Doing Well

Emma has been home again for about 2 weeks now. She turns one on the 16th. Since returning home from the hospital, Emma has been doing fairly well. When they sent her home she was still throwing up a little bit. As a result, we decided to switch to straight breast milk instead of fortifying the milk. Since then, Emma has not been throwing up. We want her to get the extra calories that the formula gives, but if she can't keep it down it is not doing any good. Emma has learned to roll from her back to her stomach, but cannot get back over. She is finding her voice a little bit as well. You can hear her squeak a little bit more often. A few of her teeth are getting close to breaking through. On June 22, Emma got to meet some of her relatives that she had never met at her Auntie Karen's wedding rehearsal. We were supposed to go to Dee's house today for the 4th of July, but I have been sick for the past few days. I had a 103 fever on Sunday and had to stay away from Emma and Alissa for 2 days. It was a bummer to have time off and not get to spend it with them. I will have another update in a week or so unless something major comes up beforehand.

Father's Day Weekend

Emma is still at CHOC. We thought she was coming home yesterday, but she is still having some issues of throwing up. There is talk again of a fundo, but we really do not want it. At this point we are unsure of when she will get to come home again. Over the weekend, our friends at CHOC not only took care of Emma, but also Alissa and I. Our angel Carol in particular insisted that we spend some time together away from the hospital. We were able to go to the movies and lunch without having to worry if Emma was going to be OK. It was very much needed to have a bit of normalcy. On Father's Day, we went to WCC for a pancake breakfast, classic car show, and to see former SF 49er Wendell Tyler speak. Afterwards, we had lunch over at my parent's house. When we finally arrived at CHOC, Emma (with the help of Jen and others) had made me a small scrapbook and framed photo gallery for my desk at work. It was very special. CHOC continues to be more like a family than a hospital. For that, we are extremely grateful.

Enough Already

Emma went back to her second home at CHOC Saturday. She is unable to keep her feedings down again, so they admitted her to the Pediatrics floor at CHOC. We have now stayed in every part of CHOC at Mission except for the short stay unit. Yesterday we spent about 3 hours in the radiology lab doing an upper GI study to see if her digestive system is working properly. They filled her stomach with barium and then watched it go through her system on the X-Rays. Last night we got the results back and thankfully there is no blockage in her intestines. They also took some cultures from her trach area and they came back positive. She has an infection of some kind, but they could not treat her with antibiotics until they narrowed it down. She was so miserable yesterday. Hopefully we will have a result soon and be able to start treating her with the right antibiotics.

Home Again

Emma is home again. After 10 days of antibiotics and a little bit of spoiling from the nurses, Emma was cleared for release. She has not thrown up in 9 days, so it looks like we have the feeding issue under control. We pray that this time is for a little bit longer. We know she will inevitably have to visit CHOC again a couple times before she turns two, but we want her to ourselves for a little while.

Another Setback

Emma had a fairly good weekend back in the PICU at CHOC Mission. They stopped her feeds the first night she was there because she has been throwing everything she has been getting. Instead, she has been getting nutrition through IVs. It has been determined that her pneumonia was caused by her constant vomiting as it has been getting into her lungs through her trach. Until we can get her feeding issue resolved, she won’t be able to come back home. They are talking about doing another surgery that will prevent her from being able to throw up. We don’t want this, but she needs to be able to eat and keep it down. Another alternative would be to have her feeds bypass her stomach and go directly into her small intestine. This is not a great option for several reasons, the main one being she would need to be hooked to constant feeding at a slower rate. This would prevent her from being mobile. The hardest part about being back at the hospital is having her connected to the monitors and IVs again. It is difficult holding her because of all the wires. So, the 3 days have passed and we have no idea when she will be able to come back home. The GI doctor will be meeting with us today to discuss her feeding/digestive issues.

Pneumonia

Last night Emma was not feeling well. We watched her temperature steadily climb to 102.5 degrees and decided to take her into the ER at 3:30 this morning. After running some tests and taking some X-Rays, it was determined that she has a mild case of pneumonia. As a result, Emma has been readmitted to CHOC at Mission in the PICU. She is back in her old room under isolation until they can determine whether or not she has MRSA. It is just a precaution and should only last through today. The doctor thinks that she won’t have to stay too long, most likely 2 or 3 days. So, Emma only got 2 and ½ days at home before needing to go back to the hospital. Please pray that the stay here is short so we can get her back home.

