Monday, September 29, 2014

Love


As most of you know, Caroline came home on September 19th. She is curled up on my chest as I type! We were so thrilled to introduce Whitaker to her. He was beyond excited and couldn't wait to get his hands on her. Though he doesn't know his own strength, I am amazed at how much he loves her already. The tenderness in his voice melts my heart every time he talks to her.

This is my favorite picture of the introduction!


We are currently in sleep deprivation survival mode, but it beats the hell out of NICU survival mode so you won't hear any complaints from me.

The last 5 weeks (really more like 8 if you count hospital stays) feel like a dream to me. With so many new experiences and emotions thrown at me, I was completely overwhelmed. Overwhelmed with fear, with love, with exhaustion, with information.. you name it and I probably felt it.

Now that the fog as cleared, I have had to time really stop and think about a few things. One being that I couldn't believe what a humbling experience this has all been for so many reasons. The loss of control perhaps being the largest make up of that... but also that I kept saying that we were humbled by all of the prayers and love that poured upon our family. "Humble" is the only word I knew to describe what I was feeling. And because I am a talker and not really a one word kind of gal, this has been really driving me a bit crazy. How monotonous on my end to say thank you and how humbled I am to EVERY single one of you that has just paused throughout their day and thought kindly, prayerfully, HOPEfully about Caroline.

So I went and looked up what the word humble really means and by definition it doesn't even really describe how I feel. I don't feel inferior or insignificant, though I do feel meek. Even still, when I say I am humbled, what I really mean is thank you for showing me your heart. Because that is what I have seen over the last 5 weeks, people's hearts .. and in a way that I have never experienced before.

I love the five languages books that breaks down how people show and receive love differently. I am so thankful that I have read it so that I could recognize the love that has come my way in all forms. When people open their heart to you, each presents it differently. With gifts, with words of affirmation, with acts of service, and with quality time. (Side note: the 5th is physical touch which I got from snuggles with my children).  I am not kidding when I saw the love in all forms.  Quality time with friends and family when I needed so desperately to laugh instead of cry. Encouraging words from friends that I never expected to hear from and of course from those that are more present in my life right now. Acts of service by those so willing to help out with Whitaker or bring meals. And of course all the amazing gifts, no matter how small or how large -- they all showed the giver's heart.  I had one friend that was willing to sit with me at the hospital for hours when she thought I couldn't drive yet. I'd embarrass her if she knew but I cried when I realized her intent. The notes from friends that were too far away to be present will flat out make anyone bawl. The care packages, the e-gift cards, the texts, the phone calls, the visits, the help around the house, the meals, the LOVE. It was and is still so overwhelming.

And here we go... Mary-Peyton goes a bit religious on you.. (Im normally a lot more private in my faith).

So many times throughout the first 2 weeks of the NICU but especially on that Tuesday night when things went south for Caroline and I was there to witness it, I was so at a loss for words that I couldn't even find the words to pray.  So my prayers were very simple, "God, you know my heart". And in return, I have a beautiful, healthy girl and He showed me everyone else's heart too.

Today is my 31st birthday. I have never felt more complete. Thirty-one will always be the birthday of reflection and remembrance. It marks the time in my life when I know exactly what it is important in this life and how I will live to return the "open heart" kindness that I have felt over the past 5 weeks.

Caroline is thriving and is on her way to match her big brother's sassiness. Thank you to all for following our little journey. It is insignificant in comparison to what many others experience.






Wednesday, September 10, 2014

Getting in the Groove


We have found our NICU groove.. the security guards know me by name and it is feeling like an extension of our home. It's only been 16 days since Caroline was born, but somehow it feels so much longer. My hormones have leveled out significantly so things aren't looking quite so foggy.  Even still, a friend asked me this morning how everything was going and I just kind of threw my hands up. There are experiences that you really can't find the right words to describe how you are feeling and this has been one of them. Almost the type where you just start to laugh even though it's really not funny at all. I still am having to take one thing on at a time. My brain and emotions can only process and hold together a small amount of information at a time. Not the best quality right now as we are trying to get the house ready for Caroline to come home in the next couple of weeks. We are painting and playing musical rooms/closets so stress levels are a bit high in this house. Anyone want to take Daniel out for a drink... my treat :)   ?!?  

