God is still showing off. He has a different story written than anyone anticipated. The past few days things have been going really well. Carter is doing better with the wean than anyone expected. We are loving that we can hold and cuddle him. He has made major strides in the right direction. He is a completely different baby than he was this time last week. The nurses and Doctor’s cannot believe the improvements he has made. All I can say is, we serve an awesome God! Carter has gone on several wagon rides around the PICU. They have a few big windows that we are able to pull the wagon up to and Carter is able to look outside. He loves looking outside and we cannot wait until he is stable enough to go outside! He has been in the PICU so long that we know most of the nurses, and he is like a little super star on his wagon rides.
One of Carter's nurses made him a license plate for his wagon.
Carter seems to be waking up from the fog that he has been in the past 8 weeks. It has been so nice to have our laughing, happy baby back. His body is still craving the medications, and he does have some not so good moments. The main problem is that he is having with the withdrawals are gagging, sweating and vomiting. He is also having trouble swallowing. Thankfully, these are all things that we can manage. We have been in Baltimore for over 9 weeks now, and we finally feel like we are towards the end of this journey. If Carter continues to tolerate the withdrawal of the I.V. medication as well as he has, he will be completely off of all of his I.V medication at 4am Friday morning!!! He will still be on a TON of oral medications, but we are thrilled that the IV medications are coming to an end. They consulted a social worker to start looking into getting a car seat that Carter will be able to travel in. His cast will stay on for another month, and he is not able to sit up completely because his legs are casted straight with no bend in the knee. We were thrilled that the car seat is already being looked into. It makes our hearts smile thinking we may be able to leave the hospital within the next month. Please continue to pray for the withdrawal process. Pray that Carter’s body continues to tolerate decreasing all of the medications. Pray his bladder continues to empty properly, and that we will be able to remove his supra pubic catheter soon. Thank you all so much for all of your prayers for our family. As always… To God be the Glory!!!
My older brother Josh and his wife Morgan came to visit us this weekend. On Mother's Day weekend, my little brother Zach surprised me by flying in visit. Carter actually cried when they left.
These are two more cute signs that some of Carter's nurses have made him. He loves them. He shows them to us all of the time.
My little PICU celebrity, waving at everyone with one hand and hold his sword with the other!
Looking out the window. Do you notice what is missing? He is not wearing a hat or sunglasses!! He is finally tolerating some light.
Trying to sit up and hold his head up by himself! :)
My arms are full! The best way to describe yesterday is that the day was full of God. We could see and feel Him everywhere. Just as I was about to wrap my arms around Carter, He had His arms wrapped around us. Carter slept well the night before, which means I was able to get a little sleep. Brandon and I both got our showers early, and we got Carter ready for the day earlier than normal. Carter was scheduled to go to the Operating Room at 9am. At 8:15, the Anesthesiologist came in and said that things were ahead of schedule and he would be going to the O.R. early. Anyone that has been in the hospital knows that this NEVER happens. The Anesthesiologist noticed our accents. He had one too, and we began to talking to him. He left our PICU room for a few minutes and returned with 2 hats, 2 gowns and 2 masks for Brandon and myself. He allowed us to go back to the operating room with Carter, and we were able stay with him until he was completely asleep. He then told us to go back to our PICU waiting room, so we could be in the room when Carter woke up and we could hold him. Normally parents, even if they have a PICU room, are required to wait in the surgery waiting room. Anyone that has read my blog knows that I really wanted Carter to wake up in my arms. Housekeeping came in and cleaned our room. As soon as she was done cleaning, they called and said that they were on the way back to the room with Carter. Our nurse and myself hurried to get Carter’s room ready. We moved all of his equipment, so that he could see out the window from his bed. Carter came back from the O.R. and the anesthesiologist, nurses and PICU Doctors hurried so I could hold him.
