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.

Brooke made it home, yay!

I'm apologizing upfront for not spell checking or gramatically correcting the below posts.

Day 18 Friday - Brooke had another head US today and ventricles are still holding steady and no need for a shunt at this point, yay!  Praying it stays this way.  She’ll have another one on Monday, just to keep an eye on them before she (hopefully) heads home on Tuesday (yay!).  She was going to have her ‘car seat test’ done today, but Dr Bowman preferred they wait until Monday to do it, so we’ll bring the car seat in and have it ready for her test on Monday.  Physical Therapy stopped in again and we worked on her knees and feet, so far we can’t do anything else since her hips have not been evaluated yet.  She likely will not see the ortho until her first SB clinic visit which will be the Tuesday after we get home, sounds like we’ll be visiting the clinic every Tuesday for the next couple of months.  Going to have to work that out with work when I get back to work.  I don’t think we have much of a choice since she’s so young and needs some things done early on, the earlier the better I keep hearing from PT and others.  I only got to stay with her for a few hours today, but hopefully I can stay a little longer tomorrow.  Nothing else eventful today, which is always good!  

Day 19 Saturday - Braxton got to go to the circus today with Lori, Anna and the Jaspers, he had such a great time and so did mommy because she got to spend most of the day with  her little pumpkin, Brooke (Braxton likes to remind me that she is NOT a pumpkin, but is his baby sister - LOL).  Found out today that I need to do a 24 hour ‘care stay’, meaning I’m here for 24 hrs with her and handle all of her care, wound dressings, etc.  Glad someone told me this.  I’ll be heading back to the hospital tomorrow afternoon and staying through Monday afternoon for my ‘care stay’.  Nothing much goes on over the weekends except the Dr’s doing their rounds and routine care/healing on Brooke’s part.  

Day 20  Sunday - Braxton and I headed to Trader Joe’s quick to pick up a few things and some holiday treats for the nurses and staff on Brooke’s floor, no time to bake or make treats, so going the easy route.  Braxton LOVES going to Trader Joe’s because they have ‘his carts’ there.  They have small carts for the kids to push and he loves it!  He’s a great helper, lets just hope he is with this sister too.  

I got to the hospital a little before 2pm to start my 24 hr care stay and will obviously be staying through tomorrow to 2pm at least.  This was a little more demanding than I thought.  Her wound dressings are constantly getting slightly dirty and need changing often, which is a bit of a chore, but has to be done.  Gets a little hard to eat, pee, pump, feed, change dressing, clean up stuff, try to sleep for 30 minutes and start all over again.  Needless to say, I did not get much sleep during the care stay.  It all went well though and so far she’s still on track for going home on Tuesday.

Aunt Boober is flying in tomorrow night, yippee!  So I will definitely be leaving around 2pm to head home quick then off to the airport to pick her up.  It will be nice having her here to help with Brooke.

Day 21 Monday - one more day to go.  She got her car seat test after I left today and passed with flying colors.  She slept through the whole thing and her vitals didn’t budge and she didn’t seem bothered at all during any of it.  She also had another head US and haven’t heard any update, but the nurse did mention that if there were changes we would have heard, so no news in this case is good news.  She has to have her hearing test before going home as well.  Not sure what other ‘new born’ tests, items she needs to have done.  Need to follow up on that.  PT comes by every day and I work with her as well.  She is getting some bend in her knees, in the right direction that is.  They are still hyper extended when resting for the most part, but they are loosening up, slowly but surely.  Her little feet have made progress as well.  I’m trying to figure out how to navigate all of the services she may qualify for.  I’m not sure she qualifies for anything, but the PT did say she’ll get the early intervention program and she made the call and I should hear from them in 2 weeks, but that’s state govt so relying on a state of IL employee to contact me and actually get something done is like sitting on frozen solid lake in northern MN in the middle of winter and waiting for it to melt come spring.  She did give me a # to follow up with in 2 weeks if I don’t hear from them, which likely I will have to do.  I’d like to try and contact the Easter Seals daycare as well that is in Villa Park, but if it is outside of Cook County it sounds like it won’t be an option since we live in Cook County.  I really need 3 days to sit down apply and make calls to see what I can get taken care of for her.  I want to make sure she has everything she needs for her development.  Really need to get on that.

