Beautiful Taylor (day 14)
Update (day 13)
Today has been a long but good day. I had a followup doctors appointment at 1pm for my blood pressure and it is still too high, so they have upped the meds again – hopefully this will finally get it come back down into a normal range.
The CAT Scan for Taylor was done this afternoon and the leak was too small to locate. The Radiologist expected it would be too small but Dr. O wanted to see how all of Taylor’s organs were doing as well and he was very pleased with how everything looked.
Dr. O said they will start Taylor on the special formula tomorrow morning which we are so thankful for, it will be wonderful for Taylor. She has been pretty sad the last couple days hoping for food. Dr. O is hopeful that the formula, which should thin out the fluid that is leaking, will allow the leak to heal on its own. Taylor will probably also be receiving some medication, which has minimal side effects, that also promotes healing of the leak. He also wants to try again tomorrow to put the PICC line in, they have tried a few times already unsuccessfully, but this would be very helpful for administering medication and supplementing nutrients. It would replace the line that has been in Taylor’s belly button since she was born and probably needs to come out soon.
We were encouraged after being able to meet with Dr. O today. He helped further explain and answer questions regarding the new diagnosis and treatment plan and also told us that if the thoracic duct leak had occurred earlier in the pregnancy, Taylor would not have survived, because her lungs would not have been developed enough to handle all the fluid. We praise the Lord for another indication of His Hand on Taylor’s life!!!
Diagnosis (day 12)
The doctors noticed on Saturday night after more than a day that Taylor was eating breast milk, that the fluid draining from the tube was not as clear as it has been, but milky and the Doctor seemed concerned. Today they tested a sample of this fluid from the drainage tube and from those results determined what actually has been the cause of the Hydrops. Taylor has a rare congenital condition where the Thoracic duct, located in the right chest area, is not functioning properly. Because this duct is not working right, fluid is building up in her chest cavity instead of going where it is supposed to go. This needs to be corrected. The doctors are not allowing Taylor to be fed Jenny’s milk right now. The doctors have ordered a CAT scan tomorrow for Taylor to hopefully allow them see exactly what is going on with the Thoracic duct. She will probably be fed a special formula at this point that she can handle better, until the problem is resolved. The doctor have given us a few different scenarios and plan of action for Taylor’s duct to start functioning correctly:
1) Sometimes the problem with the duct will heal itself over time – this would be wonderful!
2) There is an experimental drug that has been shown to help heal the duct.
3) Surgery would be performed to repair the duct – Sparrow cannot do this surgery, so they would have to be transferred to Mott Children’s Hospital in Ann Arbor or DeVoss Children’s Hospital in Grand Rapids.
It is good to have a diagnosis, but hard at the same time. Because the milk is causing the fluid to change they have stopped feeding her until sometime tomorrow when they can begin the special formula. It was extremely difficult to see her today because she was starving (she now knows the feeling of a full belly, and she knows her’s is empty).
We know the Lord is not surprised by the leak in Taylor’s thoracic duct and that He can continue to show His power and might in healing Taylor in His perfect way and in His perfect timing. Thank you for lifting up Taylor and our family before the throne of our great healing Father. He is good and never leaves us nor forsakes us.
Cute Little Taylor (day 11)
Got to hold Taylor!! (day 10)
Today has been a great day. The doctors were able to take out Taylors left chest tube and she seems to be doing well with now only the right chest tube in. The really exciting thing that happened today was the nurse called me in the morning and told me not to forget my camera when I come in to visit, because she asked the doctors and they said I could HOLD her today — YEAH!!! It was so great to finally hold my baby, I had to be real careful with all the tubes and wires, but it was wonderful. They have said one of us can hold her once a day for a short time with the nurses help. Brian will get to hold her tomorrow. They also began giving her breast milk today and she guzzles down the little bit (1 tsp. every 3 hrs) they are starting her out on. We praise the Lord for another good day.
Taylor Isabelle (day 8)
We praise the Lord again today as we continue to trust Him for Taylor’s life and healing.
Today the doctors have decided to clamp shut Taylor’s left side chest tube. The drainage out of that side has been minimal enough to see how she does without it. They will do an x-ray tomorrow to help evaluate how she handles this. They also tried a few times today to put in a PICC line in order to remove her umbilical veins line. The doctors are also talking about trying to give Taylor some of my pumped milk instead of just fluids through the IV, hopefully her body will respond favorably to this.
I had a doctors appointment today as a recheck for my blood pressure issues and it is remaining too high, so they have increased my medication – hopefully this will help.
May you all receive the blessing of the Lord today as He is faithful in being sufficient for every need. May He receive the glory!!
Latest Taylor (& mommy) update (day 7)
We were able to go home yesterday. All of the tests have come back normal and hopefully with medication Jenny can keep her blood pressure under control. It was good to be home and nice to be altogether as a family (as much as we can at this point) again. We have missed Trevor a ton, he has been doing so well under these strange circumstances, but still doesn’t understand what is really going on. We are grateful for wonderful Grandparents, Aunts, Uncles and Friends who have helped care for him and all of us during this time.
Taylor’s EEG came back good although they did say she had a slightly depressed state which could be caused by the morphine that she is still on. They will repeat her EEG once she is off this completely to know for sure if it is the morphine that is causing this. Other signs show normal behavior, eyes tracking, etc. So that is great. Please continue praying with us for her brain activity. The doctors were able to take her off the second blood pressure medication today – yeah!
Taylor & Mommy (day 6)
Taylor had a great day today and continues to improve. She has been brought off the CPAP completely and is totally breathing on her own!! The doctors also removed her abdominal drain and she is handling that very well. The have a done an EEG on her today as a baseline for her, we are praying especially for good results from this. We are so thankful for good news each day.
We were supposed to be discharged from the hospital yesterday, but because of elevated blood pressure readings on Jenny the doctors are having her stay another day and running a bunch of tests. So far all the tests have come back fine, and are thinking the high blood pressure is a result of stress. Please pray that this would come under control, so we can go home and prayer for us as we will have to go home without Taylor.
Taylor update (day 5)
Taylor is having another good day. She was able to be completely weaned from one of her blood pressure medications and the other is down to a very minimal amount. They are also continuing to reduce the level the CPAP machine helps Taylor take her deep breaths.
May the Lord receive all the glory as He shows His power and might in His faithful care of Taylor and all of us.
Our girl (day 4)
Taylor continues to improve, which we are so thankful for. The doctors have dropped the amount of morphine Taylor is receiving by half and she continues to seem comfortable, which is great. They continue to decrease her blood pressure medicine and she continues to do well in that area also.
We continue to pray for decreased fluid. We so desperately want to hold our baby girl, but have not been able to with all the wires and tubes she is hooked up to.
We should be discharged from the hospital tomorrow and covet your prayers as it will be hard to leave without our little Taylor. We know the Lord has a perfect time for Taylor to come home and we pray for patience to wait on the Lord and for His peace and comfort as we trust the Lord for His care of Taylor.
