7 months

Amazing! 7 months since you were born, Sweet Adeline.You sit without support, roll over in both directions, jabber loudly, pass objects from hand to hand, and you love to laugh and smile. We started solids a few days after you turned six months old, and so far, there isn't anything you haven't liked. You still only have your two bottom teeth, but I think it won't be very long until you get your top two. You have sprouted hair that sticks up in the back and all over. Aunt Lindsey says your hair is just like your cousin Gaitley's was when she was little so you might end up with straight hair. We'll see. We finally moved you into your crib this month, but you are still in our room. We moved your crib in our room so you and your sister wouldn't wake each other up at night. You still get up once a night, but I think it is routine now since we woke you up at 4 am for almost 7 months. You had your 6 month checkup at the end of November and were 25-50% in height at 25 1/2 inches and 10-25% in weight at 14 lb 5 oz. You are growing beautifully! We love you!

Cardiology & ENT Update

Addie had a follow up cardiology appointment yesterday and an ENT appointment today. The cardiology appointment went great. She had an x-ray and everything looked good so Dr. Ikemba took her  off her diuretic, Lasix. They also discontinued her iron yesterday. She is only on Prevacid, Atenolol, and Aspirin now. So awesome! Her sats were 89 and she weighed 15 lbs. She has remained on her weight growth curve, which is the goal. We don't have to go back to the cardiologist until March 21. I am so excited about this!! 3 months of no clinic. Amazing. In March, she will have an ECHO and EKG. Also, they will probably determine whether or not she needs to be on Atenolol anymore. I am praying she has grown out of her SVT!

The ENT appointment today did not go as I had hoped. They were checking Addie's paralyzed vocal cord to see if it was repairing. Unfortunately, it is not. Dr. Brenski, the ENT, said there was a 25% chance of repair now until Addie is a year old. We will go back in June to check. In June, they will determine whether or not her left  vocal cord is a total loss (I can't remember the exact words Dr. Brenski used, so I will just say that) or not. To say I was disappointed doesn't cover it. Here is the thing though; Addie isn't aspirating or having trouble eating so she is handling the paralyzed vocal cord very well. Her right vocal cord has most likely compensated for the left vocal cord. She is loud and will hopefully not have any long term effects from this. Dr. Brenski said there was no way to know right now what the long term effects would be, but there still is a CHANCE for recovery. Dr. Brenski said she felt like Addie was just going to be one of those kids that you wouldn't even know that her vocal cord was paralyzed (if it stays that way).

Please pray for Addie's vocal cord to repair. I had a hard time today not showing my disappointment that it hadn't begun repair. I just don't want this to be one more thing that she has to deal with. We do feel very blessed that it isn't affecting her in any way now though.

Happy Thanksgiving

As we near the one year anniversary of the beginning of Addie's heart journey, I wanted to post Scott's testimony from Thanksgiving. He was one of 3 Wilshire members to give testimony at the Thanksgiving service. He did a fabulous job. It is a great reminder of where we were one year ago and where we are today. Happy Thanksgiving!

http://www.wilshirebc.org/files/1613/5344/6502/11-scott-prewett.mp3

6 months!

6 months has been a very good one for Addie. She rolled over a few days after she turned 5 months old, her two bottom teeth poked through, she says baba, mama and dada, and she had her second surgery and flew through recovery. I should also say that she actually says "mama" to me when I walk out of the room or she wants to be picked up. It melts my heart, for sure.  It has taken Addie about 3 weeks to get back to her pre-second surgery self. I think a lot of it had to do with the virus she got a couple weeks ago, but she has mostly returned to the happy baby she was before. We have yet to start solid food, but that is something I plan on doing soon. We are still waking her up to eat in the middle of the night because she lost about 10 oz when she was in the hospital for the virus.  As we go into this Thanksgiving holiday, we feel we have so much to be thankful for. Not just this week but always. These 6 months have been nothing short of amazing. God has definitely been listening to the prayers of all his people. Thank you! 

We are home!!

We got home yesterday around 3. Yay!! Addie was so excited when I got her car seat out of the car and she saw our house. She smiled for 10 minutes, I think. She has been in much better spirits since we have been home and is definitely on the mend. Thank you all for your prayers and support. Your words of encouragement helped so much!

Still here

After 3 full days in the hospital there still isn't a definite answer to what is going on. They are still leaning towards bad reflux. They think Addie might have had a virus earlier in the week that might have irritated reflux. Weird since she really has no previous history of reflux. She was on IV fluids and Pedialyte for about 26 hours day before yesterday. We started feeding her formula around noon yesterday and around 5 she started acting the same as she was Tuesday. Uncomfortable and super fussy.  We are definitely going to be in the hospital tonight. I sure hope we get it figured out soon because I am ready for Addie to feel better and for us to get home. My mom is coming today to stay with Ellie so Scott and I can both be here with Addie. Prayers for an answer!

Back so soon?

We were admitted to Children's yesterday, and will most likely be here tonight.  Addie hasn't been feeling well since Monday and yesterday she seemed worse. She is uncomfortable, breathing funny at times and wakes up screaming. She was also really sleepy yesterday. She was either crying or asleep most the day yesterday. They have ruled out the big stuff, thank goodness. Her ECHO, EKG, and X-ray were all fine. There were a couple indicators on her labs that she might have infection somewhere, but these might be elevated because she isn't that far out from surgery so she could have some inflammation still from that. They did a blood culture that will give more accurate results. We should know preliminary information from that in 24 hours. I am so thankful that it isn't anything big, but I also wonder what is going on. They think she might have some bad reflux which could be why she is grunting, back arching, generally uncomfortable. She is already on a big dose of Prevacid so I am confused why she would just now be showing these signs.

This is so hard. I always fly into freak out mode when anything is wrong with Addie. I have read way too much, I know too much. It is exhausting. I spent the night at home with Ellie last night while Scott stayed here. On the drive home, I couldn't help but think about all the bad stuff that could be going on. It actually makes my heart hurt. Like, physically hurt. I also feel like it is my fault that she is having to go through this. Be admitted to the hospital for stuff that is so common for kids without bad hearts.  Every doctor that we saw before Addie's birth always made it a point to tell Scott and I that this wasn't our fault. It was nothing I ate or didn't eat. This stuff happens sporadically. But, I did do this to her. I can't help but think that.We decided to have a baby, and this is what happened. Some part of it is my fault, and I hate that with every ounce of my being. This time, we got lucky and it isn't anything big (we hope). I pray that isn't ever anything big. There is a potential though, and I have a huge problem with that. 

