New goals and snuggly moments

The last two days have been 'mostly' good for little Miss Meagan.

Yesterday was huge because she came OFF the oxygen!! She still kept the canulas on all day in case she had a lapse etc.. but she did great.  From the minute they turned the O2 off, she said "See ya oxygen! I can breathe ALL on my own!" :)

The NICU doctor came by and talked with us - she said the NSG (Neurosurgeon) had pretty much handed over Meagan to the NICU.  In other words, the NSG was totally happy with her shunt, its placement, its functioning.etc...so he signed off on her to work with the NICU team on the rest of her little hiccups so she can work towards going home.  They said the reason her site was SO puffy was because of where the NSG had to place her shunt.  Apparently, because of the type of Hydrocephalus Meagan has, he had to put it over her cranial bone, so the shunt sticks out quite far compared to other surgeries he has done.  He said other than looking "funny" though, it was functioning perfectly, and looked great.  He said this was the best spot for her condition personally, so they went with it.  I'm not really concerned - the main thing is we want a device that works the best it can... she'll have plenty of hair by Prom :)

The doctor was very informative.  She addressed our concerns about the shaky/tremor activity and said the best thing to do would be to refer us to a Neurologist and let them take it from there.  She said if we notice something abnormal or different, please always ask because even though they have the medical knowledge, we know our babies best.  And she also pointed out that Neuros are really hard to see as an outpatient - somtimes you wait months and months.  She said she wanted us to meet so if, God forbid something DOES go wrong, the Neuros already know us, know Meagan, and know how they can help her best. They will also be the ones to order the baseline EEG. Of course the NSG will still be involved since she has a shunt and will be shunt dependant her whole life.  It was SO nice to see everyone working so nicely together and communicating openly about plans, changed plans, and potential problems Meagan (and us) may face. 

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Today, we went in and, there was Meagan's beautiful face!! NO oxygen tubes - YAY!  She looked so much different.  She was very alert, eyes open looking around... she was squirmy.. for the first time she was stretching like newborns do when they wake up.  It was a great to see her so alert and doing so many "normal" things I have seen with my other four girls in their first few days of life. 

What we saw when we walked in! No oxygen tubes and a smirk! 

The speech therapist wanted to come work with us to try Meagan on a bottle.  She sucked a little, but, basically had ZERO interest. LOL.  Which I find funny because she does take a Paci like nobody's business.  She will suck on her Paci like it's her job - so - with time, we're hopfuly she'll get the bottle feeding.  The Therapist said we'd try again tomorrow - if no improvement, they'll call the LC in and have her help me get Meagan to the breast.  The LC told us earlier in the week it's really a toss up what babies do - especially Hydro babies.  She said she's seen both  - babies who prefer a bottle, and those who prefer the breast -- and any sort of combo of the two ...  so she said we'd just work to find whatever Meagan takes to easiest.  I told her that was FINE because our number one goal is getting her to eat and come home.  If she ends up bottle feeding, then I can just work with her at home. Being my 5th kid, I'm not too stressed over it.  I just want her to get my milk somehow - and I'm fine if I need to work with her at home a little bit.

Her head circumference did go back up today - to 45cm.  Quite honestly, I was VERY glad to see that.  Just as you don't want it too big, you also don't want it to shrink too much - she's already lost 6cm off her head, so this is a good 'plateau' point I think.

One thing that threw us for a curveball today was her genetic testing results.  We had her blood drawn after birth for the genetic testing because we had declined the earlier Amnio due to miscarriage risk.  Almost everything came back fine except a few of her markers were elevated.   Brian and I had JUST left to get lunch when my phone rang from the NICU - the doctor explained the situation and told us Infectious Disease needs to be contacted.  By the time we got back upstairs, there were 2 infections disease doctors at Meagan's bed -- we were told we'd have to gown and glove to hold her until they got more specific results back tomorrow.  Upon further investigation, though, the infectious disease doctor concluded that holding her was just fine - they took some urine to run it for further clarity.. and if that also ran high they would re-draw some blood for comparison.  So ya know - can't go through one day with out something happening :)

 Meagan meets her Ranger Bear from Uncle Mike (her Godfather)

Meagan rockin' the Cloth Diapers in the NICU

Snuggling in her blankie - Baptismal gift from Uncle Mike and Aunt Katie

On a personal note, yesterday, my left side started to hurt me -- I just kep using heat, massage, and tried to pump a ton.. but tonight, it hit me like a ton of bricks.  Soreness, hot spot, redness, body aches, and a 102.7 fever -- ugh! Mastitis had struck again.  I've had it about 3-4 times with other babies... but.... sometimes I'm able to work with it as long as I feed the baby a certain way.  Well the pump certainly does NOT work like that - so, here I am with full blown Mastitis.  Luckly my OB, once again, is awesome and called me in meds immediately -- I am in so much pain and very hot and feverish - but - all I can think about is Meagan's suffering.  Look what she had been through by just 11 days old -- I had NOTHING to complain about.  So all my pain, soreness, discomfort - I offer it up for you little girl.  Please start eating soon so we can get you home!!!

Night Night Baby Meagan! You have a very Protected Crib!

