extremely long update on me and Anna

GenRN45

So, we had our appointment at CHOP this past wednesday as scheduled. We didn't get much sleep the night before, because of the excruciating pain I was in (DH almost dragged me to the hospital), so it was a particularly dreadful morning and drive. We got there, and had our ultrasounds.

We had 2 this time. The first one was on her spine, called a sacral ultrasound. Anna has a very deep sacral dimple, which by itself doesn't mean much, but for my peace of mind, i requested the u/s to rule out a condition called "tethered cord".  Fortunately, the preliminary result is completely normal.

Her hip u/s was the same as the last one 4 weeks ago. It was exactly the same. So, at least it isn't any worse. As expected, they tried to fit her into the Ilfeld Brace. It was too big still. Not in the legs, but the bar that would connect the leg cuffs is too long, and her legs won't go as wide as they would need to. So, we wound up with his second choice, the bucket brace.

This is the front view:

And this is the back view:

As you can see, it goes over her clothes this time, which means we have to take it off for every diaper change. We're allowed to bathe her, but I can't see doing it more than once a week - because I want her to spend as much time in the brace as possible. We only have 2 weeks to see improvement. If there isn't any improvement at our next visit, he wants to schedule surgery.

The first problem with this brace is that she no longer fits in her carseat, because she can't bend well at the waist, so she can't really sit. Which means we have to pay a small fortune to rent a carseat called a Hippo.  It's roughly $500 to purchase. It's made by Britax, and is specifically for kids like Anna. We're renting from a company that CHOP deals with. There's a $250 deposit and then it's $50/month. Guess who doesn't take insurance. Figures, right? We're still looking into if we can get it covered, but it's not likely. The company wouldn't deliver the seat to our house, and we can't pick it up on saturday because they're only open M-F, so my FIL had to go get it today. We can only afford one, so this sucker better be pretty easy to install/uninstall, because when my mom has her, it's going to have to be in her car. Grr.

Problem #2: We had an adjustment period of about 3 days when Anna came out of the pavlik harness where she didn't sleep at all, and ate like a beast.  We expected the same this time, as we were told to expect a 72 hour period of adjustment with any change in mobility. Man, is this the exact opposite. She's SO tired all the time - but her sleep isn't restful at all. She sleeps quietly for maybe 10 minutes, and then she's fussy and making noises and moving all around. It's really heartbreaking. And when she wakes up - she's still SO tired. She still has smiley moments, but the rest of the time, i really worry about her. She's NOT sleeping well. And her eating... she had been eating about 30-34 ounces a day. We're having trouble now getting more than 3oz into her at a feeding. I'm not going to force her to eat - but I REALLY don't want to see her start to lose weight, especially if surgery is a possibiltiy. She'll need every ounce she has.

Meanwhile, back at the ranch... 

Throughout the day at CHOP I was talking to my nurse at Dr Loh's office. Probably about 6 times. Our ortho was so worried about me (especially once I mentioned that it was a possible mastitis), he actually asked me to sit down, and when my nurse called back while he was in the room, he offered to leave and come back in 10 minutes so I could talk to her AND not miss anything he said. Remember, up until this point, I was only dealing with pain... well at CHOP, I developed redness and a fever. I was not doing well.

I was started on antibiotics that afternoon (keflex 4x/day). I also started taking probiotics, because I can't eat yogurt with Anna's dairy issues. So probiotics 4x/day as well along with ibuprofen around the clock for the swelling. 

In the area of the redness, i've also developed some firmness, which worries me, because even today, it's still there, and I can't get rid of it.

My fever (102 at the highest ) was broken by 4am that night (so grateful for the antibiotics), and although I still can't put any pressure on the breast (which sucks because I'm a right side sleeper), At least I can actually wear a sleep bra now (i couldn't tolerate material on it before) and i'm hoping in the coming days maybe even an actual one! I'm worried about my supply, which is half of what it usually is. My right side is my main producer, and if I lose that, i'll have trouble storing milk like i've been. The pain is SO mucb better. I can actually tolerate it now. Haven't taken percocet since wednesday night and it no longer reduces me to tears when it's at it's worst.

I'm glad I know what this feels like, because I had it for 2 days before I called the doctor. I'll NEVER do that again. 

But I will say this, taking care of a baby, with a few extra needs right now, is pretty darned difficult, when you can barely take care of yourself. Even today - when i'm trying so hard to stay on a 3 hr pumping schedule to keep the breast empty... she's so fussy, that if I have to hold her, she wins. And if I go 4 hours, the pain really starts to come back. 