Carter was asleep when he was put in my arms. Still asleep, he immediately turned towards me, smiled and held onto my shirt as tight as he could. It was an amazing feeling. It was a similar feeling to holding him for the first time after he was born. Although, I think it may have been better. This time I could feel Carter’s worries slip away. Carter was having uncontrollable shaking when he was laying in the bed (from all of his medications and anesthesia), but as soon as he got in my arms, he stopped. He stayed asleep for about 30 minutes, and then he woke up happier than he has been since March 27th.
Carter has been absolutely miserable for the last 8 weeks. He constantly cried and held his arms up multiple times a day for Brandon and I to hold him. If the curtain was open in our room, he would repeatedly point and tell us he wanted to go out. We had to keep all of the lights off and the shades pulled down over the window, so that he would sleep as much as possible. The look of relief on his face when he woke up was unforgettable. He immediately started smiling, dancing and laughing. Everyone that came into the room left with tears. They could not get over the fact that none of his medications had been changed. The only difference is that now, he can be in our arms. We held him until it was almost time for bed.
He does not have much head control, and he is going to have to learn how to sit up again. Those are things that will all come with time. His legs are casted from his thigh to his toes. They have a bar attached to them that keeps him from being able to close or spread his legs. This morning they decided to go ahead and pull Carter’s ureteral stents, and they did an ultrasound this afternoon to make sure his kidneys are functioning well. He still has his supra-pubic catheter, and he will continue to have it for a while.
There were many first yesterday. I was able to hold him for the first time in 2 months. He was able to put a t-shirt on, and another HUGE first was that I changed his diaper for the first time in his life without doing a dressing change to his bladder. I am still feeling like I forgot to do something! We know all of these things would not be possible without God. He has given our Urologist, here at Johns Hopkins, the skilsl to save children’s lives that were once deemed inoperable and sent home to die. We were reminded today just how rare Carter’s birth condition is. We were informed that Johns Hopkins Children’s Hospital is celebrating 100 years of treating children this year. We were also informed that Carter is the 100th Cloacal Exstrophy closure performed at the hospital. Johns Hopkins is the leading hospital for closing Cloacal Exstrophy with the second leading hospital recently only closing their 54th Cloacal Exstrophy child. We were amazed that the hospital is celebrating 100 years this year and Carter is the 100th Cloacal Exstrophy closure. I think God is just showing out. We spoke with the public relations department today about sharing the news. I will keep everyone updated on what they come up with.
They gave Carter a break yesterday after he returned from the operating room. It was so nice to have our happy baby back. They started aggressively weaning all of Carter’s medications today. We can tell he is not feeling well, and he is having a lot of issues with vomiting. Right now, everything is manageable. It is going to be a long process, but we are ready. We are so thankful to each and every one of you that read and pray for our sweet Carter. We honestly could not make it without all of your support. Thank you and as always… To Him be the Glory!!!
My arms are full!
Daddee's turn!Carter was able to get out of his room in the PICU for the first time today. He went on a wagon ride around the unit. His eyes are still sensitive to light so he wore a hat. He had a great time!
" When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze." ---Isaiah 43:2
The light is getting brighter at the end of this tunnel. Since March 27th ,we have not been able to hold Carter. We have not been able to soothe him when he cried out in pain, rock him when he was restless at night or pick him up when he looked at me with his arms up in the air. Thank God this part of the journey will come to an end tomorrow. We will finally be able to hold him! He has laid completely flat on his back since March 27th. To say that we are excited is an understatement. He still has a LONG road ahead of him, but we are slowly making progress. There have been a few changes. Due to how agitated Carter has been the past few days, they have decided to take him to the O.R. tomorrow and completely sedate him. He is scheduled to go to the Operating Room at 9 am. They will remove his external fixators, the traction and wraps that are on his legs now. They will cast his legs from his thighs to his toes and will place a bar in between them to keep him from opening is legs. The procedure should only last an hour or two and should be one of his easiest trips to the operating room.
