Happy 6 months to Maddie!

Updates from facebook...

Well, life is back to normal...BUSY! On Friday, Apr 9 I said I would update "tomorrow" and tomorrow has become a few weeks later. It is so hard to try to find time to blog. Maddie is doing great although she wants to be held all the time and I don't mind!! With that said, I am learning to do a lot of things with one hand but not blogging! It just takes to long to type with one hand!

The purpose of this post is to transfer all the updates that Brent sent out on facebook to my blog so I have a record of them. So if you read those updates you may not want to read any further! :)

Friday, Apr 9...

Well, I stayed with Maddie last night and we had a pretty good night. She slept for a good amount of the night just waking up every now and then. She was getting frustrated because she really wanted to be on her side to sleep, but she wasn't quite far enough over and every time she relaxed to fall asleep, her arm would fall back to her side and she would jump when her arm fell. Then she would cry out, I would get up and put her paci back in and then she would do it again. Finally, one of the nurses help me put a roll behind her back that gave her just enough support on her side to let her sleep.
Last night, one of the nurses turned off Maddie's oxygen and she has been doing great without it. Her oxygen has remained in the mid to high 90s (and even 100%) some. This is great progress.
Also, last night, Maddie took some formula. She took close to 3 ozs. Everyone has heard the saying, 'drive it like you stole it.' I have a new one for the way Maddie took her formula last night -- "Drink it like you stole it." She took that first 2 oz. bottle like she was running the last lap of the Daytona 500. (shout out to all my NASCAR buddies out there. Of course I should have probably said Talladega instead for my AL family and friends!!).
The drainage out of her test tube has been much slower and is showing positive signs.
She still has her cough, but it has not gotten worse. It may be a little better but not much.
Overall, she continues to improve. As Maddie and I woke up this morning, I could see that she was so much closer to the way she was before her surgery. She was giving me some great big smiles. She completely melted my heart with those big smiles. If she could talk right now, she could have asked for anything in the world and I would have said a great big resounding YES.
This whole ordeal has really made me think a lot lately. It certainly has put a lot of things in perspective and has really helped in my walk with Christ. I don't know what I would do if I did not have Him to lean on and trust. On one of the first days after Maddie's surgery, I was begging for God to let me take her pain for her so that she would not have to face it. I was pleading with Him. As I sat back, I thought about Christ dying on the Cross for our sins and taking our punishment and God allowing His Son to die on the Cross for our sins. It really made me think about how Christ is begging with us and pleading with us to repent of our sins and put our faith in Him and accept the free Gift that He has given us. While I was unable to take Maddie's pain for her, Christ was able to take our punishment / pain because of who He is and because He was sinless. This is something that each of us must receive individually. It has nothing to do with us being good people, trying to keep some commandments, helping others, etc. It only has to do with us repenting of our sins and putting our faith in Christ and what He did on the Cross for us.
We appreciate all of the prayers and support on Maddie's behalf, but our prayer is that out of all of this that Christ be glorified and everything that we have been through points to Christ. If there is someone reading these updates and following these that has not repented of their sins and put their faith in Christ, our prayer is that this group, these messages, the prayers of others on the group will make you think about where you would spend eternity and would make you think about what you would say if you were to stand before God and He were to ask you "Why should I let you in to My Heaven." Would you answer something related to how good of a person you have been, the things you have done, the people you helped out, etc., etc. and base it on your own works? Or would you be able to point to Jesus' life and what He did for you and how He died on the Cross for your sin and has already taken your punishment and that you have repented of your sin and put your faith in Him?
If you would not be able to point to Christ and what He did, the Bible says that you will face your punishment and that you will be cast in Hell. If there is someone out there that would like to talk further about this, please message me or Kim and let us know. We would love to walk through scripture with you and show specific passages in the Bible that speak about Christ and what He has done for us and how we can have that personal relationship with Him.
Thank you again for all of your prayers and all of the encouraging words that we have received. We are truly blessed and honored to be surrounded and supported by so many that care for us and have lifted prayers on behalf of Maddie and ourselves.
In Christ,
Brent


Sat. Apr 10...

