Sunday, August 31, 2014

Daniel's Update: Sunday, August 31

Howdy Everyone, 

I'm sorry I didn't send out an email yesterday... I literally had no time to type up a note.  Free time has become more and more less common (along with quality sleep), but the strongest steel goes through the hottest flame.

Caroline is still wearing a designer nasal canula (I'm not sure if it's Coach or LV, but it's sooo this season) and it's on about the lowest setting available.  The remaining belly tube has a mandatory removal date sometime in the next 24-48 hours, but that's good and bad.  The belly line has to come out because it's at risk for an infection, but she still needs a line in for fluids, meds and food.  If it were just fluids and meds, then an IV would work, but the food is a different story... so they'll soon have to insert a PICC line. A PICC line is a Peripherally Inserted Central Catheter.  It's basically an IV that gets inserted into a vein in your upper left arm and pushed up near your heart.  Food (or rough drugs) causes the small veins to collapse easily, so this will keep her from having to be stuck with a needle over and over again.  It kinda stinks because it makes holding her a little more difficult, but it's needed.  They'll put that intomorrow or Tuesday.

Her heart is just so big that they need to do a little work on it, which started today around noon.  She has what's called a PDA (patent ductus arteriosus) and it's a little "connector" between the two arteries of the heart:  the pulmonary artery (deoxygenated blood coming into the heart) and the aorta (oxygenated blood going out of the heart).  All babies have this connector and it usually closes up on it's own either immediately after birth or a few days later.  This causes high blood pressure in the lung arteries and can strain the heart.  It's a medicine, so she'll have three doses of the medication, 12 hours apart.  The positive is that this will likely fix her problem, but it also means they're not going to feed her the milk that MP's been saving for her until the treatment is over, because the medicine slows down blood flow to the stomach / gut.

She's been progressively increased on the amount of food she's given (from MP).  Little ones typically don't have the ability to swallow or a gag reflex until around 34-ish weeks and her being able to feed on her own is one of the requirements to leave the hospital.  The tanning bed is closed:  Caroline is out from under the black/blue light, which was to ameliorate the effects of jaundice (pretty common).

Mary-Peyton was able to start Kangaroo Care yesterday, which is skin-to-skin contact with the baby.  The last time she tried her oxygen levels dropped and it made us both uncomfortable.... BUT.... this time her respiration rate dropped into the normal range, which is awesome!  It was the first time all three levels on the main monitor were in that golden window.  Even cooler, Caroline has been moved into a semi-private room (there are no private rooms in the NICU) and out of the "Admitting" area.  The Admitting area is for those just coming in and those that need the most amount of critical care.  Now we're in a room a little closer to the hot stone massages and the mud exfoliation suite.  If you listen closely you can hear running water and reiki flutes music.

Whitaker is asking more and more about Caroline... and it's getting harder to keep him entertained.  Somewhere deep down I think that he thinks we're abandoning him when we go to the hospital and it just stings. We're excited that school starts back on Tuesday.  Until our little one comes home, we're going to be stretched thin.... MP with work and Caroline and me with work and Whitaker. If anyone wants to meet up in the late afternoons / early evenings with Whitaker and I to do something "exercisy", please let me know. The kid will do wind sprints between the mailbox and the street sign if asked, but daddy and mommy are beginning to slow down after a few weeks of hospitals, both before and after Caroline.

I have to give a shout-out to the staff in the NICU, they're awesome. I don't see how they deal with the barrage of sounds: the alarms in there are haunting.  The bells and alarms sound like an arcade and make even the most sedate game on your phone snap you back to the 3rd floor of Rex. Whitaker's Skee Ball game is enough to make your lower lip quiver and today's excursion to putt putt was wrenching... but not for Whitaker, who magically turned $15 in tokens into two bite size pieces of Laffy Taffy and a Blow Pop.  We learned that we don't need to take a running start before playing Skee Ball (sorry Adventure Landing).

Keep praying for Caroline and Mary-Peyton, if you can.  I need my girls surrounded with as much love and positivity as we tackle this temporary situation.  Check my facebook page for a recent pic that makes her look like a baby! 