Caroline has been doing really well.  We are still working on eating.  She is a breastfeeding champ, but tires easily.  When I walk in to her room in the mornings she perks up and immediately begins to show feeding cues. I love that she knows me now and yet breaks my heart that I can't be there for every feeding. They have added fortifier to my breast milk to add a few nutrients and calories which she takes by bottle/feeding tube. We already have a picky eater. She does not like the taste of the fortifier. She scrunches up her face and spits the bottle out. So that is causing a little set back because then she has to be tube fed... and we can't take her home until she doesn't require the tube.   Her brady episodes are much further apart and she hasn't had the big "official" ones in awhile. We are still working on regulating her temperature so for now she is still in her little incubator. They want her expending her energy with feedings and not temp regulation. 

So really.. she is doing so incredibly well. What an amazing thing to see her develop into an interactive little girl as opposed to what we saw 2 weeks ago. 

I believe Whitaker is going to get to see her this weekend for the first time.  If you have read the first posts you know that kids have to be 4 in order to enter the NICU. Caroline is at an age now that they can wheel her to the door and he can just look at her. I've seen the little look on his face when people have unknowingly asked him questions about Caroline and being a big brother. He knows that she is too little to come home and has been a little bit sick so she has had to stay with the doctors. He has asked numerous times if he can please rock her to sleep. A mom (and friend) of a little boy in Whitaker's class stopped me at drop off and told me that she had asked her son what he did at school that day.  Her son's response, "Whitaker and I made medicine for the baby". Talk about a lump in your throat. 












Sunday, September 7, 2014

Daniel's Update: Sunday, August 7 (morning)

Good Morning All!

Caution, I'm riding a solid 5 hours of only semi-broken sleep (a good thing) and a 12 oz Red Bull (even better)... so this email may read the way it was written... jacked up.  I'm typing as quietly as possible, because everyone in my house is sleeping and I intend on keeping it that way!  On to an update on Little Bit....

Our little Caroline is doing much, much better.... though she's been a pin cushion the past few days.  She has the misfortune of having MP's veins, which means that even the amazingly skilled docs and nurses at Rex can't establish and maintain good lines in her.  But no worries, she's improved to the point where she doesn't need an IV anymore!  Well, that's half-true.  She could use it, but the doctors think that she'll do just fine maintaining her hydration through feedings, which was the main concern.  She's still got the NG tube (feeding tube in her nose) and that will be there until she can take an entire feeding through the bottle.  She's about halfway there... It's like Thanksgiving... you just NEED that nap after all the good food.  She's steadily increasing the amount she's eating (on a prescribed schedule)... but she gets lethargic and sometimes falls asleep near the end of the feedings.  I can't blame her.

We get lots of time with the doctors after their rounds here in the NICU, which is awesome (and needed).  Yesterday Steve stayed with us for about 10 minutes.  Not Dr. Parsons, just Steve.  An interesting vignette on caffeine... If you've read my previous updates you'll remember that Caroline needs caffeine as a little extra stimulatory reminder for her brain to tell her body to breathe. This response is usually functionally developed by 34 weeks, which will bethis Wednesday.  Steve let us know that yesterday's dose of caffeine would be her last.  Naturally, I asked if her Brady events had spaced out to the point where this wasn't needed.  He responded by informing us that the caffeine would stay in her system for 4-5 days (through the 34 week milestone) and gave us a nugget on the dosage.  If you or I were to walk into a Starbucks and order a Venti coffee (light roast = more caffeine), chug it down and toss back two more after that, our caffeine dosage would be about "6".  Caroline is getting a "20".  Sign me up.

So, Caroline is down to one tube and progressing well!  If she keeps this up, there's a chance she'll come home at 37 weeks (October 1; the day of the originally scheduled C-section). We're keeping our fingers crossed, but know this is marathon, not a sprint.  She's in very, very skilled hands and we're more than content to have her stay until everyone on the medical team is certain she's ready to embrace the craziness of 4843 Radcliff. 

Kind Regards, 

WDA

Saturday, September 6, 2014

Update + Previa


Sorry for the silence! The past couple of weeks have caught up with us and we hit a wall of exhaustion. At this point we are kind of just going through the motions... and I don't mean that as negatively as it sounds. We are just taking everything day by day.