We have had a great day! Maddie continues to improve!
We just hung out in our room today and Maddie just wanted to play while she was awake.
She is eating great. Please pray she keeps eating. If she keeps eating the way she is, and the fluid continues to drain we can go home. We have heard we may be able to go home Monday, Tuesday, or Wednesday. I am ready to go home but I want to stay until they are sure she is good to go! I don't want to come back!!

Thanks so much for your continued prayers and support! We are so thankful for you!

Have a blessed night!



Sun. Apr. 11...

Just wanted to give an update to everyone since there hasn't been too many updates lately. It's a good thing that we haven't been able to give too many updates lately. That means things are getting somewhat back to normal (busy) and that Maddie is feeling a lot better and doing a lot better so we have much less "sit around" time at the hospital. Maddie is still in the hospital and Kim has been staying with her. Maddie has all tubes out except for one IV that they are keeping in just in case they need it sometime before we leave the hospital plus they are still administering one of her meds through itl. All other medicine has been oral. She has started having some poopy diapers after surgery. Even though the surgery didn't really do anything to her system in that area, the medicines do have an affect and the doctors like to see the poopy diapers before leaving.
The other big praise is the fluid on her lungs appears to have gotten better. The left side drained when they put the chest tube in. Apparently, the right side has drained as well!!!! One of the ICU doctors that we had earlier in the week came by the floor to check on us today and he said that he heard through the grapevine that Maddie's right side fluid was gone. That means that we are much closer to leaving the hospital.
Maddie is really getting back to her normal personality from prior to surgery. We are getting lots of smiles and a few laughs and she is moving all around just like normal. Her color is really good, her oxygen saturation remains high. Additionally, her heart rate and rhythm have also been very good.
Please just continue to pray for Maddie's body to continue healing. Also, pray for her to be in a state where the doctors feel comfortable letting us bring her home. We are ready to be home with our little girl.

Thanks again for your continued prayers for Maddie and her recovery.


Monday, Apr.12...

Just a quick update to let everyone know that Maddie came home from the hospital today!!!! Glad to have everyone back home. Thanks for your prayers and continued prayer for her recovery. We will update more at a later time. Going outside to play with the kids!!!!!!!!!

God is good!!

Wednesday, Apr. 21...

I know that we haven't updated in a while, but it is because things are back to normal around here....BUSY! Maddie is doing really well. Her incisions and pokes and such are all healing up quite nicely. We'll have to get a current pic on her for everyone just to give you an idea of how well it is healing up. She is as active as she was before surgery. All of her bruising and such is now gone as well. We are so thankful for God's healing hand on her life. Our prayer is for continued recovery and for one day for God to heal her spiritually through repentance and faith in Christ. Thanks again for all of your prayers and the encouraging words.

Day 5

All I can say is Well Glory! We have had a great day and I know it is because of all the prayers.

I am so tired to I'm going to just say that Maddie only has 1 iv, her oxygen monitor and her heart rate monitor. YAY!!!! They removed her chest tube and took some x-rays and all looked good. We still have some fluid on the right side but hopefully the meds they are giving her will take care of that.

I'll write more details tomorrow, maybe, when I'm not so tired!

Slowly moving in the right direction...

