NG Tube is a Go!

Today Joe and I took a class to learn how to insert the G-tube on Miss Maura. We don't intend to keep it long term, and it was more something that I requested, rather than something that was offered. Maura is still a peanut. Today, she weighed 6 lbs 8 oz, just a few oz more than birthweight.

Our concern with Maura is that when we do eventually take her home, between the phenobarbital and the post ictal state of a seizure, Maura is often very tired. This means she's hard to rouse and won't eat. We have enough problems. We don't ever want to hear the term "Failure to Thrive" come into play.

I'm a huge advocate for nursing my baby. I'm very proud of the fact that Maura is 26 days old and still has never had anything in her precious little belly but breastmilk. She has a great latch, but a poor suck. I don't care how she gets my milk, as long as she does. I want her to grow...to grow out of these seizures.



If that means that Joe and I need to be pushed a little past our comfort level to do it, then that's what needs to be done. Joe and I are becoming regular old pros at this preemie with seizure business! I just wish we were in a different business!

A Father Daugher Moment

Just a few words today. We are still at CHOP. We still have no answers regarding Maura's condition and she's still having seizures. Please keep us in your thoughts and prayers. Maura is 25 days old, and she has spent almost 20 of those days at CHOP. We love our baby girl and wish to take her home some day healthy!

Back to CHOP!

Well, I'm sad to report that our homecoming from CHOP was short lived. Saturday night, I woke up to nurse Maura, and when we were done, I had put her down for a mere moment to use the bathroom when she let out a blood curdling scream. I couldn't determine whether or not it was a seizure, but the behavior was not typical of Maura. From there on out, there were two more seizure episodes and Maura turned blue on us on Sunday afternoon. We knew we had to take her back.



After a bit of a debacle in getting her to a safe facility to be transferred to CHOP, we finally made it to CHOP on Sunday night. She suffered a few more small episodes on Sunday night, and then two more on Monday morning.



Luckily, the doctors are keeping her on the same team and trying to move her back to the same area we were in before we left the NICU. Her care is staying consistant and that's a beautiful thing!

Hopefully they'll figure out how to control her seizures again. Joe and I are much more hesitant to take her back home again after quite a scare yesterday. We'd like Maura to be with us for a good long while, and we certainly can't have any blue babies!

Thanks for thinking of us today! Please keep Maura in your prayers

The Big Reveal

As many of you already know, Maura is home with us now! She came home on Thursday. Yesterday, we had a doctors appointment at our pediatrician, and we are just trying to settle in here at home. The newborn is easy, the toddler is difficult! While we are still having some nursing challenges, we are confident that it will all work out just fine, simply because this is what we wish!



I started this on Wednesday night to share with all of you, to try and explain the whole story. Thank you for keeping us in your thoughts and prayers as we continue to recover from the longest 20 days of our lives!

2:50 a.m. - It's been a long night already..day too! I've had to keep big secrets from all of you..because we just wanted to be sure. A neighbor of ours in the NICU had been told numerous times her little guy was headed home, only to be filled with disappointment. We didn't want to share in our joys until we were ABSOLUTELY SURE she was headed home.

Let's start with what happened.



9:30 a.m. - Wednesday - Lucky 13th day - The doctors made their rounds. Maura is now seizure free for day 3 and doing wonderfully. She's nursing during the day very well, and having good awake times...Then they say it..The time has come, if we are OK with it, to take her home. We've got lots to do before that. Car Seat Study, Back to Sleep Video, Shaken Baby Video, and the biggest milestone yet - removal of the G-tube...which means that Maura will have to take ALL feeds by mouth and meds as well from here on out, and we have to learn how to administer those meds and get them filled at the pharmacy. She also needs a pediatrician appointment for Friday just to see how we did overnight. Then performance anxiety steps in - they deliver a baby scale to the bedside....the same scale they've wanted to leave out from the beginning, and here it is, and we've got to prove to it that we can do this.

A scale! A stupid piece of electrical equipment! And We've got to prove to IT that we can go home!

All Day Long - Nursing is a disaster. How can my baby possibly even think about coming home if she doesn't want to nurse?! What am I going to do?! She's a ZOMBIE. A zombie unlike any day here so far that we've been nursing. What's the deal?! Our nurse hovers often, trying to reposition Maura, trying to wake her up, trying to make it happen, which in itself is really awkward. I mean really, I'm all about hanging my boobs out after 15 days in the NICU, but this is ridiculous.

It gets to a point in the afternoon where I completely melt. I tell H, our nurse, that I hate the scale, and that I know she nurses, because I know my baby, and we can do this. Joe and I head to lunch. We drop off her scripts at the in hospital CVS, eat lunch, and head back to pick up her meds and carseat from the car. Insurance doesn't have her on it yet, so I have to pay out of pocket for her meds. Fine, whatever, anything to get one step closer to home. It wasn't as bad as I thought it would be anyway. Insurance may have covered another 10 dollars out of it.

After Lunch - 2:30 p.m. - Joe heads home to pick up Patrick and bring me back what I need for the night. I'm staying so as to show that Maura can indeed take all of her feeds by mouth. I've got to give him a list of things and I'm cursing myself for not packing another hospital bag like I had planned...Perhaps I never thought they'd really let her come home, but here we were! I give him my list and off he goes. His plan is to bring Patrick back to visit Maura and hand over my stuff for the long night.

