Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, October 30, 2011

And So It Begins...

We had a very busy week for Meagan's first week home. She had her first string of follow up appointments begin .

First she saw the Pediatrician. The doctor did a weight check, and other basic check-up tasks.  There were 2 nurses who had never seen a shunted baby.  The doctor asked me if it would be ok for them to come see her.  I said I was fine with it ...  the more people know about Hydro ... the better for our Hydro kids in the future. According to the Pediatrician, there are kids at the practice with acquired Hydro, but Meagan is the first congenital case for them.  We told the doctor about pulling the feeding tube, and she was also supportive.

We had to also see the GI doctor .  He said also that pulling her tube was the best thing we could have done.  He told me he likes the tube for supplementation in vigorous eaters who simply tire out quickly. He said cases like Meagan's, where the baby starts to eat but is a more slow or lazy at eating, he really views the tube as more of a hinderence because it enables that eating attitude.  He said a baby with Meagan's eating pattern, he would have liked to see her tube pulled as soon as she started to have that interest in the bottle.  He told me she looked great and would be discharged from his care. One less doctor we have to see!

The only other doctor Meagan saw this week was her eye doctor.  The doctor looked at the nerves behind Meagan's eyes and said they were shorter than normal. She said it's just something to watch as it could affect her vision.  Meagan is also not tracking with her eyes yet. It seems she isn't having fluid eye function.   The easiest way to describe it is she will look 'towards' me but will not look 'at' me - her eyes wander and often times she just stares. I can tell she hears me and wants to look at me because she will become , alert and pause her activity...but it's like her eyes can't 'find' me.  So just another thing we have to watch and see how it pans out.  I hope she at least has some sort o vision.

That's all for now.  We head to Duke this weekend!  So excited to see our little girl helped by the great doctors there who are actually reaching out and advocating for our Hydro kids.

Tuesday, October 25, 2011

Wake Up Call

The first few days at home were blissful - finally having my family together, enjoying time with Meagan whenever I wanted to, getting into our own schedule.  But day 2 brought a very big surprise that made us all even happier than we were already!

The second night came just like the first - very routine.  Meagan had her 6pm bottle - did a great job with it.  We hooked up her feeding tube at 9pm to start her 10 hour drip feed... just as we did the night before.. and just as the NICU had done for her the 4 nights before she came home.  We laid Meagan in bed, organized all her tubes, wires from the monitor, and propped her blankets to support her head.  Brian flipped on the TV, as we often do, to watch some "mindless" shows and drift off to sleep.  Well, Meagan had other plans.

Soon after we put her down to bed, Meagan became very fussy.  I changed her diaper, offered her a pacifier, rubbed her back, changed her position, swaddled her, unswaddled her, etc.. I tried about everything in the book and she still would not calm down.  She was not aggitated, like when her shunt had previously malfunctioned in the NICU ... this was hands down the "typical" newborn hungry cry.  "How could she be hungry?" I thought. She had the drip feed going and she'd been satisfied every night.  I finally put my finger near her mouth to see if she'd suck on it since she kept spitting out the pacifier and was still crying.  She sucked a little bit, and then she just 'took off' ... she was sucking so hard, she was crying in between.  I called over to Brian and said "Brian, I think she's hungry. This sounds JUST like the other girls when they were hungry. And she's going to town on my finger." ....

So I did the only thing I knew to do since nothing else had calmed her.  I picked her up, and put her up to nurse.  Meagan latched RIGHT on! She ate for about ten minutes, then was calm, and fell asleep.  I was so elated!! But I was also cautious - so many ups had ultimately led to so many let downs.  I was at least thankful we had those 10 minutes... 10 minutes of a normal mommy and baby relationship. It was the best feeling ever.  I laid Meagan back in her crib, hooked up her monitors again, and I, too, went back to bed and fell asleep.

I woke up to Meagan's crying a little after midnight.  This was unusual, especially on the drip feed because she was always fed, and had always been calm for so many nights on this schedule.  As I listened, I realized it was the same cry - the very tell tale hungry cry any baby under 8 weeks old will do when they want to eat.  I thought.. "Could she be waking to eat now? Finally? After so many weeks of sleeping through feedings?" I didn't hesitate. I picked her up, unhooked her monitors, and put her up to nurse again. I was nervous she wouldn't do it again - meaning the first time was just a fluke.  But to my surprise, she went right on again and nursed for about 15 minutes! I was so happy - I felt deep down in my gut this was a turn of events for Meagan. That in no time, she'd be eating without that tube.

The next morning, I woke up first.  Meagan was sleeping soundly -- we had to get the older girls to school, so we quickly got up and started to get things ready.  Meagan started to stir, and was looking around.  She started to smack her lips and root around in her crib, so I picked her up and she nursed again! I told Brian this time, and said "Brian, I think she's eating on her own now!" Brian was so happy - so we decided that as soon as the GI doctor's office opened, I would call and figure out how to wean down on feedings to get Meagan off her feeding tube at night. 

Well, that was the original plan.  Meagan continued to eat well throughout the rest of the day. She even downed a few full 60cc bottles which I had offered her just to be "sure" she was really eating well since I couldn't measure what she nursed. Every 2-3 hours, she would fuss, cry, root... just like my other babies had done when they needed to eat.  The GI doctor still hadn't called me back, but she was eating so well, I just knew she didnt' need that tube anymore.  I told myself if she ate well at the next feeding, I was taking it out. Period. End of story.  Brian and I had to train in how to use all her feeding equipment to bring her home on a feeding tube - so worst case scenerio, if she ever backtracked or stopped eating, we knew how to place another tube, work the pump, etc.. 

