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.

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. 

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

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) 

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

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!

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!