I decide to call our family doctor to schedule her Friday appointment only to find out that they won't take Maura. They are concerned about her meds and will not accept her as a patient. They feel it is in her best interest to see a pediatrician at this time. Wonderful! One more snag in our day. But this girl has resources. The hospital doctors from Virtua won't cut it. We thoroughly interviewed them with full consideration of potentially switching Patrick as well. They won't follow an alternate vax schedule, so we knew it was a dealbreaker. Dr. Sears to the rescue! I knew his site listed doctors that were alternate vax friendly. One just so happens to be in Lawrenceville, so I give them a call...no problem! They'll take her! Amazing! How excited am I? We've got an appointment!

Late Afternoon - After trying to get Maura to latch, getting more and more frustrated by my otherwise normal but sleepy baby, a lactation consultant shows up like a beacon to me! She's got tricks to show me. She watches Maura latch and explains why she latches like she does. Suck, Suck, Suck, Swallow, Breathe. It's about her style - or so I thought, but in reality, it's because Maura is a pokey little preemie. She shares a supplemental feeder with me that we can use if we need to. It can be used either by hand or by breast...and all of a sudden things are looking better.

Joe arrives with all my stuff and Patrick. I still can't figure out for the life of me how he got all that stuff upstairs with a toddler, but by god he did it!! Patrick wants to play with the toys here, which are many. We want to take him to dinner and share Maura with him....but he doesn't want much to do with it all. Time flies too fast and before I know it, my boys are on their way and Maura and I are left for the night.

It was by far the longest night of my life. I got a total of about 4 hours of sleep. I vividly remember the first night that Patrick stayed with us, and I remember that being a long night. The first night Maura slept in the NICU at Virtua was long. Last night was much much longer! We did get her to nurse OK! She's setting her own style, taking a particular amount of milk at each nursing, and that's just her, and I'm OK with that...She'll get it in her own time. We can supplement if we really need to, I've got quite a stash of milk!

5:30 - Sneaks up fast. Nursed twice over night. Four hours of sleep. Very tired business...but rounds happen at around 9, and if I shower, I can feel human again!!

By 8 oclock, Dr. S was in examining Maura. He didn't order the scale, he knows its not productive, and he says it doesn't matter what it said anyway because she gained weight! Take THAT scale! He sees no reason why Maura can't come home.

I still couldn't believe it. Really? They were going to let me take this baby home?



Rounds came and went uneventfully..and all we had to do was wait for Joe and Patrick! The scale disappeared shortly after Dr. S came to see us. No more of that business!

We just needed to wait they day out for Joe and Patrick, and then we were out of there! It was very weird to pack up and move out. It was the place we called home for the last two weeks. When we walked out, we gave hugs to the nurses, thanked the doctors, and stopped at the front desk so that they could cut our bracelets off. They took them. I almost asked for it back, but really, I didn't want it. I have plenty of things to remember the NICU by, I don't need my NICU bracelet. I just needed Maura.



When we got in the car and started to drive away, I cried. It hit me that we didn't have to drive back to CHOP on Friday, and while we are thankful for everything they did for us and how they made us feel while we were there, 14 days in their NICU was plenty for us.

Today, it's Friday...Today, I wonder about the little baby that took our spot in bed 13 in NICU West. I only hope that they don't spend as much time there as we did. They are in my thoughts!

Day 13 at CHOP and How Patrick is doing

Explaining to your toddler that your baby can't come home just yet is really difficult. Patrick has always been a very easy going guy. We really didn't know WHAT to expect when Maura came. Of course, things were magnified when I disappeared fly by night with the bleeding and my placenta previa. Thankfully we made it possible for him to wake up to Daddy being home, but that week sent him into quite a spiral that we've got some recovering to do.



How do you tell this little person that you are sending him to a babysitter every day - even a bit later than usual - while you go and sit at the bedside of a newborn in the NICU? You can't explain it. The baby that was in your belly is not here...and there really is no explanation.

So when he begins to act up, he really doesn't have to explain himself either! We've had some spitting going on, yelling, cutting us off, and general "beastedness". He even pooped in the tub last night!



So we are trying to give him as much time as humanly possible. Trying to make him feel like he's a part of everything. We've been trying to be with him, take him to the park, and do special things with just him. We even got him new fish!

The day that Maura comes home might be the best thing for him..let's hope we can see that day sometime soon!

Two Days - Seizure Free!

Yesterday they promptly decided to ditch the Dilantin and double Maura's Keppra. I'm crossing my fingers really tightly that this is the magic dose! I'm not getting excited because Maura has a habit of getting acquainted with the doses and then dropping her sats to critical levels...but it's hopeful!



They took the EEG off her beautiful little head today. I swear, it was like a party! I was so excited! We washed her hair and got her all dressed and I've been holding her ever since! We even nursed a few times! I think her hair is getting lighter by the day. I can't wait to see it glisten in sunlight! She's hardly even seen sunlight! Hard to imagine, isn't it?