It was about an hour before her first Pediatrician appointment, and I took Meagan upstairs to feed her again before we left.  She nursed like a champ.  Both sides, about 25 minutes total time.  I was so proud of her.  I held her up close to me on my shoulder as I patted her back to burp her and I whispered in her ear. I told her "Meagan... Mommy is so proud of you! I'm so happy you are eating now. You can do it. We can do it."  Then, I laid her on my bed in front of me, and in about 2 seconds, pulled out her feeding tube.  Brian came upstairs shortly after and I held up her tube and said "Hey honey, can you throw this thing in the trash?" We were finished with it. She was doing well - and she needed to continue to eat on her own without a tube in her throat.

The GI doctor did eventually call me back once we were already at the Pediatrician's office.  He'd been at a doctor appointment of his own so he couldn't get back to us as early as he normally would.  I told him what had been going on with her eating well and that I wanted her off the feeding tube.  He started to tell me about a plan we could do to wean her down at nighttime - and I had to politely interrupt and say "Well, Doctor, to be perfectly honest with you, I already pulled out her feeding tube." What came next? Awkward. Silence. I then heard the doctor speak up finally and say "Um... Oh! Oh ok! Hmmm, well we normally don't have parents who are comfortable enough to take the tubes out without consulting us on their feeding habits, but you know best!"  I was laughing a little bit inside at his immediate reaction - his voice was extremely surprised and shocked.  But, at the same time, I was so happy he was supportive of me in my decision.  Further into our conversation, he seemed to have no problem with what I'd done.  He knew we could read her cues the best, and said we would just monitor her with weight checks to make sure she was getting her proper nutrition and calories.  So that was that!
 (To clarify, normally, a healthy breastfed baby would not be monitored for weight gain/calories..etc.. If they eat, and look healthy, we assume all is well and they are getting everything they need   In Meagan's case, because of where her shunt was placed, they do try to track calories and "pack" as much food into her as possible.  The skin around her shunt site is SO thin, they want her to bulk up calories as quickly as possible to prevent any injury, infection, or easy access to 'bump' it around.  This is why she will still see her GI doctor as she grows in these early weeks).

In 2 days, Meagan did more with her eating than she'd done in over a week.  She did need that tube before then - she was so tired, weak, and hurting from her surgery and her fluid pressure. But the NICU doctor we liked so much was right! She had told us one day, Meagan would just "wake up" and do what she was supposed to do with her eating. And on October 21st, at 12:14am, Meagan did just that - gave us her wake up call that she was ready to conquer eating all on her own.

Passed out her first night without her feeding tube.

Learning to tag along for all our carpool trips everyday

Loves to snuggle

The only way she will sleep soundly - with us in bed, in this little SnuggleNest.  She sleeps well but has periods of fussiness - and all we have to do is put our hand on her, and she's comfy again. So this makes it easier on all of us.  After 4 cold weeks in the NICU, I can't blame her! I'd want to sleep near people too! 

Already praying? 

Thursday, October 20, 2011

There's No Place Like Home!

October 19th will always hold a special place in our hearts - it's when our baby girl came HOME!

Meagan was discharged from the NICU!! The Neonatologist we've been working closely with there was very efficient at getting all our paperwork together and getting things moving.  We went there on our "normal" schedule (normally we'd be at the NICU from 9am to 6:30pm everyday). We thought we'd go hang out with Meagan and then by the time she got discharged, we'd at least be with her.  Well, to our surprise, we were driving home before noon!

It was a very overwhelming experience to a point because we left with a LOT of stuff.  We had all her feeding supplies, her pump, her apnea monitor, all the things they couldn't reuse with other babies (wipes, gauze, syringes, etc..), my cooler full of frozen milk they had stored for me, her blankies, clothes, etc.. the list goes on and on! Brian loaded up the wagon and we waited for the nurses to complete the discharge orders.  The NICU doctor signed off on us early, which was very nice.  He stopped by and said he was going to go ahead and sign everything so the nurses could to ahead and push us out the door. :)  The nurse worked hard to get everything completed correctly, but quickly.  She gave us all the phone numbers for Meagan's follow up doctors and had me start making appointments while she worked on feeding instructions. 

The follow up appointments added to a little of the overwhelming factor of the day! In the next two weeks, Meagan has follow ups with 6 different doctors - Pediatrician, Eye doctor, Hearing doctor, GI doctor, Neurologist and Neurosurgeon. Whew! This doesn't even include the therapists (Occupational, Physical, Speech, and Vision) that will be contacting us to set up home appointments.  I know this is just life now for us! I'm not too nervous about fitting everything in - to be quite honest, I'm more organized now with 5 children than I ever was with just 2.  I'm more anxious to get everything going so we can get into a groove with our new life. 

Some other good news is that Meagan got her date set to go to Duke for the Hydrocephalus study! She is going up in early November, and we are forever grateful to the other Hydro families who first let us know about this study.  We feel it will give Meagan every chance at the best development possible... while at the same time, hopefully helping future Hydro babies with the research Duke will gather from our families.  I'm so excited to get there and give her something back that may help her down the road!

Meagan settled in well when we got home.  She was pretty calm and actually slept soundly the WHOLE day.  I had to really wake her up for feedings, and at each bottle feed, she didn't take that much - maybe 20-30ccs total.  We successfully had our first tube feedings at home to give her the rest, so I felt much more comfortable using her pump and feeding bags/tubes once I did it a few times on my own.  I'm sure she was so tired from the travel and just the change in environment.  The hospital, while necessary for a time, is really a hinderence after a while.  It's not cozy and not comfortable for anyone.  So I can only imagine last night the relief Meagan must have felt being in her own home.. listening to us talking, her sisters playing and giggling (and yes, sometimes fighting), the TV here and there, the dog barking, and cars driving by outside.  Yes, noisy, but, all NORMAL noise.  It must have felt so good instead of all the alarms, beeps, and buzzers that would constantly be going off at the NICU.

