Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, September 30, 2011

The biggest lessons come from the smallest things

It was quite a rough night last night.  I talked with Brian about how I was feeling - he was completely supportive.  He told me whatever I needed to do to feel OK, he was right there with me.  He said if I needed to go spend a few nights in the NICU with Meagan, then we'd make it happen.  It felt so good to have his support, and to just let out my emotions.  And it reminded me why I married him and why he's such a great husband and father.

We left early for Children's today.  We took Brian's mom to meet Meagan for the first time -- She enjoyed seeing her and was excited to meet her newest grandbaby.

Brian and I talked to Meagan's nurse about her progress.  She said Meagan had done fine that night still breathing on her own -- she said she was worried they would have to place another catheter because all night, she would have dry diapers, or slightly wet ones... but nothing above 5cc's of pee.  The Nurse said then when she was talking about putting another catheter in, she changed Meagan's diaper again... and... Meagan proceeded to pee all over her. 87cc's worth!! Sooo, needless to say - she did NOT have to get another catheter!! She's continued to go all day on her own too...so we have avoided (for now) this hurdle and hopefully she keeps it up!

I also asked about her oxygen level.  She was on a fast flow at level 7 ... the Nurse turned her down to level 6 and she seemed to be doing well on that.  She stayed on level 6 all day, and when I called tonight, the Nurse said the Respiratory Therapist went ahead and turned it down to 5.  So we'll see how she does on that tonight.  If she does well, they may even turn it down to 4 tomorrow.

Meagan also got her first visit from the Physical Therapist and Occupational Therapist.  They explained what they do and how they will work with Meagan in the NICU.  They went ahead and did an assessment.  They worked with her hands, arms, legs, feet, and eye contact.  They sat her up, turned her head, and put her up on my shoulder on her tummy.  The told me they were happy with how she was doing so far - she seemed very tolerant of the movement.  They said each of them would be back two times a week to work with her and make sure she was adjusting to "normal" newborn life smoothly from the NICU.  They also said their early assessments would help once we get home and get her into the Babies Can't Wait program because they could write up something for the program's therapists so they knew exactly where Meagan was when she left the NICU.

The last and biggest issue is her feeding ... They had her on 30ccs of Breastmilk going through her feeding tube over an hour.  She had a lot of spit up, so they spread that out to over 2 hours ...  They ended pulling about 20-25ccs of residual out of her belly each time though (milk that did not digest but was just sitting in her stomach) .  The Nurse consulted with the Neonatologist  and he said to go ahead and put Meagan on a continuous feed 24/7....so she basically gets 20ccs of breastmilk every hour around the clock.   The nurses still pulled quite a bit of residual out tonight .. but.. it was less than before. So they will re-evaluate tonight .. and then see if they should keep her on the continuous feed, or if they should turn it down to be more like regular feedings again.  What they don't want to do is turn it down before she's ready because then basically, most of the milk is sitting in her belly anyway instead of being digested.. and she isn't getting the proper calories.
We'll see how this goes -- we were told feeding would be the hardest thing for her to accomplish.. and her other little setbacks certainly haven't helped.  But we're confident that as long as nothing else happens along the way, if we can get feeding conquered then at least we'll be one big step closer to her coming home.

Todays' events got me thinking about a lot.  I had such an awful day yesterday with missing her and dealing with the emotions of not just the past week, but, really, an entire pregnancy, that my sadness clouded the truth of the matter.  As the Physical Therapist sat Meagan up today and was working with her, I realized that here is this beautiful tiny little person - who is dealing with more in her first seven days than most of us deal with in a lifetime.  She's been through a stressful pregnancy... brain surgery... enormous pain and discomfort... being poked and prodded day after day ... and she can't even stay with her mommy yet or get a cuddle from me whenever she wants to.  Here I was, being sad, and missing my baby.. but looking at her today, all I could think about is what SHE has been missing.  She is also missing her mommy .. the snuggle time.. the nursing time ... the time just being held close to sleep while I recover.  And she is too tiny to understand any of it.  At least I have that understanding. 

So today I decided that I need to get myself together.  She has so many needs. She has already had a hard path .. and she has a completely unknown future. I can't give her any of what she needs for sure - I can't tell her exactly what she will do in life... I can't tell her the shunt will work forever ... I can't promise her she won't have any setbacks. But.. I can give her ONE thing she needs  - and that's a strong mama.  From this day on, I need to put my issues aside, and be that rock that she needs.  I need to keep looking at things in a positive way  -- and keep my sense of humor I've had this whole time but somehow lost recently.  These are the things I CAN give her.. that she will use to reach her fullest potential.

I love you so much Meagan. Keep fighting your way through all these little challenges so we can get you home where you belong.  But until then, you just focus on you ... and so will I.

I brought in some comfy pajamas for Meagan now that some of the tubes were out. She seems nice and comfy in them!

First session with her Physical Therapist and Occupational Therapist.  She tolerated the movements really well and even opened her eyes for quite a bit!

My favorite part of each and every day

Thursday, September 29, 2011

Enter: Large Brick Wall

We didn't spend as long of a day with Meagan as we normally do.  I had an apopintment this morning to get my staples out so by the time we got to Children's it was almost lunch time.  The first thing I asked about were her blood gases - she had passed but only by .6 the afternoon before - and they had retested her in the early morning hours.  The nurse told me she passed again, but, barely.  I was a bit worried that she'd have to go back on the ventilator, but, sure enough, her next test, while still borderline, did show improvement... and that's what we were looking for.
Meagan was holding her body temp pretty well today.  She also had a feeding early this morning- most of which she spit up.  The nurse decided to slow down her pump so the milk would feed into her over 2 hours intead of 1 hour - and sure enough, she tolerated that just fine.  She ended up having about 3 more feedings during the day - she did have some minimal spit up/bubbles, but overall, she kept most of her food down.  
That said, the nurse did have to pull out quite a bit of residual food from Meagan's stomach a little while after each feed that she did not end up digesting successfully.  So we'll see how she does tomorrow with eating.   

She is still struggling to pee.  They took the foley catheter out this morning to give her a chance to go today - she had the feedings, etc... and by tonight when we left, there still was not pee in her diaper.  I'm hoping that they will call down the urologist at some point to look at her - I think they are going to re-cath her tonight to empty her out to reduce risk of infection unless she starts going on her own before that. Then, we'll re-examine the issue tomorrow and go from there..  So ya know... a day of ups and downs.