Daniels update: Friday, Aug 29

I know a lot has happened since Friday... But I wanted to include Daniel's update. It's always great to hear the fatherly take on things.

Hi Friends, 

Little Caroline had a pretty good day yesterday.  She moved off the CPAP and onto a nasal canula (think "tubes for old people with oxygen") and has kept her levels up.  I'm not sure if she'll move off of this anytime soon, but that doesn't bother me since I want her to have as much oxygen as she needs.  Her little brain hasn't developed to the point where it continually says "hey there lungs, breathe!" (though it will) and from time to time she has a "Brady event".  Bradycardia is a slowing of the heart, in this case because her brain isn't sending a signal to her lungs.  We've been told that this is extremely common in premies and most grow out of it. That doesn't change the fact that it is one of the most disconcerting experiences one can have.... this is also the reason for the daily doses of caffeine.  Another common experience for premies is a heart murmur and, you guessed it, she's got one.  It's not unexpected and if it doesn't resolve on it's own it's usually a medication-issue, not a surgery-issue.  Caroline took the chest tube out all by herself (what can I say, she's Type A, like me) and did well without it. Two of the three belly lines were removed, the one that's left is for nutrition and may stay for a little bit. This meant that MP could hold her!  It was a bit bittersweet, because when you jostle something that small and move little lungs that are just barely keeping up with the uber-high demand being placed on them... it tends to throw things off.  Her oxygen levels dropped despite having been raised from the "machine" side.  As soon as she was put back in her room at the spa (incubator), she went back to being the perfectly normal intensive care baby the staff is growing to love:  ... she better not be a diva.

The doctors have told us to get ready for two steps forward and one step back.  This is the regimen and we should expect ups and downs. I was once called aggressively festive... I'm going to be aggressively positive going forward.  I've had my breakdown in a hospital bathroom outside of earshot of anyone I knew and I'm sure I'll hit another wall, but I'm committed to being positive with every ounce of my body and I hope you will all join me.  My little girl has a hell of a road in front of her and she's crushing it right now.  She's going to keep crushing it and we're all going to be in her corner, right?  RIGHT?

I'm not a jewelry man, but the little white band on my right wrist is my ticket to get into the NICU.  I've got a buddy who is lighting vigil candles each day for little Caroline.  We're both going to be committed to our vigil / jewelry until she's out.  If you're of the praying variety, shoot a few words up if you can, this is not going to be easy for her, but that's life, ain't it?  

Today I bought  the nicest bottle of wine I've ever purchased to celebrate when Caroline comes home. I did this when I was BRINGING Mary-Peyton HOME!  I don't know why I didn't capitalize Mary-Peyton, but, then again, we're probably going to sleep by 8:30 tonight if we can get Whitaker down.My wine collection (read: like, maybe 11-ish bottles) is open to everyone on the day that happens.... but be quiet on the deck because there will be babies sleeping, jeez!  

Please continue to pray if you can.  There is likely another month and a half to two months of this left and this will not be an easy hike.  Keep your eyes out for updates.  I'll probably forget something from time to time and I'll pass it along. Here is a pic or two... note that Lambie's still holding strong (you can only see her ear, but she's there).



Kangaroo Care

When I went to the hospital yesterday the nurse asked me if I wanted to hold Caroline. At first I declined. Her stats had declined so significantly in the small amount of time that I held her on Friday that I was nervous. You can imagine the fear if a mother declines to hold her child. I also couldn't tell if the nurse was just being polite by asking. Turns out she REALLY wanted me to hold her. She assured me that Caroline was looking so great and I should try again. It took about 15 minutes to prep Caroline to be in my arms.  I did skin to skin.. or as they call in NICU, Kangaroo Care. When we got her settled, I learned why the nurse had pushed me to hold her. The rate of her breathing dropped significantly. She wasn't taking the short quick breaths that she had been. She was taking deeper, slower, more rhythmic breaths. It was heavenly. My child improved at my touch. I kicked that recliner up and held my baby girl for almost 2 full hours. I could have stayed there all afternoon. She slept so hard that she had 2 small brady episodes while I was holding her. I could see her heart rate drop significantly on the monitor and all it took was 2 little shakes from me and her heart rate came right back up. Clearly, we want these to stop but I am thankful for those monitors so we can keep those in check.

