Baby Sophia’s Heart Defects

08/19/21:
Sophia continues to improve! The 16th was a really bad day where she would do nothing but scream and cry in fear. This was due to her hallucinating from withdrawing from all her pain medications. Since that day she has made dramatic improvement that she is no longer in the CICU and in the center unit at Children’s! She is on full feeds through tube feeding and has ate a little by mouth. She is also no longer on any IV pain medication! She also is requiring no oxygen at this time! Our prayers now are for her to continue to make progress to eat fully by mouth. Once she can do that she can go home by the grace of God! Please continue your prayers and support! Thank you so very much!  

08/13/21:
Sophia is doing much better. Last night she went into junctional rhythm where her heart rate dropped lower than 100. At that time the team had to turn on her pacemaker to help regulate her heart back to rhythm and they were able to turn the pacemaker back off this morning. She is also waking up more and her awesome team at Children’s felt this morning she was in a safe spot to take her breathing tube out! She is on high flow oxygen but doing good. Please continue your prayers and support! Thank you!

08/12/21:
I need some prayers going for Sophia please! Last night she had a bad episode where her heart rate was high and she needed to go up on her pain medication and also needed a lot of PRN medication. She is now very sedated today and is to sleepy to get her breathing tube out. She is slowly started to wake up after almost all of her pain meds are shut off but she is still not awake enough to get her breathing tube out. Please pray our heart warrior wakes up without pain and able to get that breathing tube out. We are nervous because it’s taking longer for her to wake up fully especially with her not getting any pain medication but one which she was on before surgery. We are also nervous that she will wake up and have pain. Thank you! 

08/11/21:
Sophia’s night after surgery went pretty good. She was having what’s called SVT. STV is a condition where your heart beats more than normal. They started her on a medication called digoxin which was a great call because today showed no SVT and the team was able to take her off the pacemaker that was helping her heart beat the way it should. She also needed to go up on two pain medications and did receive some as needed medication but she is doing good otherwise. She was even started on a small amount of breast milk through her feeding tube. Please continue to pray for our Sophia that she has a speedy recovery and can come home soon!

 08/10/21:
Sophia is now done with her big heart surgery! She now has a new pulmonary valve conduit which hopefully will last for 5 years. Time will only tell! Her VSD is also closed. The surgeon said it was a complicated one and her PDA is also fully closed. Currently Sophia’s blood pressure is low, heart rhythm is a little off but the awesome team at Children’s is keeping a good eye on her! So all in all the team said she is doing well considering all that she just went through! Please continue to pray for our little heart warrior! 

08/09/21:
Tomorrow at 8:15am Sophia Rose will be having surgery to repair her heart! They will be closing her large VSD, finishing closing the rest of her PDA, and putting in a pulmonary conduit. She will also be helping with two research studies to hopefully help kids like her unique case in the future. Please pray for our team at Children’s who will be operating on her and that surgery goes smoothly! 

08/05/21:
Sophia’s NEC is completely gone. We are now introducing feedings again and she is taking a little by bottle! Has a hard time breathing during this time so we still use the feeding tube. She is now up to 8 pounds 1.4 ounces! Her biggest hurdle right now is withdrawing from pain and sedation medications. She was put on a sedation medication during her episode of NEC so the team is slowly weaning her off. Today is a good day and she has only needed Tylenol instead of other PRN medication. She has surgery to repair her heart this next Tuesday! Please pray for her and if at all possible please help us so we can continue traveling back and forth to see our little princess until she is ready to come home! Thank you!!

07/26/21:
Sophia has developed NEC. NEC is a disease that develops when the tissue in the inner lining of the small or large intestine becomes damaged and begins to die. This causes the intestine to become inflamed. In severe cases of NEC, a hole may form in the wall of the intestine. The doctors are not sure what caused this. They are thinking either something to do with the dialysis catheter they removed or blood flow not getting to her intestines due to her heart defect. She is on antibiotics and closely being monitored to make sure she doesn’t a hole in her intestines. She also will have nothing to eat by mouth for 7 days and a drain is placed to suction her belly. Due to this set back means surgery will be set back. Her kidney function is also back up so her CT scan will also get set back. They are hopeful her kidney function is up due to her being dehydrated so hopefully with giving her more IV fluids and stopping her lasix they will improve. Prayers please for Sophia and also her team so they will have God’s wisdom to plan the next step of care! 