Her first night home went great.  We all had dinner as a family.  A fellow family from our parish who brought us dinner was nice enough to make Meagan a welcome home cake - so we all had that for dessert. YUM.  The girls couldn't get enough of their sister. They were holding her hands, touching her feet, gently rubbing her forehead.  They were looking at her shunt area, her fluid pocket, her belly stitches.... examining her all over, and asking 500 questions out of curiosity.  But most of all, they were just SO proud. They were so proud of themselves for having this new little baby that made being a "big sister" new all over again.  The older girls printed off pictures of themselves with Meagan to take to school, and the little ones just keep loving on her and entertaining her.  I think the therapists at the hospital were right when they said Meagan's big sisters will be GREAT therapists at home. :)

Meagan also did great sleeping her first night in her crib.  We have her set up next to our bed so we can keep tabs on her apnea monitor and her feeding pump.  She is on a continuous feeding drip at night for 10 hours - so she can sleep through and gain her strength to build up those daytime feeds.  I still have to get up, though, at the 5 hour mark (around 2am) to add more milk to her drip because the milk can't sit in the feeding bag for more than 5 hours at a time.  So it's great Meagan can sleep through and get her rest - but Mama is still getting up. Go figure ...  The rest must be helping her.. or a combination of that and being home because for the FIRST time EVER, Meagan finished her 9am bottle - ALL 60ccs!! And she did it in about 10 minutes.  So I'm hoping this is the start of a new trend for her.  Even if she doesn't do it again today, we'll take it once a day! One bottle at a time, one feeding at a time, one day at a time.

Overall, it was a great day.  And her finishing that bottle this morning told me that she is only going to grow and get stronger.  Sure, life will have bumps as we deal with her ups and downs as she grows - but - we are extremely happy she's HOME, right where she belongs.  She's surrounded with a comfy home, lots of love, 2 parents, 4 big sisters, and a goofy old Labrador.  And this is the best place for any baby to be - but especially one like Meagan because while her future is still up in the air, her purpose is not. She was meant to be.. and meant to be in this family.  We love you Meagan Theresa... Welcome Home.  The journey begins!!

One sneaky picture in between changing out her feeding tubes. Hopefully in the near future, all our pictures can be without her tube!

Bye Bye NICU Bed 23!! Going HOME!

All ready for her ride home!

Maura is a big sister for the first time. She loves her new baby sister!

All of my girls together at last!!!

Reilly meets her littlest sister!

Kaitlin meets Meagan (who looks JUST like her but with brown hair!)

Anna and Maura can't get enough of Meagan!

Dudley already standing guard! 

The 4 older girls will always be protective of our little miracle!!!

Monday, October 17, 2011

The longest checklist ever!

I write this post with restrained excitement... we have been told that Wednesday is 'probably' the day we'll be taking Meagan home!! I say restrained because in the NICU, anything can change.... so until we are IN the car driving away on Wednesday, I'm holding my breath just a little bit.

Brian and I knocked out all our tasks we needed to complete for discharge - CPR class, videos, placing Meagan's NG tube in by ourselves, learning how to check for placement of her tube, contacting the Pediatrician... in the meantime, Meagan has been doing her part too! She passed her carseat test, she is eating consistently on bottles now four times a day (not the full amount, but at least she's sucking!).  She also seems to be happy, content, and a much more alert baby. 

We had our instruction today with the medical equipment reps.  They showed us Meagan's feeding pump - how to use it, program it, and how to take it with us in the special backpack when we are out and about.  I laughed because I told them our pump would probably LIVE in the backpack most of the time - with 4 kids, I'm rarely just "housebound" :)  It all seemed very simple and user friendly... but I'm still a little nervous about it all. The funny thing is, I've found I'm more comfortable with actually placing Meagan's feeding tube in her nose than I am with the equipment. Haha.. I know it'll be fine - and I do remember what to do. I just need to get her home into our routine, and then I know I won't even think twice about the extra equipment we need.

The doctors are very positive with her now - saying she'll do a lot better at home. The GI doctor came by and introduced himself too. Since Meagan has a feeding tube, he'll have to follow her so he can aid in any feeding issues we may have, and, when she starts to gain strength and take more ounces per bottle, he will help us change her tube feeds so we can give more bottles and less tube feedings.  We also met with the social worker who is going to get Meagan registered for the Babies Can't Wait program so she gets all her proper therapies in our home after she is discharged. 

The best news today was that Duke contacted me and they'd like Meagan to come Nov. 1st for her first cord blood infusion! We are very excited.. kind of "bad" timing being that Halloween is the night before and we don't want the other 4 kids to miss out - however, I think we have a good compromise worked out where we'll stay with some family who lives near Duke. . and when we take Meagan up to the hospital, the kids will stay behind and be taken out to Trick or Treat with the family.  It will all work out for everyone.

That's about all the "news" for now -- everything is very "up in the air" as we wait on pins and needles for Wednesday to come.  I pray the next post I write is about us coming HOME!

BIG yawn!

I think she's gonna have a great sense of humor after her facial expression in this photo.

Sweet girl.. so beautiful and *almost* home!

Saturday, October 15, 2011

A Mirage in the Desert...