Surgery follow-up

Addie had her surgery follow up yesterday. She checked out perfectly! She had an X-ray and labs and both looked great.  Her hemoglobin was 10.1 when we left the hospital so they put her on iron, and it is now 12. Heart kids need to be higher around 15 so we are working on that. They also made her Lasix  (a diuretic) once a day because her X-ray looked so good.  They discontinued her amiodarone (scary medicine with some scary side effects for her SVT) when we were in the hospital because she hasn't been pre-excited on any EKGs since June or her last holter. This is big!!! We are hoping Addie is part of the 1/3 of kids (normal, non-heart kids have this too) that just grow out of SVT. 

I am still amazed that we are home. Addie still seems uncomfortable at times, although I am not sure if it is from teething or her heart surgery. I think she is getting about 4 teeth right now. One of our favorite nurse practitioners, Kim, jokes that teething is worse than heart surgery. She might be right.  I still cringe at Addie's incision, although I know with time her scar will become almost invisible. They took all her steri-strips off and took out 2 stitches she had left. One from a drain tube and the other from chest closure. She isn't completely back to normal, but we see long glimpses of the happy, laughing baby we had over a week ago. She still seems a little tired, stiff and uncomfortable at times. To be expected though. She had surgery only 9 days ago. 

Scott and I feel so much more "free" after this surgery. We are taking our first out of town trip since Addie was born to Spearman for Christmas in less than 50 days ( It might be 48....I haven't counted or anything), and we are so very excited. It has been a long 6 months and we are so ready to get out of town.  Poor Addie has only been out of Dallas county twice, and that was only to Rockwall. We feel beyond blessed that surgery and recovery have gone so well so far!!  

Happy Halloween!!

Happy Halloween from the cutest little bumble bee and sweetest little cupcake!

Glenn operation - Day 5

We are home!!! Yay!! We got home around 3 pm today, and man does it feel good. They took out Addie's pacer wires, she had an ECHO and then we got discharged. I still can't believe Addie had open heart surgery just 5 days ago, and now we are home. Praise the Lord!! Addie graduated from the Safe at Home program at Children's. No more journaling everything she eats, weighing her everyday or checking her sats. What a great feeling. The 2 nurse practitioners that run Safe at Home made us cupcakes and cookies to celebrate graduation! You made it, Sweet Adeline!! What a strong, amazing girl you are.

Glenn operation - Day 4

We moved to the 8th floor yesterday around 5 pm. We kind of had a long night last night because eveytime one of the nurses came in to take vitals, give Tylenol, etc. Addie woke up and was MAD. It would take a while to get her back to sleep so it seemed like we were up all night. It is kind of funny (or sad) because anytime she hears another person's voice in the room she immediately starts crying. Once they leave, she is fine. I don't blame her! She is ready to be left alone. Dr. Forbess came by and seemed pleased with Addie's progress. He mentioned that the Norwood (Addie's first surgery) is an epic battle for everyone involved, but the Glenn is just "work." Usually a lot easier, in other words. We have definitely felt that way.  The plan is to get her pacer wires out tomorrow morning and be home in the afternoon. Woohoo!!

Glenn operation - Day 3

We are still in the CVICU just waiting on a bed on 8 to open up. Addie had an ok night last night. She was awake from about 3-6 this morning kind of uncomfortable. She had a little tummy ache, but seems better now. She got her art line and chest tube out this morning. She still has her pacing wires in and will go up to 8 with those. She looks so good! This surgery has been SO much smoother than the first. Addie is already talking, playing and smiling. It is crazy!!! They talked about letting us go home early next week if things continue to go well. Also, we noticed that Addie got a tooth. I have been checking in her mouth thinking she might be getting one, and sure enough one of her top ones came in.  We have so much to be thankful for! 

Glenn operation - Day 2

We are still in the CVICU, and will most likely be here tonight. Addie is doing wonderfully. They took out her breathing tube at about 12:30 am. They started feeding her clears about 5 am this morning and she has had 8 oz of formula since then. She is handling the formula well and actually seems pretty hungry. Her blood pressure has been a bit high according to one of her lines so they started a medicine called nicardipine to lower it, but she is no longer on it. Her cuff blood pressure is reading better so they think her line might not be accurate. The only medication she is currently taking is Tylenol and toradol (anti-inflammatory, pain reliever).  They are removing the central line in her neck in the next hour and the dressing on her chest will also come off today. We can hold her once the line in her neck is out. Yay!!! She has been awake today and seems comfortable. She has been kicking around and hasn't been really cranky. This surgery has been so different from the last one. Things are moving so much more quickly! Scott and I  got some pretty good sleep last night, and both feel well rested today. Thanks again for all the prayers and support!

Glenn Operation - Day 1

8:10 am - My heart was heavy this morning as we sent Addie off. They are getting all her anesthesia and lines ready right now and will update us in about an hour.

9:45 am - It took awhile to get Addie's IV's started, but they have made the incision and she is doing well.

10:40 am - Addie is on bypass now. They are about to start the repair. She is doing good.

11:50 am - Addie is out of surgery, and everything went as planned. We are about to get to see her. We will post more updates after we see her and are settled in.

9:50 pm - Addie has been resting comfortably in the CVICU since about noon today. We were greeted by one of our favorite nurses, Katie, upon arrival here. So glad to have a sweet, familiar face for the first few hours! Addie hasn't gotten her breathing tube out yet but hopefully soon. She is really sleepy so they are just waiting for her to wake up so they can take it out. It has been a long, emotional day, but we are so glad to be on this side of surgery. Dr. Forbess stopped by and was really pleased with how Addie wasn't too swollen, how pink she is, and with her sats. They are running low 90s. They are keeping her pain under control, and she seems to be very comfortable. Hoping for a good night's rest for everyone.

Thanks be to GOD! Thank you all for your prayers and support.