Caroline also received an echo yesterday and they confirmed that she has a PDA. All babies have these little openings but they close at birth. Because of her gestational age, her body had not matured enough for these to close. Her PDA is considered medium to large. They have not started treatment yet, but will likely in the next few days. The risk with this treatment is that it will drop her platelets. They will have to monitor these closely and will have to adjust dosage levels accordingly. Her oxygen has been cut in half (down from 1 liter to 1/2 a liter) and she has done great with this. She started feedings on Friday. She has a pin point size tube down her throat for these feedings. They use a pump that feeds her over a 30 minute time frame. She has been tolerating this so well that she started with 2mls on Friday and has already progressed to 8mls (well they start 8 at 12:00pm feeding).  She had dropped down to 4 lbs even but is back to 4 lbs 1 oz, so I hope we are now on the up. They also moved her out of the critical care room to a room where she will just have 1 roommate. This feels like a really big step emotionally. Those machines beep all of the time so when you have 4 of them going at once on critical care babies it can really tear your nerves up. Sometimes it is hard to distinguish the beeps between your baby and others.

Caroline's first selfie

I am so incredibly proud of BOTH of my children. Whitaker has been such a trooper and Caroline is improving daily.  I could write an entire post on how wonderful my husband has been.

Daniel's Aunt Joy drove to Raleigh yesterday and treated us to an entire store of preemie clothes for our girl. Her son was in the NICU and she remembers the emotion well and how clothes were so hard to fine. It was so very sweet and special.  I can't wait until Caroline gets to wear her first outfit!

Saturday, August 30, 2014

Roller Coaster

Well that pretty much sums up how I felt leaving yesterday. I thought I was doing okay until I had to walk away. I couldn't even tell you what I was feeling, I've never experienced anything like it. We had to be officially discharged from my room and have a nurse wheel me down to the car.  As I left, I held it together but the image of us posing for a picture, me in the wheel chair with a baby in my arms, and Daniel standing behind flashed into my head. I was crying as my sweet husband buckled my seat belt for me. 

Fast forward ten minutes and I was pulling up in the driveway with my sweet Whitaker waiting for me outside.  He was so sweet and excited to see me and it warmed my heart. He kept offering to share all his toys with me and showing me things and talking to me in a voice I don't hear that often. And so my heart broke for him. And the guilt. So much guilt that he has to go through this and its not even over.  He wanted Daniel to read him his books and put him to bed and it was Daniel who he cried out for at 2 AM.  So that added another emotion that it wasn't me. Don't get me wrong, I am so so thankful that Daniel is such a great dad and has been Whitaker's security over the past month. Just a lot of shifting and changing all at once. 

I called before bed to check on Caroline. They had taken her oxygen down from 30 to 25 so that was a positive. I also called at 2 AM and she was the same. All a positive report.

At her 9 AM assessment her oxygen was turned down to 21 (the lowest!). 

Caroline is continuing to stay strong. Now her momma needs to do the same!

Daniel is over there now and I am about to head that way.  

Friday, August 29, 2014

No words

I started crying when they were getting her out of her little incubator and swaddling her.. They weren't even close to handing her to me but I just couldn't help it

I held her for maybe 3 minutes. Her stats started to drop and it was making both Daniel and I extremely nervous. I would hold her all day long if I could, but I was okay handing her back to get her levels back up. We can try again in a few days. 

Day 15

I woke up in tears this morning because today I am being discharged from the hospital. I am anxious to see and spend time with Whitaker but I also hate leaving my baby girl. I knew that I would start to feel torn between my two children, but I was not prepared for anything like this. If we were leaving here with Caroline to get into a new routine at home, that would be hard enough. But I am heading home to an eerie sense of the old normal. There is no nursery set up, no baby to snuggle, no sign of her in our home. I am looking at a 3 hour pumping schedule, juggling 2 children in two different places, catching rides (cant drive yet), transitioning Whitaker into a new big boy room and preparing a nursery for a baby that I can not yet care for. Im not returning home to find a new normal. I'm returning home to turn our family upside down.