Called to check on her in the night and she’s eating and sleeping like a champ - yay!  AND - she is going home tomorrow barring any unforeseen changes.  Picked up Aunt Boober too, she can’t wait to meet our little Brooke!

Day 22  Tuesday - Todays the big day!!!  3 weeks old today too, so hard to believe that it’s been 3 weeks already.  It will be so nice to have her home and not have to head back and forth and split my time between my bebes.  ;o)  She got her hearing test today and everything went well.  I need to try to find out if she got her Hep B vaccine or her PKU test done, no one knows if they were done at Prentice, so hopefully the records got sent to our Ped.  Need to make an appt with him and also with the SB clinic.  The nurse tried calling but couldn’t get one made, so I’ll be calling tomorrow.  We got a whole list of instructions and care for her and symptoms to watch for, also lots of supplies for her wound care.  She has a lot of stuff to take home for such a little pumpkin.  

SO HAPPY TO BE HOME!!!  We made it, yay!!!  She slept all the way home in the car and is eating and sleeping like a champ.  She also has great alert time.  She recognizes her brother’s voice and the dog barking, neither seem to faze her too much.  

I’ll try to update more later - tired and probably will be for the next year now.  ;o)  

Brooke keeps getting A+'s on her tests, woohoo!

Day 16 - Wednesday 11/21
I get to stay with my baby girl in the hospital tonight - yay, but know I’ll miss the little man tonight as well.  We’re taking an early nap together.  Brooke had another renal US today and all looks good.  She appears to be emptying her bladder on her own, so far no worries.  She also had her swallow test and passed with flying colors.  I was a little worried about this one, but she had no issues and the speech therapist was very happy with the results.  Babies/children with Chiari malformations can have issues with the flap that keeps the food and air in the right pipes, so this is definitely something we have to watch for in the future.  If she starts having swallow issues this could be her Chiari becoming symptomatic or hydrocephalus setting in.  Praying all stays as is.  She’s a very strong 2+week old and is passing everything with flying colors.  She has a car seat test scheduled for next Monday and she will likely see the ortho before heading home, but that is not for sure.  We will likely be visiting the SB clinic at Children’s in Lincoln Park on weekly or bi-weekly basis for the first couple of months which is going to be tough, but we’ll get through it.  

Day 17 - Thursday 11/22 - Happy Thanksgiving!
Steve and Braxton came up to visit baby Brooke this morning and to pick me up.  I actually got some sleep last night.  We got our early nap in and then we slept on and off throughout the night.  It was a quiet, uneventful day with Brooke which is always good.  I feel bad leaving her and I won’t get back to see her until tomorrow morning.  Made sure she had plenty of milk and she should have enough to get through tomorrow morning.  I think I’m going to head down early because we don’t have daycare, Steve’s going to work at the ski shop and Aunt Debbie can watch be until 1pm, so I’ll have to head home around 12pm.  I’d like to try and get back up to stay the night Friday night too, but Steve will be working at the ski shop on Saturday as well so we need to have some coverage for Braxton on Saturday too.  SOOOOO glad this will be (should be - keeping my fingers crossed and praying all goes well) the last weekend we’ll have to find help with Braxton since Brooke should be coming home on Tuesday.  Can’t wait.  Let the sleep deprivation and adjustment begin!  LOL  
Not much else to report for today.  Hope everyone had a great Thanksgiving and enjoyed some nice, warm, moist turkey!

Angela

Time is flying...

Day 8 - Tuesday 11/13 - I can’t believe its already been 1 week.  Time is flying, but not fast enough to get her home yet.  She has graduated to laying on her side today, which is good.  All is going well and there is no leaking fluid from her back and she is doing great.  The speech therapist stopped in and was a HUGE help with getting her to nurse and paving the path for us.  She was getting just a standard nipple on a bottle, but the speech therapist switched up the bottles to the playtex drop ins and using a slow flow nipple which Brooke didn’t want any part of at first, but she latched on and sucked the bottle down and she’s now used to it.  She actually nursed for the first time really well today - yay!  We need to work on it though.  The speech therapist would also like to get her swallow study done soon.  This will ensure Brooke is swallowing correctly and everything is going down the right pipe.  Dr. Bowman will give her the all clear for the test in about a week if all continues to go well.  She has to sit up at an angle for it and on her back so definitely have to wait for that one.

