Formula (Nutramigen) is still being tolerated. Due to the "loose" Nissen, Maci can still throw up and still burp and she still gags. Overall, with this formula, it's less. Her feeds are given every 3 hours over a 2 hour time. Yes, if you do the math, that means we have an hour break before feeding begins again. This wouldn't be "normal" for the average baby but because Maci has so much going on in her belly, it's not a huge concern for the doctors. She will have a feeding pump at home that also has batteries and can travel so if she is still eating and we need to go to Target....we go; she just eats while she shops. :)
I sent an email to Abbott Labs about formula. The preferred formula for Moo is the renal (kidney) friendly formula that she wasn't able to tolerate. It has a lower mineral content that is needed for electrolyte balance for babies who's kidney's won't filter. Maci needs a hypoallergenic formula with a lower mineral content and I want to know why there isn't one. When dealing with babies, so many ethical and moral issues come into play because WHO wants THEIR baby to be a "test subject"? If they have produced one formula for renal impaired infants, surely they can make another one. It may not change during Maci's infancy but maybe it can change for another kidney baby in the future.
My next email will be to Baxter who makes the home peritoneal dialysis machine. The machine is basically for adults. They need a baby friendly machine! There are also some other things that need to be changed with the programing of the machine.
Maci is what they call a high transporter. During her dialysis, she should only keep the fluid in that cleans the blood for 20-30 minutes. Any longer than that, she begins to absorb the fluid. During manual dialysis the nurse fills her with the fluid (gravity driven) and after 30 minutes of dwell time (fluid cleaning), Maci drains through gravity. The fluid drains from her and into a drain container.
The machine, it pushes the fluid in and after sitting the machine will pull it out. It's not a strong vacuum so it just slightly pulls as long as it senses that there is fluid. With the machine, you enter information and the machine determines the length of dwell time. To short of a treatment, short dwells means you aren't clearing as much "junk" as needed. You cannot tell the machine you want to do a 9 hour treatment with "X" number of cycles with a dwell time of 30 minutes. YOU SHOULD BE ABLE TO DO THIS! Maci is not going to be the only high transporter and I am sure she isn't the first. After making a phone call to Baxter, the dialysis nurse doing our training, was told that there is a way to shorten the dwell time and have a longer treatment but the way you do it is ODD. So, we are playing around with the machine again tomorrow to tweak things so that Maci will have a greater benefit from the cycler. **sigh**
Training on the machine has been good. Rick and I are learning a lot. My head has spinned a few times but once we started physically using the machine and doing things ourselves, it became easier. I have past the point of being nervous and feel confident that I can do everything correctly. Not to say that I won't have questions but that's why there are 24 hour contact numbers.
I am very excited to be taking Moo home to sleep in her own room, in her own bed, play with her own toys, watch her own crib mobile....sit with me in our own recliner.....be able to go from one room to another. I know I have said it a thousand times and you may be tired of reading about it but I am sure going to miss these nurses. I have spent more time with them than I have my own family since Maci was born. While still remaining professional, they become a part of your life. When you've been here as long as I have, you get to know some of them. It's what has helped enable me to get through some of the rough patches. This has not been easy. I hope I haven't given the indication that any of this has been a walk in the park. I just haven't felt the need to share the misery and there have been days that were nerve wrecking. I'm human. I get emotional. I get frustrated and stressed out. I get exhausted emotionally and physically. Yes, Rick and I have each other to lean on but during the times that we both can barely "stand", that's not always the time to lean on each other. I am thankful that it has been those days that I have been reminded in different ways to draw my strength from faith, from hope, from the fact that God gave me this baby and chose Rick and I to be Maci's parents. If God wasn't confident enough in us to get through this, then we wouldn't be experiencing this roller coaster. It's the days that I feel like hitting a wall that I hit my knees.
So many people say that they give their troubles to God and still struggle with making decisions or dealing with a situation. I will be THE first to admit that handing things over isn't my strong suit and being out of control makes me feel helpless. I despise the feeling I have when I can't influence the outcome of something. I have learned however, since Maci's birth and her special needs, if you TRULY give it to God, you find yourself at peace, not in an emotional, raging storm. He calms that storm. It's taken me a lot of practice to learn to hand it ALL over and not hang on to just a little bit, to not worry just a little bit. Some days I still fight the urge to hang on to what worries me but the peacefulness that I have grown to experience serves as a reminder that it is out of my hands. I can worry....or I can trust God.
I still hope to leave Le Bonheur this week WITH Maci. Provided all goes well with the home dialysis machine and we can start draining off more fluid and get more clearance, I believe we will. I would be delighted for Maci's first visit to church to be Easter Sunday!
If we go home this week, today is the last day I will see some of the nurses while Maci is a patient. I cried on the way home from the hospital last night and I have cried twice today. I want a subdivision for us all to live in!!!
Maci has not been typical. She's not text book. She doesn't follow statistics. She is her own little person, rising above the expected, doing things differently and teaching new things along the way. She has a purpose and I am so thankful that she is mine and that I get to experience life with her and learn what her purpose will be.
So many people pray for Moo. So many love her....even people who have never met her (or even me!). I thank God for each and every one of those people. Prayer is powerful and I truly believe that it has been on the wings of prayer that Maci has been carried this far and will continue to excel. Thank you ALL so much.
As the week progresses, I hope to update with news of heading home. If something changes and our going home is delayed, I won't say that I will not be disappointed but I want Maci home when she is ready and is supposed to be home. When we walk out the doors of this hospital, I only want to walk back through them to VISIT....not to stay.
Visit with Aunt Jess last week.
Rick and I had lunch together last week
while Maci was left in expert and awesome hands.
(Thank you Sharon, Katy and Rhonda)
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