Thursday, September 29, 2011

Adeline and Pops

Another good day!  Adeline kept all her feeds down, and she got to go on another stroller ride outside.  Adeline is currently enjoying night #2 with Pops (my dad).  I think he really enjoys staying with her, and it allows me a good night of sleep.  Even the nurses on the unit refer to him as Pops.  Thanks Pops!!  I'm sure Adeline is already working on getting him wrapped around her finger.

Pops with his first granddaughter

Zonked out after a feeding and real clothes on!

Wednesday, September 28, 2011

Back to the Good Stuff

Like my pretty outfit?! 

After a very frustrating day yesterday, the doctors finally decided to let Adeline return to breast milk.  She didn't keep any formula down yesterday, and it was so hard to watch her get sick.  I can't imagine how her little body felt.  We all agreed that she obviously does not tolerate the nonfat formula - I had been thinking this all along.  The reason why she had to switch to the nonfat formula in the first place was because her lymph nodes in her chest area were leaking fat as a result of surgery so she could not have breast milk.   She was only losing a very small amount, and the hope is that a week off breast milk has given her lymph nodes time to heal.  The original plan was for her to be on the nonfat formula for 6 weeks. 

After talking to her surgeon yesterday about all of our frustrations with her feeding and not truly seeing any progress, he made the decision to switch her back to breast milk.  Once again yesterday he told us how great her heart looks :)  I gathered this morning that once he makes a decision, everyone basically says yes sir.  I'm so thankful that we had the chance to talk to him yesterday because I was preparing myself for battle this morning during rounds to push for a change knowing that the formula simply wasn't going to work.  Everyone on the unit is very hopeful that she'll do well with the breast milk  and won't have any fluid buildup in her lungs due to losing fat.  We do have plans B and C made just in case, but I'm not anticipating us needing them.  Hopefully we'll now see constant progress instead of being stuck at a standstill.

No tubes at all!  Brief tubeless moment while the nurses were changing out feeding tubes. 

 Adeline is currently on feed #3 of the day, and so far she has done great!  I'm very optimistic and gave her a bath to get all of the yucky formula off and even dressed her in her first real shirt.  It's a big day for her :)  And to add to the good news, we got moved again and now have a room twice the size of our old room with a 3 window view of the Cooper River Bridge and sunlight!  Oh how nice it is to have natural sunlight in the room and see the world.  

It's hard to tell from the picture, but I think her hair is starting to have some red in it!

Monday, September 26, 2011

Little Diva

Guess what!  I got to actually venture outside today with my mommy and daddy and see the real world!  We couldn't leave hospital grounds, but I finally felt sunlight!  My daddy even bought me my first pair of princess sunglasses to wear - I think I might have a few years to grow into them.  I'm pretty sure I'll be able to convince him to buy me a lot of stuff along the way :)  We only had 30 minutes because that's all the time I have in between feeds, but it was the best 30 minutes of my day.  Hopefully we can do it again tomorrow.  I did get some funny looks from people.  They were probably wondering what was a tiny baby doing in such a big stroller.  That or they really wanted my sunglasses.  I think I've set a new fashion trend for pink princess sunglasses.

The doctors compressed my feeds to 2.5 hours today so I'm enjoying the 30 minutes break in between.  I think it's even helping my stomach because I've had a good day of handling this formula, but it does smell pretty bad!  I can't taste it yet, but I'm not having too high of hopes.  I have heard that once I get to finally go back to breast milk that it'll taste a whole lot better.

Daddy and I are having a slumber party at the hospital tonight so Mommy can get some sleep at the house.  I'm pretty excited about it, and maybe I'll even sleep for him!

Here I am staring at my mobile, but as you can see, it hasn't fully taken the place of my pacie.  