Hopefully when we come tomorrow, her IV will be out of her little foot and she'll be well on her way to day 4 seizure free! Thank you for thinking of us today!! For good measure, my little ham, Patrick Finn:

So You Think You're a Doctor Ehh?

"Do you have a medical background?"

Yup...that's what this weeks attending physician asked me after rounds this morning. Apparently I come off as very well versed about what is going on with her. Google is my friend. I told him that I was a teacher, and that I read when someone tells me something, and it helps me to digest what is going on with our Maura. I told him that I read the stories...I read the medical articles...I take it all with a grain of salt as I try to process it all. I told him that I talked to the neurologist this morning and how we don't really think the new drug, Dilantin, is not ideal for her to be taking long term, although it appears to have stopped the seizures yet again...and that they need to be looking at something else, possibly Topamax, which isn't approved for newborn use right now but has similar uses to Dilantin. I told them that she never desats when I nurse her and she's consistent between 98 and 100 saturation. This seizure business only happens at night with critically low sats. The dips in sats that >I< see are all easily recovered from.

I think the doctors like me. I'm patient. I'm not freaking out. I'm human. And I ask questions, research, and try to understand such an incredibly complex situation with grace and style. I don't impose my "medical opinion" on them. I just want to be aware of what exactly they are doing to my baby, and what they are pumping into her.

Last night, after they put her on the EEG, she had an incident around 10:00. The doctor called at midnight explaining the change in plan, with the new drug. Nobody told me they'd be putting another IV into her. I'm told it won't be there long. They gave her a bolus of the new drug. Bolus - a new word I've learned. It means a loading dose, apparently larger than usual. I heard the word often in regards to my own IVs over in Labor and Delivery. If they switch her drug, they'll have to do another bolus I can assume. Hopefully, they've got it right..hopefully she will be observed seizure free...and not pull a last minute stunt that she's quickly becoming notorious for. Then, and only then, can our little sweet Maura come home.

In the meantime, we cross our fingers. We pray. We hope that she'll stay seizure free. Please keep Maura in your thoughts today! Thank you for checking in!

What Nobody Told Us About the NICU

Tomorrow my baby will be two weeks old. She's come a long way in two weeks. But she has a long way to go as well. I know that this will all be a distant memory, but I feel like it gets more difficult as each day goes on to deal with in all of my mental capacity. Joe asked me yesterday where I would rather be. He expected me to say at the beach. My reply was much more simple: In my bed, in my jammies, napping next to my newborn and snuggling with my toddler in his jammies too...That is where I would rather be. It just seems so far away...almost too far sometimes.

I sit here right now, with this tiny little bean on my lap...who's sleeping most peacefully. She looks like a little angel. Her ducky onesie fits her perfectly. She snuggles up in her elephant blanket. She's definitely mine. When she's awake, she glances at me with her beautiful blue eyes. She's a quiet little thing, rarely getting worked up, even when she's hungry. I'm getting to know Maura, and we are bonding, regardless of the constant beeping around us from the variety of newborns in this area.

They don't tell you that the original date they shoot for will change what seems like a million days over. You look forward to the weekend, only to have it pushed back to midweek, and then to be pushed back to "5 days seizure free". It's really hard to deal with on a daily basis.

They don't tell you that these issues only happen when you aren't there....isn't that how it always goes? They never happen when you are really there in person.

They don't tell you that you'll nurse in front of anyone...especially if it will help prove to everyone that you are more than capable of feeding your baby whether or not you are here or at home.

They don't tell you that every wet/dirty diaper is accounted for...records, records, records!! Everything is recorded..."Was that a seizure? Is she just breathing funny? What is going on there?" Of course, if there were no monitors, you wouldn't see any of this, and most of it wouldn't be reason to worry...but here in the NICU, you hold your breath. You hope that when you call at night, everything will be fine.

They don't tell you how hard it will be on your toddler. Toddlers just don't understand it all. You can't explain that your newborn really needs you...to bond, to nurse, and that being an hour away is really hard.

They certainly don't tell you that when another baby leaves to go home, you wish you were that family. You wish them well, and can't wait for the day when you'll be on your way...because every day seems to take twice as long in the NICU.

Thank you for thinking of us today. Writing helps to process it all. I'm glad you can all listen in as my mind even begins to deal with this whole NICU thing.

Maura - Saturday Edition

So not much today. We were here for rounds this morning and they've got her on a new drug: Keppra, which is used in conjunction with the phenobarbital to prevent seizures. They feel like she's still having some mild seizure activity, basically she'll desat and then she'll be wide awake staring off into space. So they added the Keppra.

She's hitting all of her other milestones that they want to see like a champ, now they just want her seizure free for +/- 5 days. This isn't the doctor we've seen regularly for rounds all week, and she said some others might disagree...but she thinks if we've got that, then she'll be safe to go home.



Maura has great "output" when it comes to breastfeeding, so that's awesome! She still won't take a bottle, but we've already debunked the necessity for that. She'll just get whatever she needs via feeding tube and they will continue to try to give her a bottle without really pushing the notion of it. She also gets her meds via feeding tube, so for right now, having it isn't a bad thing...

So, one day next week, and I'm sure we'll talk more on Monday with the weekday team, I'll be staying the night here at CHOP to shoot for 24 hours of mom feeds. Joe and I did the infant CPR class today here at CHOP. We still need to watch two short videos.