07/21/21:
Sophia Rose continues to improve! She is now off all IV medication and on room air! Her biggest problem right now is eating and gaining weight. Did some changes to her feedings so hopefully she starts to gain some weight. She is also throwing up but has been better since the changes were made. She is working with speech to help her remember how to use the bottle and eat by mouth. Today they will remove her dialysis catheter since her kidney function has improved dramatically. She will also have another echocardiogram today. Once that is complete they will talk to us about our next step if they feel she can come home a couple months before surgery or if she will need surgery before hand.  Please continue your prayers and support for our heart warrior!! 

07/15/21:
Sophia is doing really good. Next Wednesday is surgery but if all goes well they will postpone so she can grow more. Her lungs still have fluid in them and she has stomach breathing episodes but slowly improving. She is off high flow oxygen and on regular oxygen. Her kidney level is doing down and she has less central lines in her so it’s much easier to hold her! Getting to hold more baby than cords which is awesome!! We had a care conference and they talked about if she continues to do well she may come home in another month and have surgery later down the road. Although Sophia will hopefully be home from the hospital in the next month we can’t financially make it and will more than likely need to go back to work before our baby gets out. We will know more next week of what the future holds. Please continue prayers and support. Thank you!! 

07/06/21:
Sophia is still on high flow oxygen. Her lungs continue to fill with fluid and her kidney level is not stable. She also has these episodes of fast breathing and then will stop breathing and eyes roll back. Thursday the team will decide how soon surgery will be. The plan was for her kidney function to become stable before surgery but with her levels going up they are thinking surgery might need to happen before kidneys recover. Please pray the team makes the right decision on whether to hold off longer to see if kidneys recover or do surgery first. My husband and I feel she will start to heal once her heart is fixed. We hope they choose surgery and feel she will start to improve once her heart is fixed. The team did tell us she will be in the hospital at least another month which we did not expect. Please pray for our sweet Sophia and if possible please donate to help my family while we are out of work. Thank you! 

06/29/21:
Sophia and her team made some amazing accomplishments today. Sophia no longer has the breathing tube in!! She is on high flow oxygen but is doing good with the breathing tube out! The team also paused her dialysis today to see how she would do which is going awesome! Still urinating and blood results for kidneys are looking slowly but surely better! The team also discussed with us that after reviewing her episode on the 15th they found she does not have a different condition going on. The reason she had her episode was due to the amount of back flow from her valve. The back flow got so severe blood was flowing into her right side and into her hole in her heart. This caused her breathing airway to constrict. It was a great day for progress and answers! These are all awesome steps! Thank you for all your prayers and support financially! Please continue! We thank you so very much!!

 06/27/21:
Sophia is having a very good weekend! She is having a great amount of wet diapers! They turned down her blood pressure med and epi and she is handling those great. She was getting a little dry so they turned down the dialysis and will be increasing her tube feedings this evening. They also did a test to see how she would do without the breathing tube which she did great! They will be doing another test tomorrow and if all goes well she will get the breathing g tube out! Please continue your support and prayers! Please also pray the doctors will be able to find out what is wrong with her heart so we can get the surgery and get her home! Thank you!! 

06/25/21:
Sophia’s dialysis tubing was not draining yesterday. The team attempted to try a medication that helps dissolve any clots or tissue that might be clogging the catheter but had no success. The team decided the best way to find out why the catheter wasn’t draining was to take her to surgery again. Once down in surgery they decided to try the medication one last time and had success so Sophia did not need surgery after all! The catheter has been draining great and Sophia also has had two wet diapers which is amazing! Please continue prayers and support for my family!!! Thank you!

06/22/21:
Sophia looks a lot better today. She is opening her eyes and moving around a little. Her kidneys are still not producing urine but there is blood flow going to them so that’s a great sign. They will be decreasing her breathing machine today and hopefully in the next couple of days she will get it taken out. She will also be getting more genetic testing done. This will help the doctors more see what is going on while we let the kidneys heal. Please continue to pray for guidance for the doctors and healing for Sophia! Thank you!!

 06/21/21:
Sophia is still on dialysis. Fluid is coming off but she still isn’t urinating that much. She is still on lots of meds and the breathing tube but things are slowly improving. The big thing now is her kidneys needing to work. The dialysis she is on can take more time than the regular dialysis you or I would get. She has to have this dialysis due to how small she is. Please continue prayers that her kidneys will work so they can run tests to find out more of what is going on. Thank you!

06/19/21:
Sophia’s dialysis is slowly working. Fluid is getting taken out of her and they saw her breathing movement from the breathing tube which means she is starting to get the extra medication out of her system that was built up. She urinated a nice amount on her own before dialysis which means prayers are working! Please continue to pray that Sophia continues to improve. That angels are around her to comfort and heal her. Please pray for Sophia’s medical team. To give them the knowledge and understanding to care for her. Please also pray for Sophia’s brothers, parents, grandparents, and all her family to give us strength. Thank you! 