Our Orthopedic Doctor told us that they rarely have to cast patients like Carter, and they have not actually had to do it in about 5 years. We have also been told that Carter has had one of the longest PICU stays that anyone can remember for a child with his condition. I have actually been doing all of Carter’s care because the nurses down here do not have much experience with this surgery this far along in the recovery stage. After talking with one of Carter’s nurses about how much he has been through in his short life, she asked if I ever wondered why all of this has happened to Carter. He has one of the worst birth defects that you can be born with and still be compatible with life. He always has multiple complications with each surgery. She was surprised when I told her No. I never question why all of this has to happen to him. It is not my place to question, and I honestly know God has a plan for all of his pain. It is my responsibility to make sure I am living out God’s will for our family. I am not going to say that is has been easy. Watching your child suffer and knowing there is nothing you can do to help them is the most helpless feeling in the world. We have breaking points, melt downs and crying sessions often, but we know it is all for a bigger purpose. The good word says, "Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you.” Deuteronomy 31:6. We learned early on that the only way we would make it through all of this would be to rely and fully trust in God’s word. We know that Carter still has a LONG way to go and our hearts were almost pulled out of our chest today when we were told he could easily spend another 6 weeks in the PICU. It all depends on how well Carter does with the weaning process. He has a lot of strong medications to come off of. Please pray Carter’s procedures go well tomorrow and for him to tolerate the withdrawal process. I hope my next post is full of pictures of Brandon and I holding and loving all over Carter! As always… To Him be the Glory!!!
Day 4 was a busy day! I did not get a picture! :(
SEVEN days!! You read it right. Seven days until my arms will be full again! Carter’s traction and fixators will come off on May 22nd. We are beyond thrilled. I can not wait to hold him! He will still have a long road ahead of him, but I will at least be able to hold him in my arms. I will be able to soothe him and comfort him. Something I have not been able to do since March. Once Carter’s fixators and traction come off, his legs will be put in a cast. They usually do not put a cast on, but Carter has proven how tough he is and they know how bad the withdrawal process is going to be on him. They usually do what’s called the mer-man wrap after the traction and fixators come off. The Mer-man wrap is an ace wrap from the hips to the toes. It is used to keep the legs straight and from being pulled apart. Carter is strong enough that he would more than likely take the Mer-man wrap off, which could cause damage and possibly cause his surgery to fail. We all feel that placing cast will be a much safer option. His cast will start at his thighs and go to his toes. There will be a bar between his legs that will keep him from opening or closing his legs. Right now, we are not sure if they will be able to do all of this in Carter's room or if he will have to go back to surgery.
Everyone has told us to please understand that we still have a LONG way to go. Carter still has to be safely weaned off of all of the medications that he is currently receiving. We could easily be in the PICU another month. Carter is on so much medication that his body will need to safely adjust to not having the medications. He will also have some mobility restrictions that he will have to follow. Another step of recovery is that he will have to have his Ureteral Catheters (Catheters that go up his ureters to his kidneys) removed. They will do this then wait a few days and remove his supra pubic catheter (catheter that is draining his bladder). After removing all of the catheters, the doctors will closely monitor Carter’s kidney and bladder function. Carter’s bladder has never held urine, so we are not sure how it will tolerate urine. There is a chance that his urine could reflux back into his kidneys and cause kidney damage. They will do many ultrasounds and monitor his urinary output to make sure this does not happen. Carter will not be able to leave the PICU (Pediatric Intensive Care Unit) until he is completely off the Dexmedetomidine and Midazolam. All of his other pain and sedation medications have to be scheduled every 4 hours also.
We know Carter still has a long way to go, but are just so happy that we will be able to hold him. Our Nurses and Doctors have made a countdown on Carter’s care board in his room. It currently says 1 week. I am ready for tomorrow when it says 6 days! They have all repedeately told us to get ready for a fight. The weaning process is going to be tough. Our goal is to keep him safe while withdrawing. Even if we are here another month or 3 months we will continue to patiently wait. The countdown is on! As always…To Him be the Glory!!!