Sunday, September 25, 2011

Hopefully Seeing Progress

I better not be jinxing us by the title of this post...but it seems that Adeline is making some progress with her feeding.  It's slow progress but hopefully we're moving in the right direction.  After a few rough days, she seems to be tolerating the formula a little bit better.  After my last post, the doctors cut off all of her feeds for well over 12 hours to give her stomach a break and to start all over again.  Adeline was not a happy girl that day because she was starving.  They've slowly increased her feeds, and the next move is to begin to compress the same volume over a shorter period of time (she's still getting continuous feeds).  She is still having a hard time keeping it all down, but we're starting to see some progress - slow as it seems the majority of the time.  There is no science as to how the doctors work to make feeding easier for cardiac babies - it's very much a constant wait and see game and a lot of patience.  Hopefully also being on the full regimen of reflux meds will help her out. 

Knowing that she's doing so well heart wise and we're able to care for her, it can be very difficult to have the patience we need right now.  We've had some frustrating days.  We can see the light at the end of the tunnel, but we're not there yet.  Adeline will let us know when she can tolerate the feeds and is ready to go home.  Andrew had her in the little bouncy seat by the window today so she could see the sunlight.  I kept telling her that there is a real world out there, and she'll really enjoy it once she sees it! 

In other news, she had her first "real" bath given by us yesterday (although it was more of a pat down with a wet washcloth, but we'll count it).  She's also been on 3 stroller rides in the past few days.  They were trips down to radiology and for an echo, but she seemed to enjoy seeing life outside of the unit.  She looked so tiny reclined in the stroller, and she had the constant look on her face saying "what in the world are you people doing with me?" Make sure to look at the pictures in the post below to see her in the stroller. 

Saturday, September 24, 2011


Will post a real update tomorrow but for now wanted to finally get some new pictures on here!

First stroller ride - just down to radiology but for now it's very exciting!  Like how they strapped me in??

Wide awake on my 3 week birthday

Stretching after being unswaddled

Sleeping peacefully now that my new room actually has a real window with real sunlight coming in!

What I spend the majority of my days doing

Not so sure what to think about this bouncy seat that they put me in...

Thursday, September 22, 2011

Two Steps Forward, One Step Back

This seems to be the theme around here - a little bit of progress and a little bit of a slide backwards.  Adeline's doing great post heart surgery with her healing.  She got her chest tube pulled today as well as her pacing wires which means she has no more heart lines!!  Having the chest tube gone also makes it much easier to hold her, and I'm sure she's more comfortable without it in there.  We also no longer have to listen to the sound of a waterfall from the seal on her chest tube.  She will keep her PICC line and external monitor  (basically just stickers attached to a lot of wires and a little box) until we're discharged to go home.  Compared to what all she had at one point, this is nothing. 

The biggest hurdle we're facing right now is her feeding.  She started throwing up yesterday after feeds (still through feeding tube), got better through the night, but then started throwing up again today.  It's so hard to watch her little body throw up.  Unfortunately, this is very common with heart babies.  The doctors think she still needs more time to adjust to the new formula that they have her on.  They've decided to move her back to continuous feeds so she's getting a little bit of formula constantly.  Hopefully her body can adjust to the formula, and then we'd move forward with compressing her feeds again.  Her feeds have to be compressed to an hour before she can have a swallow test done and then start to feed by bottle.  So far she hasn't thrown up recently, and we're praying for a calm night with her feeding. 

Her occupational therapist came by today, and I learned little exercises to do with her mouth to stimulate and strengthen her mouth muscles to prepare her to eat orally.  It's amazing what all they do to try and make feeding easier.  I have homework for tonight to continue to do her exercises with her.  She still loves her pacifier so hopefully when the time comes for her to finally get a bottle, she'll do well with it. 

The big excitement of Adeline's day was that she got to go on two stroller rides!  She had to go for a chest x-ray and an echo.  We wheeled her off in a stroller, and she learned there actually is life outside of a hospital room!  I can't wait to one day soon get her outside in her own stroller!  Both the x-ray and echo looked great so that's more good news.  She was also the model patient during her echo - she slept straight through it. 