Day 9 - Wed - so I stayed the night last night.  A little sleep deprived, but not too bad.  Brooke is such a good eater and sleeper, but when your in the hospital in a bed with minimal stimulation there’s not a whole lot else to do for an infant (they don’t do a whole lot of any thing else at this age anyway, but feel bad she’s in the situation she’s in - makes me cry).  She’s still doing great, but we had a big scare this morning.  The nurse took her temp and it read 101.1, she took it a second time and it read 99.9 (within 5 seconds of the first one) so protocol is contact neuro and when she sent the text she put in an incorrect celcius amount so it looked like it was 103 on top of everything.  Within 5 minutes she had a team of doctors assessing her, Dr. Bowman included.  Everyone was in a tizzy and thank goodness one of Dr’s is a new mom and said ‘she doesn’t feel warm’ and so they took her temp again and all was perfect.  She was about to get sent back to the NICU and they did order up a couple of tests, a urine culture, another US of her head and all came back clear.  Ventricles are holding steady and she seems to be emptying her bladder on her own, which is great!  Stupid thermometer.  (on a side note, this happened again a few days later and the nurse waited 5 minutes, took the temp again and it was perfect - why couldn’t we have done that the first time???).

Day 10 - Thurs - I’m going to stay the night again.  Going to try to stay Tues, Thurs and Sun nights.  It’s hard on Braxton, but I feel so terrible leaving my baby girl in a hospital room by herself.  The nurses are good, don’t get me wrong, but she’s in her room on her own the majority of the time.  It breaks my heart she’s there by herself.  I cry all the way home from the hospital, but Braxton makes me smile again.  I miss him and I think he misses mommy too.  It’s getting hard to split my time.

Day 11 - Fri.  Nothing eventful, which is always good when you’re in the hospital.  I’m heading home tonight to stay with Braxton.  

Day 12 - Sat - Aunt Debbie and her friend took Braxton to the Arboretum for a hike while Steve was at the ski shop, then he went over to Lori’s to play with Anna, decorate Lori’s tree, see her kitty and do some crafts.  Needless to say, he was wore out.  He was asleep on Lori’s sofa by 6:30pm.  He definitely had a fun filled day.  Thanks Lori and Aunt Debbie for helping out with Braxton.  Brooke is doing great, not a lot going on over the weekend.

Day 13 - Sunday - I was going to stay the night, but I think I’ll be heading home for the night.  Braxton met his sister today for the first time.  I’ll have to upload a couple of pictures.  He pet her like does Sam, it was cute.  He was excited and brought her a toy and Brooke had got him a gift too, a couple of Thomas books and a l/s Thomas t-shirt which Braxton was ready to put on the minute he saw it.  He liked the view from her room too.  He kept talking about the tiny cars and the lake.  We even saw a couple boats, but I think the fire truck he could play in and drive (not literally) on the 12th floor took the cake.  If a child has to be in the hospital (no one wants them in the hospital of course), this is the place to be.  They have so much for the kids to do, movies in the theatre, crafts, games, you name it, they have probably thought of it and offer it.  It really is an amazing hospital.  They even have stuff for the parents to do as well.  

Day 14 Monday - another head US and so far so good, Ventricles are holding - yay!!!  I can now lift her a little to burp her, so we’re making the baby steps we’re supposed to be.  It’s hard to nurse her though, it seems like there is always something going on, a new IV going in, a dr coming around, a blood draw, something and I feel so bad for her and it makes it difficult to nurse her in a nice quiet room.  Poor girl gets SOOOOO upset when she’s bothered from a deep sleep too.  I feel so bad, she’ll get in a deep sleep and bam, here comes someone to hook her up to her antibiotics, or do some PT, or draw blood, etc.  She’s such a good baby and sleeps through a lot of things.  