Pre-op - Glenn

Addie had her pre-op appointment today at Children's. It included an x-ray and labs. We had an ECHO and EKG last Thursday so luckily we didn't have to repeat those today. We also met with a surgical nurse practitioner and an anesthesia nurse practitioner to go over the details of tomorrow. Looks like everything is ready to go. We are set to go in at 6 am and the surgery is scheduled for 8:15 am. We will be updating the blog throughout Addie's surgery so for those of you who want to follow, please check back here.

5 months!

Addie was 5 months old on the 16th. My how time has flown. Addie, you are still the best baby. So calm and happy 99% of the time. Smiling at anyone and laughing a lot. You love your big sister so very much, and she loves you too. Your face lights up when Ellie walks in the room and you don't stop grinning until she leaves your sight. Your feet and hands have become your favorite toys. You play with them constantly. You are also pretty fond of your Sophie giraffe. I keep thinking you are getting a tooth because you chew on her so much! Haven't found one yet though. You can sit momentarily without support, drag objects towards yourself, and always turn towards new sounds and voices. What a precious joy you are, Sweet Adeline! 

We had our last clinic appointment today before Addie's surgery next week. Everything went perfectly, and we are good to go for next week as long as Addie stays well. Lots to thank God for today: Addie had a leaky valve that is no longer leaking because of the collateral that was recently plugged in her cath, her last holter showed no pre-excitement which means she might be growing out of her SVT(this is a big one), and she is 13 lbs 3 oz. All in all, a great appointment! 

Dedication

Sunday  was such a special day for our family as Addie was dedicated to the Lord at church. I knew it was going to be super emotional for both Scott and me (and our families) because there was a period of time when we didn't know whether or not we would get to have this moment with Addie. She did great and looked beautiful. Our church family has been so supportive of our family and we were glad everyone finally got to see Addie. We did take her out of the service right when her dedication was over for fear of germs, but those 5 minutes she did get to stay were precious! We also had a bunch of non-Wilshire friends that we wanted to thank for coming. It was a truly special day for everyone involved! God is so good!! 

Too close for comfort

In 16 short days, our precious baby will have her 2nd heart surgery. It already makes me sick thinking about sending her back into something that we have no idea how it will turn out. We have been home for almost 4 months, and it seems like 2 weeks. It really hit me today how close it is when I was grocery shopping. I was buying milk, and the expiration date on the milk I was buying was October 21. Yikes. That is 4 short days before she goes in. I was that weird girl crying in the dairy section. Good thing my eyes have been bothering me so I had my glasses on today and you really couldn't tell. :)

We are dedicating Addie this Sunday at church, and honestly, I wasn't sure we would ever make it this far. She has been such a blessing and has brought us so much joy. It is really exciting for our family. We made it extra special and asked many friends who have loved on our family the last 10 months (and really, a long time before that) to be a part. It should be something extra special for everyone involved. 

As you say your prayers, please say one for Sweet Adeline and our family in the coming weeks. 

4 months!!

Holy smokes, our baby is 4 months!! She looks amazing and is doing amazing. We had a cardiology clinic appointment last Thursday and her 4 month well check yesterday. She checked out well at both places. She only had an x-ray at her clinic appointment and it is still so crazy to see her coiled mammary artery on there. Those platinum coils look bright and huge in her tiny chest. Anyway, I asked a few questions of Dr. Ikemba mostly regarding the next surgery. I asked if we should get an MRI after her surgery to get an idea if her brain was affected at all during surgery. I love Dr. Ikemba because she is so positive. She said this wouldn't be beneficial because of anesthesia risks and would be no indication of how Addie would learn, etc., but I reminded her that this is something that I would like to know in the future if Addie exhibited any signs of delay. We pray that Addie is one of those kids that doesn't have delays (or disablilities) from all her surgeries. At her 4 month well check with our pediatrician, Dr. Linderman, Addie was 25-50% in everything. I looked back in Ellie's baby book and Addie is almost a pound heavier than Ellie at this point. Ellie was a little longer but not much. Addie is on target for everything else (advanced in most things). She got 2 shots and maybe cried 10 seconds. Addie recognizes her name and is a huge fan of her hands and feet. She hasn't rolled over yet, but is still so close. She likes to hang out on her side!  There is a special place in my heart for all of Addie's doctors. I knew Dr. Linderman before I even knew I was pregnant with Addie because she is Ellie's pediatrician. She is an amazing doctor and person. She was so encouraging and had some really kind words to say about our family. We have been so fortunate to have doctors we feel are so personable, comforting, and most of them Christian.

We have a little over a month before Addie's next surgery, the Glenn, on October 25. Please keep our family in your prayers. It is going to be so hard going back to Children's. That place holds so much hope, but it is also the scariest place in the world for me. Right now, I can't imagine being back there. Hopefullly, we will all be prepared for round 2 when it comes time. Until then, we will just be enjoying the happiest babe on the planet!

3 months

Addie was 3 months old on August 16th. She is such a happy baby. Her little laugh is the sweetest sound ever. I feel like I try to make her laugh all day just to hear it. She also loves to be smooched and held. Her favorite time of day is bath time. She is so content in there and just smiles and kicks around. She squeals, gurgles, coos, blows bubbles, can grasp a toy, brings her hands together, and bats at toys. She smiles at the sounds of Scott's, Ellie's and my voices. She is pretty close to rolling over, which is amazing since she wasn't allowed to do tummy time until July 2! Addie is pretty much sleeping through the night, and she might if we didn't have to wake her up to eat once during the night (what a blessing this is since Ellie is still such a non-sleeper). She is such an amazing little girl! Probably the most amazing thing that happened last month was that Addie got her NG tube out August 28. She is making big strides towards eating 3 oz at all her feeds. Addie is thriving! God is good.

That hospital smell

Camille and I tend to quickly wash every piece of clothing we take to the hospital pretty much as soon as we get home.  There is a certain smell that gets in our clothes from the place.  Now they don't stink (although I didn't pack enough clothes for the cath appointment thinking we would only be there one night but that is another story). There is just this odor that my mind immediately associates with CMC-Dallas.  The place is very bitter sweet for us.  I have to admit there has been more than once (ok more like a dozen times) we have said to each other that "we hate this place."  The truth is that without that "place" Addie would not be the happy little chunk of a beauty she is.  That place has put us in the unique and blessed position that we are right now. 