06/18/21:
Sophia is about the same. They lowered one of her pain meds and also took her off the med they use to paralyze. Due to her kidneys not functioning the meds are getting built up in her system. They have not started her on dialysis due to the catheter needing to form with her body. Without the catheter could fall and could cause infection. She is still very ill and in critical condition. The team is decided whether to try and give her a big dose of lasix to try and jumpstart her kidneys. They tried two days ago with no success but with her being off her two days it might start working. Please please continue to pray for our sweet baby girl and knowledge to her care team.

06/17/21:
Sophia went on dialysis this morning. She is producing very little urine output and is in acute kidney failure. They also closed her chest this morning and is stable with that. In order to put her on dialysis they had to preform a procedure which involved putting a tube in her. Hopefully going on dialysis will help her kidneys soon so we can get a CT and heart cath so the doctors can see more what is going on with her heart and hopefully get to the bottom of what she has so she can have surgery. Please pray for our baby girl that her body and kidneys will heal and also pray for her team so they have can find out what is wrong with our sweet baby girl. Thank you!

06/16/21:
Sophia’s operation to close her PDA (hole) went good. They were taking her off bypass and before going back on ECMO they wanted to see how she was going to do. She has shown the doctors up once again and does not need to go back on ECMO! Plan now is to get her cute little butt upstairs and find out the best approach to get those kidneys working! Keep those prayers going please! God is good!!

06/16/21:
They still have Sophia in surgery. They had to move her from bedside OR to regular OR due to better access. They also switched her from the ECMO machine to cardiopulmonary bypass to give them better availability and stability to do the procedure. She will also be on dialysis to help her get out of acute kidney failure. Please continue to pray! Thank you!!

 06/16/21: 
 Currently the team is going to do a procedure to close her PDA which is the hole most babies have. They thought it was closed but that was because blood wasn’t getting to that area. She’s currently in kidney failure but the procedure will help that as well as some meds they will give her. All other labs are improving. The plan isafter her procedure they will get her stabilizedand let her kidneys start to work again. If all goes well she will have the heart cath and CT scan. Please continue prayers for both Sophia to get better as well as knowledge and guidance for her team. 

06/15/21:
We need some earnest prayers! At about 2am Sophia had taken a turn for the worst and almost stopped breathing. She was super close to having to do CPR. They currently have her on a breathing machine as well as ECMO which is similar to bypass to give her body and organs time to recover. Her kidneys and liver is the most damaged from her episode this morning. She has little to no urine output and the chest tube wouldn’t stop bleeding so the team had to open Sophia’s incision back up and explore where bleeding was coming from. They said everything they touched was bleeding so they have tightened things up and put a new patch on. Bleeding has come down which is good.
She also has brain waves to monitor for brain activity and seizures which so far look. All blood levels are slowly but surely improving so keep those prayers going!!!! The plan now is to get her body to recover and once she is stable she will get a CT scan and cardiac heart cath to see what her heart is doing and what else she has going on because the team is unsure why this happened.  Her condition should not have caused this. We need earnest prayers for knowledge and guidance for the the Milwaukee Children’s Hospital team to figure out what is wrong with Sophia and fast so she can get the surgery once she is stable as well as baby Sophia to keep improving. Thank you!

06/14/21:
Sophia is decreasing on food intake and a lot is going through her tube feeding. Early this morning she was showing she was in distress and her lungs were collapsing due to her heart becoming more enlarged and pushing on her lungs. She is now on lasix to help take fluid out from her lungs. She is scheduled to have a CT scan tomorrow and what looks like surgery instead of going home. We are an emotional wreck and Sophia is fighting  so please keep those prayers going strong! She is currently on oxygen to help with breathing. Might put her back on cpap also. Our baby girl is a fighter and although we are all scared we know she is in the Lord’s hands. Please continue prayers and financial support if at all possible as we will be here longer than anticipated. Thank you!

06/12/21:
We returned back to Milwaukee today. Sophia is doing good. Needs to work on eating more but what she doesn’t eat she will get through her feeding tube. She has fast breathing due to her condition but her oxygen is still within her limits. If she continues her strong will we will be going home next week and will schedule surgery in the next 4-6 weeks. She is pretty jaundice but not enough for intervention. This weekend the plan is to work on her feeding and continue to monitor her breathing but everything is looking positive! Please continue your prayers and support! Thank you!