Today Meagan is 3 weeks old.  I cannot believe she is creeping up on a month already.  Time has flown by and stood still all at the same time. The last few days in particular have been extremely busy for Miss Meagan.  We have had several changes and a lot of good news. I'm always afraid to talk about the good news because then it seems a setback immediately follows.  But I have to be extremely proud of Meagan and every little tiny thing she does... so I'm going to cautiously say we have had a 'good' last few days.  Ever since her shunt re-program, she has been like a new baby... and like her old 'self' again.  She has more alert times, she seems to "communicate" with us more with her eyes, and when she sleeps she seems more restful.  Her head itself seems so much "healthier" and the fluid pocket had almost completely disappeared. 

Tuesday night was perhaps the best night since Meagan's birth.  Every feeding, I had been at least working with Meagan to stimulate her mouth and let her try to suck on my finger.  Suddenly, at her 6pm feeding that night, she started to suck on my finger.  I manipulated it a bit and she still seemed interested. This was HUGE.  She had literally NO suck for almost the whole two weeks before!  I excitedly called over to Brian who was sitting next to me and asked him to get just the nipple from the bottle.  I put my finger in the bottle nipple and continued to work with her sucking ... when she had a few good sucks, we asked the nurse to put milk in the bottle.  And Meagan took down 10ccs of milk! I was ELATED.  This was the first time she'd shown not only an interest, but normal physical signs of newborn eating.  We worked with the speech therapist a little bit because I knew Meagan did NOT like the hospital bottles. They are so skinny, and it's not natural for a baby to suck on a small nipple.  After experimenting with a few different bottles, we found that a firmer nipple works best for her - but one that is wide like nursing. I asked a close friend for any suggestions on a wide firm bottle.. I had Playtex and Avent ones from the other girls, but they didn't seem right for Meagan.  My friend suggested trying a newer brand called "Tommy Tippies."  She said she'd heard of them being really good for babies with feeding or oral issues.  I went ahead and picked one up from the store - at this point, with her finally showing interest, we were going to try anything! And sure enough - she loves this bottle!

The next two days, Meagan continued to show great effort at feeding.  She sucked well and took about 20ccs of milk when we attempted with the new bottle! (An ounce is 30ccs).  The doctor said I could put her to breast as many times as I wanted, but we could only bottle feed every other feeding.  Meagan just canNOT latch on to me - she needs the firmness of the bottle because she has very poor muscle tone in her jaw and mouth, and now that she's taken some milk, I don't want to change things up for her. And now she is finally showing patterned success with this bottle - we are progressing and I want it to keep going. However, I was rather perturbed the doctor told me only every other feeding. Why? Their answer: "So she doesn't get stressed out."  Ok, I get it... but... if anyone wants her to stay calm so we can get her home, it's ME! I would never do anything to "stress out" Meagan with feeding, especially since we are finally making strides with her sucking. But if the poor kid is waking up, smacking her lips, and trying to suck on my finger at each feeding, why shouldn't I try a bottle with her EVERY time? I brought up this point with the doctor today - I bluntly told her that I personally felt if Meagan was showing interest at a feed, I should be offering her a bottle rather than just letting her tube feed.  I told her I am the one at my daughter's bedside 8+ hours a day - and I know her better than anyone.  I also have 4 other children, and I know how to follow a baby's cues whether they are tired, irritated, or willing to try something new.  The doctor gave in to what I wanted and so tomorrow, orders will be written that bottles are to be attempted at every feeding per Meagan's cues.  I was very happy to win that "battle" because I personally think, based on Meagan's behavior, she is absolutely ready to try bottles at every feeding.  It is the only way she will continue to associate her mouth with eating and build her strength to eventually eat the full amount of milk she needs. 

I talked to the doctor about the Klonapin as well.  I reached the point of being very uncomfortable with Meagan on this medication.  She had been absolutely fine for almost 2 weeks without it... and I wasn't sure how much of her lethargy and lack of feeding was due to the side effects of the medicine.  It is a fairly strong drug, and although she was on an extremely low dose, in hindsight, her one day of aggitation (which was why she was put on the Klonapin), was almost 99% due to her shunt back up.  I asked the doctor if we could start weaning her off of it and just see how she did.  If she reached a point of agitation again, then we would have found a comfortable level of the medication.. but if she did fine, I wanted her completely off.  As long as she was happy, had content behavior, and was showing signs of eating, there was no need, in my mind, to keep medicating her so heavily.  The doctor agreed with me, and reduced her dose by 25% that day.  She is due to reduce it by another 25% tomorrow if all still looks good with Meagan's mood and eating. 

Sometimes I wonder if it is doing any good to sit in the NICU for 8 hours a day - as we've done for the majority of the last 3 weeks.  We obviously lose that time with our 4 other children, and it is daunting to sit there through every second of ups and downs with Meagan throughout the day.  However, I think that it is extremely necessary.  Every milestone she has made is because we have been there pushing her.  Every time she has been alert, she has had someone to talk to her because we are there.  Every time she has a basic need, and the nurses are too busy with another baby, she gets her diaper changed, or gets her paci because we are there with her.  This is imperative to her recovery.  There comes a point when your baby is "ok" and doesn't need "emergency care" anymore.. but they aren't quite ready to go home.  It is very easy to get lost in the shuffle during this time.  This is where it pays off to be pushy. 