My mom is here for several days, and she spent the night with Adeline last night so I could get a good night's sleep back at the house.  I feel slightly more like a normal person today, and it was just nice to get out of the hospital for a little while.  The walls in Adeline's tiny room can definitely start to close in on you.  We're now referring to her room as a fish tank.

Sorry for the lack of pictures still - my camera cord should be making it's way here tomorrow so I'll post some new pictures then.  We've decided she's a very curious little girl - always looking around with her big blue eyes.  She's also like her mommy - she doesn't want to fall asleep because she's afraid she'll miss out on something. 

Please pray for Adeline to make progress with her feeding.  It's hard to take the setbacks, but it's even harder to watch her in pain.  We just want her to feel better and for her tummy to not hurt.  Now that I am constantly focused on and worrying about her feeding, I almost forget at times that she did have open heart surgery a little over a week ago.  In the big picture, I know that is a good thing and evidence of how far we've come to be worried about her feeding now and not her heart.  Hopefully taking her back to continuous feeds will do the trick and give her a little more time before moving forward again.  I keep telling her to keep her food down because we need to fatten up her long skinny legs and put some rolls on her.  I do think that once she actually gets to eat my mouth, she'll be a big fan! 

Tuesday, September 20, 2011

Movin on Up

Well really down as in the cardiac step down unit, but we did move up 4 floors!  As of last night, Adeline now has her very own room complete with a tiny couch for me to sleep on.  Our new quarters are tight, but we'll gladly take our own room where we can hold her and actually take care of her.  Last night as she was crying, Andrew looked at me and said "well here we are, welcome to parenthood."  We weren't expecting to move until today or tomorrow, so I was surprised when they told us yesterday that we were moving. 

I'm having to adjust to a new normal here, and probably the biggest adjustment is not having the constant monitors to always know her numbers.  Adeline is now hooked up to a portable monitor so her nurses know her numbers, but we don't.  So no more constant beeps, and as much as I hated them as first, they somewhat became a sense of comfort.  I guess we do have to break loose of them though since we won't be going home with any monitors. 

Adeline seems to really like her new room.  She has a new love - her mobile!  It might even give her pacifier a run for its money. 

The main focus on 8D and what's keeping us from going home is Adeline learning to feed.  She's still on a feeding tube.  She's done well with her compressed feeds today, and as long as she continues to do well, we're getting closer and closer to starting oral feeds (hopefully in a few days).  They did discover today that she is going to need to be on a special formula for six weeks before she can go back to breastmilk.  So for now the breastmilk stockpile will just continue to grow.  It's another small hurdle, and we know that there will most likely be these small hurdles along the way with her feeding. 

I have to admit that since we're now in her own room, I'm ready to go home.  Trust me, I know she needs to learn to feed well because heart babies tend to have feeding issues.  Thankfully, we'll have a lot of experts working with us to get us ready to go home. 

Last night little Adeline was wide awake until 2 am so who knows what tonight holds for us!  She's slept most of the day and is sleeping peacefully now so I'm somewhat anticipating a little night owl.  After two weeks in the PCICU and open heart surgery, I'll gladly take feeling like a real parent to a newborn :) 

I'll post pictures of her new home as soon as I get some uploaded onto my computer. 

Monday, September 19, 2011

No Words Needed

I'm not so sure about this hat, but at least most of the wires are off me now!

Daddy calls these my flamingo legs - long and skinny!

Saturday, September 17, 2011


Another good day for Adeline!  Andrew and I feel better about her vocal chords after talking to some more doctors and nurses.  They were reassuring in that this can be typical, and in most cases function returns, but you have to be patient.  The ENT team is doing a thorough scope Monday, so we'll know more then as to whether it's a temporary or more permanent thing. But for as many hurdles as she has already overcome, we have to feel confident that she'll overcome this hurdle as well.  We know that she is our little miracle child and the answer to so many prayers. We could already tell a difference today in Adeline's cry - it's still hoarse, but it sounds better and stronger. So, we hope this is a positive sign.