New worries, and new accomplishments

Meagan seems to be holding steady on her feedings finally.  The NICU doctor told us that anytime a person has trauma to the stomach area, there is always a chance the digestive system can be really messed up. She said especially in younger patients, and ones dealing with other issues. 

She said Meagan's delays are probably due to the incision in her tummy. (Where they have to pull her catheter through for her shunt).  She said her body just reacted to the surgery and she sees it a LOT in Hydro patients.  The doctor said since she's tolerating her feeds well through the tube, she doesn't want to change anything right now as far as trying bottles just yet until she gets her volume up.  She turned up Meagan's volume by 5ccs an hour and so far today, she was tolerating that well. So now she's on 20ccs per hour on continuous feed.  The doctor said as frustrating as it is, there is no need to rush her because even more frustrating would be to have a set back and start all over again.  I really appreciate her patience with Meagan and am glad she's caring for her.

A piece of good news was that it looks like Meagan will come off all oxygen tomorrow!  She was taken off the high flow oxygen today and put on a low flow of only 2.  The nurse said tomorrow she'll surely come off because she's doing great and not on a high percentage anyway. Hopefully that happens, and we'll be down 2 tubes to deal with! :)

Enjoying her new hat from Aunt Jennie

We had two new concerns arise today. 

First, we have noticed over the last several days that Meagan has shaking episodes.  Nothing crazy, but, still enough where we notice. It's almost like a tremor through her back or head and sometimes her eyes roll and her mouth does funny things.  They tend to come in waves ... about 4 or 5 repetitive motions at a time and then it goes away until some time later.  I realize newborns can have shaky moments, or "jerks" as their muscles are getting used to being outside the womb and strengthening - but in 4 very different babies, I"ve never seen motions like this.  Just because of my uneasiness, and knowing Meagan is dealing with the Hydro, I decided to call the NICU doctor and ask if we could run an EEG on Meagan.  It's completely non-invasive.. and she's laying in the NICU anyway, so I'd rather do it now.. than take her home still wondering and have to bring her back and disrupt her schedule again.
The NICU doctor was extremely receptive to us.  She explained she has a daughter with a seizure disorder and completely understands the need for peace of mind. She also said that because Meagan's Hydro, there is an increased risk of seizures down the road - so even if everything checks out fine, it will be a great idea to have a baseline EEG so we have something to compare future tests to.  I really appreciated her openness, and her pro-active nature.  She said she'd call Neuro and then go ahead and order an EEG for Meagan while she was in the NICU.  So hopefully it shows us some answers either way - we just want to know if the tremors are seizure related, or, if they are just Meagan's "norm."  Just knowing the information will make us so much more at ease when we do take her home.


The second area of concern is Meagan's shunt site.  The incision looks good - her head circumference is going down pretty well.  It doesn't seem to be draining too fast (which we don't want either)... it will go down a little, plateau for a few days, and then go down again and repeat the pattern.  However, she has a large pocket of fluid gathering around her shunt site.  We asked the Neuro about this last week, and he said that is completely normal in some cases because of the amount of fluid trying to leave Meagan's head. He also said because of the way she is laying, it may gather there for a while before draining.  We were fine with that, but, in the last 2 days, the site has also suddenly decided to get red.  At first it was just pink and we thought maybe she had been laid on that side by accident ..etc.. but then yesterday and today it looks much redder.  We got the on-call Neuro down tonight to look at it because we know the risk of infection is very high in the first few weeks especially - he seemed to think it could be residual bruising from the surgery.. but.. because of the poofiness and the warmth, he suggested we keep a close eye on it.  Meagan's regular Neuro, whom we love and really trust, will be doing rounds early in the morning, so he will look at it and let us know what he thinks.  If he has the same conclusion, I'm fine with that and we will watch it - but, if he says something different we'll definitely take it to heart because we trust his opinion. 

Meagan's shunt site.. it's become quite pink/red over the last two days. We're watching it closely along with her doctors and Neuro.

Overall, she's doing well - but these new worries pop up and it seems to "set us back" mentally.  But we know from talking to other Hydro families, this is just Hydrocephalus.  This is just how it is to be a Hydro parent because one day everything can be fine, and the next you can be staring a huge problem, setback, or concern right in the face.  I'm sure this is the first of many worries we will experience with Meagan. But, we also know she has great people around her trying to help and working to make her life the best, healthiest and fullest possible - so we are very grateful for that!

We'll keep everyone posted once we know more about our new concerns. But for now, we're just trying to stay on top of them and be pro-active so we stop problems before they start.

We love spending everyday with her. She is starting to have more awake times.  She used to sleep all the time or possibly open one eye for 2 seconds. As of yesterday, she's starting to have 3-5 minute time periods later in the day where she wakes up for a little bit and actually "listens" to us while we talk to her. That is very good to see! She has gorgeous eyes and the tiniest, daintiest little face. I could just sit with her 24/7 and stare at her beauty!

I thank God for her everyday! I cannot imagine our lives without her - and she isn't even home yet!

Lookin at Mama before we left tonight :(

Snuggler!

Let's keep the winning streak going!