Caroline has been doing really well. She is still off of her oxygen. She has increased her feedings to 26 mLs and will go up to 29mL tonight at midnight. Once she crossed over the 25 mark, they took out the IV. So that was today!  They did get the IV in by the way! It was in her foot for a day and that vein blew so they got it with only one prick in her arm. So thank goodness we get to take a break from that...but hopefully done (knock on wood).

On Thursday I got to start breastfeeding a little. I wasn't expecting much but was pleasantly surprised at how well she latched. We have been getting the hang of it since and are making progress. I know to expect feeding set backs but it feels good to be off to a solid start. I clearly do not birth babies very well (I'm 0 for 2)... so maybe I can ace the breastfeeding portion of maternity/postpartum.

She did hit her birth weight last night! Which felt really good to hear. I know the lack of IV fluids will likely cause a drop in her weight in the next day or two, but it still felt like a milestone to get back to 4 lbs 9 ounces.   I even took a picture of her little chart to document it :) Oh.. and she can wear clothes now! Let the fun begin :)







I started thinking that many of you know that Caroline came early but are not entirely sure WHY she came early.  Well, at my 18 week anatomy scan I was told I had placenta previa, or low lying placenta. I was put on pelvic rest and told I would have another scan at 30 weeks but not to worry, over 90 percent of placenta previa cases correct as the uterus enlarges. Though statistics were on my side I became increasingly anxious as my pregnancy went on that it had indeed NOT corrected itself. I was carrying Caroline high but felt so much pressure low. I was tiring easily, my stomach was upset, things just didn't feel "right".  Disclaimer: these are not considered symptoms of placenta previa. I just knew my body was out sync.

At 28 weeks, 5 days I took Whitaker to the track to ride his bicycle. I made it a half a mile and had to sit down. Exhausted, I laid down with Whitaker and took a nap after we got home.  When I woke up I went to the bathroom and was bleeding. I knew then that my previa had NOT corrected. I spent 6 days in the hospital on bed rest. It was considered a small bleed so they sent me home on modified bed rest with the promise that I would not veer more than 10-15 miles away from the hospital and that I wouldn't be alone. Within a week and a half I was back with my 2nd bleed... this one much larger. It happened at 1 o'clock in the morning and felt like my water had broken. My mom had come to spend the night with me while Daniel was out of town for the night. I had almost fought her coming to stay but I knew everyone would feel more comfortable with her at the house so I decided to give up that battle. Well it was a good thing she was there because I was able to jump up and drive myself to the hospital in the middle of the night. It was quite the "no-no" to drive but I had to make a decision because I knew the hemorrhage risks and how quickly I needed to get there. Waking my mom up would have delayed me a minute or two which could have been crucial.

So here I was again.. in the hospital on bed rest while Daniel took care of everything at home and my precious boy went through a second week of me not being present. It was heart wrenching. This round I decided I wasn't getting out of bed until they discharged me. On Monday, August 25th I basically got the clear that after 6 days in the hospital for the 2nd time that I could go home on the 26th. My body had different plans.

Monday, August 25th was a great day. Whitaker spent several much needed hours with me at the hospital. We snuggled and went down to see the fish and had some good quality time together. That night, my friend Sara had come to visit. Several times while she was there I felt twinges of pain. I had been contracting a little a few days before and this felt different than that. I knew that if I called the nurse right away they 1. would have wanted me to just track the cramps and 2. delayed my discharge date. I also didn't want them to think that I was making something out of nothing. After Sara left, I sat  very still and tried to see if there was a pattern to these pains. Within minutes I felt the same sensation that my water had broken. I ran to the bathroom and the whirlwind began. I won't go into too much detail but Im sure you have gathered that I had a 3rd bleed.. much worse than the first two.  When you pull the nurse chord in the bathroom and tell them you are bleeding... they come fast and they come in a pack. This all began at 9:35 pm and our Caroline was born via "emergency" c-section at 10:17pm. It was a very overwhelming chain of events and I held it together fairly well until Daniel walked into the OR (2 minutes before Caroline was born). I cried at the relief of having comfort by my side. Daniel has a strange way of staying calm in the most stressful situations. But when I heard Caroline cry, well .. I bawled.

Last picture as an only child!  (taken on Mon. August 25th) 







Wednesday, September 3, 2014

Big Day

Notice anything different in this picture?!!?