I have not met the Ortho Dr yet, but she has been by.  Serial casting was mentioned for Brooke.  It’s really good and beneficial when it is done early, but man, what a pain it will be.  It sounds like we’ll be at the SB clinic on Clark every Tuesday for a while until we get through the first few months.  It’s going to be hard going back to work and keeping all these appts and staying on top of everything, but I don’t have much of a choice.  =(

PT is working on getting some bend in her knees and working on her little feet.  It’s baby steps.  She has very strong quads and hip flexors, but not much in the way of glutes and hams, they’re just not that strong and she may not have much use of them.  Hard to tell yet, but hopefully she’ll be able to walk with the use of braces and maybe some forearm crutches if necessary.  I’m hoping so.  The PT said she has seen others with similar situation walk assisted, and is not uncommon.  She’s a very strong baby and I’m sure if she puts her mind to something, she’ll do it.  

Day 15 Tuesday 11/21 - 2 weeks old today, can barely believe it has been 2 weeks already.  Steve is working on getting the rooms situated.  Finally got Braxton’s big boy bed up and ordered a mattress for him.  He’s excited to move into the front bedroom in his big bed.  Steve has decided now is a good time to paint the front bedroom, not so sure myself, but hey, it will look nice when it is done - I hope.  ;o)  

Brooke is doing great.  Dr Bowman has stopped by and approved her for her swallow study and she may get a ‘carseat test‘ Friday.  She has to sit in a carseat for 90 minutes, this will help show if she is in discomfort or anything of the sort.  They want to make sure baby can get home (they verify your length of drive home) comfortably.  We’ll have to do some dressing changes at home and they will teach us all of that before we head out the door.  So far she is on track to go home next Tues or Wed.  1 more week of this craziness.  I haven’t been staying the night with her which breaks my heart and makes me cry all the way home from the hospital every night, but there’s stuff to do and a little man who needs his mommy.  Thank goodness for daycare during the week.  It makes it easy for me to spend the days with her and evenings with him.  It is hard, I’m not going to lie and it’s taking a toll, but hopefully only 1 more week to go.  

Hopefully Aunt Boober will be coming to visit next week when Brooke is home.  It will be nice have a Ped nurse in the house and gives me a level of comfort that she’ll know what to do and how to handle anything that may come up within the first few days/week.  Grandma and Grandpa Morehouse are coming later in Dec too.  Somehow I think Grandma told Grandpa he was getting on a plane and there was no room for discussion.  LOL  Whatever it was worked and Braxton is SOOOOO excited that they are coming to visit.  

Ok, almost caught up for now.  I’ll try to be better about updating more than a weeks worth at a time.  

Until next time, have a great Thanksgiving.  There is always something to be thankful for, we have several now and can’t wait for our baby girl to come home.

Happy Thanksgiving!

Angela  

10 Little Fingers and 10 Little Toes

Needless to say, I did not make it to my next appointment.

Sorry for being a week behind, never thought I'd be this busy without being at home with the baby.  Just as busy in the hospital.  I'll apologize up front for any crazy typos or nonsense.  Sleep deprivation is setting in.

Day 1 - Tuesday:  Brooke was born on 11/6/12 at 9:49am, weighing in at 6 lbs 10 oz.  We checked into Labor and Delivery at 8:40am that same morning.  She was in a hurry.  I was worried we were going to be on the news for delivering a baby on the side of the expressway in rush hour traffic.  She came very fast.  She was given great APGAR scores, all on the very high end.  The sack covering her spinal opening did burst, but was not a concern.  She was cleaned up and whisked away up to the NICU in Prentice to be evaluated.  She was doing so good, they moved her to the NICU at Children’s/Lurie within a couple of hours.  We walked over to see her later that day (very nice having the hospitals connected - love it).  I split my time between my room and her NICU room.

Day 2 - Wednesday:  Brooke had her surgery today, Wed 11/7.  All went well with the surgery.  Her job now is to heal.  The Dr’s will be keeping a close eye on her ventricles to track any changes.  

There was a little break down in communication and we were waiting to hear when she was on her way back to the NICU, but when we called for an update she had already been there for 40 minutes.  They could not get a cath in her so they were getting a little worried, but she seemed to be doing a good job of emptying her bladder on her own (which is great!).