Of course there are a lot of positives too. I am not one to completely overlook those. Today is day 15 in the hospital. These days are split between 2 trips, but still. Whitaker needs me back and as strong has he has been, I know Daniel needs me too. There will be more family time for the 3 of us. I know that Caroline is in fabulous hands. I have confidence in that now. She is being provided more care than I could ever give her at home. I will get to completely heal from my c-section without the set-back of total sleep deprivation. Whitaker can transition slowly into his new room, and Caroline's room will be a great distraction and give me a chance to actually do something for her.

Caroline had a good night. She is still on the nasal cannula. They had to turn her oxygen levels up from 21 to 30 but she was doing great and they were weaning her back down. She is off of her antibiotics. She had a couple of Brady episodes from the time I saw her last night until I saw her this morning. I was assured that this was all still normal preemie behavior and that she would grow out of them. She will continue to receive a caffeine dosage daily to assist with those.  Her jaundice levels were up so she is receiving phototherapy (the blue light). This really didn't concern me because I know term babies that had to receive this treatment. The neonatologist did hear a bit of a heart murmur but because all of her levels are looking good she is holding off on an echo. She said if it continues it will be corrected with medication and does not require any sort of procedure. Ending on a positive.. the nurse has been slowing removing one of her belly lines throughout the day. When I go in to help with Caroline's 3 o'clock feeding I might get to hold her :) This would be perfect timing because I am leaving soon after to be home for Whitaker when he wakes up from his nap.

Under the lights

 I am sure I will see this pose again in 15 years on the beach.. big shades and tanning.

My long and lean girl sprawled out

Thursday, August 28, 2014

Our Day

Today was a good day. But I'm scared to say that because I am terrified that I will jinx myself... but it was.  From Daniel's update earlier today, you know that Caroline came off of the ventilator at 3 AM this morning. The NICU nurse practitioner woke me up to tell me this because it was big news. I am so glad I was too groggy to recognize who she was before telling me, or else I would have panicked. She went on to the CPAP, and I was so proud to get her there. In my morning visit she was looking so great that the respiratory therapist tried her off of the CPAP cold turkey. She held on great and was breathing on her own for about 4 or 5 minutes before her oxygen levels began to drop. Caroline was telling us that she still needed help breathing. The staff worked quickly and got the CPAP back on but on low settings.  Though I wish I didn't have to experience the trauma of her bottoming out on Tuesday night, it actually has helped. I can handle these small panicky moments so much better because I am more confident in the staff and in her resilience.

Whitaker came to see me after my morning visit in the nursery. He was so sweet and really gave me a pick-me-up that I didn't realize I needed.  Children have to be 4 to go into the NICU so he will not be able to see or hold Caroline until she is home. He saw the first picture of her today. He asked if he could please hold her and rock her. I know he is going to be the best big brother. He was also very interested in my c-section "boo boo" and how to put together the breast pump. "Mommy, can you please show me how to put this together?" literally came out of his mouth. So together we put it together and he pushed the button to turn it on. He then proceeded to lift my gown every couple of minutes and say proudly "look, your getting milk". We did not prep him for that at all so he really amazed me today.  I am so thankful for all of the help at home with him!

I got this picture tonight from my sweet friend Sara of Whitaker and Nora.  Sara fed both of my boys, bathed Whitaker and of course provided entertainment!  Thank you!

By the afternoon, Caroline was doing so well that they took the CPAP off again, but this time replaced it with a nasal cannula (the small prongs of oxygen that you have seen a hundred times in patients). With this she has to initiate all of the breathing but she pulls the oxygen out of the cannula for a little bump of O2. Of course I loved that she was making the progress but honestly it was making me so nervous. Her levels were great and she was so comfortable on the CPAP.  Just like any normal motherly instinct, sometimes it is hard to sit back and let them try new things. I had to keep reminding myself that the nurses, doctors, etc were not going to let her do anything that she was not capable of doing. I asked them so many times if they thought that she was wearing herself out. My little Caroline had just gone from the ventilator to basically breathing on her own within 12 hours. That just couldn't be right. She has held steady all afternoon. This makes me so emotional because so many people have reached out and prayed for our little girl. And today I truly felt that.