This certainly doesn't help the emotional aspect of things.  I think that tonight I have officially hit my brick wall.  From the moment I leave the hospital, to the moment I step back in the NICU, the ONLY thing I think about is Meagan.  I realize I have 4 other kids at home, a house to care for, and a certain sense of "normalcy" to return to ... but ... it is clear to me at this point in our journey that Meagan and I need each other more than the circumstances allow.  I love all my children equally - but she is the one who needs me right now -- she is uncomfortable, in pain, and going through a traumatic process that would even shake grown adults ... and it kills me that I cannot be there 24/7 with her. 
The kids will be fine - they will understand why Meagan needed me at this time and in hindsight, this period of time will be extremely short when they look back at the days mommy was away . They will understand.  Even so, I'm so tempted to go back after the nurses night shift change, and continue my time with Meagan instead of just during the day -- just to lounge/sleep in the recliner that is in Meagan's pod.  Just to be near her .... be able to touch her when I want to... and snuggle her.  Other people need the break - they need to be home to do things around the house, or be involved in their other children's activities.  They need to 'recharge.'  Well, anyone who knows me knows that is NOT me.  My "recharging" would be to stay with Meagan.  My recharging would come directly from doing whatever I have to do to feel comfortable and feel like I'm being there for her. 
In a lot of ways, having had 4 other children does not help the situation because I know EXACTLY what I'm missing these first weeks.  This is the time when we're supposed to snuggle our babies the most - those first few weeks they are so cuddly and so warm. We carry them everywhere with us .. even in the house.  We sit and stare at them at 3am.. even though we should be sleeping.  We change their diapers, work on nursing patterns with them... "ooo and aww" over every little thing they may do..  We just hold them and hold them and hold them.  
 I know the situation is such that Meagan needs to be where she is ... that she is getting the best possible care when I"m not there... but.. I can still need to be with her all the time. I can still miss her. And I do. Every second of the night.

Finally back where she's supposed to be - my arms.

If I had to write one sentence about today and leave everything else out, I would say: "I got to hold Meagan today!" 

Today was a big day for Meagan - she was extubated! Yippee! (Taken OFF the ventilator).  She was breathing on her own the whole night, so, the doctor came by in the morning and helped the nurse take the tube out.  That said, she DID turn blue when the tube was taken out ... they were very close to putting it back in but decided to try some oxygen in her nose just to help stimulate her... that worked and so the tube stayed out.

Miss Meagan is still not peeing on her own.  They still have a Foley Catheter in her so they can make sure to keep her empty to avoid infection - but - even so, sometimes they are having to push on her belly to make that come out.  They will probably have a pediatric Urologist come look at her today if it still doesn't resolve on its own.  So hopefully she'll just fix it today - if not, the urologist will come so we at least know if it's a physical problem - or if it might be our first "hiccup" in her brain fluffing back out.  It was under such intense pressure for so many months, there are bound to be little setbacks here and there with functions the brain either doesn't remember how to do, or takes longer to remember how to do.

We also gave Meagan her first feeding since Sunday! The nurse prepared the bottle for me.. poured my milk into it and let me try to feed her.  We attempted to feed her for about 15-20 minutes .. different techniques..etc.. but the girl was NOT interested. She was interested in food - don't get me wrong.. but.. had no desire to suck. At. All.  So the nurse decided to put in a feeding tube.  We put the milk in a large syringe and she hooked it up to the machine and it pushed the milk on through.  I honestly don't care how Meagan gets her food at this point - Her little body has been through such a huge traumatic thing in a short time.. I probably wouldn't want to suck on a bottle either! So for now she'll receive her feedings through the tube -- she took another one last night and held down all the milk.  That's what's important so it's great to see her handling the milk. 

Other than that, I pretty much held her the ENTIRE day. We got there at 9am.. and we left at 6:30pm.  You know, before you have a child in the NICU, you probably wonder what parents do there all day.  The babies can't really do anything... and it's just so many hours of sitting ... but now that we have a daughter there, I completely understand. There is a LOT going on in all that "nothing" ... We forget in those first newborn  weeks how much we just hold our baby CONSTANTLY .. how much we talk to them .. how much we just sit and stare at them and do nothing at home.  So really, it's the same idea - and for these babies, it's so much more important because they don't have that normal flow of personal connection or human touch.  I could sit there all day and all night to be honest - but - I also have to be fair to my other girls and make it home in the evenings to have dinner and storytimes with them.   

I'm headed back tomorrow to see Meagan again and will update if anything changes!

Wednesday, September 28, 2011

Photos: 4 days old pictures

I called Meagan's NICU nurse tonight one last time.  She said Meagan was being fussy and they had to change her head position (which is very painful for her), so the nurse gave her some minimal pain meds.  She said Meagan was still fussy, and seemed very alert and awake.  Meagan even got her fingers under her breathing tube again.  The nurse is going to call the NICU doctor later and see about getting Meagan extubated tonight. So I guess when I go in the morning I'll see how successful or unsuccessful that was. Here are a few pictures from today.

What a difference a day makes! Yesterday I was still hardly getting anything and now I'm finally getting milk for Meagan!

Resting comfortably.

Meagan gets to meet Nanny!

Holdin hands with her Nana

Tuesday, September 27, 2011

4 Days old .. Lazybones

Today at breakfast we got a call from the NICU doctor.  He said Meagan had a slightly bumpy night.  He said they were going to try to take the ventilator off since it had been a day since her surgery and she had already been breathing on her own for 3 days before that.  He also said that she had stopped peeing the night before.  He said her pee output had been minimal but then went to nothing last night.  She had fluids going in, so they went ahead and emptied her bladder to make sure she had something in it - sure enough, the nurse emptied quite a bit of fluid.  So they let her go some more, and still no pee. They decided to put a catheter in to make sure her bladder was still emptying so she didn't get an infection on top of everything else.  The doctor said more than likely, it was just her body being lazy after surgery.  I asked then why would she pee fine for most of the day, and then just stop... he said she could have just been worn out or had some residual anesthetic that kicked in. 
They then tried to turn down her vent and change the mode to see how she'd do on her own. In the nurse's words... "She didn't even try" .. so they went ahead and turned it back up.  Again, probably her just being completely worn out from the surgery the day before.

Her body temperature is still fluctuating.. they have her under the lamp to stabilize it.  And  she is still on some morphine.  They havne't been able to take her off of it fully because she is too uncomfortable.  The nurse did ask me if it was ok that she have pain meds - I said yes, please. Whatever will make her more comfortable. The poor thing has been under enough stress and in enough pain for who knows how many weeks.  Once she can wean without showing signs of pain, she'll be completely off of it. But, for now, every time she is weaned, she grimaces her face and has rises in her BP and her heartrate.. all signs indicating discomfort or pain.  Again, the doctor said he's sure that will also start to subside in these next few days.  A big part of it is they keep having to shift her head to make sure she doesn't lay on the same part too long - but - she also has to stay off of her incision. So she gets moved and poked and prodded quite a bit and that may also be contributing to her discomfort.