Now to clarify, I have had no issues with the nurses and doctors at Children's.  They are all wonderful, have great bedside manner, and listen to all questions we have.  However, in this "limbo" period, it is easy to get overlooked. It is easy for things not to happen as aggresively as they could (ie: attempting the bottle at every feeding if Meagan is interested).  Because of this, over the last few days, we have to be very staunch parents.  We have to ask questions, push back on things we think we know better, and demand things we do know better.  So far, this has paid off as far as making strides in the doctors' orders, or in things we want to try with Meagan.  The medical staff has provided (and will continue to provide) excellent medical care, but ultimately Brian and I are Meagan's parents... and we have to do what we feel is right for her.

Today, we had a conversation with the doctor that involved a word we have not heard up until this point - HOME.  The doctor said now with Meagan consistently taking 20 ccs, we'll go ahead and make a plan to go home.  She has to take 60ccs per feeding for her to be released without a feeding tube.  Now, do I think she will suddenly start to take such a large volume of milk? I doubt it... I know she can do it! But, I doubt that it will happen in the next few days.  So we are going to be educated on how to handle an NG (through the nose) feeding tube and work out over the next 4-5 days how much Meagan will eat so we know how much will need to be supplemented through the tube.  We will have to do her carseat test... someone will also come bedside to show us how to prop her head up safely in her carseat.  Because she will probably come home on the feeding tube, she will also have to have an apnea monitor.  We will also have to keep watching that fluid pocket, and shunt site... but that's something we'll have to do her whole life anyway. 

While it was exciting to make a tenative plan for Meagan's homecoming, it was also a little unnerving.  I'm conditioned now to moving forward, and then getting setback.  It makes me highly cautious of our "take home" goal.  I have this fear that it will almost arrive, and then something will happen where we are stuck in the NICU even longer.  I have to keep remembering to be proud of every milestone Meagan does accomplish on her own.  And pray, pray, pray that her homecoming is in fact going to happen next week.

Looking back on our journey so far, it seems to me that having a child with Hydrocephalus is like walking through a desert.  Sometimes, we get lucky, we find water, we find life and normalcy.. but all too often, the Hydro monster throws us a mirage in the desert.  I pray that next week Meagan is truly home with us... and we are hydrated with our love for her and the comfort of having her at home with her family.  I pray that the homecoming talk does not end up being that mirage in the desert, propelling us backwards yet again.

 Daddy's Girl

So alert again!

Finally meeting her Godmother, Aunt Christine (Bean)!

Relaxing with Uncle Nick

Checking out the picture of her sisters we hung in her crib.

The nurse put a toy in Meagan's crib to try and tempt her to turn her head the other way. 

Yummmy.... fingers!

Sound asleep - LOVES her belly!

Monday, October 10, 2011

Our Plan Isn't Always "The" Plan

A lot happened to day at the hospital -- some good, some frustrating. But again, that's life right now.  The good news is that Meagan is tolerating all her feedings well now - she is proving that she doesn't need that motility agent anymore and Meagan is now down to normal feeds - 2 ounces every 3 hours. No more continuous feeds.

The other good things were her test results.  Her CMV  test came back negative in her blood, so the Infectious Disease doctor said she won't see us anymore.. which is a good thing. Also, Meagan's new blood and urine cultures were negative for any sort of residual infection. The doctors therefore took her off of the antibiotic this afternoon.

 She is still on a low dose of Klonopin - a medication used to treat seizures or panic disorders. In her case right now, it's used for the latter - she's been so incredibly irritable and inconsoleable over the weekend, they started her on a twice a day dose.  It helps to take the "edge off," and calms her so when we do need to do things like work on feedings, we actually have a chance instead of her freaking out and us losing the opportunity to work on her feeds.

Will it come back? This is the question I found myself asking today regarding Meagan's sucking ability.  There is still absolutely zero sign of her wanting to, or being able to suck. At. All.  She took down bottles - even 36ccs (over 2 ounces) before her surgery.. and now, nothing. She will 'root' around and act hungry - but there is no follow through with her oral skills.  I know there is a lot going on in her head and in her little world - so I'm hopeful that one day she'll just "wake up" and start to suck again. Watching her while the speech therapist works with her on eating, or myself, is hard because of course we want so badly for her to just start sucking on the bottle, the pacifier, or me ... even if she only sucked for 10 seconds, it would be progress and she could build from there..but there is absolutley no sign of that at this point.  The speech therapist has worked with her, as have I.. and there is no learning curve on Meagan's part as of yet on the sucking.  So we will see what happens this week. 

Meagan did get her shunt re-programmed.  Since Thursday, her head circumference has been creeping up .. along with watching that fluid pocket, and her lethargic and fussy behaviors,  her NSG decided today to re-program the shunt and see if that helped. We will re-evaluate on Friday unless other issues come up in the meantime.  Hopefully this adjustment of the shunt does help and she becomes a bit more alert and gets her feeding skills back.  I'm hopeful that her shunt was the problem and the new setting will help her regain her sucking ability and personality. 

The nurse did already start to show us a little bit about Meagan's NG tube today and the doctor went over the other option, the G tube, with us as well.  We'll know more about our "coming home "plans next weekend, when we can sit down with Speech and the doctor and re-evaluate what Meagan has or hasn't progressed on as far as her sucking goes.  I don't want to rush her at all - but - I also don't want to prolong her stay in the NICU if it becomes evident her oral skills are just "not there" right now.  There is a lot to be said for her being home with my nurturing and just being in the normal routine of our family.  And who knows.. maybe that's the little change and relaxation she needs to have a lightbulb go off and start to suck.  As tough as it is for me to see her struggle with this, I do have hope she'll relearn somehow.. and I am just still incredibly grateful she's here, and alive, and with our family.  That is what really matters.

Holdin hands


Sweet baby.. I'm praying you start feeding on your own soon!