Well, alot has happened since yesterday afternoon. Maddie got her chest tube out and her iv line that was going directly into her right atrium. She had a really good afternoon and evening. They took her off of her iv pain meds and she seemed to be able to handle that. They also took her off one of her meds that was helping her to relax and she started to become more alert. Before when she looked at me, it was like she was looking right through me. She was finally starting to respond to our voices and look around. Once she was rested from everything they had been doing, I got to hold her. It was so wonderful, for me and her!!
While I was holding her, some of our Living Hope family, Pam and Aaron Hines, came by to visit. It is nice to have visitors because it helps pass the time. They brought Maddie this cute little pink hedgehog named smitten. It is holding a little heart, which is very appropriate. They also brought some crossword puzzles for me and Brent.
Brent went home this afternoon and picked up the kids and his mom and dad and came back up to the hospital so the girls could see Maddie. It is still very hard for the girls to see Maddie with the lines that she still has. Even though she only has 2 ivs, there are about 3 or 4 lines coming off 1 iv. It is very overwhelming to look at.
Maddie had a pretty good night. She slept most of it. I on the other hand was up every time the monitor beeped, which was quite a bit. She had an x-ray at 5 and then she ate at 6.
After looking at her x-ray the doctor felt like more fluid was accumulating around her left lung so they decided to put a chest tube in to drain it. Because of this, the plan was for us to stay in the icu for most of the day. They sedated Maddie and put her tube in and she did great. I could not believe all of the fluid that drained out, so I took a picture.
We had a few visitors today that helped the day pass. My mom and dad and Brent's mom and dad came by. And our sweet friend Allie Burghardt came for a visit and she also brought a bag of goodies! So sweet! Thanks, Allie! Our pastor, Jeremy Westbrook also came by for a visit and prayed for Maddie! We are so thankful for Jeremy and his family!
After lunch, the ICU doctor came in and said he thought it would be fine to move Maddie to the step down floor! YAY!!!! Our sweet nurse, Jill, came in and took Maddie's catheter out and got us ready for our move. We loaded up all our stuff and headed to C5. This is the cardiac floor that you move to after ICU. Our next move will hopefully be home! Maddie's cardiologist came by and was very pleased with her progress so far, but she felt like Maddie has about 5 more days here.

Prayer requests...
1. We need Maddie to eat!
2. That the fluid will be gone when they do the chest x-ray in the morning and that it will not return!
3. That she can come off the oxygen.
4. Maddie's cough...that she doesn't have a viral infection
5. No pain
6. My dad...he's not feeling well

Thanks so much for being so faithful to pray for us!

Maybe I'll post pictures later. For some reason, my computer is not recognizing my iphone...

Can you hear me Praising Jesus?!?

THANK YOU! THANK YOU! THANK YOU! to those of you praying! Our prayers have been heard and answered! Maddie has been draining fluid all day, enough so that they are taking out all of her lines and tubes with the exception on 1 iv line. They are leaving 1 in so they can draw labs and give meds. Maddie also took 1/2 of her bottle twice today!

I am so thankful God has heard our prayers! I can't wait to get me hands on my sweet baby! With that said, I don't know when I'll post again! :) If I can hold my baby, then that's what I'll be doing! I will post if we have any big changes or new prayer requests.

I can't thank you enough for following our journey and lifting my sweet Maddie up to our Heavenly Father.

Our plan for the night is to stay here in the ICU. She is still on her heart med which they are not going to take her off of this until in the morning. They will stop that med in the morning and monitor how she adjusts. She is also still on a little bit of oxygen because she still has fluid around and in her lungs. We are hoping that once we get her up that some of this will drain out. We will be in the icu until at least tomorrow afternoon, so I'm not sure when we will be headed to the step down floor. I've decided that I like being here in the icu because the staff is so wonderful and attentive!

Please keep praying that the excess fluid will be absorbed or drain! If not, they will put a tube in to drain it. And please pray that she will continue to eat, even if just small amounts!

I wrote a note to the lady next door and my nurse took it over. I just let her know that all of you are praying for her. She immediately came over and said thank you. Her name is Jessica and her baby's name is Josie. Please keep praying for her. Please pray that I will get an opportunity to talk to her.

Last, but not least, our sweet friend Tina Hill came to visit us today. It is such a blessing to be able to visit with friends and a blessing to Maddie to know she is loved! Thank you Tina for taking time out of your day to come see us! We love you!