The good news of today was that the shunt appears to be working well so far! She has lost some of her head circumference. We are excited that she seems to be on her way to relief in her fluid pressure. 

We left earlier this evening to go meet our moms and the 4 girls for dinner.  They were excited to see us, as we were very excited to see them. We know this whole situation must be hard on them - not only does Meagan not come home, but, Brian and I are also absent from the house for the majority of the day.  We know we'll all adjust.. but it's much easier for two 31 year old adults to deal with their worlds being turned upside down than four kids 6 and under.  As long as everyone is healthy, Reilly and Kaitlin may at least be able to come on Friday morning to see Meagan. 

Brian and I are headed back to Meagan's bedside in the morning... we are going to try and go a little earlier since we'll have to drive all the way to the house tomorrow night.  A big thanks to the Moms for bringing our girls out tonight- we miss them and know they miss us, and it was really nice to have a family dinner with them all.  Also, a big thanks to Brian's sister and her hubby for getting us this hotel the last two nights. It's been great for my continuing recovery.. and also been really nice to only be a mile from Megs.

Photos: NICU and post surgery

Meagan's MRI scan before surgery - all the white is the fluid that's been building in her brain. The little grey strip is her brain tissue.

Mommy and Daddy's big hand compared to Meagan's tiny hand

FINALLY got to hold Meagan!

Meagan is resting well after surgery - has all the monitors and medicine she needs to be comfortable. She's on a breathing tube but hopefully that comes off in a day.
Her shunt is place about an inch behind her right ear in this picture.. the tubing goes down her chest, stomach and empties into her abdomen. She should start feeling some immediate relief from the fluid pressure.

Sweet baby

The shunt is in!

I woke up Monday morning  fairly early ... my OB ended up coming in quite early and discharged me from the hospital! She was very nice and made my post - op appointment for this week to get my staples out ... and that was it!
Brian and I left - we were on the way home when the Neurosurgeon called.  He said he was going to do the shunt surgery that day and wanted to get our consent. We gave consent and then asked if it were possible to talk with him beforehand ... so we agreed to meet at one of the hospital rooms once we arrived at Children's.

We got to Children's a little after 10am .. I was so anxious to see Meagan!! It had been 3 days since she had been born - and i'ts just not natural for a mommy and baby to be apart!  We parked and walked to the NICU.  We checked in and the nurse took us over to Meagan's pod.  Meagan was SO cute.  She was just laying there resting ... had some fluids since it was before surgery and otherwise seemed happy.  I sat down and the nurse put Meagan in my lap - because of her head size/weight, it was easier for the nurse to just put the entire bedding in my lap, vs. taking Meagan out of her bed..etc.  It was the best feeling in the WORLD to hold her!! She is so cute ... she has the cutest tiniest little face.. her hands and feet are long, but tiny ... and her body is so cute and delicate. 

After sitting with her for a bit, we put her back in her pod, and walked down to pre-op to meet the NSG (neurosurgeon).  He explained everything to us, and showed us her MRI scan.  In it, you can see clearly the picture of the inside of her head - it was mostly ALL white.. which is fluid.  Around the inside edge of her skull, you could see the little grey ribbon of tissue (her brain). It was an amazing picture as far as realizing just how much fluid this poor little thing was dealing with ...

The NSG was very positive - he was very informative and had a great bedside manner.  We then left Meagan, went to the family waiting area and decided to go get something to eat while we waited for her to get out of surgery.

We were back in the family waiting area - the NSG finally came over and said the surgery had gone very smoothly.  He said he had taken both a fixed and programmable shunt into the OR with him.. and once he was inside, he decided to use the programmable shunt.  (YOu can adjust the pressure levels on how fast/slow the fluid is drained).  Everything else went fine and she'd be in recovery for one hour.

As soon as the hour was up, and Meagan was moved back upstairs, Brian and I went back to her pod.  We stayed for quite a while.  She was still on fluids of course, but she was also on a breathing tube.  She was a little lazy after surgery so they went ahead and put her on a tube to assist with her breathing.  The nurse said she should be off of that within 1-2 days as she gets stronger post-op.  She was also on several monitors for vitals - heartrate, blood pressure, pulse, etc.. Her heart rate and blood pressure did have a few episodes where they spiked up really high - along with this, Meagan would whine or grimace her face.  The nurse gave her some morphine in her IV because she said those vital signs jumping up in little babies indicate pain.... She seemed comfortable when we left and the nurse said they do pain meds very minimally, and only if baby shows signs of discomfort.  So, Meagan should be off of that in a day or so as well.

Other than that, she was doing ok when we left.  We will visit her in the morning again and stay the day with her.  I'm still trying to pump to get some milk stored up for this little one ...

So now, it's basically up to her.  She will recover from the surgery, and hopefully start to learn how to eat again.  Once she is showing stability, and can eat, then hopefully she can come home. That won't be for a few weeks though.  Beyond that it's a day at a time! We just keep making sure her shunt is functioning properly.... and we just see what milestones come and when.  I'm so glad we are beyond this beginning stage ... now is the countdown to getting her home! I will certainly spoil her - but - that's ok. I think we both deserve that! :)

Monday, September 26, 2011

Surgery tomorrow

Well it's been a long time waiting, but, Meagan's shunt surgery is tomorrow.. I know it's a surgery that is done a lot.. I know our Neurosurgeon is one of the best at it .. but, it's still nervewracking.  I'm so glad she's getting it thought because now hopefully she can start feeling some relief.  She's really been a trooper and I'm so proud of her.

I'm so happy that I'll be more than likely getting discharged in the morning ... It will be so nice to be out and be able to wait for Meagan so I can give her lots of kisses after her surgery.

If you have a second today, just say a quick prayer for her.. that she comes out of the surgery ok.  I'm incredibly thankful we are at this point... but I'm still her Mommy, so surgery for her on such a little person will definitely keep me on pins and needles today.

Jack, help Meagan through surgery today. Saint Gianna, please pray for Meagan today - guide her through surgery safely.

Sunday, September 25, 2011

A little attitude never hurt anyone

Well apparently, Miss Meagan decided to trick us.  She went for her MRI today -- she did great.  When she was wheeled back to the NICU, she was apparently VERY angry! She was crying and crying - Brian fed her a bottle and she ate 36cc's! This is the number they had been telling Brian she had to eat to come off of her IVs ......