We joked today that we should have taken a picture of all of her medications, pumps, and lines each day to document them as they decreased.  As of now, Adeline is only on one medication!  She's on full feeds of breastmilk through her NG tube, and hopefully in a few days she'll get to eat by mouth.  If all goes well, her last lines will come out either tomorrow or Monday, and then we'll get to move to the goal destination of 8D (step down)!  Her nurses keep telling us to rest up now because we'll get to take care of her once she's in 8D and feel like more normal parents of a newborn.  Andrew and I worked today to master our tag teaming of changing diapers - Adeline is definitely not a fan of having a diaper changed but then again she also doesn't like having a dirty diaper either. 

We cannot thank you enough for all of the prayers, love, and messages for our sweet Adeline.

I like my hat

Adeline and her friends

A Good Day and a Bad Day

Happy Two Weeks Adeline!!

Adeline continues to do well, and the doctors are very pleased with her progress.  However, yesterday we did receive some unexpected news.  Since surgery, Adeline's cry has been very weak (she had a good cry prior to surgery), and the doctors are concerned that her vocal cords could have been damaged during surgery or related procedures.  ENT came yesterday to check her vocal cords.  They weren't able to get a great look because she wasn't very happy about being scoped, but they thought the left vocal chord was not moving.  Apparently, the nerve controlling the left vocal chord sits right next to her aortic arch that was repaired.  ENT is going to check her again on Monday to see if they can get a better view.

We were both incredibly shocked to hear this.  After so many days of good news, it hit us pretty hard.  We are so thankful and blessed to have been used to getting good news because that's not always the typical life in PCICU.  But at this point, it's now a wait and see game.  The doctor told us that in most cases function comes back in the vocal chord if it's just been damaged - but it could take a few days or even a few months.  However, if the nerve itself was severed during surgery, her left chord will never regain function.

We're told that generally when something like this happens early, babies compensate well.  If it's permanently damaged, Adeline would have to be closely watched for respiratory and feeding issues as well as receive speech/vocal therapy. We ask you to please pray for her vocal chord to get its function back.  We all know she's a fighter, and this is one more hurdle that she can hopefully overcome.

We also had some good news yesterday.  Two more of her lines were pulled so now she only has 1 heart line, her PICC line, and her chest tube.  She's also able to start her feeds again (through the NG tube) which makes her a happier baby.  She's getting all the nourishment she needs, but we can tell she's one hungry little baby, and we need to fatten her up!  Also, we've started to hear talk of moving to the step down unit.  If all goes well, this will probably happen sometime beginning of the week.  She'll then have her own room, and we'll be able to hold her and take care of her!

All snuggled up with her bunny.  She has lots of friends to keep her company!

Thursday, September 15, 2011

No More Vent!

Well I walked back into the unit to be greeted by her nurse saying "Now don't be alarmed but we decided to go ahead and pull the ventilator." I found Adeline wide awake and appearing much happier to finally not have a tube down her throat. It's so wonderful to see her beautiful little face again! Her nurse already sent off her first blood gas, and it came back great which means she's doing well breathing on her own. She does have a nasal cannula in to help remind her to breathe, and they will slowly wean her off this. She's sneezed a few times and has been working quite hard to bust out of her baby burrito. The big tube's out so now it's time to start to lose all of the other lines!

Slow and Steady

We've all been kicked out of the unit while they do a procedure on a little boy so I'm going to do a quick update. Adeline's continuing to do very well! She's passed all of her CPAP trials, and the ventilator is set to come out late this afternoon. She has some fluid on her lungs so they've given her extra time with the ventilator to try and get more of the fluid off her lungs. She's still on the quick end of the spectrum for getting the vent out. We can tell that she does not like the ventilator and wants it out. It's very hard to watch her try and cough the ventilator out. The nurses have put little pink mittens on her hands to keep her from grabbing at her ventilator, but she still somehow manages to get her hand around it so we have to keep a close eye on her!

