I remember the first time I heard those words in relation to my newborn daughter. She was not quite 2 weeks old and we were meeting with her cardiologist. He told us that she would need to go into heart failure prior to her surgery occurring. I just looked at him with tears in my eyes and then said that it sounded horrible to hear that! He tried to assure us that it sounded worse than it really is and that heart failure in a child is less dramatic than in an adult. He also told us it would be gradual and that both he and our pediatrician would be watching her with us.
Fast forward to yesterday - our weekly meeting with our pediatrician. We are having Eliana monitored for weight gain in addition to her heart. We were disappointed to find that she had only gained 2 ounces over the last week. Not nearly enough. The detailed log I keep of her feeding showed a downward trend over the last 5 days as well. As we had our appt, several other signs (one being an episode of rapid breathing) alerted our ped that perhaps she needed to be seen sooner by our cardiologist. We were scheduled for cardio on Feb5 and our ped thought this too long to wait. When she said she wanted us seen sooner, I glanced at my watch and noticed it was 5:30pm - too late to do anything about it then and figured I would just call in the morning to reschedule. To my surprise, our ped. went to a phone in the hall and paged our cardiologist and then set up an appt for the following day!
I love how thorough - and also encouraging - our pediatrician is to us. She was leaving town the following day and yet wanted to make sure we had someone to call - at any time - if we had questions or concerns. She called in one of the other peds who gave us her private numbers in case we had any needs. What wonderful care we are receiving!
Words you just don't want to hear associated with anyone - much less your newborn. Eliana is in the beginning stages of heart failure. She is not in distress at this point, but things are definitely getting harder for her.
I know that this is a step that needs to happen. It's part of the normal development of the lungs that then puts more pressure on the heart. It has been gradual, but it's still hard!
The cardiologist was great today. He is calm and reassuring which is comforting. He is concerned about her weight and the amount of calories she is taking in. He prescribed two meds for her - one to strengthen her heart and the other to help eliminate excess fluid in/around her lungs. We are to start those today. We are also to try to get 20 oz per day into her of higher calorie formula/breastmilk. This will be tough - as we are averaging about 16-17. We've come close to 20 but never reached that.
We have a couple of days to see if trying to get more in her feeds, more calorie content to her feeds and meds to see if that makes a difference in her weight gain. We go back on Monday.
At this point there are a lot of unknowns. It really just depends on how she is doing. If there is no improvement, she may be admitted to the hospital for a feeding tube. Hopefully I would be able to stay with her and learn how to do this so we can bring her home. If she is doing poorly, they may keep her and possibly schedule surgery early. At this point we just have to be patient and wait.
The cardiologist doesn't want to prolong our attempts to improve things if they really aren't working as it is a given that she will need surgery. I know that they really want her to be bigger/stronger before doing the surgery as it's better for her, but they will do it when she shows she needs it.
Her feeding this afternoon was really poor - spilling a lot from around the nipple of the bottle - like she was trying to get some air around it? If she continues like this ... well, it won't be good. She has had a strong suck and done well eating and this is a change for her. I was visiting with my lactation consultant during this feed and she commented on how different this was from the other times she has seen her eat. She wants us to see a speech OT - and hopefully will be able to arrange that for us when we return to the hospital on Monday.
I'm about to the point now that I'm not thinking nursing is going to work for us. She "can" nurse, but it's just too hard for her to do right now. I have treasured the times that she has been able to nurse. This has always been such a sweet part of my relationship with my other children - and I hate to give it up. I'm not sure I can last through her surgery pumping though. I've struggled with a low supply - and honestly have tried sooooo many things to boost it. Some options aren't available for me to try due to Eliana's heart. I've gotten so much encouragment in this endeavor, but even today felt my lactation consultant letting me know it was really alright to stop whenever I needed/wanted to. She told me that she admired my efforts and was surprised I'd been able to last this long. She also told me that we were on her mind often and in her prayers. She has been a great support! I just wanted to give it my best shot - and to do all that i could to make it work. This is just hard for me personally for a number of reasons, but I can see where stopping might be what is best.
I appreciate your prayers and encouragment so very much!!! I appreciate your emails too! I know that I owe emails to a number of people - but just have so little time to type and this seems a good way to get the news out to a lot of people. I do appreciate your notes and encouragment though. This is a very tough time for Eliana, my husband and I and our family.
Please pray for the meds to help Eliana's heart to function better so that it buys her time to get stronger/older/bigger before her surgery.
I am so thankful to have the prayers of so many faithful friends as we walk through this valley.