Also, another family we have been communicating with online since finding out Meagan's diagnosis just happened to be at Children's today as well! So my husband and Meagan got to meet this fellow Hydro family!! The husband and wife came to see Brian and Meagan and even held her ... I couldn't be there to meet them, obviously, but, it feels so good to have made that connection with others who are going through the same thing!!!

So I guess it took a little poking and prodding for the MRI... and another Hydro family to come visit.. and Meagan got mad and decided to show off and eat all she was supposed to. What an attitude.  But we'll take it if it keeps pushing her forward with progress! LOL

Day 2 update on Meagan

Meagan is still at Children's Hospital.  Brian's been doing a great job going back and forth between Children's and  me ....I know he must be exhausted!

Basically, we are waiting on Meagan to have her MRI today - this will give the NSG (neurosurgeon) a better idea of where he wants to place the shunt and give him a clearer overall picture of what he needs to do. If Meagan has any other abrnomalities going on, it may also show us that on the MRI as well.

Meagan has been holding up pretty well.  Her potassium was very low on Friday so they put more in her IV.  They re-drew blood yesterday to re-test her potassium levels, but the blood clotted before they could test it.

Brian went down to see Meagan - he sat with her and was going to try to feed her for the first time since I can't go.  I'm pumping for her, but, my milk isn't in yet so for now we're using donor milk .. whch is great. She ended up eating only a few drops and then didn't want anymore, so Brian still sat with her and rocked her for about 45 minutes.  Apparently, she's been having sucking problems - but - this isn't anything unusual for a Hydro baby.  She will have surgery on Monday.. so we will basically be starting from square one with sucking once she's awake anyway.  After realizing these things and talking with the NICU doctor and some other Hydro parents, we aren't too concerned with it at this point. We'll see how this next week goes.   

Before Brian left, the nurses re-drew blood from Meagan's heel since the previous specimen had clotted.  I talked to the NICU nurse late last night and she said they actually had to draw again after that one because it also clotted. Sigh...

As for other things - they keep putting "goop" (I'll find out the real name at some point... ) on her eyes because she cannot fully close her eyelids.  The NICU doctor told me this is common in Hydro babies .. so she gets the 'goop' put on to help when she sleeps because her eyes still stay a bit open.

Brian said it was wonderful to hold her - I'm so jealous! :) But I'm truly so, so happy that Daddy got to go and hold her.  He said it was awkward, though because of her head size. I can only imagine because her body is so tiny, there is no balance... so I"m sure it was a bit difficult. Apparently the nurses helped prop her up with pillows, blankets etc.  I remember how even with a newborn that has a normal sized head, how tired my arm would get from holding them/nursing them... Brian said that yes, his arm was hurting after a bit because of her head weight.

Brian's headed back down there today to spend some time with her before/after her MRI.. Also, another really neat thing is that he's going to be able to meet another Hydro family.  They have a little girl with Hydrocephalus and will be there for some testing, so it works out great Brian will be there too.  We've been very lucky to talk to a ton of Hydro families through message boards, including this family...etc.. so it was a blessing to find them since they live in our city. 

That's about all for now -- so I will be sure to update once we get any information from NSG about her MRI today. 

I love you Meagan.

Saturday, September 24, 2011

Pictures of Meagan's birth

Happy Birthday Meagan Theresa
7lbs 5oz
20 1/2 inches

She looks very determined

Got to sneak in one kiss

Daddy, Mommy, and our newest baby girl

Daddy with Meagan in the NICU

Meagan is serious about sleep

Enjoying her Nap Nanny in the NICU at Children's

Happy Birthday Meagan Theresa!

For the first time in weeks, I actually fell asleep.. passed out... was "dead to the world" on Thursday night. It felt so good because I hadn't slept in a LONG time. Well this lasted about 3 hours until we heard the first crackle of thunder from the storms passing through and immediately, I had 3 children and our 80 pound Labrador in our room.  Luckily the baby sleeps through it all and she stayed in her crib.  Of course at this point.. with kids up and us having a practical monsoon outside, I coudln't go back to sleep because my c-section was that morning.... So much for sleep :)

We arrived at the hospital early as our OB had told us to... only to be taken back to pre-op over an hour past our original time. .. go figure. We got back to pre-op.. and from there on out, it was a complete blur! Everything was extremely rushed... bloodwork, prepping for surgery, questions, monitoring..etc.  I did have a slight "panic attack" because the nurse could NOT find Meagan's heartbeat. Now, I know little Miss Meagan has been extremely difficult to find at appointments and at my NST's... but.. this time it was SO long. And nothing. Not even her kicking me to tell me "I'm ok.. I am just playing hide and seek"

Luckily, my OB was already there.  She whisked herself away to grab an ultrasound machine and came back with it to my prep room.  She looked around for several seconds and then was able to see her heartbeat. WHEW.  Apparently she had flipped in a weird way and it was almost undetectable.  Way to give mommy a heart attack on the day of surgery little one!

Our parish priest showed up - gave us a blessing and then was put into scrubs so he was ready to come in the OR when called.  My husband got into his scrubs too - he looked so good. (ha) ... we had some fun with that and took a picture of him.  Then, the ansthesiologist was going to come in.. but I heard a familiar voice outside the curtain....
Some background - I teach flute lessons.. and one of my students has both parents in the medical field... the mother is a Pediatrician and the father works in Anesthesia... The dad had been on OB the day before, but, was not for the day of my section so when I heard his voice, I was quite surprised!  He came in and talked to Brian and myself and said he had swapped out with someone else from Anesthesia so he could be with us that day.  It was the nicest thing - because it gave us another familiar face in that operating room and someone we knew and trusted.  It helped me A LOT and we truly appreciate him making the effort to come and help us with Meagan's delivery!

We were finally all ready to go - we went down the hallway to the OR ... they gave me my Spinal (which wasn't bad at all by the way) ... they got the table set up while my OB scrubbed in... she returned and away we went!

All staff in the room were GREAT at talking with me - it helped the time fly by and helped my mind stay off of what was going on.  I had been quite nervous before they started on the surgery, so all the distractions were welcome!

Finally I heard my OB say "ok it's about time!"  The next few moments were SO painful ... not because of the incisions or the pressure of getting her out.. but because my shoulders and lower neck were absolutely KILLING me...  the doctors were great though and stayed on top of it. They gave me something in my IV to help with the pain in my shoulders and it did get better. It took a few minutes to get her out.. they had to do quite a bit of tugging, pulling, and put a lot of pressure on me.  Her head was pretty far down, at least as far as it could be considering its size, and she was being a little difficult at coming out! Finally, I felt a HUGE sense of relief - I could breathe for the first time in months.. .she was out.

