Good News!

   Emma has been doing very well lately. One of her primary nurses, Kim, said on Wednesday, March 21st that Emma had the best day she had ever seen since she started caring for her around August when she got moved to the Critical Care Unit. And on Thursday this week Dr. Lipman said Emma looked the best he had ever seen her. Even with the slight stomach prolapse from her new G-tube, he did not seem concerned enough to plan a surgery, which is great!! She got the new G-tube on March 6th and we were so excited because then we got to see her whole face again without a feeding tube or suction tube in her nose. Within a few days it started to prolapse again, so they put six stitches in (on my request) compared to the two in December before we went to Michigan. Two didn’t seem to hold the spot closed last time, especially since she was on higher ventilator settings/ pressures then. She was on a PEEP of 14-18 then, and is down to 6-7 now!! :)

   I printed out my schedule for the nurses to know my days off and began aiming for a Mother’s Day Homecoming date (May 13th)!! That weekend is six weeks from now which is about how long it will take to complete her discharge and get Home Health set up. We know that it could always take longer if she gets an infection or virus somehow, but things are really looking up. We aren’t sure if those two fistulas in her trachea have healed and closed because we asked the doctors here not to do any more bronchoscopies unless its for more of an emergency reason. Dr. Green said she can come home either way, so there is no real point in making the baby go through another procedure and bill our insurance for one more thing. Emma has not had any issues that would lead them to believe that there is air in her chest. They did an X-ray or two earlier in the month, and everything looked great!! Even her eye exam recently went well. They did not seem concerned about the nystagmus that began after her cardiac arrest in December. Many doctors have said they thought it was related to her being on so many medications.

   She weaned off the Versed on March 21st, the Morphine on the 22nd, and the Precedex (aka Dexmed) today, so she finally got her PICC line out!! I was at work, but the nurse said Emma was smiling and laughing after it was removed from her arm. She is still on Seroquel, Clonodine, Valium, and Methadone, all which are given through her G-tube. Another big thing we have been able to do is take Emma on stroller rides around the NICU. She has been on three so far, each one getting longer as we slowly push her through the various Pods to wave hello to all the nurses. The first two times we walked, Gary (her primary respiratory therapist) pushed the ventilator and oxygen tank on the stand, while the nurse pushed the medicine pole. For the second stroller ride, Emma began smiling once she was placed in the stroller. That was wonderful to see. Last weekend Michael used scrap wood that he had in the garage to make what he calls a detachable ventilator bracket. It hooks and snaps to the stroller in four places and even has a secret storage area. Having the ventilator sit on the front of the stroller leaves room for her “emergency trach bag” under the stroller, which we will have to take with us anytime we leave the house. Everyone at the hospital was very impressed with Michael’s “inVENTion”!!

   One thing I’m not sure if I mentioned in the Michigan posts is that Emma has Klebsiella, which is a common bacteria in people with trachs. They said it is something she will probably always have as long as she has her trach. Luckily there are usually not any side effects, but she does have a multi-resistant kind meaning when the Klebsiella gets stronger (like it did around mid January in Michigan), there are about 15 commonly used antibiotics that do not help it decrease to a lower level. Vancomycin and Meropenum seem to be the best for Emma, but thankfully she has not needed to be on that since we got back to Florida over five weeks ago. In Michigan the nurses and doctors all had to wear gowns and gloves while helping Emma and sometimes even while simply standing in the room. Luckily they said we did not have to wear gowns because they told us it is likely that Michael and I already have a low form of Klebsiella ourselves, from kissing Emma’s face and hands. Also because we would not be going into other patient rooms we would not likely spread it to others. We did wash our hands and use hand sanitizer often. However, at Winnie Palmer the rules are different, maybe because we’re in the NICU there versus being in the PICU in Michigan, but we do have to wear gowns now. The doctors here believe that the Klebsiella could be passed to another person or child, so when she is home and eventually has visitors (for her birthday party?!) we all need to be careful about people not touching Emma’s hands and face because they could spread it around. Maybe even our dog will get it!!

   Emma has six teeth right now. Four of them came through this month, and three of those busted through on the same day (March 20th)! She has had her bottom central incisors since September, then finally got her top central incisors, which we kept expecting to pop through while we were in Michigan, and lastly we can now feel and see the top of the left lateral incisor and the tooth that I’m not sure is the 1st molar or the 2nd bicuspid. Since she has been in much better moods this month as the medicines were weaned off, the Occupational, Physical, and Speech Therapists have all been able to work with her several times per week. She used a Passy Muir valve (talking valve) for the first time on March 14th. It was fun to hear her "talking" a lot by making sounds in her throat. The Child Life Specialist, Julia, even started a scrapbook for us and gave us our own personal Mini Polaroid camera to use in the NICU. We have taken about five pictures with that so far and all of the nurses wrote notes to Emma that are in one of the page pockets.

   For some recent weights, Emma was 10 pounds, 10oz on March 7th and 11 pounds, 8oz on March 28th (vs only being 4 pounds at one month old in the first picture of this post). Her EleCare formula was recently increased from 28ml to 29ml per hour while remaining on continuous feeds, and she will be 10 months old on April 12th. We have been working with her on waving and she has been better about holding her hand open by her face, not so much about moving her arm or wrist back and forth. We'll keep practicing, but she has been doing very well with grabbing and holding those plastic interlocking rings when you hold them in front of her. We like to test her muscles and gently pull them higher as she pulls them down. Michael even put a small plastic Easter egg in her hand to hold and she didn't let go of it even when she started falling asleep. We are so proud of our girl and can't wait for all the new adventures to come as we get closer to bringing her home with us!! :)