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