She has started with apnea and bradycardia. This is when her oxygen levels stay the same but she has sudden dips in heart rate. They started her on caffeine today to help with that. She will receive it every 24 hours. She will eventually grow out of this.  Unfortunately, this happened today when my brother got to see her for the first time. He was already so timid about being in there (it is a bit shocking) and had already declined my offer to touch her little hand. When the machines started beeping and the nurse began to shake her a little Michael ran out of that NICU so fast. She was fine within seconds so his reaction was a bit of comic relief.

Tonight when I went to check on her she was so alert.  I love seeing her blue eyes and rubbing her already blonde hair :)

The nurse was changing her bedding, weighing her, and I got to change her diaper.  One of the hardest facts of this experience is that I can't provide for her. I can sit in my room and pump milk that she can't even drink yet. So minimal things like changing a diaper are a bonding experience. She has belly lines in right now and she can not be held until those come out. I was told they generally leave them in for 7 days. I also learned what "hand hugs" are tonight. So when she was worn out from us messing with her and the nurse had her positioned just right for proper spinal lines, I "hand-hugged" her until she fell asleep.

I look like I have man-hands in these pictures, but really she is just that tiny.

On another note!

I really am so happy with the NICU staff at Rex. They have really made me feel so at ease when it comes to Caroline's care. I know she in good hands.

Here are two videos that Caron Hodges shared with me. Her son was born at 30 weeks and she volunteers in NICU.  I cried when I watched them because they capture what it's like to be the parents of a NICU baby at Rex.

Mom to Mom video: Caroline's neonatologist is in this video! She is fabulous!

Dad to Dad video:

Daniel's update: Thursday, August 28th

Good Morning Everyone,

Yesterday was a better day.  I’m going to be throwing out some acronyms and lingo here that may be incorrect, but I’ll do my best to keep it between the bouys.  As you all read yesterday morning,Tuesday night was one of the worst experiences a parent can have (Mary-Peyton first person and me through text messages).  I’d be lying if I told you I didn’t prepare for the worst.  Her little lungs were leaking oxygen and caused the collapsed lung… which sent everything into a tailspin.  The docs gave her a dose of surfactant (which her little lungs haven’t made yet) to coat the lungs and hopefully help them act like “big girl” lungs and kept her on the ventilator (vent from now on).

Some of you know that Whitaker has “Jelly” and “Lambie”, his two Jellycat stuffed animals.  We bought backups when we knew he was going to be attached at the hip to them, but he didn’t want the new ones.  A few weeks ago, Whitaker said that his little sister could have the “new” Lambie. Lambie is almost as big as Caroline and has been with her in her incubator since late Tuesday  and is holding watch over our little one day and night. Soon we won’t have the luxury of having a room on the same floor as Caroline, but Lambie is staying.

On Lambie’s watch, Caroline’s ventilator, was reduced in output (a good thing) from 45 respirations/min to 40 yesterday at noon.  By the time we went to see her together around 3, they had dropped her to 30 rpm and lowered the amount of oxygen they were having to add to the “machine-made breaths”.  The respiratory therapist told us he’d drop her again soon in the evening and we’d go from there.  She still wasn’t breathing much on her own, but when we rubbed her head or sang to her, you could see little purple lines on a normally green graph that told us she initiated a breath… This is the definition of a “lump in your throat” moment. Mary-Peyton was going to try and see her before bed, but two trauma twins came in and the NICU went into Sterile Lockdown and turned into an operating room… so she didn’t get to see her.  A few tear-filled prayers and texts later, we all tried to get some sleep… I’m running off of Starbucks and Red Bull and MP is running on her ironclad will alone.