06/11/21:
Sophia is now eating up to 1 1/2 ounces! She weighs 7 pounds 3 ounces now! She had an EKG, chest x-ray, blood work, and an echocardiogram this morning. Plan for today is take out her IV line in her stomach that she has been getting fat and fluids from. They will keep the feeding tube in incase she needs more fluids or extra nutrients. If she can show the Doctors she can eat enough to manage her own she can go home!! Plan is for next week. Sunday being the earliest! She will also be transferred from the critical CICU level 4 to level 3 today! Surgery date is still unknown but she can at least come home and grow more before needing surgery!!! Lots of Dr. visits and time off work but I wouldn’t have it any other way knowing our baby will at least be coming home soon!! Please continue prayers and support! My husband and I are home with our boys but are heading back to Milwaukee tomorrow until our baby girl is discharged!! 

06/10/21:
Update on our baby girl:
She is doing great on room air! Eating on her own and having no problems breathing! A great sleeper! Waking her up every 3 hours to eat and eating about an ounce each time. The cardiologist and team called and told us as long as she continues doing great for 48 hrs straight we will be able to TAKE HER HOME next week so she can grow and get stronger until surgery. Sunday would be the soonest!! We are home with the boys now but will leave Saturday and will stay down by our daughter until it’s time for her to come home! We could not be more blessed! Please continue prayers and support!!!

06/09/21:
Our little fighter Sophia is definitely showing the doctors, friends, and family how strong she really is. Last night she didn’t require any oxygen just the positive air pressure from the cpap. The nurses decreased the air pressure from 9 to 5 and she was able to eat finally last night. This morning during rounds they all agreed to try her without the cpap altogether. She was able to breathe fully on her own without any assistance! Next step is to see how she will eat without the cpap. They will also remove one of her IV lines in her belly button that shows a constant blood pressure because of how well those are looking. They diagnosed her with tetralogy of flow with an abnormal pulmonary valve. She is such a unique case and the team is shocked how well she is doing as well as her parents! They will see how she does in the next couple of days and if all goes well we will be able to take her home to grow until she needs surgery! Only problem with that is we live far away and  in case of an emergency we might need to get a place to stay down in Milwaukee. We will see when the time comes. Everyone please keep Sophia in your prayers and please continue donating. We greatly appreciate it and it means the world to us! Thank you!

 06/08/21:
Sophia made her way into this world on June 7th 2021 at 5:31pm weighting 6 pounds 13 ounces and 19 inches long! She cried shortly after being born and needed oxygen as Oxygen was in the 70’s. No intubation needed but she is on the cpap. Sophia is currently going to CICU so she can be monitored more closely. She has a small hole in her heart (VSD), Absent Pulmonary Valve Syndrome (APVS), which we knew about but she also has something wrong with her aortic valve (the valve which pumps blood from heart to rest of body) She’s still on cpap but is doing so well fighting!! We will keep you updated once the team lets us know the next step which will be when surgery is. Please continue prayers and donating!! We need all the help and support we can get! Thank you!!!

06/06/21:
Update on baby: Started bleeding today. Went in and was 3cm dilated 60% effaced. Dr in Minocqua called the team in both Marshfield and Milwaukee and they said I needed to get flown down to Milwaukee right away. Baby Sophia is looking great on monitor. I have not dilating anymore at this time. Plan now is to do blood work to make sure placenta isn’t detaching and get observed overnight. Please keep us in your prayers!

06/02/21:
Had our weekly no stress test, ultrasound, and appointment in Marshfield today. Sophia is not currently in heart failure and is doing good. No new changes to her rare heart defect. Currently weighs 6 1/2 pounds. Our last appointment will be next week and the week following I will be induced in Milwaukee. Please continue your prayers and support for my family. Thank you!