Joe is planning, as of right now, to head back to work on Monday. Me too....JUST KIDDING!! I'll be coming here to CHOP during the day and Joe might come at night to see her, but has no intention of skipping more than a day in seeing her.

In the meantime, we need the Maura Cheerleaders to keep rooting for 5 days of seizure free! (We've don'e 4, so let's up it by 1 or more!)

It's looking like mid/end week for now...if we get lucky earlier, that would be great! If not, that's ok too...the last thing I'd ever want is to take home a baby who stops breathing!

Crossing T's and Dotting I's

Well she'll be staying the weekend, and we are shooting for early next week for discharge. The doctors brought it up today, not us. Apparently she's still desating enough that they want to make sure it's not a big deal. They are also still waiting on some lab results and she wouldn't take a bottle for anyone LOL!

They said it would "give her some time to take the bottle better". I turned around and said "What if she NEVER takes the bottle better?" I told them I really didn't have any intention of making her take a bottle at home and that I am an EBFer and that my little guy didn't take a bottle AT ALL until he was 4-5 months old. That said, they suggested I plan to stay over night with her for 24 hours early next week, with notice. When she nurses, she has GREAT output and is pooping/peeing really well, so it's very obvious that nursing is going successfully for me now.

Basically, it's like an IEP...once they let her go, it complicates things in bringing her back GOD FORBID they have to....so they want to wait on a few test results...and send her home when they've crossed ALL the T's and dotted ALL the I's..I get it..

In the meantime, we've got weekend coverage...we're thinking of bringing Patrick for a little while tomorrow morning and then sending him back to Grandma's which is about 20 minutes away. And then Sunday, he'll stay with them too..

MY goal is to get to CHOP early to catch her 9am feed in the morning, and nurse her through her 3 o'clock feed...and they can NG her feeds overnight...and make sure her phenobarb levels are perfect...I'm OK with this, it isn't going to get worse anymore!

The Most Perfect Day!!!

You guys, I'm about to cry. I just nursed my baby for OVER AN HOUR! I can't tell you how excited I am! She totally took right back to latching and had NO PROBLEM!



As long as I'm here, she can nurse and doesn't need the feeding tube. They are just keeping it in to make sure she's OK for now...but they are slated to take it out as soon as she gives the "ok"!

They are just making sure her phenobarbital levels are OK, and she won't be getting it via IV anymore, since they took THAT out when I got here this morning. She'll be getting it orally at 8am and 8pm...and she'll get it for about 6 weeks...they'll let her naturally wean off it as she grows without adjusting the dosage.



I really pushed to nurse...and they really let me because I'm an experienced nursing mom. They said they'd be more hesitant if I was a new mom who hadn't done it before...just because of the unsurity of it all...So I'll nurse her one more time today before heading home and as long as I'm here, I can nurse my baby!

Tomorrow, I'm going to push for a date to go home...and I'm really hoping it will be by the end of the weekend at the latest! They don't really seem to want to keep her here if they don't have to!!

Little Tootsies!

Back in February, when I started the knitting group at Beanwood Cafe, never did I realize how important it would become to me. I vowed to learn something more than making scarves for the rest of my life, and put my efforts into making booties and hats for my baby to be.



The first paid I made were too big! That's fine, I thought, I could just keep them for the fall. They are a nice deep teal green....and when I showed them to people, they'd take a good look at them and assumed I knew the sex of the baby...it must be a boy!



Boy were they all wrong! I just happen to like teal ;) So much that I picked another teal, a lighter shade, to make a smaller pair. I started to feel like The Three Little Bears. This pair, I was sure, were too small!

But I was surprised. They fit Maura perfectly. They were made for Maura's little tootsies...hugging her little feet in a time when she can't really wear much more than these booties! And I'm so glad that I learned how to make them!

Don't you just want to eat them up!?

A Neurological Goldmine - Maura

The team of neurologists just stopped by! We are 3 day seizure free AND the results from her MRI came back fine! Her temporal lobe is a little underdeveloped which is completely normal for her gestation. They are going to do the spinal tap in a little while, so they've kept her intubated just until that's done, and as soon as she comes off the sedation...They'll run the regular panel, which came back fine already over at Virtua just to retest, and they'll run the more extensive panel, which could take weeks. She will NOT stay here for weeks. They're lowering her dose of the phenobarbital, and hoping she stays seizure free again, though she'll still be on a low dose of it...They are just assuming her disorder can be classified as something called the Fifth Day Fits, where we never see it again after she's 28 days old. This is one of those rare cases where when they find nothing, it's a spectacular sign. They are finding NOTHING as of right now on the big tests...




So, here's how it goes, I may be able to nurse her as early as tonight. Obviously, we won't be here, which means I'll get to nurse her tomorrow! This is such incredible news to me! My baby is getting closer to coming home!


They want to make sure she's stable on the phenobarbital, eating well, her body is processing everything, the proteins and what not, and then...she'll be COMING HOME!

Maura - Our Difficult Child

She's so difficult! They weren't successful with the MRI. She moved too much. Everytime they'd put her in, she'd startle. On one hand, its Great that she's startling, but NOT in the MRI! sigh....