I certainly didn't when I walked in.... but Caroline is off of her oxygen!! No ventilator, no CPAP, no nasal cannula. My baby girl is breathing all on her own. 

It was a big day for Caroline. She came off of her oxygen at 9 AM. Was blessed by our minister, Greg Jones, at 9:30 and had her very first BOTTLE at noon. 

I did try and do kangaroo care with her but her oxygen levels dropped. Being the first day of breathing on her own, I did not want her to work too hard. So I only got about 15 minutes of snuggle time today as opposed to my normal 2x daily for 1.5 to 2 hours each time.

Caroline had been giving feeding cues so we got to try the bottle instead of the feeding tube. She tired out pretty quickly after the first half but the nurse helped me stimulate her awake and taught me how to get her to drink the last bit. When preemies Caroline's age start feedings they can suck, they can breathe, and they can swallow.. but they can not necessarily do these 3 things all at the same time. So she had to work really hard for just 11mL of breastmilk. 



I DID manage to get a picture of Whitaker this morning on his first FULL day of school. He did great today!  But he wouldn't pose for picture. This is the best I could get but he does look so sweet so I was ok without the truly posed picture. 

My precious boy. I am so proud of him.

I held it together all day until I went to lunch and grabbed a little lovie from the gift shop for Caroline's roomie, a little girl named Savannah. Savannah was born about 8 hours after Caroline so they were neighbors in the the admittance/critical care room and then eventually roommates. Her parents were so nice and it was so nice to have another couple that Daniel and I could relate too in an unfortunate situation. And Savannah's mom witnessed my baby crash on that 2nd night and watched my complete emotional breakdown. There was a bond there. When I was writing in her little card it hit me that that little bit of comfort and familiarity is not going to be there tomorrow when I walk into the NICU. Don't get me wrong, I am so excited for them that they get to take their baby girl home. She was 36 weeks at birth so it is time.  But I couldn't help but feel the sting that my sweet Caroline does not have a discharge date. I had to remind myself of the huge strides that Caroline has made over the past 9 days and how proud I am of her. As my nurse said last night, "Caroline ordered just about everything on the menu". And here she is just a week later doing all of these new things. All this in mind, I still strategically left the gift so that they would get it when I wasn't there. I would have cried. (more).


Caroline inherited my puny veins and isn't doing well with the IV.. Well... actually they can't even get the IV in. My baby girl was a pin cushion that resulted in lots of blown veins today. It was heart wrenching. Every nurse in that NICU stuck her trying to get it in. Caroline seems to be asking for that PICC line.  She still needs fluids until she can drink 25 mL to keep her hydrated. Her belly line had to come out today. I left Caroline worn out from all of it and snoozing hard. I am calling up there soon to see how the evening unfolded. I was promised she wouldn't go through that again. 

Overall though, it was a good day with lots of progression. Progression is the only thing that is going to get her home so I am going to focus on that!


This is what I did when I got home from the hospital. What a shift :)
It's a truck train. 







Daniel's Update: September 3 (early afternoon)

Hi Folks, 

Sorry for the lapse in updates, no excuses, just busy and tired.  I  assume MP's keeping everyone abreast of what's happening in the Special Care Nursery... (I'm going to keep calling it the NICU, because "Special Care" makes it seem like you want to stay and I want her here at the house where Fanny and the solicitors ringing doorbells can acclimatize her to life on the hardcore streets of Midtown.

A lot has happened in the past few days. I'll forget something, but the 30,000 foot synopsis is that she's made good progress.  Not only is she much more alert and mobile (ugggh... this doesn't bode well), but she's been moved again; this time it's to a party suite on the club level and she's popping bottles with her friend Savannah Grace.  Now, don't just think that the aforementioned comment was simply a deft remark referencing pop culture... she's actually drinking from a bottle now!  She still has the nasal tube that runs to her stomach, just in case, but she's eating and eating well!

Oh yeah, she's not on oxygen anymore either!  Mental Prep:  Sometimes premies go on and off oxygen, but this is a very positive step.  I got to participate in the Kangaroo Care (skin-to-skin contact)... a very interesting 15 minutes for me.  Not only was she audibly irritated at my lack of milk-bearing capabilities but she was crawling all over the place.  Now... this is cool, don't get me wrong, but I had been read the Riot Act about not letting her belly line slip out, because that is a major problem that the nurses can't fix.... and this feisty little on is clawing all over me trying to flip over... all the while pulling her nasal canula out about every 7 seconds.  When MP does the Kangaroo Care, she sleeps... go figure.  She's gaining weight and looking at prom dresses, so things are getting better.  Daddy bought her a new hat, so the spoiling has started.