When we got the troubling news last week that Addie might need the TPA to alleviate the clot issue and that we would be going to the Cardiac ICU (aka the 3rd floor) it was both scary as hell but slightly comforting for me since the 3rd floor is place we know well.  All too well.  The faces are generally familiar (although they have new fellows now).  A lot of the nurses we know and the attendings recognize us as we them.  As soon as we got to the 3rd floor, the familiar faces started coming around.  "Good to see yous" were exchanged, but both sides quickly retreated to say that we wished it was under different circumstances.  When a faint pulse was found in Addie's foot after just a few minutes on the 3rd floor room it was declared by the attending (Dr. Koch) that is was a "therapeutic transfer."  The nurses kidded that Addie just wanted to come back and say hi.  As we waited to be sent back up to the 8th floor, more nurses stopped by along with another attending who we know to see Addie, check on us and generally see how all was going.  What a incredibly strange range of emotions it was.  Both good to see these people who do amazing work on a daily basis but tough to see them as it meant we were back.  Back where it all began.

It is an incredible place.  A place that still has more days requiring our attendance, but it is at the same time a very hard place to be and to return to.  The halls are easily navigated now.  The cafeteria easy to find.  The ins and outs of the vending machines and parking a passing thought.  But it still gets me sometimes.  I still hate it sometimes.  I appreciate it, admire it, but at times hate it.  

But we will be back.  Addie will be back.  This time hopefully for a lot shorter time than the first go-around.  And yes, when we get home, the clothes will go quickly in the washer. 

Pictures

Thank you Britt for taking these sweet pictures of Addie!

Cath update

Addie had her heart cath on Tuesday. We went in at 7 am and her procedure finally started at 2. It was relatively quick (we got news around 4), and everything looked great. All her pressures, shunt and aortic arch looked great. They did have to coil her internal mammary artery because it was competing with her shunt. Collaterals (these already existing arteries that can grow very large) are fairly common in shunted babies because your body tries to compensate and make another route for blood to flow. After her procedure, while she was in recovery, Dr Nugent, who performed the cath came to check on her. Her pulse in her right foot was not there, but he didn't seem concerned saying it was fairly common. They would start her on heparin (a blood thinner), and her pulse would most likely be back in the morning. No pulse is caused by a blood clot or spasm in the artery. Addie's blood clot was caused by a sheath inserted in her leg to coil the mammary artery. Yesterday morning, her pulse still had not returned and they decided she needed to be transferred to the Cardiac ICU to be given a drug called TPA, which has some pretty serious possible side effects, to bust the clot. We were transferred to the ICU and one of the nurses there was checking for Addie's pulse and it had returned. It was a therapeutic transfer....maybe a miracle! A pulse not returning is extremely rare, as the doctors had to look up the protocol on using TPA because they rarely use this drug. We had to spend another night at Children's on the regular cardiac floor while Addie stayed on heparin to prevent any further clotting. Her femoral artery is most likely stenosed (narrowed) and the  long term effects are minimal.  They did mention that worse case scenario would be a leg length difference but probably not since she does have blood flow there now. We pray not. 

We got home today around noon and are pretty exhausted. What a whirlwind. Scott and I both thought this was going to be a quick trip to Children's, maybe a night in the hospital, and we would be home. They call this a "bump in the road." This journey is exhausting and is always full of surprises.  Thank you to our friends and family who are a constant source of encouragement. Without you, this journey would be so much more difficult. Thank you to my sister, Lindsey, who kept our other precious daughter. I know she had a blast playing with her cousins and slumber partying. 

Trust in the Lord with all your heart

    and lean not on your own understanding;

in all your ways submit to him,

    and he will make your paths straight.

Proverbs 3:5-6

Update x2

On a much more positive note than the last post, Addie had clinic today. No EKG, ECHO, X-Ray or labs. Just an exam. It was a pretty quick visit, and Addie looked great. All the nurses love her, and one of the doctors even said she might be the cutest baby she has ever seen. Surely she doesnt say that to everyone! :) She is pretty stinkin cute. 

Updates

Oh man! I kept wanting to write this post, but have stopped so many times. I went to book club last night with a fabulous group of girls. We have been together going on 4 years. The last 9 months have been so turbulent for me, and anytime I can get away, I grab it. I had such a great time, but lately, anytime I have any fun, I am reminded of my dear daughter and our situation. Its weird. I always feel bad for enjoying myself. On the way home, I just started crying. I think the long days at home are getting to me. I catch myself worrying a lot and wondering about the future. Addie is precious you see, and I want her here forever. I want to see her laugh and play and live to 80. This whole situation seems surreal....still. Our situation isn't dire  you see, but to me, it is. I want to keep my girl here. I have blocked out most memories from Addie's first 2 months. No more surgeries, no more doctors...lets just grow and live and learn. I am tired of it all. I want to be normal. I want my old life back, but I want Addie in it. Friends, pray for the upcoming months. We have a heart cath in about 2 weeks and an October surgery. We need your prayers and positive thoughts.

Clinic and speech

Addie had clinic this past Tuesday at Children's and an outpatient speech therapy evaluation at Our Children's House at Baylor. Her clinic appointment went great this week. We had an EKG and an Echo. Her EKG looked good. The Long QT her EKG showed last time was normal this time. Dr. Ikemba said that she thought the last one was a computer error and that the computer measured it wrong. Thank goodness!  Her Echo also looked fabulous according to Dr.Ikemba. Addie has a leaky valve and it keeps improving every Echo she has. Addie was so sweet this week when we went. She was talking to and smiling at all the nurses and people that came to see her! Pretty precious. 

The speech therapy evaluation went a lot better than I expected. I was expecting this to be added on our list of weekly doctor's appointments, but it will not be. Woot!! We met with a speech therapist, occupational therapist and a nutritionist. They all agreed that Addie looked great and didn't recommend therapy at this point.  The speech therapist watched Addie eat from a bottle and said she looked wonderful. This has definitely been one of our blessings. Usually heart kids have a hard time learning to eat and gaining weight, but this has not been the case for Addie. She will have a swallow study in the next couple of weeks to see if she is still aspirating milk. Dr. Brenski (the ENT doctor) said that her right vocal cord is compensating for her paralyzed left one so I am hoping that this is keeping her from any aspiration. We will see in a couple weeks. If she isn't aspirating anymore, we would be able to stop thickening feeds and I would hope increase feed time. The occupational therapist said all her motor skills looked great and commented how well she was holding her head up. We are working pretty hard to keep her on track developmentally so she doesn't fall behind when she is in the hospital. 

