Trach out and another heart surgery.

Wow, it's been a really long time since I've updated Marley's blog, imagine that! So since the last time I updated this several things have happened.

Marley followed up with all her doctor's (she sees about six regularly), and we continually received great news from each doctor. Marley had her follow up appointment with her cardiologist and ent in February, they both gave us nothing but great news! Dr. Lundt told us she didn't see anymore heart surgeries in Marley's future and even took her off one of her heart medications! Dr. Siemen's (ENT) told us Marley is doing so well off her vent that he would like to schedule her a picu stay to get her trach out! I couldn't believe it I cried tears of joy. Finally nothing but great news for my sweet baby.
Marley ended up getting put back on her heart medication, she failed coming off of it. She started desating, being cranky, and not eating well. So Dr. Lundt decided weaning her would be a better way of going about it. So after one dose Marley was already back to feeling like herself. The medication btw is viagra. Even with that little set back she was still scheduled Feb 25, to get her trach out.
We went in that morning praying for the best. We were nervous wrecks our last stay in the picu was 9 1/2 weeks and with how tricky Marley is a short stay can always turn into a long stay. But Dr. Siemen's did her bronch and said her airway was completely open! So he put a smaller trach in and said in one hour they could take it out and she would be trach free! Marley Moo didn't even required oxygen or any type of support when they took the new trach out. She is always surprising me with how strong she is. It was so amazing to finally hear her sweet voice again, even if it did scare her for a while. When she cried she'd look around and cried harder because she had no idea what that noise was.
Our short stay stayed a short stay almost exactly 24 hours from the time of Marley's admitting she was discharged. Marley's trach site closed without any problems or infection, but we were sticklers about the care of the trach site. Marley followed up with Dr. Siemen's two weeks later and he told me we didn't have to come back to see him anymore! Now Marley only has 5 doctors she sees regularly. It's always a celebration when Marley is released from a doctor or gets to discontinue a medicine.
Marley did really well for a couple of months and I was starting to breathe easier, when my Mom noticed some veins on Marley's chest that hadn't been there before. We thought maybe it was bruising and prayed it wasn't her heart. Marley's perfusion in her head started to appear diminished and I was sick with worrying. So I took her to her pediatrician and showed him her veins, of course his reply "I've never seen this before, you need to call her cardiologist". Of course something someone has never seen before nothing new for my daughter. So I called Dr. Lundt and she made an appointment for Marley for four weeks out, because she said it was probably nothing. This gave me a little relief, but in the back of my mind I knew something was wrong.
Marley also had developed an exceptionally large head, I really thought she just had the Milligan head, but come to find out not so much. I called Dr. Lundt again and said I just feel like she's looking worse. So she had an appointment the next day. Marley had an echo done, the report not good. Her SVC was completely obstructed and would required open heart surgery and another heart catherization. My heart broke and I tried to fight back tears while Dr. Lundt was talking to me about Marley's condition. She told me she might be admitted today to start her on a heparin drip, but they may let you go home and come back tomorrow. We had to wait on the surgeons to get out of surgery to decide. I'm so glad my Mom was with me, I felt like I could just cry my eyes out, and of course she was there to help me be strong for Marley.
Dr. Lundt came back and told us they were letting us go home, but they would call me with her hospital orders later that day. I was so numb and I had to call so many people and cancel so many of Marley's appointments and with each person I called I think I cried a little more telling them about Marley's new condition. I just couldn't imagine her going through another open heart surgery, and having to recover from all of that again. It hurt my heart. Then all I could think was I never would have let them reverse her trach if I just would have known. I tried to pray my way through these emotions and just be with Marley, but it was hard. I cried while I was rocking her that night to sleep, I knew it very well could be a long time before I get to rock her asleep again. Everything was hard.
At 9:00 a.m. on April 21 Marley was admitted back into the PICU. It was nice to see so many familiar faces, but at the same time we'd much rather had ran into them at Target then in the PICU. Marley went back for her heart cath at about 12:30. Brother Kelvin led us in prayer and I got to carry Marley to the surgery area. I was a nervous wreck along with my family and friends that were there with me. Two hours later we found out they couldn't get in through Marley's femoral arteries because they were too damaged from all her other heart caths in her short little life. So Dr. Kimberling planned to do another heart cath the next day he said he could possibly go through her jugular or her liver. While Marley was being taken back to her room to recover, Dr. Barth came into the waiting room to talk to another family and saw me and came to talk to me. She gave me the greatest news ever, she said along with Marley's other heart surgeon that they should be able to fix her heart during the cath with a stent and won't required open heart surgery. They had placed Marley's SVC in a different location during her open heart surgery, foreseeing this could happen and knew how to prevent Marley from needing open heart surgery again. These surgeons are incredible.
I just wanted to jump out of my chair and scream and jump and cry all at once. This was great news! Now if they could only get in her poor little vessels to do the cath. Marley had a CT that night, it took awhile to get her there because they had to extubate and reintubated her because she had a huge leak around her et tube, and they couldn't get a big enough iv for the contrast. After about a million pokes they finally got an IV. They took Marley to CT and we would find out the results the next day. Of course in truly Marley trickiness they didn't get good pictures, but Dr. Kimberling said he thought he saw where he could get in to do her cath. So Marley went back for her 7 heart cath. We all just prayed and prayed.
About 2 hours later our nurse Melissa called to tell me the best news ever Dr. Kimberling got Marley's stent in! Praise God another miracle for Marley! Shortly after that Dr. Kimberling came in to show me the pictures of her SVC. Her SVC was almost as extreme as her coarctation and her pressures above her SVC were 22 and below was 10. Thus causing her huge head, poor perfusion, and veins on her chest. He said Marley really should have been acting really cranky and eating poorly. She also should have had a terrible head ache. Marley never complained about anything she was sweet just like always, and I believe God didn't let Marley feel how bad her head hurt. He's always watching over my little girl.
We literally watched the veins disappear on her chest and her head shrink. The next task would be extubating her and I was worried since her trach was so recently reversed. Marley struggled for a while and required oxygen and breathing treatments, but she did it! She stayed off the vent and got to come home April 25! Oh and she came home on no heart medications, well except aspirin. Marley is healed.
She is home and doing great! She's developing great and is always a happy smiling baby. She's been through so much and I'm so thankful for every one's prayers, kind words, and encouragements. Marley has touched many people's lives. I've had so many people some I've never even met before reach out and tell me how she's brought their faith back. A tiny baby that never should have made it has one heck of a testimony to share with the world.
I've been told by many people that I'm an inspiration to them, I'm a wonderful Mom, and they don't know how I do it. Honestly I don't know how I did it, besides my faith, family, friends, and the love I have for my daughter. I knew I had to be strong for Marley. In situations like these you pray for the best and you prepare yourself for the worst. At Marley's sickest I thought how can I ever live if I lose Marley? And I realized I wouldn't because if Marley passed away my heart would go with her. So right then I claimed in God's name Marley was healed. Whatever came against her she would win the battle and she has. There have been days that I have wanted to shout enough is enough, but I look at Marley and she always has a big smile on her face and I know we'll be okay. I've found that what doesn't kill us makes us stronger and God really does have a plan for us all. So thank you for everyone who has told me I am an inspiration, but the truth is I'm just the Mommy to the most precious and miraculous little baby ever. I'm nothing special, but Marley is.


Thank you to all the PICU staff for again saving my daughter's life.