Over the course of day 1 and day 2 we were asked permission to follow Brooke with Dr. Bowman and get our perspective as parents about the closeness of Prentice and Children’s.  So I gave consent and Brooke and Steve and I are part of a public service video for Children’s.  We’re supposed to get a DVD of pictures and the video itself, hopefully before she gets discharged.  She’s already a movie star at 2 days old.

Day 3 - Thursday:  I got discharged today.  I was going to stay the night in a sleeping room, but really miss Braxton too and I know Brooke is in really good hands (usually at least 2 sets of them) in the NICU.  It stinks, but I can’t be in 2 places at once, wish I could.  

Brooke was finally able to get some breast milk and she ate like a champ.  She’s still recovering from her surgery.  She’ll be on antibiotics for 14 days and we found out that she will most likely be staying in the hospital for about 3 weeks.  Dr. Bowman likes to keep the babies close by to ensure they are stable, have been totally evaluated.  Far better than sending a baby home early, giving the new parents a million instructions and a ton of things to watch for.  It stinks, but I’m thankful she’s in such great hands.  Dr. Bowman is one of the top neurosurgeons and the Director of the SB clinic at Children’s.  She’s also very nice and on top of everything.

I think Braxton was missing mommy a bit.  I stuck to me like velcro.  He’s so excited to meet his sister.  I think we’re going to wait until next weekend when she has a room of her own.  I’m going to have to video it.  When Aunt Debbie told him his little sister was here, I guess he got so excited he could hardly get his coat on.  I wish I could have seen his face.

Day 4 - Friday:  Our little mover and shaker has graduated out of the little NICU warmer bed.  She nearly toppled over off her her little stack of foam pads she was sleeping on.  She has to stay on her belly and back must be flat.  She’s been this way since surgery and will be this way for a few days more.  Her little quads and psoas appear to be tight.  She’s at about a 90 degree angle.  PT has not assessed her yet.  Her only job right now and main focus is on her healing back and tracking her ventricles.  She finally gets to eat is getting less fluids.

Day 5 - Saturday:  Best day yet!  FINALLY got to hold her.  Someone was worried I’d be bored in the NICU with nothing to do all day.  I don’t have a lot of time for much, between eating, peeing, pumping, kangarooing and oogling over our little cutie I don’t have time for much else.  The time is flying.  They are a little worried about her ventricles, they have enlarged a little.  She is scheduled for another head US Monday morning to check them again.  They’re keeping a close eye on them and she may need a shunt (praying that she doesn’t).  They will prep her Sunday night for surgery just in case and if anything were to come up over the weekend, Dr. Alden is doing rounds (another neuro on Dr. Bowman’s team) and he will put one in if it is necessary.

Her little knees are hyperextended.  One of the PTs stopped by briefly who did a brief initial assessment.  She’ll be working with her once she’s given the go ahead from neuro.  I’ve been massaging her little feet (and yes, she has 2 cute little feet and both have their respective toes - stupid US tech who thought she didn’t have toes and a stub for a foot...).  They think one or both of her hips may be out of socket as well, but won’t know for sure until they can get an x-ray.  They also tried to get a US of her kidneys and bladder, kidneys are great, but it was hard to get good shots of her bladder as she is still on her belly and Dr. Bowman does not want her moved.  One other thing that is uber important is no leaking of fluid from her back.  Hoping we don’t have to go down that path.

On a side note, big storm came through and I didn’t even know it until I tried to get home and got stuck in horrid traffic.  Who would have thought on a Sat afternoon it would take me nearly an hour and a half to get home, it was insane.  Worse than rush hour traffic.  Aunt Debbie was helping out and I was late to relieve her.  B had fun hiking with her, her friend and doggie Sam.  Thanks Aunt Debbie.

Day - Sunday:  6  Can’t believe it’s already Sunday. It’s been a quiet uneventful day, which is good.  I originally asked that if she needed any formula that it be non-dairy.  The resident and I believe overall, Drs prefer the dairy based since the calcium, etc is better digested and utilized.  I gave consent to use dairy if they ran out of bm, and they did late Sunday, but Brooke didn’t take much of it.  She knows the good stuff.  She only took about an ounce then I was able to get there and give her some fresh b-milk, definitely her preference.  I wish I would have stuck to my guns and said if it were going to be for just one feed then stick to the non-dairy.  Hopefully she won’t develop any sensitivities, like her mom and big brother.  