All in all, a pretty good week for Sweet Adeline! 

ENT follow up

Addie had her ENT follow up Friday. Not sure if everyone remembers, but the day before we got discharged from Children's, Addie was diagnosed with a paralyzed vocal cord. Scott and I were both positive it was repairing itself because Addie is so much louder. She is no longer hoarse and sounds like a normal baby. Unfortunately, our ENT doctor, Dr. Brenski, informed us that it has not begun repair.  We also found out Addie has some edema (swelling) on her working vocal cord. I was pretty devastated.  Dr. Brenski said not to give up hope though because 1/3 of patients start repairing by 3 months, and 1/2 by 6 months. The repair percentage goes down after that. Dr. Brenski increased Addie's Prevacid dose to 2x per day in hopes of stopping any spit up to decrease the swelling on her vocal cord. She also decreased the amount of time she can eat from a bottle to 10 minutes to hopefully prevent any aspiration. I think I was so bummed because a repaired vocal cord means more time eating from a bottle which means less time with the NG (feeding) tube. 

Please pray specifically for Addie's vocal cord to start repair. We go back for a follow up in December so I pray we will find out good news then. 

2 months

Addie was 2 months yesterday. That just doesn't seem possible. I guess because we have only been home for a month, it seems like she should only be 4 weeks or so. Anyway, Addie is a smiling, cooing, sweet baby! She is just a really good baby. She sleeps well and seems pretty content most the time. We had a couple doctor's appointments this week. Yesterday, Addie went to the pediatrician for her 2 month well check up. She weighs 9 lbs 11 oz and is 22 inches. She is very porportioned, 10-25% in everything they measure. We did get 4 vaccines, 3 shots and 1 oral. Addie cried for about 5 seconds and then was fine. She is one tough cookie! Our cardiologist wants Addie to stay on track as far as her immunizations so we will pretty much be getting worked over at every doctor we go to. We did find out some good news at the pediatrician. At Addie's one month check up, Dr. Linderman noticed Addie's right hip was clicking. She said if it didn't tighten up by 2 months, we would need to see an orthopedist and she would possibly need a harness. Yesterday, Dr. Linderman said her hips were perfect. I might have screamed, "Praise the Lord," really loudly. Seriously, thank God for the little things.

Our other appointment was our clinic appointment today at Children's. Addie had an X-ray, EKG, and labs. Her X-ray looked good. Dr. Ikemba showed me last months in comparison with this months and her lungs were a lot less "wet." This means we might get to stop the diuretic medicine she is on pretty soon! Woohoo. All her labs looked good today. There are so many scary side effects of one of the arrhythmia medicines that Addie is on, and it was really good to know that it isn't affecting her right now. Her EKG showed a couple things; one was that she wasn't preexcited today (a sign of SVT) and the other thing was that she had a Long QT (another form of arrhythmia). Dr. Ikemba spoke to an electrophysiologist about this and she thought that the computer may have over measured this wave so it wasn't as bad as she thought. Addie had to come home on a holter monitor today for 24 hours. This will show any arrhythmias she has at home. We will have to return it tomorrow.

We have a couple big dates coming up. One is Addie's heart cath on August 20 and the other is her possible 2nd surgery, the Glenn, on October 25. It is weird to think that in a few short months we will be heading back in for another surgery. I go back and forth on whether I am ready or not. I am ready because Addie will be much more stable, but I am not ready because it is another stinking surgery. Please continue to pray for our family and most especially Addie.

For my mom

We miss you so much already! For the past 2 months you were a regular part of our day to day lives. I never thought I would have that opportunity again. These are not the circumstances I would have ever wanted you to be around for, but I am so glad you were here to help and nurture. Not only did you nurture Ellie and make sure she was ok, but you also nurtured me. You are one amazing mama!  I got teary eyed today when Ellie asked, "Where's Mimi?" I told her you were in Spearman, and all she said was, "I need her." I was thinking the same thing. It makes my heart so happy that Ellie loves you that much! For the 29 days we were in the hospital, I never worried about how Ellie was doing. I was so grateful it was you staying with her. I knew she was having a good time, but most of all, I knew she was being loved and getting attention Scott and I couldn't give. There were days in the hospital that you stayed overnight so Scott and I could come home and get a good nights rest. We will forever be grateful for the time you spent here and loved on our whole family. We love you, Meems!

A new perspective

This weekend was tough. Bringing Addie home has been the toughest on Ellie. I never really had to discipline her much before Addie came home. Now, I feel like all I do is say, "No," and put her in time out. She has really been acting out lately. Also, our bedtime routine is non-existent anymore. Ellie stays up most nights until 11 refusing to be rocked or do anything besides watch and play the iPad. Scott and I are both struggling how to remedy this newfound resistance of Ellie's, and it is really putting a strain on everything. Also, we had to take Addie to the ER on Saturday. Around 6 pm I noticed she was kind of blue around her mouth so I text the Safe at Home nurse practioner to ask if we needed to bring her in. They told us to go ahead and bring her in so she could be evaluated. By the time we left, her color was normal, but I got a little scared. Things I normally don't think about started going through my mind and I immediately started crying before we left. She ended up checking out fine at the ER, but I do forget sometimes how serious Addie's condition is. I found myself feeling sorry for myself, our family, and especially Addie. I was also just mad. This whole situation really ticks me off sometimes, and it isn't easy. I have a hard time staying home all day most days and get really tired of rushing Addie to the ER, dealing with medicines, feeding tubes, doctor appointments, etc. I especially hate all of this for Addie.

At church yesterday, Scott Dickison, one of Wilshire's pastoral residents and a friend of ours, did the children's moment. He gave all the kids "church" glasses. He reminded all the kids that they needed to have their church glasses on and view things the way God intended them to be. He said to put these glasses on when you are down and in need of a new perspective. I am putting my "church" glasses on and am determined to find a new perspective this week. We are all home together and are mostly healthy. We have great friends and family, and have had God's loving arms wrapped around us for the last 2 months. These are reasons to be rejoicing for sure!