Top this all off with DH going to a bachelor party tomorrow. I knew about it. But I didn't know he'd be leaving at 8am and coming home sunday morning. So, i won't even get help most of tomorrow... at least my sister is coming over after her 1pm hair appointment and offered to stay overnight if I need her. I might just take her up on that so I can get a LITTLE bit of rest.

And just if you've made it to the end of this monster update, a little picture of my punkin' to giggle at. She won't sleep flat on her back (I think it's a little hurty) and i'm a little nervous to put her on her belly in this thing, so we've figured out the only place she'll sleep is in the boppy. (We put folded blankets under her, to keep her supported.) So, i stuffed that thing into the cosleeper, put her back on the apnea monitor and when she DOES sleep for a few minutes, this is usually how:

thanks for the well wishes, ladies. I think it's clear that these next two weeks are REALLY important and I ask that you keep them coming.

Mouseygail

Holy moly woman!  Are you guys ever going to get a break!?!    keeping you and sweet little anna in my thoughts!  I hope that the next couple of weeks bring progress so that she can avoid surgery!!

howleyshell

Holy COW you guys are being put thru the ringer!!

Glad things are no worse but man it SUCKS that the new brace is such a PITA.

And you being sick on top of it?  Wow.  When it rains it pours, huh?

I'm glad your sis is coming to help.

Anna is beyond adorable and hats off to you for working thru solutions until you find what works for her.  You're one GREAT Mamma!

I don't know if I mentioned this to you before but one of my friends went thru wearing a similar brace with her first born - daughter (I don't know the medical details).  She had a really hard time with it and mourned the loss of having a typical newborn and dealt with a lot of fears about long term effects.

Turns out that her daughter is a MAJOR go getter.  She credit's it to being put thru the ringer as a baby and having to be so adaptable.  Oh - and despite her Mom's fears about her growth and development she started competitive gymnastics at age 5.

I know this is a tough time but I really do look forward to the day where the brace and doctors appointments are a thing of old photos and memories and Anna amazes you with how she grows and develops. 

Hang in there lady.  You're doing an amazing job!!! 

perry7285

i'm so sorry that you're having such a difficult time. you are a hero for sticking this out and taking care of your baby girl--i'm impressed that you're sticking with BFing with all of this pain, and your milk is great for your baby girl!

i hope that the next two weeks bring lots of improvement. (((hugs)))

epphd

Oh my gosh, I can't even imagine.  When I had mastitis, it was literally all I could do to get off of the couch out from under the covers.  You are amazing.  HOPING you get a break soon and that Anna does amazing in her bucket brace!!  Poor pumpkin

chocolatechip06

Sending you lots of positive thoughts and prayers.

preheatedoven

Poor little Anna, and poor mama! You deserve a medal for all you've been through and all that you are going through. ((HUGS)) to you.

~HopeAndFaith~

Glad to hear that the ultrasound ruled out the possibility of a Tethered Cord Syndrome.  Even happier to hear that the hip ultrasound did not show that things were getting worse.  You must find some peace in knowing that little fact. 

It breaks my heart to see her in that little brace, I pray that it be the exact treatmet that she needs. I hope that muct improvement be seen and that it be rather quickly.  Everything is so expensive no a days, but it good to know that there are options.  Thankfully, you found a car seat in which Anna will fit comfortably. 

I do hope that surgery is not an option.  I'm hoping for a quick recovery and a huge appetitie fo your little girl. 

I hope you recover quickly so that you can continue to care for your daughter and give her all the attention she needs. 

fallbride110406

I'm so sorry you and Anna are going through this.  I try to keep up with this board but sometimes I just can't.  I will keep you and little Anna in my thoughts.

Cajunladybug22

You and your amazing little girl are so strong, and should be so proud! 

I'm sorry you're both going through it all, but you're in my prayers!

CardsfanSM

You poor thing. I haven't seen any other posts about your breast issues, but have you been evaluated for an abscess? When S was about 4 weeks old, I developed a clogged duct, that turned into mastitis, that turned into an abscess. It was horrible. The antiobiotics helped with the infection, but they had to do an out-patient surgery to put a tube in my boob for a few WEEKS to drain all the gunk.

Re: the brace, I know it has to be tough. It was all I could do to not break down putting S in her Pavlic, I can't imagine the emotions you are facing with this. Or, her reactions to all this new strangeness.

hang in there!

emmyloustu

Wow! You continue to have so much to deal with.