Day 7 - Monday:  GREAT NEWS, Brooke had her head US and so far her ventricles are holding steady.  Hope and pray they stay that way.  They can change at any time, but praying she will not need any intervention or a shunt to relieve pressure from fluid.  She also has graduated to the 19th floor, so even more good news.  I’m going to try to stay the night tomorrow night with her.  Can’t wait.  Until then, I’m going to stay at home again.  Still wish I could be in 2 places at once.  

Finally met Dr. Yerkes also, the Urologist.  She’s very nice and was happy to hear that Brooke appears to be peeing on her own and it appears she’s emptying her bladder as near as they can tell.  

Will update more later.

October 30th US and appt

I’m almost a week late with this update, but it’s been a little crazy-busy lately. 

Finally had our latest US and Dr. appt last Tuesday.  The US may have lasted a whole 10 minutes and she measured brain ventricles and maybe the leg bones, checked the kidneys and bladder and that was it.  The information wasn’t even uploaded an hour later when I was finally seeing the Dr.  I had to ask for it.  After I asked, the Dr gave me the update of ‘her ventricles are mildly enlarged, nothing to worry about, she’s growing in the 46^th percentile, she’s about 6lbs 1 oz and no other concerns’.  I think her ventricles have gotten slightly larger since the previous US, but there was no side-by-side comparison.  I honestly don’t think he even knew our baby girl was diagnosed with Spina Bifida.  It did appear that the sacks at the base of her spine are still intact and I do have some extra amniotic fluid for her (which is a good thing), to which he commented ‘if you’re in the grocery store and your water breaks, you’re likely to make a mess’.  Gee thanks!  Whole Foods, you’ve been forewarned.    

My opinions of the MFM group at NMFF are going south, very fast.  I’m beginning to think that it’s not such a great thing to see a different Dr in the group every week; so what, you get to meet them, who delivers is still a total crap shoot.  I’m not sure any of them really have a clue what a diagnosis of Myelomeningocele or Spina Bifida really entails.  This past appt was with a Dr I had never met.  He asked me more questions about my heart condition than my pregnancy.  I honestly think he thought I was seeing the MFM group because of my heart condition, not our baby’s diagnosis of SB.  He wanted to know why I didn’t see a REGULAR cardiologist on a REGULAR basis…  um, because I see an EP specialist who knows my heart condition and my heart condition is of no concern to this pregnancy.  I was just happy to get out of there.  He did mention that I’m dilated 1 ½ and that I will go in to labor on my own in the next week or two.  I don’t think anything from the appt warranted that comment, but I have a feeling it will happen regardless.  Hoping she’s here soon, the wait is killing me and I’m ready to ditch these baggy, ill-fitting maternity pants.  I have another appt tomorrow so we’ll see what Dr I get to meet and what words will come out of their mouth’s that I can write down to send back to them after I deliver.  I plan on writing a letter with some of the not so professional comments that have come out of some of the Dr’s mouths and especially the US tech’s mouths.  

I’ll try to get an update in after my appt tomorrow.  I’m having a few twinges in my low back and that is how my back labor with Braxton started.  If I don’t make it to my appt tomorrow because of Brooke’s arrival, I’ll let you know that too, far more exciting than a Dr’s visit.

Big brother Braxton is growing up so fast and I know he doesn’t really know what he’s in for just yet, but he does know his baby sister will be coming soon.  He tells me he’s going to help me out and be nice to his baby sister.  If that comes to fruition, I’ll be ecstatic, but I won’t hold my breath.  LOL

Thank you again for all of the prayers and positive thoughts.  Hoping she’s here in the next week or two!

Angela

A little over 3 weeks until she’s due…

Finally, our next US & appt is tomorrow.  I questioned 2 of the MFM Dr’s about why now, that I hit the third trimester, are we waiting 6 weeks between USs when they were scheduled every  4.  I’m sure MFM (high risk OBs) are trained to stay calm and not be alarmists, but I think both were more passive than anything.  Their responses were very similar; she seems to be growing fine and you made the decision to go through with the pregnancy, so…  SO???  Why not keep an eye on changes and growth in the trimester where most changes can occur?  Why now throw out the 4 week schedule?  Don’t get me wrong, I’m not one to enjoy extra appts or extra medical care when it is not necessary.  I just don’t get the change at a critical point, but that’s enough of my W-T-Heck attitude.  I just decided to go with it.  When I read other mothers-to-be of SB babies and they have weekly appts and weekly stress tests and bi-weekly USs, I’m not sure which set of Drs I’d prefer, the alarmists or my passive ones, I think I prefer the latter. 