7 weeks

Addie was 7 weeks old yesterday. She is such a sweet and happy baby. I feel like she is totally different from Ellie....she doesn't cry much and is super laid back. She is also a great sleeper (right now anyway). We have started doing a little tummy time and have started holding her like you would when you normally burp a baby. She seems pretty strong and does a good job holding her head up. I still don't pick her up under her arms, even though we can now. She had sternal precautions until 6 weeks after her surgery, which was July 2. She had a check up on her wound at the top of her incision on Tuesday of this week. Everything looked fine, and they are just going to keep watching it. It keeps scabbing and falling off, scabbing and falling off, etc. They said it will keep doing that until the suture finally works itself all the way out. We have her regular cardiology appointment next Tuesday and it will be a long one with an ECHO, EKG, X-ray, and labs.

I feel like I am finally getting the hang of most things at home. I keep saying this, but I don't know how the days are going to go without my mom here. She is leaving in a couple weeks, and I will be on my own during the week. It is so time consuming to pump, then feed Addie, then clean everything, administer medicines, etc. that I am really concerned how it is all going to work out when I am by myself. I feel like something is going to have to give and that might be pumping, which is really kind of upsetting. I guess we will see how it works out when I am on my own though. Hopefully I can keep it all up!

Yesterday my mom and I took Ellie to the Lake Highlands July 4th parade, and then Scott and I took her to watch the Lakewood fireworks. We got a couple really cute pictures of the girls in their July 4 outfits.

Updates

We are still doing good over here. We are still getting adjusted to life with 2 kids, although I know it is going to be a lot more work once my mom leaves and I am on my own. The mornings are always pretty wild and I don't ever feel like I have stuff caught up on until around 2 in the afternoon. Addie had her clinic appointment today. We had another ECHO but no labs and X-ray. Everything looked good and we get to skip a week going to clinic next week. We do have to go in and make sure Addie's incision is healing appropriately though. Speaking of her incision, we did have to go to the ER on Saturday with Addie. She had a suture working its way out and making a little puss spot at the top of her incision. Luckily nothing was infected, and it was a really quick trip. Two trips to the ER in one week is not my idea of fun. I kept joking that we need a punch card for ER trips where you go so many times and get one free at the end. Hopefully we won't have to go again any time soon.

In other notes, my best friend Allison asked me about how things were now compared to how I thought they'd be before I had Addie. I think the biggest thing I was worried about before I had Addie was if I would be worried/scared about her health every day all day. I'm not scared. Don't get me wrong, her diagnosis is scary, but I don't worry about it like I thought I would. I pray more for her and my family than I ever have. I have also learned to take things one day at a time. I haven't thought too much about the future, and right now that is just fine. This whole thing has strengthened Scott and my relationship more than I ever could have imagined. Scott's positive outlook definitely helped me get through some really rough days in the hospital. I also feel a lot more "normal" than I thought I would being Mom to a heart baby. Addie acts like a normal newborn. She eats, she cries, she sleeps, she smiles heavenly little smiles, she just has a few more doctor's appointments and takes medicine unlike most newborns. She is a precious baby and a true gift from God!

Daily life

Not going to lie, it has been crazy around here since we have been home. Between feeding Addie, pumping, thawing out breast milk, then fortifying it, administering medications, charting everything, trying to get Ellie to nap and go to sleep it seems like there is never a break. I am so glad my mom is here to help because I am not sure how I would get it all done. I think it would be hard enough with 2 kids, but with the extra things Addie requires, it makes for a full day never stopping. I am sure we will get the hang of it soon, but it sure seems like a lot right now. Addie had her first follow up this morning with Dr. Ikemba, her cardiologist. It was a full morning, with not much sleep for our house last night. We were at the Medical City ER with Ellie. She dislocated her elbow at about 11 last night and we didnt get home until 1:30. Anyway, we left at 7:30 this morning and didn't get home until noon. Addie got measured, had labs, an x-ray, an EKG, and an ECHO. All of which were normal. Yay! She is 7 lbs 15 oz now, which is awesome! They like these babies to gain 20 grams a day and she is averaging 34. Dr. Ikemba said she looks great, and the only thing they changed was the volume of each feed to 55 ml. Addie is such a good baby and seems content wherever she is....in someone's arms, in her nap nanny, in her bassinet....wherever. All in all, it is great to be home!

Father's Day post a little tardy

How could I not be completely thankful and reflective on this Father's Day?

Mind you I haven't been the focal point of many Father's Days. Only two to be exact. But I can't imagine a Father's Day where I could be happier and more thankful. No new tie or Home Depot gift card needed. All I have is all I need and more than I deserve. And what I have are the incredible gifts of my two daughters and Camille all together at home.
 I can hope there will be many more Father's Days for me but will there be a happier one?  For that I can only pray there will, but until that day this one was pretty special.

Rooming in

Addie is 4 weeks old today! I can't believe it. This has definitely been the longest month of my life, but also the most faith filled. We thank God everyday for our Sweet Adeline! We are over 24 hours into the rooming in process and everything is going smoothly so far. We have been charting all of Addie's feeds, giving all of Addie's meds, and mostly just loving on our baby without all the cords and wires. It has been really nice! If things continue to go smoothly, we will be home by tomorrow. On another note, yesterday, an ENT came to look at Addie's voice box because her cry is still very hoarse and her voice hasn't returned all the way yet. We found out that her left vocal cord isn't moving so today they are going to do a swallow study on her. This will show whether or not she is aspirating any of her milk to her lungs, which can cause pneumonia. The temporary paralysis of a vocal cord is pretty common with a baby who has a coarctation of the Aorta and was something Dr. Forbess mentioned as a possibility before surgery. There is a nerve that was damaged during the process to fix her aorta. They told us that the time to regain use of the left vocal cord could be months and they wouldn't say it is paralyzed until at least a year. I will add that some kids that have a paralyzed vocal cord are not bothered and have full use of their voice. You would never know they had a paralyzed cord. Addie just may not be the next Adele. :)

Ellie was so excited to finally get to hold her "Baby Addie!"

Going home?

