Joelle and Ella's story:
We had been going to a high risk doctor, because I am type 1 diabetic. When we went for a 14 week ultra-sound the technician said that the baby's heart and stomach should not be in the same picture frame together, and proceeded to get the doctor. The doctor diagnosed her as having congenital diaphragmatic hernia (CDH) and she explained to us that she had a hole in her diaphragm and this caused her organs to be all up in her chest. We got referred to Vanderbilt Children's Hospital to a pediatric cardiologist, high-risk specialist, and pediatric surgeon. We have been having ultra-sounds twice a week every since. They found that her stomach, intestines and 20% of her liver had moved up to her chest cavity. This causes it to compress against the heart and lungs --making it difficult for them to develop correctly. After seeing the pediatric cardiologist they also believe that her heart ventricles are to narrow, and this could be caused from either compression from her stomach or something much worse. With CDH only we are given only a 50% chance for her survival. If it turns out that there is a problem in her heart as they suspect then they will not perform any surgeries as she will only have a short time for survival. She is scheduled to be delivered August the 14th via C-Section. She will immediately be tubed for oxygen and then another tube to remove the air in her intestines. Then taken to the NICU for her assessment and testing. Those few hours that it will take them to run the tests will be the longest time of our lives. This entire journey has been a very emotional one as my husband had been unemployed and only recently found a job. We have also been dealing with the extra stress of only having one vehicle and my husband does his best to insure that I get to my doctor's appointments as needed, but it has not been an easy juggling act. Each case of CDH is so different that it makes it hard to prepare for everything as no two cases are exactly alike. Though it feels like it has been a long road that we have been traveling we are happy that she will be blessed in having two older brothers: Ethan (4) and Elliott (2). This has been the story of our soon to be daughter ---Ella Marge, and continue to pray that her story continues to be written for a long time to come.
ELLA IS HERE, early but here. My water broke yesterday morning, Eric rushed me to Vandy and within a few hours she was born via c-section. She weighed 8lbs. 7 oz. I did not get to see her right away because they took her away to be stabilized. She has a head full of beautiful hair. She had a very rough time and they had to put her on ECMO (heart & lung bypass). This is not what we wanted but are thankful we were in a place that had it and she has been doing well on it. Her stomach, intestine, and almost all of her liver was up in her chest cavity like they thought but the good news is her heart just looks compressed, no ventricle problems! We need lots and lots of prayers as she is still in critical condition, but at the end of the day, she is here. God is Good, all the time, even early.
ELLA OPENED HER EYES TODAY!!!!! She is still having it hard on the ECMO, but we still have a lot to be thankful for,thanks for your continued prayers.
Ella was able to open both eyes. She still has a lot of fluid in her little body , but they are working on it along with her blood pressure. They switched out some of her medications and she is on morphine currently. She really seems to be fighting hard and is responsive to our voices and touch. We continue to pray for God's healing and thank everyone for showing us love and support. You guys are awsome :)
Dad got to change Ella's diaper, brush her gums, and take her temp today, busy day. Ella is scheduled to have her repair surgery tomorrow at 11:00. We need lots of prayers that her bleeding will stay under control, she has been on heparin and they will have to stop it for the surgery. The ECMO has helped take a lot of fluid off her little body and they were able to take out her catheter, but she is still on lasik.
Ella had her repair today, and they can't stop the bleeding, she is in critical condition, they only have two more options,we need prayers, God is amazing, I know he is still in the business of performing miracles.
They are doing an emergency exploratory surgery on Ella right now to see if they can stop the bleeding. Please pray for her at this moment that they are able to find the source of the bleed and she survives this stronger than ever.
The doctor just finished the second surgery on Ella and he said they were able to find several sources of bleeding and stitch them up - they also put in a new chest tube and put some gel around it to help with the bleeding - she is still bleeding a little, but it is relatively small compared to last time - the same doctor that was ready to give up is now fairly optimistic about her current condition and is talking about treatment within the next couple days instead of using terms in hours - God is still listening.
Had a little scare last night-we were going to actually sleep in our own beds when the doctor called saying that they were going to have to do surgery on her again (her 4th) because a blood clot was moving toward her heart- thanks to God it took them no time to retrieve the clot and get her back to a stable condition. Thanks hardly seems enough to say about all the love, support, and prayers we have received from everyone.
Today the test results came back about whether Ella was having seizures or not and I can say another praise that they were all negative. The doctors ate now talking another surgery to remove fluid either in her lungs or around them. They have to do this in order to allow her the opportunity to breath on her own, and this can not happen without removing the fluid. Thank you for keeping Ella in your prayers and thoughts. I know that God is listening!
Today was a good day - Ella was drama free with no incidents to worry mommy and daddy. The doctors are trying to let her rest and build up her strength, because next Wednesday they are planning on doing a 5th surgery on her. This one will be to remove fluid from her lungs. Hard to think about your little girl who is just 2 weeks old going to have surgery for the fifth time. We thank God for everyone's continued prayers and support that they have shown us and ask that Wednesday you say a special prayer for her on Wednesday.
I think that today Ella must not have gotten enough attention from us when we saw her earlier - the doctors had to replace an existing chest tube because of clotting and it was bleeding more than they liked - not sure if this is blood needing to drain that was being blocked by clot our if this is new bleeding. They also switched her to fenabarbital (probably not spelled right) but now we have to worry if the medicine will cause brain damage as that is one of the risks involved. Please continue to pray for strength for both us and Ella.
Well as usual ms Ella wants to be on her own schedule - the doctors were talking about doing surgery on her Wednesday to put in another chest tube to help relieve some of the fluid around her lungs. I guess that was not soon enough for her, because after looking at her this morning during rounds they decided to do the surgery today -- Everything went well and they were able to get the tube in like they wanted and they were also able to drain some excess fluid. She still has a lot of fluid in her body that needs to come off, but this should help her do that. Praying that this allows her lungs to inflate and get stronger , so that she will be ready to breath on her own.
Emergency prayer needed tonight - the doctor came in and talked to us and told us that Ella a 72 hour window on whether she will make it or not. They will try to remove the ECMO machine tomorrow - at that time she needs to make it on her own if not then they are running out of options and said there is little more they can do.
My dearest Ella today you went to be with God in heaven. We want to thank God for blessing us with you in our lives for a beautiful 19 days. You have brought joy to or lives and countless others. We will never forget you and will see you again someday in heaven.