post op appointment

Today, Kris, Chandler and I traveled north on I-55 to Jackson just as the three of us has done countless times since a week after she was born. This time was quite different from the other visits. We were told that we won't have to go back for six weeks!!! Wow really?!? We actually do have a real, superstar on our hands, that is only 22 inches long! We are so proud of her and can't believe how far we have come.. Seems like it has been the longest five months but at the same time has flown by. We are so excited about Chandler's new lease on life and her new appetite!! It's like she didn't even know she was sick and now she really feels good..like she is supposed to feel!

Anyway, about the appointment! Chandler weighs 12.5 and is 23 inches long. Her oxygen sats were 100%!!!! Everything looked good on her echo, EKG and chest X-ray. They decreased her lasix to once a day for a week then no more!! I know Chandler will be glad cause she hates it! She will be on the blood pressure meds for a while and aspirin for three months. Her sternum will be healed in six weeks and she will be able to carry on with what babies are supposed to be doing! We didn't see our doctor today but the doctor we saw who works closely with Dr Parnell said that Chandler's valve is still leaking but that we shouldn't worry about another surgery until she is a teenager!! Praise The Lord! The power of prayer is an unbelievable thing.. Our precious girl is proof of that!

We have also been fortunate to meet another "friend" whose name is Jake and is exactly a month older than Chandler. Actually some of our nurses and nurse practitioners called him Chandler's boyfriend but her Daddy didn't like that very much! haha They live in north Mississippi and we were able to meet his parents on the day of his surgery. His recovery has been pretty rough but his mom has stayed very optimistic and she even inspires me! Please pray for this sweet family just as you have done for us. Kris and I have walked in their shoes almost two weeks ago and didn't have to experience nearly what they are going through.

As we are approaching March, we are constantly reminded that our big girl is turning three. I don't know why this bothers me so much, but it does! She is so grown in some ways but so small in other ways.. We are looking forward to our princess's Cinderella birthday party but we don't have to like it! :)

feeling so very blessed,
Megan

home

We were discharged on Thursday, February 21 and what a glorious day that was!! They removed Chandler's chest tubes that morning and they were all sad to see us go. And I have to say it was bittersweet leaving those who have gone above and beyond to take care of us! They also decreased her lasix to twice a day instead of three times. She will still take her blood pressure meds twice a day and will also take 1/4 of an aspirin, crushed, mixed with water to help with clotting.

We got home by 1:00 p.m. We were exhausted so Chandler and I took a nap and then Kris went and got Madeline from daycare. Can we say she was happy that we were home and all together?!? I have to admit that we were kind of nervous not having nurses or professionals right outside our door and even the annoying little machine that beeped and blinked was kind of missed, but not for long! We all missed our beds!!

Chandler has been in some discomfort especially when we pick her up but has always settled down quickly. We are not to pick her up under her arms but to scoop her so that her sternum has time to heal for six weeks. We have given her Tylenol and Motrin to manage her pain but have given her very little. As for an appetite..she has got one now! She is eating four-six ounces a feeding..you heard me, four-six ounces during one feeding!!! Wow! We have come a looong way that's for sure! We are so very proud of our super strong girl and can't believe it has been over a week since her scary surgery..

Madeline has missed her sister a lot and has enjoyed being a little mama! "Shhh sissy's here" is what we hear a lot of around our house. When we showed her Chandler's bobos, she said "yucky, cover that up mama!!" She watches me like a hawk when I bathe her and dress her, making sure I am very careful. Their love for each other brings tears to my eyes and reminds me of how blessed we are..

We go for our post op appointment on Tuesday and are looking forward to hearing what they have to say. Until then we are staying home, spending time together!

until next time,
Megan

day six

Well guess who got off of oxygen in the night?!?! With a little help from Daddy since he taped the pulse/ox thing to her toe so it quit beeping and stayed within 95%-100%. We have really missed seeing her beautiful face!! I sent my parents a picture and Madeline saw it and said "hey dos (those) things are not on her face..awww!" It was so precious seeing them together yesterday.. They have each missed each other! And I can't wait to get all my chicks in one basket at home!

The nurse practitioner removed her stitches and put strips over her incision. She said that we can bathe her but not to submerge her and that the strips will eventually peel off. She said that the chest tubes will come out in the morning, and we can go home tomorrow afternoon!!! PRAISE THE GOOD LORD ABOVE.. The power of prayer is truly an amazing thing.. Chandler is proof of that!!

