We have been learning so much. The MOST important thing is being very sterile when we put her on dialysis and take her off. We have to wash our hands a certain way, length, direction, etc. We also have to dry our hands in a certain way and wear a mask. Like in the movies when doctors are scrubing up for major surgery, is how we feel. It's crazy. It's very important to try our hardest to prevent infections in her peritoneum. Sometimes you can do every thing right and it happens so we have to take the extra precautions. We have to take Avery's blood pressure, temp and weight before and after her dialysis and keep it on our log sheets. Avery is having a hard time drinking her bottles. She loses her oxygen level when she's drinking. So we have to hold her a certain way and remove the bottle from her mouth after every 5 sucks so she can breath. She also isn't to interested in eating. Avery always feels full from the dialysis so whatever she doesn't drink by mouth we put in her feeding tube that is in her nose. We have to log every feeding so the doctors and feeding team can see how she is progressing. She has 2 or 3 supplements that goes into her milk at the feedings. She will go home with the feeding tube because she must gain weight in order to have a transplant. Avery has 5 medications she takes daily along with the shot 3 times a week. I have to come up with a chart or table so we can keep tract of her medications. The list goes on and on.... we are staying strong and positive for Avery. We know God wouldn't give us anything we couldn't handle. He gave us a special baby to care for and we are willing to do whatever it takes. Raul and I are here supporting each other every day. We do miss Alexa so so so much. She is staying with Raul's parents. They brought her up once and Rema has brought her too. Lexi is so sweet with Avery. She is always trying to take care of her and keeps telling her to hurry and come home so she can share her toys with her. We are happy we are here to care for Avery but we are sad we can't be with Alexa right now. We should be home soon.
We brought our baby home June 9th. We are so excited to have our family all together now. Alexa was so excited. She keeps telling us she is happy her little sister is home and that Avery is her best friend. It's so cute! We've been busy adjusting to our new schedule and life. Things are a lot different now. We are home every evening by 6:00 so that we can put Avery on her dialysis treatment. It isn't hard to do, it is just a lot of preparation. Her treatment lasts for 13 hours a night. She is a very sweet and calm baby. She only cries when she is hungry or has a dirty diaper. We're are driving out to Galveston once a week for blood work and check ups. The doctors have changed a few of her medications because of lab results. Avery was on a feeding tube until yesterday. She pulled it out of her nose BUT we haven't been using it for several days. She has been drinking all of her bottles and at this point doesn't need any assistance with a feeding pump. We are hoping she continues doing so good with her feeds. She weighs 7lbs, 11ozs. We are staying in close contact with Avery's main Dialysis nurse, Jeanene. She is so supportive, patient and encouraging.
Avery has been in the Children's Hospital (at UTMB in Galveston) for 4 days. She is doing good. She continues to have her dialysis every night. We started at 18 hours and is now down to 13 because her blood work is looking good due to her dialysis. Avery has her own room so Raul and I have been staying with her every night. During the day we are being trained how to do the dialysis from home. We also learned how to give shots. Raul let me practice on him and Rema let Raul practice on her. We have to give Avery 3 shots a week. Raul gave Avery her first shot today. He did well and she didn't even feel it. We are learning so many things. I love that we can stay with her every day and take care of her although I miss Lexi so much. We should be home by the end of next week. We can't wait to bring our baby home!!!
Avery is making good progress. She is weighing in at 5.9 lbs. She is drinking a little over an ounce of breast milk from a bottle four times a day. The other times she is getting it through a tube inserted into her nose. Avery has been on dialysis for 3 ½ weeks and she is taking it pretty good. She is the smallest baby that has ever been on dialysis at UTMB, they have done it on 6 pounders but never a 3 pounder. We did have a little scare and thought the area around the catheter that is inserted into her tummy was infected. The surgeons had to go in and open her back up and see if there was signs of infection. Luckily she was ok, they thought a stitch was a little irritated but the doctors put her on antibiotics to be on the safe side. We aren?t sure how much longer Avery will be in the Neonatal Intensive Care Unit, the doctors want her to increase her feedings. When she is out of there she will then go into the Children?s Hospital at UTMB. She will have her own room so I will be able to stay with her every night. While she is there, Raul and I will train on how to do the Peritoneal Dialysis from home (she will be on dialysis every night until she has a transplant). Avery will have to come home with a feeding tube in her nose so we will also train on that along with so many other things that comes along with caring for her. Children on dialysis have a loss for appetite because they are always feeling full from the dialysis fluid that is inside of her. Children also have a different taste while on dialysis that is why she will be on a feeding tube so that she can gain the appropriate weight for a transplant. She has to be 22 pounds before she can have a transplant (approximately 1 ½ years old). When we found out about Avery?s kidneys the first thing Raul and I discussed was giving her one of our kidneys. We were more than willing to do whatever we can to help our baby. Avery is the same blood type as me so I will give Avery one of my kidneys and I can?t wait so she can be a healthy little girl. After a transplant Avery will be on medication for the rest of her life so that her body does not reject her new kidney. As you can see we have a long road ahead of us. We are very thankful for the wonderful Kidney Nurses who have helped us and encouraged us along with way. Avery is in good hands at UTMB. Please keep us in your prayers. (Click on Avery's photo to enlarge)
