Day of Life #46

Sorry for the EXTREMELY late update- It's been a very busy day today! First time we've had a chance to update....

Things are pretty much the same for Madeline today- unfortunately her BP is pretty high still.. it was as high as 155 and low as 122 which is high but not too terrible for her. There was a period where it was lower but it is back up again. In her room now and can see her last one was 136 over 60 with a MAP of 109. . . The doctors have increased her dosage of medicines- They said that if she does not get better and under control by the end of the weekend they will start her on another medicine (so 3 in total) unfortunately this medicine has a side affect of messing with kidney functioning. Then again high blood pressure will also affect her kidney functioning -we will just have to monitor and see how things go.

Madeline also had another bout with projectile vomiting today..three bouts in a row all together.. she looked pretty ill and unhappy- they are not sure why she is projectile vomiting but they said they will keep an eye on it. The only hard part is that when she pukes her medicine goes out too so that may be another reason why her BP will not go down.

They will start training us on how to insert her NG tube (the tube she gets her milk through when she does not take it out of her bottle)- this tube goes in her nose and down her throat, on Monday. They have suggested we also have anyone else we think will be taking care of her on a regular basis be trained as well.

Pray that her BP gets under control, she continues to improve on feedings and that she can come home soon- She gets her next Renal pane on Monday so pray for a miracle and a showing that her numbers have come down greatly so that there will be a better chance she does not need a transplant.

Everett- Had a nice time talking with mom and dad the other day- Everett has a blood infection and respiratory infection -which is not good but the doctors said they are not super concerned about it because his vital signs are good and it could be treated. They are hoping to extubate him sometime next week. He may have to get a CPAP machine but they will not know until when they take it out what will need to happen. They are hoping to just put him on a high powered nasal canulator. Please pray that they will not have to do the CPAP because if he is on that mom and dad will not be able to hold him until he is off. He was born on July 6th and as of yet they have not been able to hold him. Mom and Dad need to hold him SOON!

Adalee-MAY BE GOING HOME TUESDAY! Yay- Like Madeline, she is going home with an NG tube and mom and dad successfully put it in today ! Hooray. Pray that the weekend goes smooth and they can have a flawless trip home. Also continue to pray for her as she continues to grow living with Trisomy 13. Pray for strength and healing for her and her family.

Thanks everyone- Take Care and God Bless!