After everyone left out this morning, Chandler and I took a long, much needed nap. Kris said one of us was snoring and I am going to say that it was the patient!! Haha

Brittney (Nanny B) came for a visit and Chandler snubbed her!! We think she wanted her to pick her up and had been missing her!! I said that once we are home and settled, she will have to come for a play date!

Dr Parnell came by and said that everything looked good and that she was very proud of how well Chandler has done. We will come back Tuesday and see her partner but will see her the next Friday. She is very pleased with the repair.

We had an awesome nurse today who took the IV thing out of her foot and that made her a little happier! She also brought us a wagon and we took her on a walk to get a bite to eat. Everyone thought she was precious (duh!) and she fell asleep halfway through it. They started cpt (?) which is when they clap on her back pretty hard to break up the stuff in her lungs.. Can we say she loves it?!

It will be good to get home but I have to say that we have had some unbelievably wonderful folks taking care of our girl and us for that matter! When a nurse asked why she didn't get Chandler and our nurse said cause I got her and I am lucky..just another reason why we are the lucky/blessed ones! Everyone has made us feel like family and that they love Chandler just as much as we do. That is such a comforting feeling during such a scary time!!

It is so hard to believe that less than a week ago, Chandler had open heart surgery!! Her spirit is back and her personality is shining through! She has grinned at us all day and even laughed! We are going to try not to take anything for granted because until you have been to the pediatric ICU and heard some stories and have seen some very sick babies, you really don't have it rough! The next time one of our girls doesn't sleep through the night or has an accident, we will thank God that they are well and know that it could be so much worse!! Please continue to pray for our girl during her recovery and for her leaky valve and also pray for those families who aren't so fortunate as us.

feeling like tomorrow is Christmas,
Megan

day five

I am a little behind, but a lot has been going on!! So I will talk about yesterday, which was my 33rd birthday. Grammy and Papa J brought Madeline up and she had flowers and tuptakes and said "happy birthday Mama!!" Warmed my heart and just what I needed to hear. I was in complete heaven with both my girls in my lap and was THE BEST present ever! Before they got here though, Chandler was experiencing some discomfort and was crying with tears!! The nurse brought Tylenol and I snuggled her up and within twenty minutes, she was feeling fine! It was so sad to see her like that, but she is a trooper!!

We ate lunch while Chandler slept and had a party in the waiting room. During our party, Chandler had an echo done and she was waiting on the doctor to look at it. Kris and I waited with on the doctor (not our doctor) with her. Let's just say his bedside manner was horrible! When he finished looking at it, he wanted to do the scan himself. Before he started, he mentioned a "re visitation." After he was done, he was walking out of the door and I stopped him and asked what he meant by re visitation.. Not sure everything he said but what I did hear was "she will have another surgery in a couple of months.." MONTHS?!?!" We knew that she has a leaky valve and could possibly require another surgery on down the road but not in months!! Supposedly, he meant that it could be years but that isn't what he said!! Needless to say our cardiologist wasn't happy and just wished he had told us that he would consult our cardiologist and she would get back to us. I went to pieces because I couldn't imagine planning to come back soon and we are still here!!

Kris and I went for a much needed walk to get some fresh air and that felt good! Our favorite nurse from PICU came by for a visit and said to come by when we come back for our post op visit. Now that meant a lot to this Mama and Daddy.. Our girl really is a superstar and everyone loves her!! But who doesn't?!?

Shimmy also came for a visit and got to hold Chandler and that was a very special time for them!

They are still trying to ween off of oxygen and we are looking forward to getting that thing off of her face! The miralax has kicked in and can we say there is nothing wrong with her bowels now!!