I got a text this morning at 6:45 with some positive news.  Though the NICU was consumed with activity last night (and it’s contagious… the other premies hear and react to all the bells, alarms and general commotion), it looks like Caroline got some much needed rest with the ventilator breathing for her. She was taken off the ventilator and for a brief moment, they thought she might be able to duke it out without any assistance.  She could keep her oxygen levels up, just not high enough to be safe, so they put the CPAP mask back on.  Progress! They’ve dropped her oxygen levels to the same amount that you and I are breathing and the CPAP is about on the lowest level it has.  Ironically, the Caroline’s doctor told me that she’d soon get a dose of caffeine to help stimulate more breathing while I was carrying in our first course of Starbucks for the morning.  She has a looong way to go, but she’s strong like her mommy and stubborn like her daddy.

Mary-Peyton will come home tomorrow and Whitaker (and I) are excited!  MP is very sore, but recovering well.  Thanks to everyone for your prayers and positive thoughts.  Keep praying for little Caroline.  She’s a fighter, but it’s a long bout.



Daniel's update: Wednesday, August 27th

Good Morning Everyone,

I wish I had better news, but I don’t.  Little Caroline had a very bad night.  She was on a CPAP (forced air) nasal mask with a stomach exhaust tube coming out of her mouth most of yesterday.  The amount of oxygen they were having to give her had to be continually increased.   She had a few “episodes” where her O2 levels went very low.  Oxygen built up outside of her lungs and caused a pneumothorax (“collapsed lung”).  They put in a line to relieve the pressure and help her breathe, but my little fighter was just too tired and stopped breathing…. unfortunately that happened right as Mary-Peyton stuck her hand in the incubator to touch Caroline.  She’s on a ventilator now and not breathing much “over” the machine.  They’re trying to let her get a little rest so she put the gloves back on and start punching again. WHEN she regains her strength, they’ll wean her off the ventilator and we’ll go from there.

Caroline's blood gas levels were doing better this morning and she's gotten some surfactant to help her lungs work a little better, but no change on the ventilator. She may still have Morphine in her system so she may still be woozy, but she's definitely still exhausted, which could be why she's not breathing too much over the ventilator.

Mary-Peyton is having a rough time with this (we all are), but our family is in survival mode and we’re strong.  Please pray for my little girl and keep Mary-Peyton in those prayers as well.



Wednesday, August 27, 2014

Welcome + Caroline's Name

Daniel and I thank each of you for even taking a few moments of checking in to see how our sweet Caroline is doing.  It has been a very emotional couple of days. We are so fortunate to have such a fabulous support system.. with a special shout out to my mom who has been a rock.  I also am so thankful to have such amazing medical care. Not everyone is in a location to receive this level of care without a long commute or travel. We are starting this site to keep friends and family informed about the details... the details that we are overloaded with. In the state we are in emotionally at the moment, writing down updates sounds like the best way to share.

Now on to Miss Caroline.  Caroline is named for her great-great grandmother, Caroline Dial Penick. I grew up visiting this spunky woman at the Penick Village, where 3 of my great-grandparents resided. I remember her as a classy and sassy lady. My grandfather, Charlie Penick, passed away this past May peacefully in his sleep early in the morning on a Friday. The day before (Thursday) he put a letter in the mail to my mom that was completely about baby names for our little Caroline. He went into a bit of family history and underlined his favorites (see header for a scanned view).  This letter was received after he passed. So clearly it is a very special letter that carried a lot of weight with me. His mother's name was Caroline. Caroline is also a feminine variation of Charles. So Caroline Eads was named after him too. 

Eads was the maiden name of Daniel's maternal grandmother, Norma Eads Lawson.  I have always loved this name. The farm that his grandparents (and mom) lived on played a huge role in Daniel's life and who he is today. We wanted to honor that. She was also a vibrant woman that was both tender and strong. 

So as I was behind the blue curtain in the OR we decided to give our little baby girl a name that we felt captured the essence of these two women; classy, sassy and strong.  

I will have moments of regret towards the sassy part in about 2 years :) But right now, I am counting on it to get her home.