Friday, April 20, 2012

Settling in- hitting the ground running:

Realizing that I sort of left the blog world hanging...we went home Wednesday.

Life as we knew it, is totally over and we are trying to find our new normal with little Everett tucked safely in with our family. Mere and Pops stayed until today to lend a hand - taking Mary Louise and David to the park and Children's Museum, helping with meals, bed time, and entertainment in general. Uncle Kyle is making a quick weekend trip back this way tomorrow. Brent will (I'm sure) go back to full time work next week and the kids and I will have to hammer out our routine over time. I'm nervous, but excited about it all. I know, especially right now, I won't be able to keep things (house) in order so it will just have to wait while I enjoy such a special time with our sweet tiny addition.

Everett is an absolute joy. Comparatively, he's the best sleeper. ever. (because comparatively, it really couldn't get much worse in the sleep department than the Meese and D!) He did "party" a bit last night - but honestly, this boy rarely cries. By rare, I mean he's fussed about 3 times since getting home- and 2 of those times were because I was trying to get the darn car seat straps to tighten correctly - what kid likes that? He grunts and roots when he's hungry (which today is about every 1.5 hours), sometimes stares at ML and D while they sing to him or give him kisses and otherwise sleeps, and poops. He still looks a little yellow, but it's not getting worse and his dirty diapers have gone to the "average" breast milk poops rather than the horrible bili poops so I'm hoping his little system is really up and running now. We have his first check up next Friday.

He nurses like an absolute champ AND takes a bottle of pumped milk with no problem. Upon leaving, the neonatologist wanted me to continue to follow up with pumped milk to help flush Everett's system for another 4 days. I've done that (well, I'm doing it)- but I'm over-producing. Alot. Like up to 15 ounces per day extra alot. So pumping is a necessity though I'm trying to cut down on the time of the session and number of sessions per day in an effort to curtail a little of the engorgement. A little ironic that I stressed for 2.5 years over producing ENOUGH for Mary Louise and David only to have an (almost) term pregnancy followed by the best flow. ever.


Mary Louise had a check up with the cardiologist last Wednesday (yep, in between getting one home, Brent brought one to have her heart checked). I'd totally forgotten about the appointment (imagine that!)but they called Brent to remind him and he took care of everything (swoon! my hero!). Mary Louise still has a coronary artery fistula (a small vessel that branches off of the coronary artery stealing blood from the heart muscle and leaking it into her lungs.) The fistula was noted during her initial checkups along with her PFO (patent foramen ovale) which closed not long after she got home from the NICU (when she was on home O2 for 1 month). So, the fistula was small - not warranting surgical repair but certainly needing a close watch. We were told that normal activity was fine, just to watch for her getting winded too easily. So far, she's been great. The re-check went well. Brent said they actually had a hard time even finding the fistula. The size is actually smaller than last year! (Last year, it was estimated that the fistula leached up to 5% of her heart's blood supply, so I don't have a number this year, but it's less than 5%). She will still be checked annually and as she gets older, this is something we need to keep in mind should she show interest in a very strenuous sport - track, CC, etc. - something with alot of running or cardio activity. She would need a cardio check up first just to make sure she can handle the added stress. Bottom line, she's doing well!


I made some wellness appointments with our (new) pedi for today as ML and D were turning 3 and I wanted to get the appts out of the way before the baby got here - HAHAHA - best laid plans.

Issues, well, they came up (more issues than just me hobbling in with Everett in tow rather than in belly):
1. the pedi doesn't see more than 1 child at a wellness visit AND she only leaves 2 slots for wellness check ups per day - 1 before lunch, office gets closed, one after lunch. oy. I took both thinking we'd just bite the bullet and get this done. In theory, this policy does work - I mean what kind of a nut would have 3 kids needing wellness checks in the same week?! It also allows for extra one on one time with the child. It just sort of stinks for me.

2. Our insurance is, well, a little unorthodox? We have our primary policies through Brent's work. When ML and D left the hospital, and the great denial of 2009 occurred and culminated with David being dropped from our private policy altogether and was then deemed "uninsurable" by the major (and minor) companies, I did some very serious homework. What I found was a very tiny clause in the Medicaid system - the buy in plan. We pay for a supplemental policy for ML and D- approved because of their extremely early births, extremely low birth weights, extremely high medical bills (they are slacking now) and of course, their extremely irritating (I like determined better though) mother who was out for a bit of blood where insurance was concerned. The policy picks up where our ins. leaves off. (ML had just over 100K left on her old primary policy when we left the hospital. We needed to find something for her as well) BUT, it is part of the Medicaid system. We, therefore sometimes get caught under the rules of the Kid Med program. This. is. a. pain...and it so happened today.

So, under the Kid Med program, the kids are supposed to see a Kid Med nurse for wellness. Not a doctor. I wanted them to see the doctor. That, and I brought them out (read as I went to a hell of alot of trouble getting us to the office) for a doctor's appointment - I even had a list of questions to ask!

Note to office staff: do not mess with a woman who has obviously JUST had a baby. Especially if said baby was born because the woman's girly organs just spontaneously decided to explode.

Yeah. I may have, uh, reacted strongly - especially since I discussed this appointment (and our insurance) with the staff TWICE this week.