Hoping tomorrow will be a better day!

until next time,
Megan

day four

Day four has been pretty good. Last night; however, was pretty frightening!! After everyone had left and it was just me and Chandler in the room, this Mama went into panic mode but turned into survival mode. I put my big girl panties on an decided I could do this. Chandler is hooked up to several lines that tell different things, not to mention her drainage tube hanging out. These lines lead to an annoying little computer screen that will blink and beep if it is not just right.. So needless to say I am neurotic about it!! For instance, her oxygen sats need to be between 95% and 100% to be on room air and not on oxygen which she tries her hardest to pull off and we can't see her beautiful face either! I am CONSTANTLY looking at it, willing it to stay where it needs to be and being reminded of the dark place I was in almost three years ago after giving birth to Madeline with that awful high blood pressure. Anyway, back to last night.. So this Mama thinks that to feed her means to hold her so when it was time to feed, I got her and all her lines out and attempted to feed her. Let's just say her and I weren't the most comfortable!! But she ate and don't worry, I got her safely back in her bed! All the while that silly computer is dinging and blinking at me and telling the nurses all our business! The nurse was also trying to ween her off the oxygen which was unsuccessful. She was having to give meds through her IV line too so we would just get back to sleep when she would disturb us!! Oh well, at least she was nice and we made it through the night!!
Her pacing wires were removed today which were in her belly that were in there in case the needed to do some type of pacemaker. Someone tried to draw blood from her heel with two sticks. Let's just say that the nurse practitioner told them to stop and not do that again!! She had to take something to help her poop and boy did it!! Her only pain reliever now is Tylenol and Motrin. They also suctioned some gunk out around 4 a.m. and she was mad but I was amazed at how much better she sounded! Where has that contraption been the last five months?!? Besides that and a not-so-good nurse, we made it to shift change where our sweet nurse and respiratory therapist came back tonight. Nothing like being treated like the princess you are!!

Right before lunch, Kris brought Madeline to see me.. It felt sooo good when she ran to me smiling!! I had to dry my eyes.. I had been missing her so much it hurt! The three of us ate lunch and threw pennies in the fountain. Once we got back to the floor, Madeline demanded she see Chandler.. "I wanna see Chandler!!" So she already had on her shirt and we just pulled up her blanket. But of course she had the oxygen things in her nose and Madeline said "hers got bobos!!" But insisted she give her a kiss and told her she loved her...Mama was then wiping more tears!!

We had several visitors today, including our nurse from the nicu.. Now if that doesn't make you feel special, then nothing will!! Dr Parnell even came in saying she had told her to take care of her baby and her family. Now that says a lot about someone right there!! We have been in excellent hands, and we might need to keep an eye on Chandler or one of these nice people might put her in their purse and run away with her! Ha

Feeding has been a huge issue with Chandler and she was rarely able to drink four full ounces during one feeding. Now she was working her way up there before surgery but never during one feeding. Tonight that pink baby girl was able to drink four ounces during one feeding without being fatigued or breathing heavy!! I had forgotten what that was like!! We are so very proud of our super girl and admire her strength already!!

wanting to unplug this machine,
Megan

day three

If I could describe today's emotions with two words it would be roller coaster! It all started with a sweet phone call from Madeline saying "no fever Mama and Daddy" and I just fell apart! Hearing that sweet little voice and not being able to take care of her has broken my heart in two.. So I dried my eyes and went in to check on daughter #2. They were getting ready to remove the arterial line from her chest so we turned our eyes. They also removed the sticky things on her forehead so she looked different. They then stared her on clear liquids but that wasn't getting the job done so she was allowed formula. She was excited about that! We let her rest and when we got back they had also removed the arterial line from her arm, so no IV lines! She was ready to go to a room but there weren't any available. So we waited not-so-patiently but some good friends, Josh and Ginger and Ryan came to visit so that took our minds off of it for a while. Sometimes laughter is the best medicine!! A room finally was ready so they put her in a wagon, yes a wagon and wheeled her to the 5th floor. We got settled and she acted hungry so the nurse put her in my arms and I got to feed her!! I knew I had been missing something and it was holding my children. I still am only partially complete but will be full tomorrow when Madeline comes up for a visit!

As I lay here in the "bed" beside Chandler's crib listening to her breathe and wiggle, I am thanking God for all His blessings... Our babies's heart is fixed and I couldn't ask for more..

until next time,
Megan

Day two

Woke up from a good night's sleep and came to visit Chandler. She looks good and was able to get the central line in her neck removed and also got the vent out around 1:00. They removed the catheter also. The nurse gave her some sugar water on a pacifier and boy did she like that!! Gimme more is what she looked like! But she cant eat until she wakes up more and gets more gunk out of her chest. Doctor on call said she looks good and as long as she cooperates, we will get to go to a room tomorrow!! But she has to follow the rules haha! We have been by her bedside practically all day just watching her sleep and wiggle. The nurse was trying to suction her earlier and Kris and I were talking and she turned her head completely around to find us.. Warmed our hearts!!