Hopefully tomorrow will be uneventful at the appt and the US.  I’m praying to hear that her ventricles are holding steady and she’s growing on track and no other changes.  The last US was the first time I saw the sacks of fluid at the base of her spine, yes she has 2.  The first one is small and appears to be at L2, which is why her diagnosis went from L4 to L2, which is in the wrong direction for good news.  I really don’t remember noticing them before, or the US tech measuring them, but they were there in the last US pics.  I hope they are intact, it helps protect the spinal cord and fluid, again a total crap shoot, but better than open.  Everything is such a crap shoot, it’s hard to know what to think or even pray for, other than the usual; prepare for the worst, pray for the best.  So with this short post I ask for your continued prayers for our little girl’s outcome.  Before we know it, she’ll be here and boy do we have a lot to do around the house and I have a ton at work as well.  

I swear I will get to the Folic Acid posts and other informational posts, probably when I’m in the hospital and have a lot on my mind, but not to do.  Until then, if you know anyone trying to conceive, tell them to take 10x’s the amount of the daily recommended amount of Folic Acid  In most cases, that is all it takes to prevent Spina Bifida in the first place.  Yes, it’s that easy!!! Unfortunately no one tells you this until it’s too late.  Folic Acid (or Folate – being from food, and Folic Acid the synthetic one) is a B vitamin, B9 to be exact.  It’s water-soluble, like vit C, and there have been studies done on the intake of 20x’s the amount with no side effects.  Just like vit c, you can load up and you just pee out the excess.  Seriously, please spread the word!!!

Thank you for all of the prayers and kind thoughts.  They are much appreciated and very much needed.

Angela

The Latest...

We had another Fetal Echo and US today.  Not having another US for about 6 weeks, but the Dr's appt's are now every 2 weeks.  The echo came back normal, heart appears to be fine.  She'll have another echo shortly after birth just to be sure there are no issues, this is because of my heart condition, not the Spina Bifida.  Braxton had one right after birth as well.  The US went just as well.  No changes.  Ventricles still are holding steady, one is slightly outside the normal range, but the rest are holding within range - same as before.  She's growing in the 40th percentile, very similar to Braxton.  We continue to hope and pray for the best.  Nothing too exciting to report other than the good news of no major changes and we're tredging ahead.  Only 2 months left!  Can you believe it???  I can't!  We have to get in gear and get some stuff situated, big boy bed put together, dig some stuff out of the basement, lots of cleaning and the list goes on and on and on and on...

Sorry, long day and very tired so not much to this post.  Will try to post a few more informational ones in the near future.

Future post - Folic Acid, the other F-word!

Angela

Ultrasound update

We had another US this morning and things seem to be going steady.  One of her ventricles in the brain is still slightly enlarged, but not increasing, comparatively.  She is growing at a steady pace.  She'll soon be packing on some pounds and be busy growing this last trimester.  Her foot that has the issue is becoming slightly more visible.  It definitely has issues structurally and it is hard to tell if there are even toes on it at this point.  :o(  There does not appear to be, but it is still hard to tell since she is so small and they have yet to get really good, clear US pictures of it.  But it definitely has development issues and appears to be slightly deformed, we probably won't know the extent of it until she's born, like many things on this journey.  She did appear to be moving her legs a bit which is great for now, but the majority of damage to the spinal cord usually comes in the third trimester.  We can only hope and pray that any further damage is minimized and she is born with some mobility in her hips and legs. 
We're scheduled for another fetal echo and US in 3 weeks, more out of convenience to make it all one appt instead of multiple ones.  I'm not sure what our schedule and visits will be after that.  We'll be pushing the '2 months left' mark so we'll see where we go from there. Time is flying and I think we need to get started on plans for rearranging some space to make room for our baby girl. 
Big brother Braxton got his crib transformed into a toddler bed on Sunday and he slept like a champ Sunday night, thanks to Grandpa Brown's birthday party/dinner.  This morning about 5:30am I heard him let out a little cry for me and I went in to get him and he wasn't in his bed, but about 2 feet from it on the floor.  I scooped him up and brought him into our bed where he proceeded to fall back asleep for an hour, which was great.  I'm not sure how long he spent sleeping on the floor though.  When I asked him how he ended up on the floor he couldn't remember. I'm keeping a pillow next to the open part of his bed, but it didn't appear to help much last night.  He is excited about the freedom he has to get in and out of his bed on his own though.  He's definitely becoming a big boy and he lets me know he is not my baby anymore. 
Until next time, please continue praying for our little girl and family.  We appreciate all the prayers and thoughts everyone has offered. 