So today they tried again...but here is where it got complicated. They had to sedate her...and her respiration is short to begin with, so they had to intubate her. It's going to get scarier before it gets better. And while I haven't cried since Saturday, I cried today, and I know it's OK!



The good thing about this is that they promised they'd read the MRI within the hour and also do another spinal tap to get more fluid while she is under sedation, making it easier for them to get what they need.

They said these two tests should give us more information. I'm really hoping this is the case. I feel like I think I see a light at the end of the table, and then it's like an oasis...a trick...and it gets darker and more deep...

I'm so tired today!

Joe let me sleep the whole way home. I needed it so badly. Going back in there after they intubated her was really really hard. I knew what they were doing, but I wasn't quite mentally prepared for what I saw. I expected her to have a tube in her mouth, but not the way that I saw it. It's the first time I actually feel reserved about how much I want to share.


I think it was especially difficult because Joe's brother Mike came to visit today, and I went to eat lunch and give them some time, as she can only have 2 adults bedside at a time. They didn't kick one of us out, but we didn't want to push the rules. Anyway, the whole time I was gone, maybe 45 minutes, she was wide awake, looking for her binky, rooting around, being fussy. They weren't feeding her because she was going to be sedated. My girl was hungry!



When I got back, I was upset that I missed it, but it turned out that she was awake for me the entire time they went to eat lunch! Doing the same things! Girl could SMELL me, and all she wanted was milk. Imagine having your breastfeeding child rooting around and knowing full and well you can't feed her. IT was so hard to watch her like this and be helpless...it was in my nature.. just let her nurse, and I couldn't and it broke my heart!


Anyway, by the time the team of doctors (mind you,it's like 5-6 doctors, not just one!) came to start the intubation, I gave her a kiss and told her I loved her.


We waited for them to finish, and when I went back in, I cried a lot. We didn't stay for long. They suggested I freeze her milk since I'll bring fresh tomorrow when she can have it (I'm pumping now). I left about an ounce for them to do mouth care because I feel like her little tongue is going to get all dry on the tip and I really hope they do it often to prevent that from happening.




Hopefully she's in there around now getting the MRI and then the Spinal Tap. As soon as she starts coming off sedation and breathing again on her own, they'll take out the tube. They lower the levels gradually until she's doing it. So hopefully by noon tomorrow she might be intubation free...

Visions from a NICU Pumping Mom

I don't normally pump in the pumping room. I normally pump bedside, so I can be near my baby. Today, it just so happened that pumping in the pump rooms was easier. Just a few of the sights I see regularly in our new normal.

One Week Old - Finally Full Term!

Today was a good day here at CHOP! Maura is scheduled for an MRI at 6. It's all about timing. She has to be fed before she goes down. They papoose her up and hope they don't have to sedate her. Hopefully, they'll get all the information they need and can do it all without sedation.



They've got her phenobarbital levels where they want them and she hasn't had any more seizures since yesterday at around 7pm. I'm not sure what measurement exactly we are talking, but she came in on a phenobarb level of 30 originally. It made her VERY groggy, so they took her off it. Then as it worked its way out of her system, the seizures returned. So they put her on a very small dose, less than 10, and it didn't work, more seizures. So when I called last night, they told me she was going to be getting more than she started with, I was disappointed. The 30 made her very groggy, what would a level between 40-50 do?!

As soon as we got there this morning, we saw one of the neurology residents we met over the weekend. He explained that babies get accustomed to the levels of phenobarb and become less groggy. That was a bit of a relief. We did see that today as well. She was more active, doing the things normal babies do, stretching out, scrunching up, snuggling into her little papoose thing. It was really spectacular to see her being a regular baby!

I think I mentioned it before, but we are also doing something called mouth care. Basically, I get to swab breastmilk in her mouth, on her lips, and inside her cheeks so she gets a taste for it as she is currently only taking milk by feeding tube until they are absolutely sure they have the right level of phenobarb. She responds really well to it! We got a decent amount of awake time this afternoon where she just looked at us and rooted for milk. She'd get that happy milky smile when she tasted the milk and she'd react warmly to our touch. It's really great!



We didn't get off to a good start. My ipod is currently missing. We were about to go across the Walt Whitman Bridge when I looked down at my feet and saw that the ipod cord was literally hanging out the door :/ Joe pulled over, but of course, the ipod was NOT hanging out of the door It's JUST an ipod. We won't die without the ipod. It isn't the end of the world. Maybe it will show up. But when we got to CHOP, I walked up the stairs, and realized, I completely forgot ALL of Maura's milk that I pumped last night. 8 oz...approximately 5 feedings for her tonight, sitting in my fridge. I cried. Thankfully, I've already built up a days storage in the milk freezer there (in addition to a bottle and a half in the milk fridge there) as well as the 6 oz I pumped while I was there...so 4 feedings for a total of 5 non frozen feedings for the day (if that makes sense) and if they needed more reserve, they could pull from the freezer, which they may not even need to do! Tomorrow, she'll have a GREAT stash of milk!

We'll also be finding out the results of that MRI most likely tomorrow. Chances are they won't be reading it tonight as she goes at 6 (though they could!) and they generally like to say 24 hours. Hopefully quicker!