Sunday, October 9, 2011

Calmer for Meagan.. more Stormy for Mama

I headed over to Children's later today than usual.  I went to 9am Mass this morning and then brought the kids donuts afterwards.  I did some things around the house (laundry, diapers, dishes, vacuuming, etc..) and then got ready to go.
 When I arrived, Meagan was fussing ...I picked her up and held her. Within seconds she was rooting around and snorting at me just like my other babies when they were hungry.  I went ahead and put her to the breast and she immediately calmed.  She latched on 'ok' to me but she didn't eat. She just sat there all comfortable and ended up dozing on and off ...  I was hoping she'd just "get it" and suck at least a little, but, she didn't.. I was happy, though, that she was just laying there on me  -- at least she's 'getting to know' me, and it's good for my milk supply. Also, the more familiar she becomes just doing this, then hopefully one day she will begin to suck and actually get some milk for herself. 
The Nurse said that the speech therapist had been by earlier and tried the bottle with her, but to no avail.  She said Meagan absolutely screamed when she was working with the bottle.. .  If she would just remember how to suck, I think she'd be a great nurser! So I'm still holding out hope that nursing is the direction she'll eventually head - it seems that way for now especially with how calm she is at the breast compared to the bottle. I'm getting to the point where I'm very frustrated with their approach.  Meagan completely freaks out at the bottle - and is calm with me - yet Speech continues to insist on trying the bottle.  Tomorrow, I'm going in there back to my old "pushy" self -- I'm going to insist the Lactation Consultant come work with us to help Meagan nurse - at least she's calm and not freaking out - which is a pretty good goal when a baby is trying to feed. No baby feeds well when they are stressed out - and in her case, she isn't even sucking yet, so I want her as calm as possible so we can try to help her remember. 

I am a bit worried about the sucking. She downed bottles the weekend before her surgery - even up to 36ccs!  Since surtery, there has been no real attempt at sucking at all. She will sit on me ok because I think I just fill her up more when she's rooting around versus the tiny bottle nipple they offer to her.  But no sucking - on the bottle or me.  She does chew on her paci - but what we've noticed over the last few days is she's not sucking on it at all - she's chewing.. not using her tongue.  I'm going to attempt two requests: Work on the nursing - she seems more comfy with me anyway... and also if they are going to try a bottle, use a wider nipple. The little tiny thing they are trying to give her is SO unnatural.. if they don't have any there, then I'll bring in my Playtex wide nipples to use -- at least it's more similar to me, which, is what she has obviously shown comforts her.  I do wonder though if she'll ever remember how to suck - she definitely roots around and opens her mouth wide - but there is NO closing of her mouth.. no latching on to me or a bottle with her tongue/lips.. anything. It's like she completely forgot from two weekends ago - and sucking is such an instinctual behavior of babies, that it's raising my concerns.  I guess we'll see what they say tomorrow -- if she shows ANY sort of progress - even sucking for only 10 seconds.. I'm willing to wait and see what she does. But if we are already at the end of next week - and she is still not sucking at all, they'd better start talking about Plan B .. because I will not sit by while she sits in the NICU another week or month just to learn how to suck.  Therapists can come to the home to do that - and she doesn't need to be barred from the daily connection with her mother for this reason if we are still in the same place 10 days from now.  Having more nurturing at home with me will probably enable her to do more with it than laying in the NICU being relatively ignored.

I also found out that apparently, at least one of the 'irritants' to Miss Meagan has been a UTI.  Her urine came back positive, so, I'm glad they started antibiotics already over a day ago.  They did retest new urine, and if that comes back negative, they may discontinue the antibiotics then over the next 48 hours.  If it's still positive, then they'll lay out a plan as far as how many days she should get the treatment..etc..  At least it was one answer as to what could have possibly been bothering here these last 3 days. 

They are watching the fluid pocket closely on her shunt site.. they say it is fine for now, but, something deep down tells me that there is something "up" with the shunt.  Her head circumference came down nicely over the last two weeks... and for the last 6 days it's hovered around 44cm.. going back and forth each day to 43 or 44.  But then over the last two days, we've had our first consecutive set of rises - where it hasn't gone down before going up again. Soo, I am cautious watching those numbers and gauging what they mean paired with her 'off' behavior..etc.  I'm hoping it's nothing to do with the shunt because I don't want to start from Square 1... but.. if it is, then I hope something tips them off as soon as possible so we can take care of the situation efficiently.

The fluid pocket we're watching

Feelin a little better today

Crazy hair!

I was showing our 2 year old pictures of Meagan on the computer... she snuggled the computer and said "Night night baby."  So cute!

What Goes Up.. Must Come Down....Must Go Back Up?

There is definitely no truer statement for a parent who has a child in the NICU.  You will have a day that seems great, and then the next two are awful. Then there will be three great days.. and then a setback the fourth. It's just the nature of the beast... and any other issues on top of it certainly don't help.

When we went to see Meagan yesterday, we came later than usual of course from taking the older girls to the Zoo all morning.  The Nurse told us poor Meagan had been inconsoleable all morning. She said they had tried everything - diaper change, making sure her feedings were filling her belly, re-positioning her, holding her, rocking her..etc.. and nothing would calm her down.  After 3 hours of trying different things, the nurses finally called the doctor.  The doctor came down to look at her - all physical things looked ok, but, apparently Meagan was screaming even for the doctor.  She put her on a semi-sedative in a low dose to help take the edge off of her mood and calm her down - the last thing we want is Meagan getting so worked up that she is stressing out her body, burning too many calories, or, is so unhappy that we can't soothe her.  They also did start her on some antibiotics because her blood and urine cultures came back with positive growth.  The doctor said perhaps this is influencing her fussiness so we'll see what happens over the next few days.  The new blood and urine samples will be read Monday to see if they grew anything new.  If not, the meds would be stopped ... if so, then it's a good thing they were already started.  Either way, Meagan was NOT happy - and she was not herself. So they are treating her very conservatively, which I am happy about. The last thing I want is some lingering infection spreading to her shunt site ... and certainly as a mom, I don't want Meagan so sad. 