The NICU staff took her over to the table to clean her up/assess her vitals. Meanwhile, they called in the Priest... he Baptized her right away and then Confirmed her.  It was very bittersweet.  I was glad Meagan was getting what she needed spiritually, but all the struggles we had with the priest had really tainted the "human" part of it.  I had to just focus on the fact that Meagan was getting invaluable sacraments, and he (the priest) was only the person - it was really God helping Meagan and maybe somehow through all of this, the priest would change his inaccuracies so future families could have their sick children cared for. Still, it was a hard pill to swallow.  Father stayed with my husband while the hospital staff took care of Meagan. They brought her over for me to kiss once and we got a family photo taken... then she was whisked off to the NICU and my husband followed.

Meanwhile, they finished up with me in the OR .. and then wheeled me to recovery.  Brian came back and showed me all the pictures he had taken.  I didn't really get to see her a long time - just a few seconds.. and because of where the table was in the OR, I hadn't seen the Baptism/Confirmation either, so it was great to look at those pictures. 

The nurses in the recovery area took great care of me - and after about an hour or so, I was wheeled upstairs to recovery.  I had a good friend come sit with me while Brian got ready to go to Children's. The Transport team was very nice - they wheeled Meagan in her little incubator up to me in recovery so I could see her one more time before she left. Then she and Brian made their way to Children's Hospital. 

I spent much of the rest of the day relaxing - trying to start my healing process.  My friend brought a movie I loved and we watched it together.. I made sure to stay up on my fluids and try to start getting some milk for Meagan. 

Meagan herself was doing great.  Except for a little oxygen at the start, she was breathing on her own on room air.  She scored an 8-9 on her APGAR (10 is highest), and she seemed pink and alert.  Her head circumference was 49cm+ and she had a LOT of dark brown hair.

Now we wait at the hospital.. I should be discharged in about 3 days .. my husband is continuing to go back and forth between here and Children's Hospital to keep tabs on Meagan.  She is awaiting her MRIs today so the Neurosurgeon can see more detail of what he's dealing with and where the best shunt placement will be.  Apparently, her surgery has been scheduled for Monday, unless he decides differently. Part of this is probably to her doing ok in the NICU (vitals being good) and the other part due to the fact that it is Saturday - so they prefer to do the surgeries on weekdays.. the next one being Monday.

Overall everything went very smoothly ... I do miss her A LOT though.  I know she is where she needs to be - and she's in wonderful hands... but... as a mother you just want them in YOUR hands.. not someone else's.  I think I have slept less here than when the newborns are in the room with me crying every 2 hours for food... but.. what can you do.

I'm so happy she's "here" finally ... and I'm glad we'll get her scans done today and see if there are any other brain issues/abnormalities present.  It will be a relief to have more facts - to at least see if we are dealing with more than just the Hydrocephalus..etc. so we will see.

Meagan, I miss you so much! I hope to see you soon so I can touch you and kiss you.  It is hard being apart from you but I know this is what is best for you so you can reach your fullest potential in life.  Hugs and kisses.

Monday, September 19, 2011

A new beginning

Well here we are.. a few days before delivery.. and so many thoughts are swirling through my head.

I am so blessed to be Meagan's mommy. I think this has been meant to be for a long time.

Last Fall I remember feeling funny - Maura was still nursing, so I had no "typical" signs of being pregnant, but I just had a feeling. I took a test and sure enough, positive!  I was so excited - I didn't really have an exact number as to how far along I was because of the nursing, but, I had a good idea.  I had very low progesterone with my previous pregnancy, so, I decided to call my doctor. She said to come right in so they could draw my blood and check.  They dated the pregnancy - I was due in early June 2011!

I remember a few days later getting the results - my Beta numbers (pregnancy horomone) was fine.. but my progesterone number was abysmal.  I was immediately scared and worried.  She put me on progesterone supplements right away - but my blood draw two days later told me all I needed to know. My progesterone had not recovered - and now my Beta numbers were dropping. I was going to lose this pregnancy. 
I started to think - "How can this be happening?" I had 3 great, fairly "uneventful" pregnancies ... and this was all new territory for me.  The worst part was the waiting - just knowing it was going to happen, and then waiting for the inevitable.  Knowing I'd never meet the life inside of me - not in this world.  It was such a hard week. 
Being a musician, one of my "outlets" has always been music. Stressful times, sad times, disappointing times... they were always made better by me practicing and putting my emotions into that music.  Ironically, that next weekend, I had our Fall concert with the Symphony ... all I could think about is "Oh no.. what if I start to miscarry that weekend?? What will I do?" 

Sure enough, the Saturday of our concert, October 15, 2011, I started to bleed. I didn't know what I was going to do, or how I would get through it.  I remember being at rehearsal - seeing all the smiling faces of my fellow musicians... hearing them laugh/joke around because it had been a while since we'd all seen each other. And all I could think about was my baby leaving me.  It was the hardest weekend I've ever had.  I had to sit there and play - and no one knew what was going on. I was not up for saying anything - it was all so raw.   Being pregnant, whether surprised or not, is natural. It's what women are built for. Having the baby and not being pregnant anymore is also natural. But being pregnant, knowing my baby was inside, and then knowing my body was shedding it - was just devastating.

On top of everything, Maura suddenly stopped nursing that weekend as well.  She would still nurse about 4 times a day... and in the previous days I had loved it even more. It brought me comfort in such a sad time. But suddenly, when I actually started to lose the baby, she would start to eat and then immediately pull away screaming.. or make faces like she didn't like it anymore. My only guess was that the sudden change of horomones had also changed my milk and she didn't care for it.  So the same weekend I lost the baby, Maura also quit nursing. It was a low blow emotionally.

After 9 days of bleeding, 2 weeks of cramping, and several emotional breakdowns, my miscarriage was "complete"... such hollow words. No baby. no due date. no new baby items. no nothing. Brian and I did name the baby - it was still our baby - and was still alive in me - even if only for a short time. We always felt it had been a boy - and I had even dreamed of a little boy... so we named him 'Jack.'  There is not a day that goes by where we don't think of baby Jack. The girls know about him - they know there was a baby in mommy's tummy.. who went straight to heaven. They know they have a saint in heaven in baby Jack. They know that our goal for our children is to get them to heaven.. and.. baby Jack got called early by God.