05/18/21:
     We were seen at Milwaukee Children’s Hospital yesterday. Sophia no longer has a mass by her abdomen. The Dr. in Milwaukee said it could have been an ovarian cyst that went away or even bowel. Regardless her belly looks great! As far as her heart conditions go we know she definitely has a heart defect called APVS. Absent pulmonary valve is a rare heart defect where the pulmonary valve is poorly formed. Oxygen-poor blood flows through this valve from the heart to the lungs. When the pulmonary valve does not work well, blood leaks back into the valve instead of fully to the lungs. This causes the lungs to not get enough oxygen. In most cases, there is also a hole between the left and right ventricles of the heart. The Dr’s are not certain if she has this defect or not. To fix her poor valve the Dr’s will need to preform open heart surgery. She will need to be put on cardiopulmonary bypass so they can stop her heart and put another persons valve that has been frozen. Due the the valve not being able to grow with her heart she will need at least 2 other open heart surgeries one between 1-2 years old and another between 6-8 years old. After age 10 the Dr’s will be able to prefer a heart catheterization procedure to put the new valve in so she won’t need the open heart surgery. The other complication we face is once she is delivered is if she will be able to breathe on her own. Due to her valve the right side of her heart had become severely swollen. This can cause her trachea to become constricted because of the swelling of the heart. If this happens she will need to be intubated and possibly a trachea put in for the first couple of months until her heart goes back to normal size. She will need to still be delivered at Milwaukee so she can have all specialists there and have surgery within the first 3-7 days after birth. I will be induced on June 15th at 10am. I will also have to have weekly ultrasounds done until she is born to make sure she isn’t going into heart failure. After birth they will be preforming a CT scan, echocardiogram, and ultrasound to confirm the VSD and the severity of what the future will look like for her. Her recovery time will be at least 3 weeks and will consist of lots of follow up appointments back and forth to Milwaukee and Marshfield. Although this is still a scary situation I am blessed she is only facing at the most two heart defects. God is good! Please continue to pray for little Sophia and if your able to please donate to our fund to help with the financial strain we will be going through. Thank you!!!

4/30/21:
     Today we received a call from the fetal cardiologist. This was not the call I expected or hoped for. Our baby girls condition is much more severe than we all thought. After talking with the specialists in Milwaukee they found Sophia has two other heart defects. These are called AVI and PVS. (AVI) Aortic valve insufficiency occurs when the aortic valve of the heart leaks and causes blood to flow in the wrong direction. Her leak is pretty severe. (PVS) Pulmonary valve stenosis is a valve disorder. Blood going from the heart to the lungs goes through the pulmonary valve, whose purpose is to prevent blood from flowing back to the heart. In pulmonary valve stenosis this opening is too narrow, leading to a reduction of flow of blood to the lungs. From the images on the ultrasound her valve is so narrow they will more than likely need to make artificial valve for her. Her recovery time will be at least 1 month in the NICU if all goes well. Our plan now is to go down to Milwaukee on May 17th and meet with 5 specialists along with 2 different ultrasound. I will also be seen weekly with my primary OB/GYN doctor and get fetal stress tests done to monitor her. We also will keep our appointment with main Marshfield at the end of May. Please if anyone could help us financially during this stressful time to help with costs we would greatly appreciate it. Thank you. 

Hello,
     We are the Rodman family. Our story begins with finding out we are expecting our third child. The road was bumpy from the start. I started having pain at 7 weeks and at 8 weeks we were told we were having triplets but only one had a heartbeat. We were so sad with loosing two of our babies who would have been identical twins but thankful we were still carrying one healthy baby, or so we thought. We now face our baby Sophia needing surgery because she has developed two heart defects along with a mass by her abdomen. We don’t have much information on the mass. It could be an ovarian cyst or it could be some type of tumor. The Dr’s will know more information once they have her in surgery to fix her heart. For the heart defect names the first one is TGA (transposition of the great arteries)Transposition of the great arteries is a serious but rare heart defect present at birth in which the two main arteries leaving the heart are reversed. Transposition of the great arteries changes the way blood circulates through the body, leaving a shortage of oxygen in blood flowing from the heart to the rest of the body. Without an adequate supply of oxygen-rich blood, the body can't function properly.  The second defect she has is VSD (ventricular septal defect) Ventricular septal defect is a hole in the heart. It occurs in the wall that separates the heart's lower chambers and allows blood to pass from the left to the right side of the heart. The oxygen-rich blood then gets pumped back to the lungs instead of out to the body, causing the heart to work harder. Due to her defects the specialists in Marshfield said we will be delivering in Milwaukee Children’s Hospital so she can have one of the surgeries she needs after birth. She needs a total of 3 procedures. With this being said, she will be in the NICU at least 3 weeks after surgery. We have two other kids at home ages 3 and 4 so we will be traveling back and forth from Milwaukee and we would also be out of work until baby Sophia is recovered fully. We are asking for donations to help with travel experiences and help with bills while we are out of work. To have financial stress on top of the stress of our baby’s condition is not something I want any parent to go through. Due to only being at my job for 6 months, I do not qualify for any benefits or PTO during my leave so I won’t be getting an income during this stressful time. My husband has some PTO but not enough to cover the full time we are out of work. Please do not feel obligated. This is a way for friends and family to help if they want or feel the need to. Any amount we will be forever grateful for. It does not have to be a large amount because any amount will add up and help in more ways than you can imagine. If you don’t want to donate on here please send Trevor or myself a private message and we will send you our home address. Thank you for all the donations, prayers, and help during this time. Thank you!