So this is a big test. We are praying that they find nothing at all wrong in her brain! Please keep her in your thoughts and prayers as she is probably there right now!

Maura's Mother's Day

Well, Maura backpedalled a bit today. At around 9am, she had a seizure. They are absolutely sure it was a seizure because they saw it on the EEG, in particular, in the right frontal lobe of her brain. Before this, they weren't seeing anything at all, and were near about to take her off the EEG and send her on home! On one hand, I'm sad that she did it, but I'm also glad because it means that anything that happened over at Virtua WAS seizure activity and it CAN be controlled.

They put her on phenobarbital again. They lowered the dose significantly so that she isn't so sleepy and will eat. When we got here, the nurse was about to feed her but was using a regular nipple and not a NUK and I requested the NUK, and she had a minor incident with her oxygen sats dropping and all of a sudden they wanted to monitor her feeding and wait a few hours before trying again. They also wanted to limit her actual feeding to a nurse just to monitor it. It could have been as simple as milk going down the wrong way or something else.

While we were there, two neurologists came to see us. As they've been monitoring her since Friday and had not seen anything, they weren't so sure there was any problem, until this morning. They explained that this is not something that causes long term issues. They may put her on phenobarbital and send her home and recheck it in a few weeks.

Right now, they want to run the MRI, which has been pushed back a bit. Perhaps tomorrow night or on Tuesday they'll do it. They want to continue to run the EEG 24 hours past any seizure behavior.

They may never find anything. It may be just that she's not done cooking yet and needs to have phenobarbital for a few weeks to let her brain continue to develop.

As I finished pumping, I was told that I can do something called mouth care, where I swab breastmilk on her lips and her tongue and her gums and she was rooting. She was looking good and the nurse said she could start feeding her earlier than they were going to. She said I could change her and take her temperature and get things going so that she could feed her. Well, I changed her, and she had another seizure. This one was very much like one of the seizures I saw over at Virtua. She had a very rhythmic cry and tensed up before falling into a gaze. They called neurology right away to take a look at it so they could assess it and they'll get her pheno level and report back and adjust it.

Unfortunately, they didn't like what they saw and are worried that if they were to feed her without the correct level of phenobarbital, she could have a seizure mid feeding and then aspirate breast milk into her lungs. This earned her an NG tube! Basically, it's a tube that goes into her nose to feed her so that she can have breastmilk. This allows her also to expend less energy to eat, but still get the necessary nutrients that she can only get from breastmilk. They HIGHLY encourage it.

While it seems like she's backpedaled a lot, which she has, it isn't all bad. Having the seizure proves that the other episodes were definitely seizures. For now, they'll put her on meds, find a good level to control them, and see in a few weeks how she is (after she comes home, not a few weeks in the hospital here at CHOP) She has also gained weight. She was down to 5 lb 5 oz and today she was up to 6 lbs 2 oz. She is no longer under the bililights. She is also "waking up". We've seen her move more than ever before today AND we've seen her with her eyes open a lot. She's also shown quite a bit of normal newborn fussies. These are good signs. This is what we want to see...

So for now, we just manage and see what she does on the EEG and the MRI in the next two days. If they find nothing (fingers crossed), they'll find her a good level of phenobarbital and she will probably come home.

Oh and Maura gave me a mother's day present! Some footprints! Arts and Crafts right here in the N/IICU here at CHOP too! Boy do we feel lucky!

Happy Mothers Day!

I couldn't be more blessed this year. I am a mother. I am a mother of two. I am a mother to a sweet little boy and a newborn baby girl. My baby girl is showing great progress and will be home before we know it.



Happy Mothers Day! You are all so blessed to share in the same love that I know right now!

Nothing but Smiles at CHOP Today!

After a completely normal Conroy morning including cereal, grapes, trains, Mickey Mouse Clubhouse, and coffee at Beanwood complete with walk into town (call me insane, if you don't know me by now, you should have known I'd be at Target and also walking around within 48 hours of discharge) we headed out to Joe's parents to drop Patrick off about 1. We got to CHOP not long after that. It was much easier to maneuver inside today and we got right to her.

As soon as we got settled, I headed to use the restroom and by the time I came back, there was already a pediatrician speaking with Joe. She introduced herself to me and updated us on Maura. Today was a bundle of smiles. Basically all of her cultures and tests for infection came back with the big negative. Therefore all of her antibiotics have been stopped. They said there is a possibility they'll fit her in for her MRI tomorrow at 10 am, but they didn't know if she'd still be all wired up to the EEG equipment. The nurse had told neurology that she would call if Maura was no longer wired...but when the doctor heard that, she called the neurologist and Maura IS scheduled for definite to get that MRI at 10 am as long as there is no overnight seizure-like activity. They'll remove the EEG wires so she can go. They just want to run the EEG longer because she is no longer on phenobarbital either.



After not seeing any kind of seizure-like activity on her video EEG at all since they started it at 7 o'clock last night, they decided to removed the phenobarbital all together and not give her a dose today (She was only getting one dose a day). They are hoping that it makes her less sluggish than she has been as sleepiness is a side effect of this drug.