Not much has been going on around here lately. We like boring when it comes to Addie! This week, we do have exciting news though. We start the "rooming in" process tomorrow. Rooming in consists of being here for two days and administering all of Addie's medications, giving all of Addie's feeds, taking off all her leads so she isn't being monitored, and doing everything ourselves. The nurses and doctors will be here if we need them, but we are basically on our own for 48 hours. This will ensure we know what to do when we get home. They have been training us on everything the past week so Scott and I feel pretty good about caring for our sweet baby. We have a big binder of all things Addie we have to carry around in the diaper bag at all times just in case. It includes the things we need to call our SAFE at home team member for, daily feeding logs, places to put her daily saturation levels and weight, her feeding information, basic information about the anatomy of her heart, information about her medications, and basic daily living information. Scott and I also had to take CPR. All that to say, we will most likely be home by Thursday. Woohoooo!! We are so ready! Thank you all for keeping up with the blog, praying for us, visiting us, sending us messages, bringing us food, etc. We feel so blessed. God is good!!!!!

Joy

The love between a mother and her child is a bond of the strongest kind. My mom wrote this comment on a post awhile back. I really struggled with feeling joy about having a child with a serious heart defect before Addie was born. I wondered if I would be able to let myself love something I didn't know if I would be able to keep. I  was really afraid of the struggle for Addie! Any parent can understand that. Once Addie was born though, I had no problems feeling joy or love over my newest daughter. Sure, I still don't ever want her to suffer or struggle, but I have finally found that peace that I desperately searched for before Addie was born. My love for both my girls has multiplied more than I ever imagined it would.  Also, the love for my friends and family has grown a well as my faith. This journey is not near over, but so far, our family has been so blessed. I am so proud of our little family, and especially our newest little. And, my mom is right....the love between a mother and her child is a bond of the strongest kind.

P.S. we moved to the 8th floor yesterday. One step closer to home!!! Yay!!!

When is moving day?

The answer to the post title is....who knows! Dr. Forbess came by for rounds this morning and said he wanted Addie on 3-5 days steady weight gain before she goes upstairs. She has gained weight 2 days in a row so we have a start. He mentioned that they were worried at the end of last week and this weekend that her shunt might be too large for her (her heart and respiratory rates were up a bit as well as her blood pressure) so they wanted to make sure she was growing into her shunt appropriately. Not going to lie, it is kind of frustrating not being able to move upstairs yet because it is one step closer to being out of here, but I would rather them be as precautionary as they are. I think Scott and I are both ready to have a somewhat normal life again. We both miss Ellie terribly and are just really ready to be out of this hospital! I sometimes forget that Addie just had major heart surgery 2 weeks ago today and we have only been here 3 weeks this Wednesday. They told us to expect 4-6 weeks when we were touring so we are well in that range. Addie is doing well, but I am reminded how serious and scary her heart defect is (mainly when Dr. Forbess comes by). I am also reminded that I still need to be praying hard for my baby girl. Take one day at a time has never meant more.


Addie doesn't seem to mind a couple more days on the 3rd Floor



2 weeks

Addie was 2 weeks old yesterday. She has endured more in her 15 days than I have in my 30 years. We prepared ourselves for the worst, and have been so fortunate with Addie's progress. We are still in the Cardiac ICU for a couple more days, but will hopefully be moved to the 8th floor soon. They want Addie to gain some weight before going upstairs. Hopefully by Saturday or Sunday we will be there. Scott went back to work yesterday, and I think it was tough for him to be away. We both feel like we are living 2 different lives. One at home with Ellie and the other up here at the hospital. Soon enough, we will be altogether. We are ready!

Oh happy day!

Yesterday and today have been really good days for our Sweet Adeline. She is making some really big strides, and we are getting close to moving up to the 8th floor if everything keeps going as planned. Addie is completely breathing on her own now. This was a huge step for her. She looks more and more like the baby I had on May 16th. The only thing she has on her face is the feeding tube. She is only on 3 medications, 2 times a day, and we are starting to try and bottle feed her. They have warned us that the feeding might take a while for her to get because she hasn't ever taken anything by mouth.

This is what we have been up to today:

Both Scott and I are getting in some good snuggles with our girl. It has been 1 week too long without holding her. Praise the Lord!

Thankful

On this Sunday, Scott and I have a ton to be thankful for. Our sweet baby had another good day yesterday, and Scott and I got to go home and stay the night at our house. My sweet Mom stayed up here with Addie last night while we played with Ellie and got some rest. It has been 72 hours since Addie's last SVT. This has been something that I have prayed hard about since SVT's and single ventricle kids are not a good combination. Overall, it has been a good couple of days. We are so thankful for those of you who pray for us, text us, come visit us, bring us food, and think about us. The support we have received has been overwhelming!

But as for me, I will always have hope; I will praise you more and more. Psalm 71:14

A better day.

Yesterday was a struggle.  Today not as much.  That's just how it goes with these kids.  That's what they keep telling us.  That's what we will have to become accustomed to.  Today was definitely an up day for Adeline though as she reached a couple of milestones in her journey.  She had the rest of her drains removed and most importantly, her breathing tube taken out.  The breathing tube was a big thing.  She still has an oxygen cannula (the little tubes that go into your nostrils) but is doing the breathing part on her own.  She fought hard to stay off the ventilator and not have to be re-intubated.  She won that battle.  Going on 36 hours since her last SVT.  Another battle she is winning.

This is the view from my current "office."

At random times during the day, it hits me.  Camille and I have been basically living in this hospital for going on 10 days.  Ellie hasn't seen her baby sister since day one of her life and won't for several more weeks if all goes well.  We have leaped, not stepped, from our normal world into one where normalcy is measured in cc's/hr, artieral pressures and blood gases.  Adeline's room is a space shared by us along with so many others with the common goal of getting Addie and us out of it quickly and safely as possible.  In the meantime we live in this alternate world.  All this while trying to maintain our normal one with so much help from so many great friends and family.  One day these worlds will unite and our family can feel more like a "normal" one. 

Baby steps

Today was not the greatest day. Scott and I are constantly reminded that this whole process is 2 steps forward, one step back. Addie had 3 SVT's (Supraventricular tachycardia)from 1-3am last night. Her heart rate didn't get as high as it has been before during these but it was still just as scary. In rounds this morning, they talked about trying to extubate her, pulling out her other chest tube, and getting her pain medicines pretty much completely off. After rounds, Addie had 3 more SVT episodes. So then it was decided that today would essentially be a day of rest for Addie. The doctors decided that they needed to get her SVT's under control before they extubated her. The victory for the day was that she got her other chest tube out and she stayed stable this afternoon. The step back was obviously the recurring SVT's. So our little fighter didn't overachieve today, but she did achieve so we will take that. We are focusing on the small victories, and trying not to let the steps back get us down. Tomorrow is another day and we know she is working hard.