There is nothing like going through the loss of a pregnancy... it is not only a sad feeling, but, a completely EMPTY feeling. It is an emptiness like no other - the emotions came in waves. The only 'saving grace' for me is that I know Jack is in heaven...My doctor (who was wonderful)  told me it was out of my control - because it happened naturally...babies who are meant to be born go to term... and babies that are not meant to be born, have something wrong with them - and our bodies know it - so God calls them to heaven early.. I still have trouble with the phrase "naturally" though......I know my body failed my baby... but it just isn't natural to have my baby ripped from my womb. It's not natural for a mother and child to be seperated...  I will always feel empty for Jack because even if I have more children in the future, he was unique. He was the only baby Jack there will ever be. And I will always hold him close to my heart in everything I do.

Fast forward to Christmas time 2010.. Brian and I talked, and we were ready to try again.  I remember being scared - everything in those first weeks was pins and needles now.  I took a test in late January, and I just "knew" I was pregnant. The test results were VERY light, but, I knew we had another baby on the way.  Of course this time I immediately called my doctor again. She brought me in for a progesterone draw - this time, my Beta numbers were fine, but my progesterone was very low - again.  She put me on supplements immediately, and we had to wait. I was extremely worried this one would end the same way as the last - but luckily, two days later, my second blood draw showed that my progesterone numbers had gone UP! Thank God -- this looked like it was going to be a baby that stuck around! Even a better sign, I thought - was baby's due date. After my initial appointment, my doctor said... ok! Everything looks good so far - looks like we will be having a baby on October 15th, 2011.

I remember being taken aback - October 15th?? Oh my... same day I started to miscarry last year. I started to worry and all the emotions flooded back. But then I also remember thinking "Thank you Jack - thank you for giving me something to look forward to - so I could have a good memory on that day."

The first trimester was nervewracking anyway - even after we saw the heartbeat, there was the fear. Then when we neared the 13 week mark and I could stop taking my progesterone, there was the anxiousness that my body would take over properly once the supplements stopped. It was a very nervous time.  I remember seeing the baby for the first time in such an amazing way at my 13 week scan. The baby was wiggling all over - two arms, two legs, body, head, facial features -- baby was PERFECT! We were so elated, and relieved!

We pretty much carried this excitement into our 20 week scan. We were so glad to be past the "scary part" and on to what was a successful pregnancy. All the worry of miscarrying had pretty much left us, and we were so excited for that mid-way scan.  We decided to not find out the sex (we had 3 of our 4 be surprises and loved it).  We went in for our scan - and I remember the doctor going over everything with us - how perfect baby looked... all parts present...etc.. and then the words... "Baby has fluid in the brain - we are going to have to send you to a Specialist."  My heart sank - not in disappointment about the baby or what could be wrong with her - because we would accept any child... but more in a way where all my emotions from the previous October came flooding back to me.  I thought "Please Lord, I cannot do this again - I cannot lose the baby again."

Now as I sit here ready for delivery, even with all we've been through, all Meagan's issues, and all the uncertainties we have in the future with her... I finally realize why I was meant to only have Jack inside for 8 weeks.  Because Meagan was meant to come to us - to our family.  She needed a lot - she had a lot of struggles, and God must have thought she needed to be with us.  This could have never happened without us going through the loss.  I realize now that the pain we endured last Fall was so Meagan could come be with us now - because we were meant to be her family.

I titled this post "A New Beginning" because it really is in so many ways.  We have a new beginning with a new baby after our loss last year.  We have a new beginning with Meagan's journey - it's not the end of a pregnancy, but, the beginning of Meagan's life. We have a new beginning of an unknown chapter of Meagan's journey... and we have a new beginning as a family with a new little girl to care for. It is also a new beginning emotionally - as we take all the emotions we felt when we went through with the miscarriage... all the emotions we have been through with Meagan's diagnosis.. and try to focus all that energy on carrying for Meagan and helping her develop to her greatest potential.

Baby Jack - watch over your sister and help her come to us safely.  Stay by her through surgery - and hold her hand while she is in the NICU recovering.  We will always be your mommy and daddy. We look forward to meeting you one day in Heaven. We miss you and love you - but now we realize you are meant to be Meagan's little Saint ... and we know you will be a great big brother to her.

Meagan - we cannot wait to see you. We are now just days.. hours away from seeing you.  Know you have a lot of people praying for you - 2 parents here waiting to hold you... 4 beautiful sisters here waiting to smother you with hugs and kisses.. and one very special big brother who will be with you all the times we can't.

Saturday, September 17, 2011

120 hours

Well.. got the callback from the OB.  Apparently the hospital said they were busy on Thursday.. but the office pushed through anyway..they tried to get us in but with coordinating with the NICU and the Neurosurgeon, Friday will just work better... so Friday it is! I'm so happy that in 5 days we will meet our sweet little Meagan.  Now... what to accomplish these last 5 days...!!!!

Thursday, September 15, 2011

Results.. and a new plan!

The Perinatologist office called me back this morning.  I was on the way to my OB's office for my NST and my 36 week check up.  The nurse told me that there were two sets of numbers run for Meagan's lung maturity.  The first set, she passed no problem.  The second set, they like to see "4" and she was at 3.75 so the Dr. was not going to pass her.  Sigh.  I was highly disappointed, but, what really put me over the top was what she said next.  She then told me that the Dr. had ordered to come back in 10 days for another Amnio.  TEN days? Seriously? To get from her result to 4?? Now I was angry.  That's 10 more days of fluid growth, of head circumference growth, of fluid pressing on her poor brain.  We aren't "early" anymore -- by next week I'm going to be 37 weeks.. full term in medical lingo.  There was no way I was going to put up with this.  We had gone through enough back and forth with this Peri's office ... and now, it was time for us to make the decisions.
I reached my OB's office just as I was hanging up with the nurse.  I told her I wanted to have the Dr. call me back directly -- she said he wasn't in the office that day.  I asked , "well, what office is he in?" She gave me the phone number to the office and then said "he may not get back to you because he's going out of town this afternoon."   Well, I guess we'd be calling him then until he talked to us.
I hung up the phone and walked into the OB office.  I went on the monitor for 25 minutes.. Meagan was doing fine.  I was contracting every 1-4 minutes..but... what else is new.  It's pretty much my state of being these days! I think I'm about as stretched as I can be, so contractions it is! After the NST was over, I went into the room to wait for the OB.  As soon as she knocked on the door, I heard her phone go off. I immediately thought "uh oh.. she has to go to a delivery."  Yep! So, off I went - headed home to trade cars with Brian so he could go pick up the girls from school since I'd have to return to the OB office a bit later when the doctor returned. 
What I didn't realize is that this little random 'break' in my appointment actually would work out well.  Once I got home, Brian and I discussed the Amnio results.  We decided together to call the Peri back and try to talk with him.  I had Brian make the call because I was way too emotional at this point - at a crossroads between frustrated, angry, and disappointed.. so he needed to do the talking.  When Brian called, the Dr. was with a patient so Brian asked to have him call us back ASAP.  About 5 minutes later, the phone rang and it was the Dr. Brian simply asked him for a more thorough explanation of the Amnio results.. and why when she is so close, but having such intense fluid growth, he would not consider passing her.  The Dr. said "If she were in dire need, or sick, he would absolutely deliver her based on her numbers. But she wasn't, so he didn't pass her."  Brian voiced his concerns over such a conclusion, citing that brain deterioration was certainly a "dire" situation...especially considering we DON'T know what her prognosis will be -- why allow even more pressure to build? We could be losing things that may have turned out delayed or damaged... ten more days could mean they are ruined. 
The Dr. then said that he would have us come back next week for another Amnio instead of 10 days.  Brian said no, that we would want to look at delivery next week.  We wouldn't need another Amnio since her numbers were so close -- the Dr. said that as long as we knew the risk of her possibly having some breathing issues if we delivered next week, he'd be ok with it.  Brian said "yes, our concern now is her brain - not her lungs at 37 weeks  - which is medically full term" ...after much discussion and sticking to our guns, the Dr. agreed and said he would approve delivery for next Thursday! :)
At this point, I left the house to go back to the OB since she had returned from the delivery. She came in and said the Dr. had called her and told her about Thursday - she was fine with that.  She looked at my most recent pictures of Meagan and said "Poor baby!" She said she would have her scheduler work very hard to get me in Thursday and would call me tomorrow with my exact time.  She said "if" by chance they could not, then it would be Friday - but she herself would prefer Thursday so we'll just see what happens with the scheduling.  She was very supportive and extremely understanding of our position.  She went ahead and set up one last NST for Monday and scheduled my pre-op appointment for that afternoon as well. 