The pictures are ones of when she came off the vent and believe it or not, she looks much better!! They have also bandaged her foot to keep her from pulling the IV out that she just cannot stand being in and tries to pull it out with her other foot! Keep the prayers coming! We can't hold her until a certain line comes out before she goes to the floor and I can't wait but I am kinda scared too! We really have been in the best hands and have had the nicest (and smartest) people working on her!!

Until next time,
Megan

what a day

All I can say is that today has been a very long, exhausting day for us; however, our girl has a fixed heart!! They were able to do a full repair even though she still has some leakage, they are not too concerned with that. All of the team members said she did great and had smiling faces. Everything went pretty quickly except when we got the call at 1:20 that they were starting and would call every hour, updating us. I think Kris and I held our breaths until 5:00 when we finally laid our eyes on her! As Kris said it was like feeling happy, sad and scared all in one. She looks like a sleeping angel even with all the tubes coming out of her.. She is so strong! We anxiously await tomorrow because each day is one step closer in the recovery process!

We have truly felt the good Lord's presence and have been overwhelmed at the love, support and prayers from loved ones, friends and even complete strangers!! As one of my friends said, Facebook has blown up with dedications to Chandler. Mine and Kris's cups are full and appreciate every single prayer, text, call, Facebook message and "like".. Means so much to us to be so loved and believe me, we felt surrounded today. After we walked away from our sweet girl tonight we had a peace and cannot wait to see what Miss Priss is going to be like with a new and improved heart!

We have shed many tears, laughed some laughs, and told plenty of stories but in the end it was a very good day..

Now let me get some sleep, so I can be ready for Chandler tomorrow!!

lots of hugs and kisses,
Megan

tomorrow, tomorrow..

So the big day is finally here!!! Can you believe it?!? She had her blood work done today and was not a happy camper but it is done! We have to be at the hospital at 9:00 in the morning and the surgery could start anytime between 11 and 1:00. We are honestly just ready for it to all be over with! I am nervous but exhausted so I hope I sleep some tonight! No formula after midnight and clear liquids until 8:00. Please pray that she won't be hungry and fussy! And for this mama and daddy to not be too anxious!!

Also pray for our sweet Madeline.. You aren't going to believe this (well, actually you will!) but Madeline has strep throat!! She had had a cough for a couple of days but no fever and didn't act like she felt bad. When we got home from daycare yesterday, she went from doing okay to running a 102 temp in a matter of minutes. So nana came over and watched Chandler and I rushed to stat care with Madeline. Let's just say that after a chest X-ray, being poked in both nostrils to check for flu and RSV and a shot of antibiotics that she won't go so willingly to the doctor's office next time! When we were getting ready to leave she said "no mama I can't walk!!" Poor baby.. She was pitiful!! So you can imagine my guilt at having to leave her at my parents so she wouldn't get Chandler sick!!! Kris came to the rescue, as always, and figured everything out while I sobbed uncontrollably in the parking lot! He really is amazing even though I give him a hard time.. I am thankful I have him on my team!!

Everything is packed up and waiting for us to pull out of the driveway at 6:30 in the morning.. Please continue to pray for sweet Chandler Megan Smith and the surgeons, me and Kris, Madeline, grandparents, and Shimmy as tomorrow will be a long day but the outcome is sure to be a great one!! And we can't wait to see our "new and improved" angel and to see what's in store for our family of four..

Anxiously waiting on tomorrow,
Megan

P.S. Exactly one year ago today (Valentine's Day), we announced that we were going to have baby #2.. Wow!! What an incredible journey we have been on in a year and we give all the glory and praise to God!!

a minute..