Day 3 in the morning

Lamentations 3:22-23
22 The LORD'S lovingkindnesses indeed never cease,
For His compassions never fail.
23They are new every morning;
Great is Your faithfulness.


Praise God from whom all blessings flow!!!!!

We had a good night. Maddie's pain meds allowed for her to rest. She did wake up a few times but went right back to sleep. They changed the dressings on her chest tube and incision. (Now we see a lot less blood) They removed the oxygen monitors on her forehead and back. The chest x-ray showed some improvement from yesterday but we still need the excess fluid to continue to drain. We are improving and we thank Jesus for that!! We know He is taking care of her and providing her every need! Thank you for your prayers! I'll update in a little while after the doctors do rounds and we know what our plan is for today.

Prayer requests for today...
1. The little girl next door will improve
2. Maddie's excess fluid will continue to drain
3. Her pain meds will continue to work and that she will only need a lower dose so that she will be able to wake up a little bit
4. She has had enough improvement that she can come off the heart med, have her iv line that goes directly into her heart removed and then her chest tube can be removed
5. For her catheter to be removed (They decided to leave it in to monitor drainage instead of having to weigh diapers)


Here are a few pics of Maddie this morning...

Day 2 evening

Brent and I are sitting in the icu completely overwhelmed! It is 9:00 and we are just sitting here looking at Maddie. I know I have sent a lot of updates today but since we can't really "do" anything I'm just typing on the computer. Hey, it keeps me occupied! Once we move to a regular room I don't know how often I'll get to update! Hopefully it will not be alot and I'll be holding my sweet baby. It's really hard to not be able to hold her!!!

Maddie seems to be doing much better! Praise the Lord! They have her on her new pain meds and them seem to be working. She is sleeping so peacefully.

We are so thankful for all the prayers and encouraging words from all! Brent and I decided to go down to the cafeteria to eat dinner while the nurses were changing shifts and Maddie was sleeping. While we were there, a man came over and was just such an encouragement to us. He was actually in the surgery waiting area yesterday while we were waiting for Maddie to come out of surgery. He told us he had been praying for us even though he didn't know anything about what our situation was. God is so good to send encouragement when you least expect it. John was definitely a blessing to us. Please pray for his nephew and his recovery from his surgery.

I talked with my mom and Brent talked with his mom and they seem to be holding down the fort at home (with the supervision of Pop and Grandaddy of course!) . Emma, Molly, and Miles were all in the bed and hopefully the grandparents can get some rest (that they probably really need!) Especially after taking care of three wild kids all day! Thanks Mary Jane for taking dinner to our family. What a blessing you are!

Brent and I are also thankful that the charge nurse gave us a parent room again tonight.

I forgot to post in my afternoon update that I had the opportunity to talk about Jesus with a nurse that we only had for 3 hours. Usually you have a nurse for a whole shift (12 hours) but they brought in a new patient that needed our male nurse. So, he left and Erin came in for only 3 hours. As we were talking and I told her I was from Memphis, she told me that her boyfriend lives in Midtown in Memphis. This opened the door for me to share why we are here in Marysville and to tell her about Jesus.

Well, before I close my blog down for the night I'll share a funny story. Brent and I went to eat lunch and we decided to eat outside at the picnic table. As we were walking toward the table a big wind came and one of the BIG blue patio umbrellas started flying toward me. All I could do was duck down and it flew right over my head. Brent said it barely missed me. I wonder if Children's hospital would stitch up an adult if their patio umbrella busted open my head?

One more thing...we just found out that the 6 month old baby in the room next to us has been here since Feb. 14. She was moved back to ICU tonight from the step down floor. Please pray for her and her parents. We don't know her name or what is going on, but God does!

Also, our nurse, Brenna told me that her husband and some of her children are not saved. Please pray for Brenna as she shares the gospel with her family and pray that they will be saved!

