Second SB Clinic Visit; Ortho

We made it to our second SB clinic appts, on time this time.  Brooke had another head US and her ventricles continue to stay steady so still no need for a shunt, yay!  Pray this never changes, but it can at any moment.  She saw Dr. Bowman for wound check and Dr. Bowman was ecstatic at how the healing has progressed.  Her exact words, ‘this little baby knows how to heal’.  Proud mama moment.  So glad it’s coming along.  I do believe the wound is getting smaller and smaller by the day.  

We also saw the Ortho for the fist time at clinic.  Brooke got several x-rays, which makes me nervous that such a tiny baby has had so many x-rays, but they have to be done, unfortunately.  What we found out; her hips are both out of socket, which they won’t do anything about.  As long as they are both in the same position, they tend to leave them that way.  They have found over the past 20-30 years, that it almost causes more damage then good when they do put them back in their sockets.  They tend to pop back out, it causes scar tissue and damage that leads to arthritis and pain later in life, so the approach for now is ‘leave them alone’.  Our Ped did say that before 6 months of age babies can ‘grow’, the extra portion of their socket if they are put back in place (layman’s terms), so I’m going to follow up and ask about it, but I don’t believe they’ll be correcting them.  Her knees are technically ‘dislocated’ because of the hyperextension from the very strong quads and weak glutes and hams, but we’re hoping PT and casting can help them.  She also has a slight kyphosis which is the curve in the upper spine, which I believe it due to her laying on her sides, which sucks.  That should not have to be protocol much longer, hopefully.  She will likely get casted from the upper thigh down for about 6 weeks or so starting in early to mid Jan.  Once Dr. Bowman gives the ok for her to be on her back most of the time, she’ll get casted.  We have more appts for our next clinic visit, every Tuesday.  We will likely have to go to see Dr Bowman at the clinic she does in Arlington Heights over the holidays since both major holidays land on Tuesdays.  She wants to keep an eye on her.  

Brooke is eating and gaining like a champ.  I don’t think she thrived much in the hospital.  She was born at 6 lbs and 10 ozs and left the hospital at only 6 lbs 15 ozs.  She’s now 8 and 1/2 lbs.  I’ve been holding her a lot and we kangaroo a bit as well.  She gets lots of TLC and she sleeps best on her mama, but I don’t want to ruin my good sleeper, so I try not to let that happen too much, although I love it!  

We had to see a genetics specialist too due to her PKU screen coming back labeled as abnormal for her galactose and enzymes.  It can be a myriad of things, but she has no symptoms of galactosemia (sp?), thank God.  She may be a carrier of it on a chromosome, that’s what I am guessing, but I’m not the expert so we are waiting to hear back from the Dr once her blood test results come back.  

She is starting to coo and even let out a little giggle in her sleep the other day.  She’s growing fast and healing well, which is great.  Early Intervention is coming to the house for an eval and will setup PT appointments from there, but they likely will not start until early January.  Until then, I try to work on the flexibility in her knees and stretching her feet.  Ms Sabina, daycare, is excited for her to come and she is so sweet, they are willing to do what ever it takes to help our baby girl and PT will come to daycare for her, which is great.  I love our daycare provider, she’s wonderful and so is her staff.  They all got to meet Brooke Friday at the holiday party at daycare.  Brooke had a great time, I think it wore her out.  

Big brother Braxton is starting to go to ‘school’ (preschool, downstairs at daycare - they have a little preschool right at daycare in Ms Sabina’s house which is great).  He’s so excited and loves it.  He’s a little smarty pants and really enjoys learning.  

Christmas is just around the corner and I have no Christmas cards out yet, still need to get that picture taken, and no presents wrapped.  We’re going to go light on Christmas this year considering everything going on, but Santa is bringing Braxton a LeapPad2 which I think he is going to flip over.  I also have not gotten any thank you’s out yet, so I apologize for the delayed response for all the wonderful, cute gifts that have been pouring in.  I’ll get there soon, at least that’s what I keep telling myself.  I will though, promise.  

Until next time, take care and please keep all the prayers coming, we are forever grateful for all of the positive thought and prayers for our family.

Thank you all,

Angela

Our First Week Home, the goal 'Heal that Back!'

 apologize for the delay...and again, apologizing up front for my grammar and any mis-wordings or spellings.  Started this a while ago.  

Its been busy at the Brownhouse.  We’ve been home a whole week and it seems just like yesterday she was born.  Our top priority is to keep her wound dressings clean, which is rather difficult with a little Miss Poops-alot on our hands.  She is still sleeping on her side and hanging out there most of the time.  We can’t put pressure on her back, at least not for long periods and minimal pressure at that.  I pray her little whole in her skin heals up quick!!!  Her skin pulled from the incision area and that is what we are dealing with now.  It is not uncommon, but it is a pain to try and keep dressed and clean at all times.  I just want it to heal up so she doesn’t have to be a naked baby all the time.  I don’t think she minds and we can put clothes on her, but every time I do, I’m just turning around to change it again and it makes for lots of unnecessary movement and more chance at having to change the dressing, which sucks, so for now, she’s pretty much a naked baby and she’s loving it.

Aunt Boober was here for the first week and it was SOOO nice having an extra set of hands, wish she could be in 2 places at once.  :o)  

I’m trying to get her physical therapy in daily, but I tell you, it is hard to fit everything in to  a day.  Seems crazy, but it’s non-stop around the clock, even with a great sleeper of a baby.  

She’s getting wipe downs and the poor girl probably won’t get a nice warm bath for quite some time.  I have no idea how long it will take to heal up her back, but I’m thinking we’re going to see my acupuncturist soon.  Hopefully she can speed it up.  

I feel bad, I have to admit I was not holding her much the first week home since I was so paranoid about putting pressure on her back, or having to change out the diaper situation and her dressing every time, I think I’m getting a routine down now though and I hold her to feed her, burp her and walk her around the house for a change of scenery.  I wasn’t nursing her much at all and I’m nursing her more now, but I totally forgot how LONG it takes for a newborn to nurse.  She’s still getting mostly bottles, which means I’m pumping around the clock still.  Gotta get her the good stuff!

Big Brother Braxton is doing so good.  I think he’s feeling the affects, but he is doing great for the most part.  I picked him up from daycare after she’d been home a couple of days and one of the first thing he said was, ‘can I go see my baby sister?’, I told him of course he could and I’ve never seen him dig his coat out and get it on so fast.  He is a great help, most of the time.  He has asked me to ‘put her back’, while pointing to her little bed, a few times.  I miss our snuggle time in the morning.  Although he has joined me in the living room a few times in the middle of the night now.  

We had our first visit with our pediatrician and found out that the state had ordered a repeat newborn screen and had listed her galactose score of 1.5 as abnormal, even though the normal reading should be less than 6.5.  We’re all a little dumb founded by it, even the Ped, my sister, other Peds and even the lady in the lab.  It doesn’t make any sense and she has no symptoms, so not too worried (since it is in the right range), but we’ll see what this next screen comes back as.  I’m hoping the state employee didn’t mark the wrong thing and that there was actually another test that came back abnormal, ‘for real’.  I guess we’ll find out next week.  We go back to the Ped next week for another follow up.