She had an echo done this morning to check her repair. The cardiologist said that her arch repair "looked gorgeous." Everything in her heart looks good, and they will continue to closely monitor her mitral valve. Considering the number of echos that we have looked at of her heart, it's very easy to now see her arch repair and that she is getting the correct blood flow.

Instead of wearing a hat today, Adeline has a pink and white bow attached to the monitor on her forehead. I think she's looking to start a new fashion trend! Here's a photo:

And here are her mittens (from yesterday):

Tuesday, September 13, 2011

Another Good Day

Adeline continues to do incredibly well with her recovery, and we are beyond thankful.  It was amazing yesterday to realize that while she was in surgery so many people were praying for her (and many of them we've never even met)!  Andrew and I cannot thank you enough for the prayers - we definitely felt covered in prayers and continue to do so.  Driving over the Cooper River Bridge to the hospital this morning I couldn't help but keep thinking that I almost can't believe everything.  God has answered so many of our prayers already, and we are very blessed.  Adeline is one special little girl, and she continues to prove that she's feisty and a fighter. 

Yesterday was quite a long day and hopefully Adeline's biggest hurdle to overcome.  Dr. Bradley said that he was very pleased with the repair of her heart and that her heart looked as he expected.  I wanted to jump up and hug Dr. Bradley after he told us the good news, but I don't think he's the hugging type :)  I did learn from one of the nurses that he does love NASCAR which shocked me.  He's a surgeon that even all of the nurses and other doctors seem to be in awe of.  Receiving hourly updates on the pager from the OR was my lifeline during surgery yesterday.  The pages typically said something along the lines of "all is going well and she's stable."  Not a whole lot of information but all I needed to know to keep me reassured that she was doing well.  She had an echo immediately after surgery, and her heart looked great. 

I was so thankful to see her back in her special corner of the PCICU with one of my favorite nurses (and Adeline's too)!  She's hooked up to several more medicines and wires and is on a ventilator.  We were quickly given the run-down of all of her new meds and what they do and how the interact with each other.  We have definitely learned more about the heart and medications than we ever thought we would.  She's swollen from surgery but not as swollen as we thought she'd be.  I never thought I'd sit and watch to see how much she peed, but I've learned that much of her meds revolve around her amount of pee right now so I'm a little bit obsessed with her output! 

Adeline has had a great day today.  She woke up for a good two hours this afternoon and just stared at Andrew and me and held our fingers.  She definitely had a look on her face like "what in the world happened to me??" and we kept telling her how strong she is and proud of her we are.  Her nurse told me she's tickled at how well she's doing.  They did a CPAP trial this afternoon which allowed Adeline to breathe on her own, and the ventilator would have kicked in if she needed it.  She passed with flying colors and will have another two trials tonight.  If she passes these, the doctors are talking about removing her ventilator tomorrow, but we all know that Adeline is the one calling the shots at this point.  She'll let us know when she's ready to start having things removed.  We can tell that she does not like having a breathing tube (who would) and is somewhat agitated by it so hopefully she'll prove she's ready to be off of it. 

On a hospital note, yes I have mastered my way around the hospital now and Andrew wants everyone to know that he's thoroughly enjoying the hospital cafeteria (I tend to want to wander outside and still avoid the cafeteria).  I think he talked about his piece of chicken that he had at lunch for hours. 

Please continue to pray for Adeline's strength and healing as she recovers.  Her tiny body has been through so much, and just think how we would feel if we went through the surgery that she did.  Also, please pray for all of the babies and children in the PCICU and their families.  You quickly get to know the other families and their stories, and many of the stories make you put everything into perspective.  We've been blessed to be able to hold Adeline but many parents haven't held their babies yet, and they're older than Adeline.  You can tell when babies have bad days or setbacks and can just see it on their parents' faces.  Some moms spend the majority of the time alone for various reasons, and I can't imagine being on the unit by myself and have such respect for their strength.  Thank you thank you thank you for all of the prayers and love!  Adeline says she can't wait to meet everyone!