She's eating today! She took 20 CCs of breastmilk this morning. The nurse said she was feisty about it too! About 2 hours later, they tried again, and gave her 20 CCs but she only took 15 (and the nurse felt bad because they have to let go of that 5 CCs because it's in the bottle already.) They are using NUK nipples because they are shaped more like mom. They think she was still a bit sluggish today but this is improving.



At around 2:30, the nurse said she wanted Maura to eat again between 3 and 3:30 and asked me to pump so that we could feed her fresh breastmilk. Let me be clear, the only reason we can't nurse right now is because of the EEG and video monitoring, but that should be gone by tomorrow. Basically, she has something like 12-24 probes stuck to her head with petroleum jelly and her head is wrapped with a cut off sock to keep it all on to monitor her brain activity. Picking her up right now would be really en-cumbersome and difficult considering the wires and she wouldn't be able to be monitored via video.

So anyway, I asked for a pump, where I was given directions on what to do and I never have to ask again. Pumps are a free for all. If I see one, I can grab it, as long as it isn't in someone's personal space. If there isn't a free one, all I have to do is ask for that one. There are usually several pumps floating around and you just grab one, and clean it. The nurse showed me how to do that. She also showed me where the privacy screens are. I feel like a pro at this pumping business. Thank god this isn't my first! Everything is hands on. I bring the milk, I put it in the fridge, I label it, I take what bottles I need, I take what pump stuff I need (tubing/flanges/etc).

After I pumped, we made a 15 cc bottle for Maura and she took it. We added another 10 CCs to it, and she consumed that too. The plan for the day only stated to do 20 CCs each feeding. The nurse figured it doesn't hurt if she'll take more... She took all 25 CCs from Joe. It was the most amount of milk she had taken YET! She took it from us, with our coaxing, tickling her toes, talking to her, getting her to latch. That's what we want to see!

So today brought spectacular news. The only thing going in her IV is fluids right now. She's getting ONLY breastmilk NOT formula. She is showing NO signs of seizures at all. Let's hope all of this continues!

We'll head back tomorrow for longer than today.


On our way home, we saw a double rainbow over 295. Today really doesn't get much better!

A NICU Moment

I bet you didn't think you'd get a moment from us this week! Well...more so than ever, I've got life to document...moments to capture, to save, to remember always - in sickness and in health...

Here is our moment from this week...and now we move upward...hopefully next week's moment will be at home!



Thanks Amanda for your inspiration always! What's your moment this week?

More about Maura

I got to hold her for a while this morning! So did Joe! Joe brought Patrick to visit and my mother in law met them here so that Joe could come down and spend time with Maura and me. When I first got there this morning, they were doing an eeg (ekg? is there a difference? it was one of them...) and they were setting up the test with all the wires to her head and what not. I was so not bugged out. The tech explained it to me and I got to stay and hang out with her and she showed me what she was looking at (not looking for, they send it over to CHOP for a neurologist to look at). I was there for the whole test and got to help rouse Maura from sleep at the end, which involved a lot of poking and tickling that I was told last night not to stimulate her, but obviously they needed this type of response for the test. After they removed all the wires and what not, Joe arrived...so he missed all the excitement.


She hasn't had any more seizure-like episodes. She had one mild one after they started the phenobarbital, but they think she is responding well to it.


I let Joe hold her so that I could go see Patrick for a bit. When I walked into my room, his face absolutely LIT UP. He was more than ecstatic to see me. I didn't cry because honestly, it was such a relief seeing him and getting to hug him and cuddle with him. My MIL was there, and she was feeding him goodies (because she knows where to get things as she works here!) Anyway, we hung out. He knows we are in the hospital. I know him better and told him I was going to use the potty and asked if he wanted to come in too...I showed him my incision site and told him that was mommy's boo boo and it had to heal so Mama had to stay at the hospital. I asked him where Maura was, and he told me Maura is sick. So he gets that too. I asked if he wanted to go see Maura through a window and he smiled. So I took my MIL and Patrick and showed my MIL how to go in and be with Joe. Then I took Patrick around to the window. Patrick was more upset that Daddy was in there and he kept saying "Daddy go out!" rather than wanting to get in or anything about Maura...I took him back to the room so we could get some one on one and boy is he fine! He didn't act up, he was totally chill...He had some jello for the first time ever in his life (and sorta liked it!) Joe came back and my OB came to see me as well as the neonatologist. My OB and I talked about everything (this is the one who delivered Maura, not my regular OB/GYN, but one in the practice who I've seen quite a few times...my regular one came to see me for the last two days...before all hell broke loose) He tends to be less cautious with what he tells you and more matter of fact. He basically told me the other day that I was having a c-section before I went for the U/S...because he just knew what they were going to say in MFM. I get the idea from him that all of this is pretty normal preemie stuff and that she's not going to be here ALL that long...He said her risk of infection was lower because while there were OTHER complications with my birth, none of them involved any kind of breech of bacteria, like GBS or my water breaking or abruption...