I do want to clarify one thing.  As much trouble as we have had with this Perinatologist, I'm trying to keep an open mind.  As much as I'd love to scream at him, I know that for some reason, we were sent to his office.  Just as we were sent Meagan for a reason, there must be some underlying purpose as to why we saw this doctor.  I still plan on coming in at some point WITH Meagan once she is home/stable..etc.  I think a big part of the treatment we received was not just that he doesn't see many Hydro cases, but, also that he doesn't see the humanity in the diagnosis.  Perhaps by meeting some of these babies (as other Hydro families have told me they also did), and building the humanity of these babies, we can stop the complete dismissal of their value of life.  Perhaps the Specialist will see that there IS quality in every human life - even if he can't see past the grim prognosis of certain diagnoses he must deal with on a daily basis.  Perhaps Meagan was sent to us so she can add a little bit of beauty into the Peri's mindset - and maybe as time goes on, and he deals with other Hydro families, he will start to think of these children more and more as his special patients, instead of just words in a medical diagnosis...hopefully resulting in a shift from "would you like to terminate" to "here's how we treat her" ......

SO very happy that in 6 days from now, Miss Meagan will be OUT and on her way to some relief with her shunt.  I'm getting a bit apprehensive about the c-section now because I was actually surprised at how uneasy the simple Amnio made me feel! But.... it is what it is. I have to go through it, so I'll just look forward to next weekend because then it will be over and I can just focus on Meagan. 

Meagan - 6 more days. You can do it baby girl. We love you so much and cannot wait to see you, kiss you, hold you and just give you all the love that we know you have always deserved!

Wednesday, September 14, 2011

Photos: 36 weeks

They couldn't really get a good "top of the head" shot like I've been posting these last 15 weeks.. it doesn't all fit into the screen anymore.  She was able to give us a good profile shot.  You can really see her head size here.  Poor baby.

36 week Perinatologist visit

Today we had our 36 week ultrasound with the Peri and also our Lung Maturity Amnio. Turns out, the Specialist was very receptive to our demands from 2 weeks ago.  I think the last appointment went so badly and was so agumentative, he realized that we are not going to budge.  He was very kind today and open to everything we had to say. 

The ultrasound was pretty much what we've experienced every time. Very thorough and lots and lots of measurements.  One of the neat things, though, was that this time we saw SO much detail.  We could see Meagan's eyelashes! And even hair - the tech said she has quite a bit of hair!
Meagan's head has grown again - so she is pushing 48cm + with her head circumference.  Her BPD measurement, which I did NOT want to see go past 12cm (because it means a more complicated c-section for me = more risks in the future) was unfortunately 12.6cm.  So I guess it is what it is, and we'll just have to go with it. 
The one piece of "good" news was that her abdomen has now caught up to her body.  It, along with her other bodily measurements, were right on 36 weeks - so it was good to see her stomach wasn't measuring a week behind anymore. 
Her estimated weight at this point is almost 10lbs!!!! Of course, we realize a lot of that is her head - but it's still quite a bit to digest.

Then I was prepped for the Amnio.  I have never had an Amnio done in 4 kids... so this was all new to me.  It really didn't hurt at all - it was more uncomfortable than anything... like something that is on your skin you want to rub off, but can't.  It was very quick - I could probably count slowly to 10 .. and in that time, the Dr. had inserted the needle, withdrawn the fluid, and taken the needle out.  I was thankful for the fast pace of the procedure.

The Dr. then told us we could expect one of three results: 1.Immature - lungs are not ready for delivery. 2.Transitional - Enzymes showing lung maturity are present, but, they are not at a high enough level to qualify as "mature" 3.Mature - Enzymes are in the fluid and showing a high enough level to qualify the lungs as mature and ready for birth. 
If Meagan's lungs show "Mature" tomorrow, then he said he will press forward with us for delivery.  He said we could look as early as Friday if this is the case!  I may ask for Monday, though, if they can fit us in because that way we have the weekend to set things up and it gives a few days for the 2 Grandmas to make their way down to Atlanta to watch the girls.  Plus, I just found out our Priests are on retreat this week (of course..) so Monday would be a much better day all around!
If the lungs aren't quite ready, though, and show "Transitional,", then we will simply come back next Wednesday morning for another Amnio and we will repeat the test.

I was VERY happy to hear that he will move forward if she shows her lungs are ready.  I am really hoping she does show ready -- but, I'm not holding my breath because I realize it is still a few weeks before a normal delivery time.  So I'm cautiously optomistic.. but not banking on it because I do not want to be disappointed.  We should hear the results early tomorrow morning, so I will update the blog when we hear back from the Perinatal Office.

I'm very happy with how things went today.  It just goes to show - trust that 'mommy' instinct. Fight for what you know is best for your child...present valid and appropriate information....dig your heels in the ground... and the doctors may just eventually give in and see your side of the story.  We never know how these doctors will look back and reflect on our cases, or on us as people. Perhaps, if we keep pushing them to find out more, it will be just a little easier for a future Hydrocephalus parent.