Monday, September 12, 2011

Surgery is Successful

After a little over six hours in the operating room, baby Adeline has made her way back to her special corner of the PCICU. She's still on a respirator and has more lines connected to her now than we can count, but she's stable, and her heart appears to be fixed.

We'll be posting more information as we have time tonight or tomorrow, but in the mean time thank you all for your prayers so far, and please keep them coming. The first 24 hours after surgery are incredibly crucial and while the weight of surgery has been lifted, we're still very much anxious.

I leave you with a photo of Adeline's personal cheering section:


Sunday, September 11, 2011

The Night Before

Well it's the night before Adeline's big open heart surgery, and I had planned on writing a long post, but I'm not sure I can put what all I'm thinking into words.  We met with her surgeon, Dr. Bradley, yesterday, and he explained the surgery and of course all of the risks involved.  He'll repair the 2 holes in her heart as well as correct her interrupted aortic arch.  Sitting in front of a surgeon who you know will fix your daughter's heart so that she'll be able to survive is an experience that's hard to describe.  Dr. Bradley is a very humble man and a man of few words.  We know that he is one of the best in the country, and we couldn't be more pleased with the hands in which we're placing our daughter tomorrow.  We know that God has already healed Adeline's heart to a certain point as her diagnosis is much better than we anticipated and that Dr. Bradley will be God's hands to finish the healing.

Both Andrew and I got to hold Adeline for a good while this afternoon.  She was awake most of the time, and she just stared at us.  I know we both could have sat there for hours holding her, but we get anxious with her connected to all of her wires.  Thankfully she was very calm while we held her.  Hopefully it won't be too long before we're able to hold her again and hold her whenever we want.

One of the cardiologists came by to talk to us today to make sure we didn't have any more questions about tomorrow.  He told us that Adeline is in the best condition possible going into surgery.  She has been so strong since birth so hopefully she'll do well during surgery and while recovering.  As long as she has her pacifier, she's very happy, but if she's not happy, she lets you know!  She has a good set of lungs on her :)

I think when we go home, I might need to take a few of her nurses home with us.  It's amazing how calm the nurses are on the unit, and they take such great care of all of the patients.  The cardiologists referred to them as "the best, most expensive baby-sitters" today when he was telling me that it's okay to not be there all of the time as I have to remember to take care of myself as well.

Anesthesia should come to get Adeline around 6:30 tomorrow morning, and surgery should be around 4-5 hours.  We'll receive updates about every hour so we'll know what's going on in surgery.  We'll update the blog as soon as we're able.  Tomorrow is a huge day for Adeline, and hopefully she'll come out of surgery with a heart that is all fixed.  Yes, I'm scared.  Having your daughter have open heart surgery at 9 days old is terrifying.  Thankfully she won't remember any of this.  Right now she looks so perfect to me, and she doesn't look sick at all.  But she is. She will not survive without this operation.

All of the doctors are very confident and keep referring to how well she's been doing so I'm going to try and follow their lead.  Please pray tomorrow for Adeline, us and our families, and especially the doctors and nurses who will be taking care of her.  We thank you for all of the prayers, and we know that we'll need the extra strength to get through tomorrow.

Friday, September 9, 2011

A few more photos...and videos

Per several requests, here are some more photos of Adeline. I've even uploaded a few videos. Please note that the beeping noises in the background of the videos are perfectly normal. Adeline, like all other babies on the PCICU floor, is hooked up to full-time heart and oxygen level monitors.

To access the videos/photos, click on the thumbnails below.

