will get used to things just happening and then they throw a wrench in things and ask you to make a decision, large or small.

YOU WILL FIND OUT WHO YOUR TRUE FRIENDS (and family) ARE...cling to those who are really there for you and get rid of the negative.

YOU WILL GET A LOT OF UNSOLICITED ADVICE... people close to you will suddenly become experts on Preemies and/or make constant comparisons.

EVERY PREEMIE IS DIFFERENT...including my TRY NOT TO COMPARE THEM TO OTHER BABIES...they are unique in their own way.

COME UP WITH SOME KIND OF me it will help you maintain your sanity and give you some sense of normalcy.

MAKE TIME FOR YOURSELF...AND YOUR SPOUSE...even if its 30 minutes, just do it. Go to dinner, see a movie, take a bubble bath, something. (This is easier said then done, but it does help).

PRAY...prayer is a powerful thing. Trust that God will not forsake you and what is HIS WILL , will be done.

TRY NOT TO LET YOUR MIND WANDER... I by nature am a planner, I need a plan and I need to know what happens next. I often found myself thinking about the what ifs and what will bes. Whenever I felt like I was slipping to far, I went back to the above and PRAYED.

As Addison approaches surgery day (Monday) I wonder and pray that we made the right choice. I ask myself is she strong enough, then curse myself for doubting her. Of course she is strong enough, she is stronger then anyone in this world. She is fierce and empowering (like me), determined and persistent (like her daddy), really she is the best this world has to offer. An amazing little person who is ready to bloom. I pray she keeps fighting and exceeds all the expectations set forth for her. I pray that we made the best decision for her and that she wants this... we are expected to be her voice, and I pray that in years to come she understand all we did was out of love.

Two weeks home at home with Blake under my belt, I feel accomplished but lost at the same time. This isn't how I planned, not how I though at all. Once I knew there was a chance we'd have preemies, I knew one would come home first, but I thought it would be just a few days, not weeks.  I love having Blake home, but wish Addison was here too. (Things were easier when they were all in one place, not that I want Blake to still be there.) This isn't the routine I wanted for Blake and Addison. I envisioned waking when "Daddy" goes to work and feeding those first AM bottles. Snuggling with two little ones in my arms and who knows, maybe going back to sleep just for a little while (or at least letting the twins sleep), followed by tummy time, walks in the park, swinging in their babies swings, bouncy chair time, dinner with Daddy when he gets home from work, bottles, bottles, bottles, bath time, bed time and anything else we could come up with in between. Instead it's been up for a bottle, shower time for mommy, get dress, go visit Addison, try to juggle two babies without disturbing the whole hospital with a screaming infant.

But it will be ok, not much longer. Soon Addison with join her brother here at home and I will wonder what the hell I was so worried about (that is when I have time to wonder).

That's a lot for one night, but if you read it all thanks. And thanks for the prayers that you continue to pray.

Sunday, June 5, 2011

I thought things were going to get better here...

(At the new hospital that is) But sadly they haven't. Addison has been there for a week now and we are no closer to surgery then we were the day she was admitted. They wanted first to try stomach feeds again. She tolerated those well for a little bit (a day or two tops) then she started have episodes where milk would come out of her nose/mouth, so they upped her Prevacid dose for 24 hours. Then they decide lets stop her Prevacid all together in preparation for her pH study (to measure the amount/times of reflux), since then she has began vomiting (another sure fire sign of reflux), so what do they decide to do? Move her feeding tube back to OJ for today and then they will move it back to her stomach tomorrow for 24 hours to do the pH study and then they will decide if she needs the Nissin.

Seriously? I am think she has clearly demonstrated the need for the surgery. Move on and quit dragging your feet. I am sick of this, beyond sick of it. I am ready to have her home and on the way to recovery. And what's better is we have asked several times to speak with the surgeons who will be doing her surgery, they refuse to consult or talk to us until "we know for sure she needs the surgery" and are saying that won't happen until the end of this week possibly. So yet another week will go by and no progress. And honestly I think the surgeons should be speaking to us now so that if, there seems to be no doubt in my mind, she needs the surgery we as her parents can have some time to think about it and make the best decision for her.

And as usual everything changes with a change in Attendings. Weekends are usually the worse unless Dr. B is working, she likes to "shake things up" as she puts it, but honestly its the only time Addison makes progress on the weekends.

Well I am off to shower and head to the hospital to visit baby girl and talk to these doctors once more. Maybe today someone will be willing to listen and get the ball rolling.