While he was there, the neo came in. She asked me to regurgitate everything she'd said and was pleased that I was listening so well. She said they have to do the Spinal tap again because they weren't successful last night in getting what they needed..I'm obviously OK with that. They confirmed some things for Dr. Zalkin said, and they were chatting and Dr. Zalkin said I was going home tomorrow and almost asked between the lines if going home for her was possible. I said right away that I knew she couldn't come home until Saturday at the earliest. The neo confirmed this. So far though, there is nothing alarming showing up. Her tests are coming back fine. I'll have spinal information in a little while. Her white blood cell count is fine. They might just send her home over the weekend with an apnea monitor if nothing else happens. That's key!!


So for now, we go hour by hour. I'm here until tomorrow at the latest. She's here til Saturday at the earliest. Patrick is being a rockstar. Joe has his last Rider class to teach for the semester tonight and we've got a neighbor taking over Patrick and putting him to bed at our house...Patrick will go to Raquel's house tomorrow...and we'll see what the weekend brings! I'll talk to Joe more about that tonight...


In the meantime, I'm still waiting for my milk to come in. I got some good sleep last night...3 hours and then another 4. I'll talk a nap today. I'm not sure there are many tears left in my head, but I'm sure my body can manifest some somehow! Though I'm more and more able to process it all without crying...I'm eating lunch as I type and then I'm going back to see her (and this all gave them the time to do the spinal tap uninterrupted)

Someday...I'm going to print all of these notes out and save them for Maura so she sees what an ordeal it all was!

Maura Update

Well folks...I shouldn't count my chickens before they hatch. We were fast tracked to getting out of here today which I was quite excited by and it is no longer happening.

This morning, the audiologist came in to test her failed ear and she passed with no problem! Go Maura! The Pediatrician came to see her about her hip clicking yesterday, which was a signal for possible hip displaysia, no click! Super Maura! I even asked about her color and she was looking GREAT! She had one more test to pass...the car seat stress test.




They told me they would take her for the test about an hour after she nursed. Considering she's been latching well, I thought NO problem! We nursed. She fussed for a few. Then she did something really odd that we haven't seen yet in the past 36 hours she's been rooming with us. She got all purple and tense, like when you see a newborn get all upset. I didn't think much of it, I just thought to myself that we hadn't seen THIS before...and I didn't even say anything about it because I didn't think it
was reason for concern.

Anyway, she went for her carseat test, and right towards the end, she failed. Not knowing what exactly it meant, I knew she couldn't even try again for another 24 hours. They also said her bilirubin levels were up at around 11 through the transcutaneous test. She was borderline for letting her go, but they were OK, again, like Patrick, with having her
retest in the AM...

So the neonatalogist came to see us. She explained what the fail on the carseat meant. Basically, she did that purply thing right towards the end of her test. It means that she basically stopped breathing momentarily and self recovered. They wanted to monitor her tonight in the NICU and see if there was a reason why she was doing it. I asked what it looked like and that's where I made the connection to her purply breath hold thing. I told the doctor about it. Red flag goes up. Now we question
WHY she's doing this.



She's a preemie. This is what preemies do! They've got their quirks, like she's been a little jittery so we are seeing that as well. That's no big deal. This apnea thing can be a sign of infection, but we don't know. We asked to go and see Maura at the NICU, and considering I've not been out of the room much, I wanted to know how to get there.

Somehow on the way there, she had another incident of this apnea business which sent up the flag for them, because it means she's done it 3 times in one day. They are currently doing blood work to rule out infection, but in the meantime, they are starting her on fluids and on an antibiotic. This means she'll have an IV inserted. We'll see what it means for me
nursing. It may mean I need to pump. Ahh, so what! I pumped for a good long time with Patrick, I can do this here and now.

She would come home with us as of now the earliest being on Saturday if there is no infection, which means I will go home yet again (as with Patrick, been there, done that!) with no baby on Friday. Joe went home to be with Patrick today and we don't have official plans for Patrick for tomorrow night just quite yet. She COULD be on these antibiotics for 7-10 days if there *is* an infection and come home then.

I held it together pretty well in the NICU for the two minutes I got to see her. When we got out, as Joe was about to go home, he cried. (Yes I'm selling him out!) and it's OK, because we gave each other a hug and I walked back to my room at mother/baby and got to the nurses desk and then >I< cried.

When I went to see her again, they told me she had been showing some seizure-like behavior on 2 occasions. They ordered a CT Scan and a Spinal Tap to see if they could figure out what was going on and why she was going downhill. I stayed with her until she went for the CT Scan and the seizure activity happened again, at which point they also decided to start her on Phenobarbital. I got a few hours of sleep and will be headed back to the NICU from my "suite" in a few minutes. Then I'll get some more sleep for the night...

I'm tired, hormonal, and beat down. It's been a very long week and I've vheld it together miraculously well. *We've* held it together. From a middle of the night bleed to 60 hours of holding pattern to major surgery to this, it can't really get much worse, right? It's GOT to get better somehow! And it will...I'm absolutely sure of this.

I reminded Joe that in a year this will all seem like a blur. We'll all talk about how "Remember when Maura had to stay at the hospital!" and you know what? She'll be walking around like nothing ever happened! I mean, look at Patrick! He did it too (although his extra stay wasn't that long, and we didn't have another little person at home)!

Anyway, Thank you all for keeping us in your thoughts and prayers. Please continue to do so. I'll update you guys when I know anything. This WILL improve! (I say that so easy, don't I? ;)