Video: A staring contest

Video: Taking it all in

Video: Falling Asleep

Photos - Sept 8th

Thursday, September 8, 2011

Surgery is Scheduled

I don't have the energy tonight for much more than about a sentence, but I wanted to let everyone know that we finally learned today that Adeline's surgery is scheduled for Monday morning.  She continues to do great and was awake for almost an hour this afternoon while Andrew and I were with her.  It's a wonderful thing to hear from the cardiologist that she's the "quietest" baby on the unit as in she's not causing any problems, and we keep reminding her that she needs to stay this way.  We're praying for a very quiet, calm, and restful weekend for all of us as we prepare for Monday. 

Wednesday, September 7, 2011

Day 5

For most, the ability to hold one's child in their arms is an everyday thing. It's just viewed as a part of the package. But for the parent of a child in some form of critical care, it's something that is hoped and prayed for daily but rarely happens. We all eagerly wait for the next chance to feel the weight of our child in our arms.

I was fortunate enough to hold Adeline for a few moments right after birth. The nurses needed an extra hand, and I was conveniently located. So I got lucky. Today, after almost a week, Christin was finally able to hold baby Adeline in her arms. After being continuously monitored, Adeline was viewed as consistently stable and able to leave her special crib for a brief time in Mom's arms.

Both of us realize this is probably the last time we'll be able to hold Adeline until several weeks after surgery, but I know Christin couldn't have been happier. She had a glow to her today I hadn't seen all week.

Helping add to the glow was the news that while in utero things don't always appear as they are on an echo. If you think about it, you're taking a picture of the inside of a person inside of another person. After finally getting some clear pictures of Adeline's heart, it was concluded that Adeline does NOT suffer from Double Outlet Right Ventricle (DORV). Instead, she has an additional vein running from her brain to her head - a vein that typically dissolves during development. From the outside of a person inside of a person, it looked to be a misplaced artery; however, it wasn't.

In addition, the other major source of concern, her Mitral Valve, appears to be above the threshold of acceptable size, although it's still on the small side. What this means is that our greatest concern, that of her heart being forced to be single (vs. double) ventricle looks to not be the case. This is an enormous win for Adeline and gave us all an amazing sense of joy and hope today.

Of course, we have to keep in mind that once Adeline's heart is opened yet another story can unfold, but the positive news is what we want to keep thinking about.

So where does this put us? Adeline will still undergo open heart surgery this Friday or Monday for the repair of a VSD and ASD (holes in the walls of her heart), along with the repair of an interrupted aorta. If things are as they appear in the multitude of echos performed this week, Adeline will only have to undergo a single operation. Up until now we had been planning for a two or three phase surgical plan. Having a single operation is amazing. There is simply no other word to use.

After surgery, Adeline will return to the PCICU for several weeks and then be moved to a pediatric cardiac step-down unit where Christin and I will be able to stay in a special room along with her. This unit is designed to help bridge the gap between critical and home care. It is also the final proving ground for Adeline's ability to feed on her own (vs. feeding tubes and IV's).

For now, we pray and ask for you to pray that Adeline's surgery on Friday or Monday is successful and that the diagnosis received today holds true.

As a final note, thank you to everyone who has been checking in on us. While Christin and I are still having trouble returning phone calls, text messages, facebook messages and emails, your thoughts, concerns and prayers continue to move us through this challenging and stressful time.


Tuesday, September 6, 2011

Day 4

I'm going to try and give a coherent update on Adeline but no promises :)  It's amazing how while trying to learn the life of living in the PCICU, you lose basically all connection with the outside world...I don't know what day it is, what's going on in the real world, and don't even ask me about trying to call people back.  Trying to manage the chaos of the MUSC cafeteria at lunchtime just about did me in today!

Adeline is doing amazingly well, and we hope that she continues with her strength.  It is so reassuring to hear from doctors and nurses how well she's doing and that she has not needed any assistance with breathing and is just on a few medicines right now.  She will receive a PICC line at some point tomorrow to establish a more permanent access line for medications and this will require anesthesia so that will be our first experience with a procedure.  Please pray that she tolerates everything well and that the PICC line is quickly put in her.