"In a minute."  Have you ever said this and "a minute" turned into five minutes or thirty minutes and felt like a flash?  Well, when there is a crisis, that "minute" can feel like hours, especially when it involves people you love with all of your heart.  Things can change in an instant..literally a minute and that is what happened this weekend with two of my favorite people who are very near and dear to me.  And nothing can happen to these two, because they are some of the only few who know how to keep me from going crazy, which isn't very far off from now!!  The outcomes are fine but getting there was the scary part.  As I told my Mama, if things don't get better, I will need a one way ticket to loony ville, soon!!  haha

It all started Sunday morning when Kris got home from work around 8:30.  He said, "I am going to take my jacket off, so don't be alarmed, I have been in the ER."  What..ER?!?  You are kidding me, right?!?  Basically, what had happened was...they were fighting a house fire at two in the morning, and he was trying to pull an air conditioner unit from a window to vent the room and the glass fell out and a piece went into his arm.  Now at the time, he didn't know it, he said it felt like something hit him in the arm and then he felt water running down his arm, or so he thought.  They didn't have the hose!!  Then he realized he was bleeding.  Upon further investigation, they found that a piece of glass had lodged into his left forearm and broke off.  He lost a lot of blood, went into shock, passed out and was then rushed to the ER.  They took an x-ray, removed the glass, took another x-ray to make sure they got it all and cleaned it out.  The cut was about an inch and a half deep and 1/2 inch wide.  It was too deep to put in stitches, so it will have to heal from the inside out.  They gave him IV fluids and antibiotics and sent him home with antibiotics, pain meds and bacitracin (misspelled?) ointment and told him to keep it bandaged to stop the bleeding.  HE IS OKAY, just scared the heck out of me!!  Which is why he told his firemen buddies, "Unless I am dying, whatever you do, don't call my wife!!"  He knows how I freak out and I was home alone with the girls, so there wouldn't have been anything I could do, but worry and STRESS...  He says that it is sore and hurts when he moves it a lot, but he will go back in two days and get it checked out again.  But don't worry about him, he has "Dr. Madeline" taking care of him and making sure no one bothers him.  "Shhhh, Daddy's seeping!"  She didn't even want to flush the toilet yesterday, because it might wake Daddy...she is too much!!  All I can do is laugh to keep from crying..he is very lucky/blessed because it could have been much worse.  God is so good to us, He really is!!

Now on to my second heart attack of the day..we went out to Kris's grandmother's for lunch Sunday afternoon and headed home about 5:30.  The weather was bad, but nothing out of the ordinary.  Little did I know that a huge tornado was tearing up Hattiesburg, where my sister lives!  I had given Chandler a bath and was getting her dressed when my phone rang and Kris said it was Kimberly.  I said that I would call her back when I was finished bathing the girls, so we didn't answer it.  I was then dressing Madeline, and Kris came down the hall reading a text that stated, "We need volunteers to go to Hattiesburg for search and rescue."  My heart dropped as I left Madeline standing on the counter to get to my phone.  Those were the longest minutes ever!!  Kimberly didn't answer until what felt like the fifteen ring, an eternity!  The first words out of my mouth were, "ARE YOU OKAY?!"  She was fine just shaken up and no damage to her house.  She said she was watching TV that was going in and out, and Dino started barking and growling like something was coming..boy is he smart! ha  She went to her carport door that faces Southern's campus about a block away, and she saw the tornado and it was coming straight for her house!!  She said that she could hear it and watched as it tore up everything in it's path..she just knew she was going to get blown away!  "We're not in Hattiesburg anymore, Dino!!"  By the grace of God, she and her house were spared, but Southern's campus was not and neither was a neighboring school, Oak Grove nor the town of Petal.  It's like it just picked spots to touch down and destroy. 

Kimberly didn't take this picture, but can you imagine what it looked like in person?!?   Looks scary enough, to me!!        It was said to be a mile wide!!

I still have a knot in my stomach knowing how much could've changed in a minute with my husband and sister..and neither had any control over things.  Brings tears to my eyes about just how precious life really is.  You could say that they are lucky, I will say that they are blessed and that God was watching over them.  It is sickening to look at pictures and footage of the damage on Southern's campus, which is where I attended undergraduate school and spent five years of my life working at the DuBard School for Language Disorders.  Please pray for the families affected by this devastating destruction and don't take minutes for granted, because you never know when things will change..  Also, please continue to pray that surgery will in fact take place on Friday, because I seriously don't know how much more this Mama can take!

"Take my picture Mama, I being silly!"

waiting patiently for her RSV shot..she had no idea what was coming!  Poor baby!

Madeline consoling Chandler, and it actually worked!  *warms my heart*

fun on a dreary Sunday, before Daddy came home with his "bo bo"

sisters watching cartoons..notice sassy big sissy, wonder who she has seen standing like this?!?

teetering on the verge on insanity (ha),
Megan