The docs still don't know if they're going to have to insert a PICC line, but they've settled for an IV as long as her feedings go well.  The heart murmur that was medium/large is now faint and will likely close in due time.  I'm headed to see her now and I'm excited!... but wanted to shoot you all this note.

THANK YOU ALL!  Mainly for the prayers and words of encouragement, but also for the food, flowers, child care, offers to mow the yard.... but mainly for the prayers.  Lambie is still keeping vigil over Caroline, along with her little red and pink cross of stickers on her name-tag.... and soon a little sticker that says "Petunia", her nickname that MP hates and I LOVE!  Keep those prayers coming, if you can!  She's doing much better and she's still got another month or two in there, but today she's technically 33 weeks old... I'll take any milestone I can.

Love to All, 

WDA

Tuesday, September 2, 2014

Daddy/Daughter Pictures


We are very slowly adjusting to our new normal. And by slowly, I mean at a snail's pace.  But we will get there.  My doctor told me that I could drive between 7 and 14 days from delivery as long as I was off pain medication and could slam on the breaks if needed. Well there is nothing like being away from your baby to provide a little motivation. So I went cold turkey off of those pain meds and drove for the first time last night. Being able to get to and from the hospital is huge for me. My amazing friends and family have both taken me and offered to take me, but there is just something about being able to go and come as needed that has taken away a portion of my anxiety. But little did I know that the pain meds weren't also numbing pain, they were knocking the edge off of my emotions. So basically I just cry... a lot ... for no reason. I'm really okay though. I think a lot of it is hormonal :)

Whitaker started back preschool today and I cried as we walked in the door! I was one of those women that wore my sunglasses inside, but really it was so Whitaker wouldn't see my tears. They were literally streaming down my face. The anxiety on Whitaker's face triggered my crying spell.  Poor thing has my nerves and then to throw in everything that has been happening and I just want him happy. Of course he was much better off than I was and it only took a couple of minutes for him to acclimate. The assistant director emailed me a picture of him smiling in his classroom today, which meant so much. She knew I needed that security. He getting so much less attention right now from me but is so much stronger than I give him credit for. Speaking of no attention -- I didn't even take his "first day of preschool" picture. He wore a race car shirt and athletic shorts... so far from  the normal first day picture. I just couldn't argue with him today. I will take one tomorrow as his first full day! (thats the one that really counts, right?!)

Caroline is doing really well (knock on wood). She had her 3 doses of Indocin, 12 hours apart, to help with the PDA (see Daniel's update for what exactly that is). She went from a medium to large PDA to a small one. The doctors reported this as great news and hopefully it will close up on it's own from here. They started her feedings back today at 6mLs. She is tolerating this amount well and will go up to 8mL at midnight. The neonatologist and the nurse practitioner (who evidently is a preemie picc line master) are still debating on if Caroline really does need the picc line. I think they are waiting to see how feedings go before they make any bold decisions. Caroline continues to have her bradycardia, "brady", episodes. But they are getting further and further apart. I have held her 2x now where she hasn't "brady'ed" on me. I see this as an improvement.

Otherwise Caroline is continuing to get stronger by the day. I continue to be so humbled by the prayers and outreach from our little community. If I do not answer calls or texts, please please please do not take it personally or think for one second that I do not appreciate it so so much. My schedule has just been all over the place and I can't talk on the phone in the NICU. I am so lucky to have wonderful people checking in on me and I never want that to be overlooked. Please bear with me!

Daniel held her for the first time yesterday. Well, the first time since the OR room. He was actually the first to hold her. I really hope I can get him to write how he felt when he held her because I can not do it justice. ... let's just say she was quite the wiggle worm!

Here are a few pictures!





I love this last one of her looking up at him!











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! 

Onward, 

WDA










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).

Best, 

Daniel

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!
https://www.youtube.com/watch?v=4P31SX3CBX8

Dad to Dad video: https://www.youtube.com/watch?v=3Ubftv9TWU8





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.

Best,


Daniel

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.

Best,

Daniel