Thanks again,
Angela

Where do we begin?

I thought I'd start this blog to keep everyone up to date on our baby girl's status through the pregnancy. We're 26 weeks pregnant now and our baby girl was diagnosed with Spina Bifida (SB).  It was discovered in our US at 19 weeks on June 29th.  It was overwhelming to hear.  First the diagnosis was for level L4 and it's since been bumped up to L2, which is actually worse and effects the hips.  She also has Chiari II Malformation, which goes hand in hand with an SB diagnosis in most cases.  Her brain ventricles are just slightly enlarged and haven't budged since the first measurement, which is great news.  I've been seeing a Chinese acupuncturist and herbalist who gave me some wonderfully-disgusting tasting tea I drink every morning which is to help with the baby's circulation of not only the blood (energy) but also her spinal fluid, which appears to be helping the ventricles stay steady instead of enlarging, imo.  This will also hopefully help with her fetal development as well.  She does have an issue with one of her feet also, but we can't quite tell what.  At the last US it was difficult to see and the MFM said it didn't look like a standard case of club foot, but maybe a variation.  As she gets bigger and develops more, it may be easier to see in the US's, but if not, we wait and see what we have to deal with when she's born.  The whole pregnancy is basically a 'wait and see' (very difficult).
After reading several different medical sites full of jargon and worst case scenarios, I was lucky to find an SB group on Baby Center.  It is a great group of mom's and dad's who tell you about their experiences and they are all very different.  We really won't know the outcome of our baby girl's spine until she's born, and even then things can change over the years.  I don't even know what to pray for, other than the best possible outcome.  I pray she has the opportunity to walk, unassisted or not, but if she doesn't, she'll still be our daughter and I hope she finds happiness in life no matter the outcome.  
Braxton is excited about 'his baby girl' on the way.  I'm not sure if he knows what he's really in for yet. He has a hard time sharing mommy with his buddy Sam (our dog), but I think he's going to be a great big brother once she's home and settled in.  She won't be home for a while after birth though, you never know how long.  We won't even get to see much of her the first few days (which already breaks my heart).  She'll be in the NICU getting prepped for her back closure surgery and then once she's stable and hopefully no other issues set in, she can head up to the Neurosurgery floor in Lurie's and we'll get to stay with her then.  
We are very lucky to have access to some of the best hospital staff and the newest state of the art Children's Hospital in the states, if not the world.  The new location for Chicago's Children's Memorial Hospital just opened in June and it is attached to Prentice of Northwestern, the women's hospital.  We've already been to Lurie's a few times; to meet with the Neurosurgeon and Neonatologist, have a fetal echo, and just yesterday big brother Braxton had his annual echo and heart check up as well.  
Since the diagnosis we've been on an emotional roller coaster, but I think it is finally getting better.  No matter our little girl's outcome, or the challenges she will face, we'll be there supporting her every second of the way.  I've been told by several people that God only gives special children to special parents who he knows can take care of them.  I don't feel very special, but I do feel blessed to be carrying a beautiful baby girl that has been given to us and we'll take her any way she comes.  I know several of you are already praying for us and we ask for any prayers anyone can spare.  We appreciate all of them and all of you.  I'll try and 'pretty up'  this blog later when time permits.  
So much more to share so more is on the way.

Have a wonderful and safe weekend,
Angela