Thank you for being so faithful to pray!
Good night!

Day 2 afternoon...

Right now it is 4:00. Brent and I went to eat lunch and when we came back they had done a chest x-ray and blood gas check and they were in the process of doing a heart echo (ultrasound). I immediately began to worry because I didn't know they were doing an echo but I just kept reciting Is 41:10 to myself until I knew what was going on. Thank goodness for God's word!
Her x-ray was the same as it was this morning which is a good and bad thing. Good because there is not more fluid but bad because the fluid is not draining. Because of this they added an extra med that will help drain excess fluid. We need this fluid to drain because it is around the lungs and she cannot leave the icu until this fluid is gone. If the meds don't work they will have to put a drainage tube in and it could have to stay in for a few days. The blood gas came back as all normal which is good. And the heart echo showed the heart looks great and is functioning just as it should! They had to call pain management in again because the pain meds are just not working. My sweet baby is very uncomfortable and they have had to move her around a few times and she just screams out in pain.

Basically, here are our pray requests for now...
1. That her pain meds would work and that she would be able to rest
2. The meds will help the excess fluid to drain and
3. That should would be able to eat (She hasn't eaten all day!)

I have to say I could never have imagined how hard this is! As I sit here looking at her, thinking about how much I love her I am reminded that God loves her even more than I ever could. I am so thankful that He loves her. But I also think about how much it hurts me to see her in so much pain and agony. I'm then reminded that God gave His Son to die on a cross.
John 3:16 says "For God so loved the world that He gave His only begotten Son, that whoever believes in Him should not perish but have everlasting life."

My Maddie's heart has been physically repaired but only God can heal heart heart spiritually and I'm praying He does that at an early age!

Here is a picture of Maddie in her socks...

Here are a few pics from today.

Maddie is holding on to the cord for her oxygen monitor and every time she wakes up, she pulls the cord so I got her bunny and gave it to her so she can hold on to that!



You can tell by this picture that Maddie's face is really swollen. She is getting some meds to help drain excess fluid. So hopefully this swelling will go down today.




Maddie holding her bunny...

Day 2 in the ICU

Last night, Brent and I decided we would stay in the parent room to try to get some sleep. We had gotten up at about 4:30am so we decided that would probably be best. We went to bed around midnight and slept off and on until about 6.
Maddie didn't have the greatest of nights. Her pain meds were not working so they switched her back to what she was on originally with a higher dose. Then around 4 they added a med that would help her heart recover from the bypass machine and start working a little better. She was a little cold to the touch and her circulation was not what it should have been, so this heart med was added. Her hemoglobin was low. It went from 13 (point something) to 6 (point something) so she was given some blood to help with this. She was also given a med that would help her urinate. She didn't eat anything all night so we are hoping this will pick up today.
She seems to be resting right now, so we are hoping that when she wakes up she will feel a little better. She still has all her lines and tubes that she had yesterday and because of the new heart med she has to stay in the icu for another day. I hate that she is still in the icu but she did just have open heart surgery and I'm glad they are monitoring her so closely. The staff here at Children's is so wonderful! They have been such a blessing and seem to care so much. They assign only one patient to each nurse so she is getting such individualized care and the nurse stays in the room.
Her plan for today is to have her catheter removed and a few other lines. She has to keep her chest tube in until tomorrow because there is an iv line that goes directly into her heart that is not being removed until tomorrow. When that iv tube is removed there is sometimes some bleeding. If the chest tube is still there, the excess bleeding can drain out that tube and the drs can see it.
We would ask that you continue to pray for Maddie's recovery today. Specifically that her body would process the excess fluids that she has retained. Also, pray for minimal pain. Pray that her hemoglobin count would come up. As they take her off of one of her medicines, her body will produce the right hormones to allow her to relax. Pray that as she comes off her oxygen that her body will handle that okay. She also really needs to eat. Please pray for her appetite (and her interest to eat). Thank you, thank you, thank you is all that we can say. We rest in knowing that we serve an awesome God! We pray that His will be done and that He continue to get all glory and all honor for He is the only one that actually deserves any of it!!!

