Tuesday, April 17, 2012

Possible Homecoming!!!!

Everett had a good night - his bili levels this morning were a whopping 11!!!!!! So so hoping that means our ticket home is in the works. The nurses are getting final test (PKU, etc) together. The doctor is making rounds at all the hospitals today so it will likely be late this afternoon when we receive a yay or nay on the discharge front. Just the possibility...one short week...in which we've absolutely lived a lifetime...and our sweet Everett is just beautiful and amazing and nothing short of a miracle...I've lost count of our miracles...


I just met with the school board representatives. The paperwork for David is now signed. I had read, over and over the care plan and my few questions were answered. Somehow, I feel that if he were school age, things would be a bit more complicated. But for a 3 year old, goals are pretty straight forward (I'm also hoping I don't have a false sense of confidence about all of this - I know I have rights to call another meeting in the future should I feel goals are not being achieved. I also requested names and phone numbers for supervisors in an effort to learn at least some of the chain of command should (ha - should) there be an issue.

David was listed to receive services in a school setting. I requested they be in home only. I was warned that the speech therapist may or may not take issue with such a request...and judging by her awesome voice mails and failure to return my call, I'm bracing myself, but still hoping for the best. We've all gotten off to a bit of a confusing start and it will take time to settle in...or learn rather, a new system. I also voiced concerns that specific goals (nesting cups, learning colors, numbers) set the bar a bit too low for David. With me, he can do many, if not all of these things on command...but obviously did not cooperate so well under pressure. I was assured that goals would be progressive and left open ended to accommodate development. Also, paperwork takes month (obviously) to complete in such a slow system so they assured me that it is considered that David may have mastered some goals by the completion of his file.

My hope is that this will supplement his private therapy and simply throw another "professional" opinion in the hat. David acts more like the David I know and adore with his private therapists. With the school board people...not even close. But in time, I am hoping we will all feel slightly less threatened. If not, I can say we tried. We utilized all resources and some just didn't fit. Simple as that.

Just wanting to provide our children with the resources they need to be the best they can be...make their own decisions and gain a great sense of autonomy and self confidence. They are absolutely amazing and have every ounce of potential...to leave that locked and to not put forth effort when I feel we've hit a wall, would be such a disservice not just to them, but to others. Mary Louise, David and Everett: you can do great things sweet babies. Absolutely you can...and for me and your Daddy, you certainly already have.


Everett lost one ounce of weight last night. I'm not sure what this means as far as his pending discharge. Again, my gut feeling is that he'll do just fine once we can settle in at home and feed on HIS schedule rather than the NICU's more regimented one. Last night's nurse wanted me to nurse him for no more than 20 minutes then follow up with a bottle and be done at 30 minutes. While I understand that this "by the book" request makes sense in clinical terms, it's a little difficult, not to mention stressful, to watch the clock so closely while simultaneously relaxing enough to allow proper let down. None the less, Everett nursed like a champ and pooped at least a little at almost every feeding sweet boy...(still wondering where that ounce of weight went? out with the cursed bilirubin I'd say) His day nurse allows me to feed for longer periods - especially since he's just in an open bassinet now as opposed to the lights. He nurses for about 35 minutes or so before just falling asleep. Then he sleeps pretty much until his next feeding. Diaper change, swaddle, unswaddle, nurse, diaper change, sleep, repeat. Angel face, starfish hands, rooting grunts...how can you not smile just to think about it?

So wanting to type out some earth shattering good news in a few short hours...many many thanks for the thoughts and prayers.


Oh P.S. I found out this morning that I had a placental abruption as well. Makes total sense - I mean how on earth could Everett get "out" and into my abdominal cavity without yanking his placenta along with him? Anyhow, as I said, I haven't been quite ready to ask too many big questions just yet - only focusing on getting our little one home. I know I'll get a more complete story at my OB follow up...but the amount of trouble we were in...just mind blowing to even consider.

My leg and ankle (ha - can-kle) swelling looks like it's just about resolved this morning. Feeling a little better everyday...and I got to keep my lady parts as well! ha. I'm a lucky lucky gal.


  1. Heather, I am so happy that little man might be home today! Hoping and praying for that. Also wanted to thank you for continuing to update on David. I would not have known about early steps if it weren't for reading your blog. My son has had the initial consult, and then the secondary one, determining that he does need speech therapy, only...which is what I though all along (Despite, many people, including my own relatives and his father, telling me I was over reacting).

    I am glad that you are doing well, also. I was wondering about the placental abruption, when you mentioned that the doctor was able to "stop the bleeding". Because, I think the actual uterine rupture would cause the contents of your uterus to obviously empty into your abdominal cavity, but by itself, would not have caused blood loss. The placental abruption is what had happened to me on a regular c-section, as mentioned in a previous comment. They did something called a B-lynch stitch to save my uterus. I could be totally wrong on this theory, as I'm obviously not an MD. I am glad you got to "keep your lady parts!"

    Hope all continues to go well for you and Baby E!


  2. Happy news!! Hoping the next update is a "we're all under one roof" picture - EEEEEKK!