We tried feeding again - she didn't really take to it that well.  I'm sure a lot of it had to do with the fact that for "some" reason, she's just not feeling well.  The funny thing about Meagan is that she will open her mouth just fine - nice and wide - ready to eat. But once the food is there, she will not close her mouth to put a seal around the bottle or me, and suck to get milk.  This makes me laugh a little bit because with my other kids, we worked so hard to get them to OPEN their mouths - and now, it seems, Meagan has the opposite problem. The one good thing about the feedings is that through her feeding tube, they stopped the motility agent she was getting (a drug to help her digest her milk because she hadn't been doing it on her own)... and she is in fact digesting on her own now. So in all the negative of yesterday, that at least was one positive step for Megs.

As we enter week 3 of her being away from me, it's definitely starting to get old.  The back and forth and the wear and tear on me emotionally.  What mom has a baby and then just isn't with them? It's the strangest feeling. And there is no closure because you know the baby is 'out there' ... but just isn't physically home with you yet. (and thank God for that - that she is here with us).
 But sometimes, it's like I never even had a child.  There is no crib set up in my room... there are no baby cries.. no yelling at the older girls to stop touching the baby in some semi-dangerous fashion ... no baby clothes in the laundry.. her little cute cloth diapers are still sitting in the box waiting to be used.  But then I'll lean over to pick something up and sneeze and "Ow!".. my belly hurts and I remember my c/section incision is still healing .... or I'll be going about my business and suddenly I feel the milk "let-down" feeling and remember I'm still nourishing a new baby .... or I'll be putting dishes away while the girls color and then Reilly will bring me her picture .. on it she would have drawn our family.. and I see Brian, me, Dudley our lab, and then 5 little girls and an angel. (She never forgets Jack) ... and I remember.. oh yes, these girls of mine have another sweet baby sister who isn't home with us just yet. 

Don't get me wrong - it's not like I ever forget about Meagan - not one second.. I think about her constantly.. it's just such a weird feeling being her mother - but not really being able to be her mommy yet. And I want to be her mommy so badly, it really gets to me. But then something will happen that reminds me about others in the NICU who have it a lot worse.  I had one of these moments this past week.  Meagan's little baby neighbor almost crashed ... monitor alarms went off, and I immediately heard his nurse call for help.  It took the entire NICU staff and the team of NICU doctors being called down to bring that baby back.  I saw the mother in tears and the dad holding her.  It was such a poignant moment for me because it reminded me that I always need to remember those who are struggling even worse than I am.  I felt my gut sink for that family when the baby's alarms were going off... and it wasn't even my child.  When they finally got him stabilized, I remember walking by his pod on the way to go pump.. I happened to look over at his whiteboard ... on it was written "Name: Jackson (Jack)" .... It gave me pause for a moment.. I had never looked at his board before in the 2 weeks we have been neighbors in the NICU.  What are the chances of a little boy with that name being her NICU buddy... just amazing.

I realized this weekend, through all the ups and downs and the ups again, there is ALWAYS someone watching over us.  "Jack" is truly by Meagan's bed! Not in a way I ever thought of - but it was like a little sign that he is there, checking on his sister.  God is always with her, and I know that although sometimes I feel 'robbed' of this time with Meagan - she has an even more special gathering of people at her side. God, Padre Pio, St. Gianna, her brother Jack, and all her Guardian angels.  They may be doing more for Meagan right now than a mommy ever could -- and I just need to keep reminding myself of that.

Not feelin so great at all yesterday

I unwrapped her to change her diaper and she was sleeping so peacefully I had to take a picture of her

Holding Mama's hand for comfort

Saturday, October 8, 2011

14 days down

Happy 2 week Birthday Meagan!

The last few days have been quite busy.  Meagan was extremely fussy yesterday morning - she continued to be this way the first half of the day.  Now, she has cried at a diaper change, or other things that "disturb" her.. but even when she is having her therapy sessions, she would stay extremely calm and basically look around at everything going on.  But not yesterday.  Even when fed, cleaned, and not bothered, she was screaming! Of course, being a shunted baby, our first concern was something wrong with her shunt.  The Neuro came by to check it and thought it looked ok.  The nurse finally gave Meagan some Tylenol because she said it's all she could think of in case Meagan was having some pain.  Not even Brian holding her or me holding her would calm her down.  Then she had a small temp spike.  She has been 99 degrees since she came into the hospital.. but her temp went up to 99.8.  This, along with all the strange behavior prompted her NICU doctor to call for some blood and urine samples just to double check. 

Meagan finally calmed down around mid-day.  The speech therapist came back to work on her feedings with her - Meagan wanted NOTHING to do with it. She finally did take a few little sucks but nothing significant. She screamed and screamed.. so finally the therapist handed her to me.  I put her to the breast to try to calm her.  She amazingly did latch on .. she didn't drink though. She just laid there and calmed down and eventually fell asleep.  Although it was frustrating she didn't feed on her own, it was very comforting to know she would at least latch on to me and calmed herself finally. 