Big day

It is crazy to think it has only been 2 days since Addie's surgery. These last couple days have flown by but have gone really slowly at the same time...if that makes sense. Not really sure where all our time goes up here. Last night Addie had her first "bump in the road" since surgery by having an SVT episode. Her heart rate went to the 320's....pretty scary! Today has been a really great day so far! They pulled out one of Addie's chest tubes, a UVC (belly) line, put an NG tube in, started 1 cc/hr breast milk, turned off her dopamine, epi, and lasix, went down on her pain medicine, and gave her an ECHO. She is making some great strides! Hopefully tomorrow her breathing tube will come out. We have a strong little girl on our hands! She is definitely a fighter.

Next big step

So after rounds this morning Camille and I went home to play with Ellie a bit, take showers and change clothes. It was nice to be back home if even for a couple of hours. One of the many great nurses we have had here, Jen, called and told us that the surgeon was running a little faster than expected on his schedule today and that we needed to return pretty soon to see Addie before they started her chest closure. We got back just in time. Donned some surgical caps and masks and were able to step in and see, talk and even touch Addie's hand before the procedure. The chest closure should only take about an hour. We are even more convinced now in the power of prayer getting Addie to this stage quickly and in good shape so keep them coming.

Good night!

Addie had a really good night last night. They are planning on closing her chest sometime today. We have been so thankful for all the thoughts, prayers, messages, etc. Please keep the prayers coming!

Addie's room

Here she is in all her glory and with all her equipment!  Although it may look scary it isn't as scary as Camille and I had thought.  She is good and in good hands!

Settled

Addie is settled in her room now and is stable. She has been a rockstar so far! The next 24-48 hours are critical so please continue to keep us in your prayers! The Lord was definitely with us today. The power of prayer is amazing!

Surgery update 11:30

Surgery part is done. She is off bypass. Should take another hour or so as they clean up and get ready to move her back to her room. Her echo also looked good and her heart beating on its own. All sounds good. Thanks for all of the well wishes and prayers.

Surgery update-10:30

They told us that they are rewarming Addie off the circulatory arrest and she is doing fine. Should get another update soon.

Surgery update

We got an update around 9:30 and they told us Adeline is now on the heart/lung bypass machine and everything is going as planned.

Surgery has started!

They took Addie back to surgery around 7:40am. We got a call about 30 minutes ago, and they told us everything had started and she was doing well.

We will continue to update as we know more.

Addie's angel was holding her paci in this morning before they took her back. :)

Monday is surgery day

So Addie's first surgery has been set for Monday.  It will be a long day for everyone, especially Sweet Adeline and the doctors, nurses and others here at Children's.  Below is a general breakdown of what will be going on and a rough timeline for everything.

The process begins with the anesthesia team around 7am.  Thankfully Camille and I will get to see Addie before they start and then again right before they take her to surgery.  Anesthesia will take about one hour.  They will be placing some central lines, breathing tube and catheter as well as other things.  Then the next couple of hours will be opening up her chest up and getting her started on the heart/lung bypass machine.

After the surgical procedures (2-3) hours they will do an echocardiogram and if everything looks good they will start to wean her off the bypass machine.  She will then be taken back to her room and it will be another 1-2 hours for them to transfer all of her lines, IV pumps, sensors, chest tubes and everything over from the surgery to her crib in her room.  After that, we will get to see her. 

Addie will need to have several procedures done during this first surgery.  They will do what is called a DKS, which is where her pulmonary artery (PA) will be spliced into her current aorta.  This basically replaces her now too small (hypoplastic) aorta with a good size one by using the PA.  Addie's PDA (which is a ductus that is keeping her alive right now and kept open with a medication known as PGE) will be closed off.  Additionally her aorta will be opened up and patched so that it is bigger.  This patching of the aorta helps create much better circulation from the heart to the rest of the body.  This particular procedure also addresses the coarctation (narrowing) of her aortic arch that she has now.  She will also have what is called a Arterial Septostomy.  This basically increases the opening from her right atrium to her left atrium.  Normally there isn't a permanent opening here, but in Addie's case this is actually a good thing and they want to make that pathway larger.  Lastly the surgeon will place what is called a BT shunt.  This is a Gortex shunt that replaces the blood's pathway back into the lungs which was sacrificed by the PA becoming Addie's aorta in the DKS previously explained.  This shunt is temporary and will be taken out during Addie's second surgery (Glenn procedure) to happen in a few months. 

Needless to say there is a whole lot of "re-plumbing" that needs to be done.  Some of the scarier things about the surgery and post-op include the fact that during the patching of the aorta they will have to put Addie in "circulatory arrest."  Basically they cool her body down to about 37 degrees.  This allows them to stop the bypass machine, do the patch and preserve her brain and organ function.  After they are done with this they will have to slowly re-warm her.  This adds some time to the overall surgery.  Another scary part is that when we see Addie for the first time after surgery and for a while afterwards she will have a whole lot more lines, tubes, monitors and IV's than she does now and be intibated and on a respirator.  They keep telling us to be prepared because she just won't look like she does now.  The other scary thing, but routine for these surgeries, is the fact that they will keep Addie's chest open for 1-2 days after the surgery.  This is done so if anything happens they can have quick access to her to fix it and also allow her body to recover from all the work.  They sew a patch over her chest so it is not exposed.  If all goes well and as planned the surgeon will close her chest by Wednesday. 

Please specifically pray for Addie's surgeon, Dr. Joseph Forbess and his team, for a successful surgery. 

That's basically it and that's plenty for her and us. 

We thank everyone so much for all the thoughts, prayers, meals, visits and offers of babysitting Ellie.  And speaking of Ellie, she is doing good. Her Aunt KK took her to a friend's birthday party today and gave Mimi a break. I also got to do Face Time with her the other night while I was here and she didn't really want to see me that much, but she wanted to see Addie.  Big sister genes already kicking in.