St. Gianna, pray for Meagan.

Thursday, September 8, 2011

35 week OB check

I had my 35 week OB check up today.  I started out with 30 minutes on the monitor for my second NST this week.  I was contracting about every 3 minutes - of course, but, no need to do anything as it isn't going to put me in to any real labor.  It's annoying - to have these contractions and know they aren't doing anything since she can't engage like she needs to, but, at the same time, the contractions are comforting because I know my body is near done with this pregnancy. The frustration lies in the fact that they will never actually throw me in to "real" labor.  My only hope of going in "on my own" would be if my water breaks.  Oh well... I would go through 10 weeks of these contractions/discomfort if it meant her getting here safely.

I don't really sleep at night because I cannot lay down - if I do, I can't breathe because she is taking up SO much space in there.  Other Hydro moms I've talked to have mentioned this before.. and now I know EXACTLY what they mean.  I've carried two 40 week babies... a 39 week baby.. and a 41+week baby.. and NONE have compared to the difficulty I'm having on the inside with this one!  Not even Kaitlin who was over a week late. I have to sleep sitting up - but I keep waking up during the night because I'm just not used to sleeping so straight up. I did talk about this with my OB because obviously, with 4 children, a house to tend to, and a teaching job, I need to have my rest to function. My OB did say I can take some Tylenol PM to help, so if I stay sleepless these next few nights, I may try that and see if it helps. She also said if that doesn't help or I am really having problems by next week she'd be glad to give me a small prescription so I can get my rest before Meagan arrives.
I also feel like another big growth spurt could have happened this week.  Of course I could be totally wrong - but - I'm feeling very eerily similar to the few days before I had my last scan when we found out her head had jumped up 9cm.  So I certainly won't be surprised if we go back next Wednesday and she in fact did have another jump in head circumference. 

My OB was back to her usual nice self - not that she wasn't 'nice' last week, but, it was more of a "business" appointment since I had to throw all our troubles with Dr. Specialist on her last time.  I'm sure she also feels in a very awkward position because she knows us well and knows we are only looking out for our daughter.. yet she has to go by what the Specialist says since he gives the final say in when Meagan is born. This time she was very understanding and it was a good appointment to just talk and know she was there for us.  She told me she'll be thinking of me next week when we have the amnio and will be hoping the lungs show mature.  It's nice to have her support since the Specialist we see is a total doozy.  She gave me a prescription for my flu shot, and then said she'd see me back on Monday for another NST.

Pretty uneventful day - which is a good thing - but - eventful in the fact that we are 35 weeks!! YAY! Worst case scenerio - it's 25 days until I get to see my beautiful Meagan!! 

To pass the time in small portions, I'm starting the countdown now until next Wednesday.  We see the Specialist again then (gag) and get our Amnio done.  Say a lot of prayers that the amnio results next Wednesday show her lungs are ready to go!

Thursday, September 1, 2011

34 week OB check

Today I went for my 34 OB check.  Everything basically checked out fine.  I had my first NST (non-stress test).  Meagan did ok on it.  Then I went in for my belly check and to discuss what we'd talked about with Dr. So and So yesterday.  This is the first week my belly was actually measuring ahead, so I guess she's pushing more outward than I'm used to!  I did drop about 5 pounds in weight - not sure how or why, but, I did.  I eat a lot and all the time... must just be how my body is handling it. 

She said Dr. So and So had called her about our appointment yesterday.  She basically mimicked what he had said.  I listened but then told her we were pretty adament about our position, and, we were doing it in a completely rational way.  She finally just said that she hoped the lungs were mature in 2 weeks.  I really like my OB but I could definitely tell this was a "sore spot" for her -- I know where she's coming from - liability, baby being mature enough..etc.. however.. we have such a great working relationship, I basically interrupted, laid out what we thought, told her we had no trust or anything for Dr. So and So ... and cut it off there.  I don't want to feel any sort of discomfort with my OB because of our past relationship being good - and - since she's delivering me, I need to think (even if she doesn't truly feel that way) that she's 100% backing me up so I'm confident in her. 

She then called over to the hospital to order my second steroid shot.  I went over there to check in to Triage.  They said it was just standard policy that all patients have to go on the monitors for a certain amount of time if treated there - even for a shot.  I said ok, no problem. 

As I laid there on the monitors, I started to have contractions. Go figure, I thought.  I kinda laughed to myself at the fact that she'd just been through her NST with nothing and now, here I was having pretty strong contractions 3-8 minutes apart. Regular. And actually causing me pain! The nurse asked me on the scale of 1-10 what the pain level was -- The actual tightening in my belly was about a 4-5... strong enough to make me uncomfortable but not painful per say.  The pain in my back though that traveled forward TO my belly - wow! I definitely gave it a 7.  For me, that's strong because I do have a pretty high pain tolerance.

The nurse called my doctor to see what to do -- she said since I wasn't having any dramatic cervical changes (only went from a fingertip to  1+cm) to let me go home and monitor them there. I was released to go home and so I went on about my day.

I go back now twice a week to her for NST's and check ups in addition to seeing the Perinatologist (gag) once a week. 

I know these long periods of contractions will continue until she's born.  It's so frustrating though because I highly doubt she'll ever actually put me into labor unless my water breaks.  Yes, she is large enough to be causing my body to contract.. however.. her head is so large, she cannot engage where she needs to for actual cervical change... so I am just going to assume I'll have contractions like this these last 2-4 weeks without them actually "accomplishing" anything. Sigh.

That's about it from today.  I got a lot of cleaning done - I guess that's one good thing about being really mad at the Specialist.  My house is sparkling!

Photos: 33 weeks, 5 days; with comparison below

33 weeks, 5 days

And just for comparison:  Photos from 21 weeks to now:

21 weeks - you can still see the ventricles clearly, but obvious fluid build-up

27 weeks - you can see fluid has started to take over most of her brain - her head starts to measure ahead of her gestational age at this point.

33 weeks 5 days - not really possible to measure her ventricles anymore. Her head is "off the charts" at 41 cm.  Her head as a full term newborn should only be between 32cm and 34 cm.  (So currently, she has a head the average size of a 12-15month old depending on where on the curve they fall)

The sides of her head couldn't even fit into the ultrasound view - so these measurements can only be a "very good estimate" is what we were told. 
Also, her BPD (ear to ear) measurement is nearing 12cm (currently at 11.7cm).  This is important because it may impact the kind of c/section I need to get her out safely.