She also had her hearing test.  She passed in her left ear.. she failed in her right.  The audiologist re-did the test 3 times and got the same result each time.  She said while the type of hearing test she uses can be a good indicator for later and what to watch for, (the audiologist told me the hearing test she administered is like a mini EEG)  it can also mean that there is just too much fluid in that particular ear and she could test fine later.  Either way, we are ok... we figured we would get little "surprises" like this with her Hydrocephalus. So, another 'wait and see' situation -- we are supposed to bring her back before 3 months old so they can re-test the hearing and give us a more diagnositc answer. 

Not feelin too good yesterday!

Snuggling with Mama helped a little

Intense look 

Hearing test time - bringing back the 80s.

Today when we went back to see Meagan, she was much more calm... much more "herself."  On the way to the hospital, we got a call from her Neurosurgeon.  He had heard she had a rise in temperature and was very irritable the day before, so he said he thought he would stop over since he wouldn't be here this weekend.  Another reason that so far, we really love her NSG.  He didn't "have" to come over - he had already released us to NICU care ... but it was nice of him to double check her shunt.  As of this morning, it was still working great. We also got her labwork back - almost all of it came back normal except one of the cultures which indicated infection.  Because her other labs were normal, the doctor wanted to re-draw blood and run it again to make sure the one culture that came up positive wasn't just a contaminated sample. The NSG said if all else shows clear, and her shunt being ok, the only thing he could think of was that she had a bad headache or some sort of pain and if it happens again to give her a little tylenol.  I was very happy he'd stopped by to double check Meagan's shunt site.

Meagan toes! They are so long!

We tried feeding again today too -- when I would hold her, if she ever seemed hungry or rooted around -- I would put her up to nurse. She did the same thing as yesterday - latch on and lay there.  We did try the bottle again with her today.  Meagan did SO much better! She didn't drink much - only 5ccs .. but at least she actually drank a measureable amount.  When the therapist told me to tilt the bottle back to give Meagan a little break in her sucking (because she's really never swallowed to eat before), Meagan took a sip - and of course it was air. Enter: major meltdown.  She screamed and cried.. and was done. She did not want to eat anymore.. so, tomorrow when we try, I won't tilt the bottle down as much.  She was doing just fine on her own -- so we'll see where this goes.  I'm not holding my breath - I realize the feeding process is going to be long and tedius - BUT - I do hope that she catches on quickly so she can start taking down more milk.

We're still waiting on her viral urine test from the other day -- and now are waiting on new labs about this possible infection.  She was more alert today - she loves to give off little smirks and smiles.  The doctor also said since she's not really "eating" from me yet, anytime I feel she's acting hungry/interested to go ahead and put her to the breast -- she said at least it'll help our relationship.. and my milk supply.  I was very happy to hear that because it's another thing that gives me a little "freedom" in Meagan's NICU world. So for now, she will stay on the feeding tube unless she starts to eat more, and more consistently, from the bottle or breast.
We still have no ballpark time on her coming home - which is hard - but, we do know she is in the best care possible and getting everything she needs right now. We just pray that she keeps making progress so we can get her home as soon as safely possible.

My mom found a cool thing - a book for kids about Hydrocephalus.  It's based on a real life family who has a daughter with Hydro.  It's very well written - and simple for the kids.  My oldest read it to us tonight, and besides the expected questions, they seemed to understand the Hydro a little more.  This was very exciting for them because they haven't even seen their baby sister yet, so each little step like this helps them feel more "involved" and a part of Meagan's life.  The older girls took some newer pictures of Meagan to school to share. They lovved it and asked for more.  The teachers have been wonderful  - and said for the girls to bring in as many pictures as they want to.  Their response to me when I voiced a little concern over some pictures because of Meagan being hooked up to machines/tubes was "We are all God's children - it's ok for the girls to bring in pictures of their baby

That's about it today - great progress in the feeding even though it still has a very long way to go, I'm glad she's at least starting to suck.  I know her OT, PT, and Speech therapists will continue to work with her and help her keep progressing.  We don't have a timeframe on her discharge from Children's yet - it looks like we'll be in for another week at the very least.. probably two.  It's getting rough going back and forth and splitting our time between Meagan and our other 4 children.  I miss my older girls when I'm at the NICU most of the day, knowing they'd like to see me. ... but then when I'm with the older girls, the only thing I think about is Meagan so I'm distracted.

I've realized Meagan being the 5th child is a positive and a negative at the same time -- a positive thing because Brian and I are grounded in our parenting and our marriage , and Meagan will have 4 older sisters to help her, stimulate her, and love on her for the rest of her life.  It is a negative because having had 4 other children, I know exactly what Meagan and I are missing in these early weeks of not being able to be together... so that makes the seperation more difficult. 

We're taking the 4 older girls on a special outting tomorrow with just Mommy and Daddy so they get time with us. We are very excited to spend time with them as well and give them some one on one attention.  However, some of the best advice came from a fellow Hydro mom - she told me not to worry about the seperation time from the other children.. .she told me that Meagan just being in our lives changes everything - so the other kids are going to need to learn and be tolerant of her needs.. and this is just the beginning.  She told me they also need to understand if ANY one of them were in need, we would be right by their bedside just as we are with Meagan.  And she's right... when any of our girls need us, they absolutely become the focus.  The girls seem to get this - and they'll be stronger for it.  I can't wait until Meagan comes home and they love on her! She is one lucky kid!

Bone starting to be a lot more noticeable on Meagan's forehead

So much more calm today!

Loves to be held

Daddy and Mommy "catch up" on sleep... sort of.

Wednesday, October 5, 2011

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. 


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!