Wednesday night was a pretty sleepless night for me and also for Rick. He wasn't near the bundle of nerves on Thursday as I was for more than half the day. I was a wreck (on the inside).
Maci came back to her room on the ventilator but was nearly immediately taken off by the Neonatologist (Dr. Ferguson (photo below) and we love Dr. Ferguson by the way.)
I really can't begin to describe how impressed I am with the care that Maci receives here at Le Bonheur. She has nurses that have never taken care of her ask how she is doing and know what is going on with her. Her nurses that frequently take care of her keep up with her progress and know when things aren't going too well and check in on her either with us or other nurses. One of the Neonatal Nurse Practitioners came in Wednesday to see how she was doing and asked if she could call and check on her Thursday because she was off that day. It gives me a feeling of overwhelming joy to have so many care about my baby girl. As much as I am going to LOVE when the day comes to take Maci home, it is going to be very difficult to leave this group of people whom we've grown so accustomed to being around. We will leave here not only with some fond memories of the fantastic care provided here but with friendships. There are some that we have met here at Le Bonheur that have become like family. You can teach skills but as I have said before, compassion is something I feel you are born with, not learned. To be able to effectively communicate with a patient's family and have them KNOW that YOUR BABY is a priority and to see those treating other babies and families in the same manner is a blessing and a privilege. To have a doctor say "I want her to do well; MAN, I want her to do well!" is a wonderful thing to hear. To have something go well and have a doctor say that it is "freakin awesome" or "praise the Lord" is awesome to us.
You have so many different personalities and approaches by different nurses, practitioners and doctors but I have been satisfied or more than satisfied with 99% of each person who has taken care of Maci. There have been only a couple, very minor, incidences when we just didn't click with a staff member. Maci lost weight last night which is a good thing and her swelling is nearly gone. She was a little butterball before and the day of and after surgery. She is back to wearing size 1 diapers where as during the time of being "inflated", she was wearing a size 2 and they weren't "roomy" on her.
Rick and I have been so deeply blessed in so many ways but especially since Maci's birth. I have really been overcome with the outpouring of love and concern shown for us and our baby. I am so lucky to have so many friends, new and old who have shared Maci's story and asked for prayer on Maci's behalf. People all over the country and even people in places outside of the US have been and are praying for Moo. I really hope that I can one day put into words and explain to Maci the magnitude of people's kindness. I pray that she too will have the capacity to love and empathize with others as so many have demonstrated to us. People I may never meet have been praying for my precious girl. My hope is that those who are sharing Maci's story will also share mine and Rick's appreciation and communicate our extreme gratitude. I often have tears of joy when I am told of situations where people have encountered the "6 degrees of seperation" and learn that someone who knows someone, who knows someone, knows us. :) Sometimes to say, "Thank You" seems so inadequate. I hope that some day there is something that I can do in repayment for all that has been bestowed upon my family and I can pay it forward.
The current plan for Maci is to continue to gradually increase her volume of dialysate. She is currently on 60 mLs and we are working up to 100 mLs. She is getting 40 mLs of milk (30 mLs is one ounce) and she was getting over 70 mLs when she started to retain fluid and became swollen. The Nephrologist wants to increase her feeds, keep her dialysis volume at 60 for right at the moment and should she start to retain fluid again, use Lasix (a diuretic) to get fluid off. Right now, she is doing well with her fluid balance so the Lasix will be there for back up. We will continue to take things one day at a time and continue to praise and thank the Lord for allowing great things with Maci.
On Monday, Rick and I learn to give Maci her injections. She will go home on medications, most of which can be given through her g-tube but her EPO (for her red blood cell production and maintaining her hematocrit) has to be given via injection. Fortunately, both Rick and myself have given shots before so it won't be brand new to us. I think he will get a break for a while on having to be the "bad guy" and making Maci angry with the shot since he has use of only one arm. Lucky me, huh? LOL We will also begin learning how to change the dressing on Maci's tenckhoff catheter (the catheter used for her dialysis). Here is what it looks like but this isn't Maci's belly.
This is what the catheter looks like without the dressing. Maci's has sterile gauze on top to help prevent it from being moved around or displaced. The procedure for changing the dressing is detailed and involves an aseptic technique to prevent contamination. We will wear a mask and gloves, use sterile gauze for cleaning the area and re-dress with sterile gauze. Contamination to the area could resule in infection to the area and/or peritonitis. "Peritonitis is an inflammation (irritation) of the peritoneum, the thin tissue that lines the inner wall of the abdomen and covers most of the abdominal organs." http://www.mayoclinic.com/health/peritonitis/DS00990
The light blue and the white part to the right of the blue twists to open. This allows the fluid in and out. This catheter is capped off at the end. This is how Maci's will look during the day, once she is at home. While receiving dialysis the left end is attached to tubing which is attached at the other end to the dialysate.
THANK YOU!!!
God is great! Lots of love and prayers
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