Today we decided to have a "date" with our older four girls and take them to a playground and then lunch.  We had fun - it was a gorgeous, breezy, Fall day and the playground was the perfect place to spend some time.  We enjoyed lunch with the girls too and then headed home to leave them with Brian's mom so we could still make it down to Children's.

One of Meagan's biggest hurdles the last few days has been her feeding.  She has been having a lot of residual being pulled from her feeds, almost to the point where she wasn't really digesting any of the milk.  They have her on a continuous feed through her tube because of this -only 20ccs over every hour - but even today they were pulling 26+ccs from her feeds again.  The NICU doctor told the Nurse to turn down her volume to 15ccs and see how she did with less volume.  Well, when they pulled the residuals, they were up to 38ccs!!

Luckily, the NICU doctor seems pretty pro-active.  She said obviously with the higher residual pulls, Meagan wasn't improving on her own with time.   She prescribed Reglan and told them to give it to her before each syringe of milk is put into the tube.  They did a residual pull a few hours into the new plan - only 14ccs!! So they decided to continue this regimen, and tonight when they pulled residuals, it was all the way down to 4ccs!! FINALLY she was digesting more milk than before - so this is a great sign.  The doctor said if she keeps having great residual pulls with the Reglan, then the next goal tomorrow is to up the volume of milk she takes in - and see if she can still keep those residual numbers low.  So that's where we are now with feedings - a lot of progress today and hopefully the Reglan continues to help Meagan with her digestion.

Her oxygen levels were also turned down again today.  The RT (respiratory therapist) that worked with Meagan tonight told us that he'd even be ok with turning it down more if she's doing well in the morning.... so we are doing very well with the O2 levels and weaning her off of them.

The other issue is now her shunt.  The Neurosurgeon came by today to look at her shunt area.  Yesterday, he'd been concerned because of fluid gathering near the shunt site.  He said that this is ok to a point in normal fluid/shunt adjustments... the fluid will hopefully just be also filtered out by the shunt at some point.  His concern was because her fluid pocket was much larger today.  The good news is that her head circumference continues to go down.  Today it was down to 45cm.  The Neuro said because of the head circumference shrinking, he just wants to watch the shunt site for now -- it seems to be functioning ok, so the fluid pocket may just be how she is handling the shift of fluid in her head.  He said if it's still getting bigger in the next day or two, he may have a head scan done so he can see more detail of how things are functioning.  If not, then we just watch it and it will probably be ok. He said he's never had a shunted patient have a pocket as puffy as hers is.  Honestly, I"m not that upset or shocked.  To be upset at a device that already has a 50% failure rate as it is would be a waste of my time. It's just a wait and see situation - and we are pretty used to that by now after going through the Hydro pregnancy! So we'll see what happens.. I am confident it'll all work out.

We stayed late tonight since we came in at a later hour.  Meagan had a lot of awake time suddenly.  She was looking around, looking at me, and really taking everything in.  She fussed when I'd shift my arm, or when beeps would go off from her little baby neighbor in the pod next to hers..etc.  It was the most awake and alert I've seen her.  I also noticed when she had her eyes open tonight that for the first time ever, she had an eyelid.  Ok, of course she always had eyelids - BUT - the pressure in her head was so strong that it made her eyes poofy and swollen - and so the eyelids and skin all around her eyes was very swollen.  Tonight, her right eye, when closed, actually had an eyelid! It was nice and relaxed and so cute... seems like a little thing - but - it was great to see because it was a sign to me that her pressure was being relieved.

Overall, Meagan had a great day... If we can just keep her on a good track of digesting her food, and be able to increase how much she eats, then I think she'll be on a good upward swing.  Of course, the Neuro (and Brian and myself) will be watching that shunt site - but - that's pretty much out of our control... whether it fixes itself, or whether she needs some sort of help to fix it - so we may as well just think positively and count on it resolving itself. 

When we got home, Brian's mom gave us a note Reilly had written to us -- it was the sweetest thing ever.  I know she feels a lot of the stress - not just because she is the oldest, but, also because she is a perfectionist and probably feels "responsible" in many ways for what is going on at home while we are away. (ie: keeping her sisters in line, playing nicely, helping Grandma, taking care of her own hygeine, etc.. that she's able to do by herself..etc.).  Her letter was the cutest thing ever - she said she missed us, and wished she could talk to us.  Her biggest questions, though, were about Meagan coming home. Even though she "gets" that Meagan is "sick" (word we used because she won't understand all the other terminology), she still doesn't understand why Meagan isn't home.. as the days linger on, she becomes more impatient.  We had also planned to take her to see Meagan, but, she is now sick so we can't take her.  So I know the fact she can't even see her weighs heavily on her worries. 

Let's keep it goin Meagan! You have 4 big sisters waiting for you at home...  !!!!!!

Sound asleep on Mommy

Loving the hat from Aunt Jennie

3 of our 4 older girls made Meagan some artwork for her NICU pod.

Meagan really loved sucking on her Paci tonight all of a sudden. I love it!

She had several minutes of awake time tonight! We had so much fun talking to her and looking at her beautiful eyes!



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

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!

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

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! :)