I am positive if Carter knew what is going to happen in 7 days he would be making some of these faces!!!
I feel like we are sailing. We have days that are smooth sailing and then swoosh! We hit a storm, and we are thrashed back and forth. Carter is no longer dealing with pain issues, but he just wants to get up. He has been laying in the bed, flat on his back, with minimal movement for 7 weeks now. He has had enough! Carter has started to get silly. He usually wakes up and starts dancing, which leads to wiggling his booty and kicking his legs. It will last a few hours and then he decides its time to get up. Then, he gets mad that he cannot get up. Carter’s Urologist and Orthopedic Doctor are discussing a few different options to continue to keep Carter still. There are no other medications we can use without putting him on a ventilator, and with the recent history of Aspiration Pneumonia they do not want to complicate things further. All off the Doctor’s are amazed that Carter has been able to breathe just fine with all of the medications he is currently receiving. He should be in a coma, yet at times he is wide awake. The medications that require him to stay in the PICU have not been very effective for Carter. Everyone keeps telling us how strong he is. Most children do not have much head control after this surgery because they lay flat on their back for so long. Today, Carter decided he was going to sit up, and he had no problem holding his head up. He nearly sat up. Everyone has been amazed. We are so happy he is so strong and we know this is one of the reasons he has survived thus far. Unfortunately, right now is not the time we need him to be so strong. We need him to lay flat and still in the bed. We are praying they will come up with a plan today. Carter still has a LONG way to go, but we know he will get there.
I have been asked the same question by so many people that I wanted blog and share my response. I frequently get asked if I regret sharing about Carter’s condition or how we plan on explaining that he is different from other children. I also get e-mails from other families asking how I feel about sharing Carter’s condition. Well here is my response…
God made Carter for a purpose. He did not make him to be hidden from the world. He did not make him different. He made him special. He made him perfect. How could I ever try to “hide” Carter’s condition and expect him to not feel ashamed of himself? Each part of Carter’s body was mended together by God’s hands. Does his belly look different than most peoples? Well, yes, it does. He has a feeding tube and an ostomy and a TON of scars or as I like to call them “superhero marks." Most people are surprised when I tell them that Carter already knows his stomach is different than his friends. Different from mine and Brandon’s. He already pulls up his friends’ shirts and looks for their ostomy bags. He looks at mine and Brandon’s stomachs all of the time, and then he looks at his. Yes, it is different, but it does not mean there is anything wrong with the way he looks. It is the way God made him, and we are proud of the way he looks. He is absolutely beautiful! Lets face it. Kids can be mean. I know there will be the day in Middle School or even sooner that someone is ugly to him. My hope is that he does not let it bother him and that he stands up for himself. God made Carter the way he is. My goal is that he will always remember this, and no matter what, he will embrace how he was made. I hope as a parent I can instill a strong enough influence for him to always be strong in his faith and know that God made him just the way he is. I feel like God is looking down and watching his plan unfold and Carter is just an instrument. It is my job to make sure Carter knows he is God’s instrument and to understand that there is purpose for all of his pain. When the day comes and I am looking God in the face I want him to say good job. You served me well.
For you created my inmost being; you knit me together in my mother's womb. Psalm 139:13
Carter gave me an early Mother's Day gift on Saturday! His smile was better than anything money could buy! He also made me a handprint card and gave me some flowers (which were against PICU rules and we had to get rid of them)
Tomorrow, Brandon and I will be married 8 years!!! It is hard to believe it that has been that long. On our 5 year wedding anniversary we went to find out the sex of our sweet baby. Instead, we found out Carter would be born with multiple birth defects. It is a day and anniversary we will never forget! To read more about it click here!
Happy Anniversary Brandon! I love you!! Unfortunately, I have NO Wedding pictures saved on our computer. So here are a few photos of our last 8 years.