She was moved to the PCICU (pediatric cardiovascular intensive care unit) Sunday night.  She has more room there than in the NICU, and they have her swaddled so she seems happier.  She definitely enjoys sucking away on her pacifier.  She received her Annabelle's Basket full of goodies which is given through the generosity of a family who started an organization to give out baskets to all babies in the PCICU in memory of their daughter, Annabelle.  So she now has a pink bow on her hat and is snuggled up to a pink Minnie Mouse. 

We still don't know the plan for her surgery.  Hopefully we should know something tomorrow, but we are waiting for the big meeting with all of her doctors.  We're anxious for surgery and to get it behind us.  I continue to look at her and can't believe that she's actually my daughter.  She's just beautiful (yes I know I'm her mom) and when she's awake, she seems to be taking everything in.  At times I do want to pick her up and run out the hospital doors with her, but I know that she's happy and comfortable where she is, and most importantly, she's receiving amazing care.

Andrew and I are working on establishing a routine at the hospital, and it's a difficult life to adjust to.  We're getting there - as long as I don't continue to get lost in the hospital!  I think we're both slowly overcoming our fear of listening to the beeping of monitors as that's all we listened to the night before she was born - the beeping of her heart rate as we prayed it wouldn't drop anymore.

My parents are still here and have been a great help with getting us settled.  Andrew's parents left yesterday, and they were a huge help as well.  All of Adeline's aunts, uncles, and cousins were down here for her birth which made it really special.  It was very difficult when I was discharged yesterday to leave the hospital without our daughter.  As much as we were prepared for this, it still didn''t feel right to leave without her, but we will take her home soon enough.  It was strange to be back at the house last night - there were moments that almost seemed "normal" like we were just back at the house and then I would remember "oh yeah, I had a baby but she's still at the hospital." 

Adeline is such a blessing and a miracle.  She continues to prove that she is a fighter, and her heart makes her even more special.  As I looked around the PCICU today, I realized how every baby was another one of God's miracles.  Thank you so much for all of the continued thoughts, prayers, and love as we continue this journey.  The prayers are definitely working, and we know that there will be many ups and downs ahead. 

For those of you looking for more photos of Adeline, here are two albums Andrew uploaded earlier.  To see the entire albums, just click on the photos below.

Adeline Day 1
Adeline Week 1

Saturday, September 3, 2011

Adeline's Here!

After having contractions for over 30 hours, Adeline was born at 7:12 this morning. While we had a few scares Friday night and during the final minutes of labor with Adeline's heart rate, everything turned out great. Christin and baby Adeline are both doing well.

Adeline is currently in the NICU and will be transferred to the PCICU sometime Sunday or Monday, depending on when a bed opens. Speaking of beds opening - it seems everybody in Charleston wanted to give birth last night. Every room in L&D was busy and there was a waiting list several mamas deep. Regardless, the L&D team at MUSC was incredible and could not have taken better care of us. The NICU team is just as incredible and was kind enough to let me spend most of the day with her.

When I left to come back to the house for a bit to let Christin sleep, the Pediatric Cardiology team was conducting an echo on Adeline. The initial findings seemed to support what we were told while Adeline was still in-utero, but the formal findings and "game plan" will be shared with us in the next few days.

I'll be heading back that way in a bit, but just wanted to let everyone know that Adeline is here and doing great, especially given her condition.

For those keeping score, she weighed in at 5lbs 9ounces. In all the confusion I wasn't able to catch her length but I'm sure Christin did and will post that when she wakes up. With her being in labor for two nights straight, I know I hope she doesn't wake up til tomorrow morning- she's exhausted.

Thanks to all for your thoughts and prayers. While having Adeline here is a miracle and blessing in itself, we still have a long road to go.

I leave you with a couple of pictures:

Adeline at 10 minutes old

Adeline in her NICU crib