My verse for today is...
Phil 4:19 "And my god shall supply all your need according to His riches in glory by Christ Jesus."

Praise the Lord He takes care of our needs. I'm praying this for my baby girl today!

It's been a long day.

Well, today was the day we have been waiting for but dreading at the same time. Maddie could not have anything to eat after midnight. We were very nervous about this because Maddie has been eating every 3 hours even through the night. We gave her a bottle at midnight and she slept until we got her up at 5:15. We left our house at 5:30 and got to Children's at a little after 6. We were prepared for a long ride full of screaming but Maddie slept the entire way. I am so thankful that God provided Maddie what she needed and she was able to sleep. What a loving God we serve! We got checked in for Maddie's open heart surgery. Jeremy and Gerry came by and prayed with us and stayed until they took Maddie back. We walked her down, kissed her goodbye and headed to the waiting room. That is one of the hardest things I've ever experienced...to hand over my baby for what was about to take place!
Mom and Dad brought the girls down to the hospital so they could wait with us. Ronnie and Randy took Miles to Jennifer's to play with Caden and then they came down to wait also. As we were waiting my sweet, precious friend Tiffany Brown showed up. I had no idea she was coming and it was such a blessing to me. Words will never be able to express to her what that meant to me.
The doctors and nurses gave us updates ever hour and a half. That was nice to be kept in the loop. Maddie did great! They started surgery around 7:30 and were pretty much finished by 12:00. Dr. Galantowicz (Maddie's surgeon) came out to the waiting room to talk with us by 12:15. All I can say about what her Dr. said is GOD IS GOOD!!!! Maddie came off the breathing machine and heart machine with no problems. He repaired the large whole and actual stitched up another tiny hole. He was able to save her pulmonary valve (huge answered prayer request) and he shaved the muscle tissue that was blocking her valve. All in all Maddie did wonderfully. Once, Maddie was settled in ICU we were able to come back to see her.
Right now, we are in the icu just trying to keep Maddie relaxed and calm. I can't put to words how she looks, so I'll show you a picture...




Children under 12 are not allowed in the ICU except if patients are doing ok they let siblings come back. So, Emma and Molly were able to come back and see Maddie for a few minutes. This was very hard for them but they really wanted to see her.
Once everyone had their visit, my mom and dad took the girls to Claire's (at the mall) to have some happy time. That is one of the girls' favorite things...going to Claire's with Pop and Gigi! Ronnie and Randy headed out to pick up Miles.

As for Maddie...
She has already had a bottle of pedialyte and formula. She kept that down and so they are happy with that. The first 12 hours are crucial and after the first 24 hours we will be able to relax a little. They did have to switch her pain meds b/c the first one was not working. We are continuing to pray for her comfort and healing and a good night's rest.

Isaiah 41:10 says "Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you. Yes, I will help you. I will uphold you with My righteous right hand."

This has been my verse from the day I found out that Maddie had tetralogy of fallot. I never dreamed when I was pregnant that I would be walking this road but for some reason God chose to create Maddie's heart exactly the way He did and I am thankful. I am thankful because God has taught me so much through this journey and I'm continuing to learn more about Him every day. I am reminded that I am nothing with out Him. I know that God is going to use this experience to bring glory to Himself and we would want it no other way. I'm excited to see how Maddie will be able to use this experience to tell people about Jesus...and I know she will.

I am so thankful for all the many prayers being lifted to our Heavenly Father for Maddie. What a blessing!!! Brent and I will never be able to express our gratitude to all of you who have and are praying!!! So, to those of you praying....THANK YOU! THANK YOU! THANK YOU! and WE LOVE YOU!!!