Resolution: After clarifying each of our children's insurance policies with the office manager, the appointments were switched to "sick" appointments so that I could discuss my questions with the doctor. We have to go back to for the well appointments, BUT, they have been scheduled at the same time...only in June - because that's the first available appt. I could get with ML and D together. It'll work out. I'm learning the new office...and they'll likely dread their days when they see our name on the schedule from here on out...OK, I don't think I'm that effective - they might mumble under their breaths a little for like our next appointment or something...

The visits went well. I discussed Mary Louise's breathing treatments as she has had a number of mid-night coughing fits lately - waking her up, and either Brent or myself up. The breathing treatments via nebulizer are just ridiculously long and with her needing them more often (I assume because of the INSANE amount of pollen around our house right now), she is getting less and less cooperative. We are to try the same medications - but Flovent rather than Pulmacort and add Singular when we feel she is having flares. The treatments will be given via a spacer now. We tried it this evening and it will take a little time, but I think she'll get the hang of the technique before long. We also have the neb treatments on hand should she get "very tight" in her chest or actually get sick. The spacer medications are more for prevention. There is still a chance that she can outgrow much of this. In newest studies, severely premature children have shown new lung tissue growth through age 10 years. So, my goal remains to prevent as much as possible and to keep all of the kids - but her in particular - as healthy as possible to ensure that she has the very best chances she can.

Brent ended up bringing David back to the office. I was just done when I got home so Mary Louise and Everett and I enjoyed a bit of snuggle time on the couch.

The doctor fine tuned our routine as far as David's digestion is concerned. Right now, she feels much of his issue may be habit and fear surrounding bowel movements that have, in the past, been so very uncomfortable for him. She feels that with potty training (when he's ready of course) will help. Until then, we are to adjust his diet according to results and administer Miralax every other day, reducing the dose as needed for proper consistency (enough poop info right?). If things continue and he complains of abdominal pain, we will have xrays done to ensure that his abdominal surgeries have not caused a stricture secondary to scar tissue build up.

Still loving our pedi - don't worry - just an off day.


I met with David's new speech therapist with the state programs this week as well! Phew! are you exhausted yet??

After getting a very bad taste in my mouth over her pushiness by phone - she would call me no less than 4 times within a half hour. Then when I returned her call, she wouldn't answer. So, I would leave a message stating good times to call me. She would disregard (or not listen) and call 4 more times during a stated feeding time and leave nasty messages about disruption of services, non-compliance, blah blah blah.

As it turns out, she's a little old...and more than a little formal...and very very confident in her abilities. No, she doesn't leave a good impression. at. all. by phone. But, in person, she's a bit better.

Most importantly, David seemed incredibly comfortable with her approach and presence. Thankfully, this seemed most important to her as well.

We warmed up to each other pretty easily and I appreciated her spending extra time with me and explaining in great detail what she would be doing with David during sessions - and why she would choose the particular activites.

She will use a play therapy approach. Less structure. Lead primarily by David with encouragement from her. Steering, not correcting. She offered to write down specific areas to work on for me so that Brent and I can reinforce and practice with David. She also offered to communicate with his private therapist so that they can coordinate his care - especially during holiday and summer breaks.

She originally wrote that David was to be seen in a school setting. I requested services be home based only. I'm not sure she's all excited about me changing her plan - but she's not giving me a hard time about it either.

So, I'll take that. We'll have services with her through May then break for the summer. She'll be back in August.

I think that's the general run down here. Good golly, I can't believe I even remembered this much...Time to feed the E!!!

Pics to come - had to get the writing done lest (again) I forget it all...



  1. Thanks for the detailed post. So glad the whole family are safe together at home and little Everett is feeding so well. Oh my what a busy week you have had and straight after major surgery. Make sure you get lots of snuggle time with your little ones watching DVD's and don't worry about the housework

  2. Heather: First: So glad little Everett got home on Wed. and ...Wow! What an incredible schedule, but seems you guys have accomplished so much, and are in agreement with ML's treatments, and David's speech program, so I continue to pray all goes well in those arenas.

    In light of your post today, I just wanted to pass this along, in case you have not heard it. My mother had five kids, so this was her favorite little saying, which a friend of hers cross-stitched for her. The framed work of art is still displayed in my parent's home:

    " Cleaning and dusting can wait till tomorrow;
    for babies grow up much to our sorrow;
    So quiet down cobwebs, dust go to sleep;
    I'm rocking my baby and babies don't keep"

    Hang in there, super mom! Keeping all of you in my prayers!

  3. Glad things are working out but I guess that will tell you that you should know when enough is enough. You could have been pregnant for 35 weeks and then lost the baby. I think someone was trying to tell you that you should have looked at what you already had and stopped then.

  4. Dear Anonymous:

    I could not disagree with you more!!! I have no idea who you are or what the "chip" is on your shoulder. If your statement were correct, Heather, would likely have lost the baby...and maybe even her own life. Instead, she had a life threatening situation, that was looked after by the "someone" trying to tell her that she continues to be blessed for a reason...perhaps the reason is that she is a fantastic mother!!

    Heather, I wish you, Brent, Mary Louise, David, and Little Everett all the Love, compassion, and kindness in the world you deserve...including the miracle of life that was reinstated with you and Everett's "near death" experience.

    Take care, Sweetheart! You are more than WELL deserving of the many blessings that have been bestowed upon you, without subject to question.