First, I am thrilled to hear that Anna's u/s was negative for tethered cord! One less thing to worry about/deal with. Second, so glad there was no worsening of the hip! Woohoo!!

Hooray for the new brace - boo for the adjustment period. I hope she is back to herself ASAP! I hope it does its thing and you get great news in 2 weeks!

Please take care of yourself and have your sister stay. Ummm, you are a saint for not pitching a fit about your dh being MIA all weekend partying. I would so be playing the sick mama, needy baby, tears, tears, tears card!

sommerrayne

Praying massively for improvement, sleep for you, sleep for her, SMILES all around and PEACE in your household (and, you keeping the ability to not want to kill your husband - you're more patient than I - I'd NEVER let mine go out for over 24 hours to party when our household is experiencing these conditions!).

HUGS GAL!

PeachyKate

((huge hugs Gen))  

I am so sorry there was no improvement but it is great that it is no worse!  What a relief it must be to at least have the tethered cord worry out of your head.   I hope Anna has a ton of improvement in the next few weeks so that she won't need surgery.

I will be keeping you two in my thoughts and hoping that she gets back to her old self in no time.  Take your sister up on her offer and get some sleep this weekend!  You also need to make sure that hubby of yours knows just how lucky he is that you are letting him go with you being sick and Anna not being herself!

I have no idea exactly where you are but being that you went to CHOP let me know if you need anything.  I will be up in South Jersey on Saturday running errands sans Jax and DH so even if it is just to drop off some food let me know!

tapgirl

Wow!  My head is spinning a little just reading this!  I can't imagine having to live it.  I hope you feel better soon and little Anna adjust quickly and starts sleeping and eating.  Fingers crossed that you see some improvement in 2 weeks.

Kiki11

Sorry things are still so rough!  I hope the next two weeks bring a lot of improvement for little miss Anna.  I had mastitis back in November... it was AWFUL.  I'm sorry you're going through that.  My supply tanked for 10-14 days, but then it picked back up again.  Hang in there. 

ladychicago

Oh for heaven's sake...   You guys are going through SO MUCH.    I am glad to hear that her hips aren't any worse and that the u/s ruled out the tethered cord... but man.   (((HUGE HUGS)))    You are a stronger woman than I am, sweetie. 

I will be keeping your little Anna in my thoughts and prayers over these next two weeks.   I am hoping with everything in me it won't come to surgery.    Give her a great  big kiss from all of us!    She is so sweet and beautiful!

Dragonfly1226

I am so sorry that there wasn't any improvement in the last 4 weeks. I am glad that it didn't get worse though, and I am sending tons of T&Ps that you see some improvement in the next two weeks.

I'm also praying that you feel better soon! 

ashonkwiler09

Oh Gen, It breaks my heart that poor Anna is going through this. Seeing her in that harness brings tears to my eyes. Keeping you all in my thoughts and prayers. You are such a strong momma! I truly admire your strength.

smilee

Oh, Gen.....

I will continue to pray or you guys.  I am so, so sorry this is so difficult.

 

igh0318

I'm sorry things are so difficult.  I really hope the new brace does wonders for Anna & I hope you're feeling better very soon.   ((Hugs)) 

dana316

Good gravy, Mama.  You guys deserve a break...

I will continue to send healing thoughts and prayers for your sweet baby Anna.  I hope her next check is a good one, and no surgery is necessary.

(((Hugs)))

 

ALY1981

that's terrible Gen I'm so sorry

here4u

Wow, that is one rough day!  I'm glad the antibiotics are helping, please take time for yourself too!  I know us mom's always put ourselves last.  I hope this new harness does the trick, I'm so sorry she's uncomfortable   That carseat should be covered, thats crazy!

vandelay

Oh my gosh!  What a lot to deal with!  You poor things -- both of you guys.  I hope your mastitis clears up soon, and that sweet Anna's new brace does the trick.

njdcgirl

Wow...the hits just keep on coming.  I'm very glad that Anna is no worse, but I'm sorry you are sick and having to deal with a big change in her routine.  I hope she gets used to the new brace and gets a bit more rest in the days to come.  And, of course I really hope that there is no surgery in her future.

Definitely take your sister up on her offer to stay over.  You could use a break!!

Lots of positive vibes coming your way!

Babsie7

Oh Gen, I'm so sorry things have been so rough. Sending thoughts and prayers that Anna's new brace helps and you see improvements. I hope you're feeling better soon too!
Love the photo! That little girl of yours sure is cute!