Emma's Home

Yesterday, the 10 month journey to bring Emma home ended. Now a new journey begins. It was an emotional day yesterday as we said goodbye to Healthbridge. As excited as we were to be going home, it was sad to say goodbye to all of the people who have worked so hard to get Emma ready to come home. We were supposed to leave the hospital by 10:00 am, but we got a little delayed after all the goodbyes. We decided to give Emma one last feeding before we went home, so we didn’t leave until about 12:30. We arrived home about 1:00 and showed Emma her new home. Around 2:30, Emma’s home health nurse stopped by to train us on the new equipment and had us fill out a bunch of paperwork. Emma’s nurse happens to be the same nurse that took care of Alissa during her pregnancy when she was on bed rest. It was very exciting to know that our friend Angela would be taking care of us again. As the day progressed, we started to get a little bit nervous as we tried to use the equipment by ourselves for the first time and tried to figure out which medicines Emma got when. Thankfully, we had my mom here to give us an extra hand until 5:00. Emma went to bed around 8:30 and slept very well. She woke up only once in the night. I wish the same were true for her mom and dad. With it being her first night at home without nursing care, we were both anxious. Alissa went to bed about 11:00 while I stayed up and watched her on the video monitor until about 2:30. I couldn’t stay awake any longer, so I brought the monitor into our bedroom and we hoped that it would wake us up if there was a problem. After I went to sleep, Alissa got another couple hours sleep over the rest of the night. Hopefully we will be able to sleep more comfortably tonight. We’ve been told that the first 48 hours home are the toughest. We are so excited to be home with our little girl and cannot wait to see what this next chapter in our lives brings.

Trial Run

Tomorrow is the big day. Emma is scheduled to be released from Healthbridge by 10:30 tomorrow morning. Over the past several days, we have been preparing for her homecoming. We had the house and carpets cleaned, received all of her home medical equipment, and took turns spending the night at the hospital being her sole caregiver. The overnights went well, but left us very tired. We had to get up every hour or two to either feed her, give her meds, or a breathing treatment. When she is at home, we will be able to split those duties and can adjust her meds so that she doesn't need them at night. Yesterday for Mother's Day, we had a day pass to dedicate Emma to the Lord at Woodbridge Community Church. It was a very special morning. We had 16 family members attend the emotional dedication. Emma did great. She was happy and didn't even flinch when Pastor Dave held her. Unfortunately, Emma is still extra vulnerable to germs so we couldn't show her off to everyone up close. Afterwards, we all went back to my parent's house for a Mother's Day celebration. It was so exciting to have Emma join us. It was the best day. We feel a lot more comfortable about taking her home tomorrow after she did so well throughout the day. We will send another update Wednesday after her first day home.

Thank you all for your incredible love and support over the past 10 months.

NICU Reunion

Yesterday, Emma received a day pass to attend the annual CHOC Mission NICU reunion. It was held in the parking lot of The Shops in Mission Viejo. Every year they invite the families of anyone who spent time in the NICU over the years. It is a great chance to see the nurses, doctors, and other kids that were there when you were there. We saw a few of Emma’s friends there and caught up with a lot of our nurses. Another baby named Kyle was born 1 week after Emma and weighed the same amount as Emma, 2 pounds 1 ounce. He was able to go home after 71 days and is doing great now. He is around 13 pounds. Attached is a picture of our 2 families. It was so much fun having Emma out of the hospital for a few hours. She did really well. We also went up to CHOC to visit the nurses who had to work during the reunion. It was nice to be able to walk in and out of there with Emma not having to stay behind. On the way back to Healthbridge, we stopped by our neighborhood to introduce Emma to our neighbors. They finally got to see proof that she existed. In another 15 days, she gets to go home for good. We cannot wait.

Breaking News

For Immediate Release

April 20, 2006

Emma Grace Ford has been cleared for a May 16, 2006 release date from Healthbridge Children’s Hospital. That also happens to be Emma’s 10 month birthday. Emma currently weighs 9 pounds 9 ounces and has been progressing well with physical therapy. In the past week, Emma has really showed a lot of progress. She is down to only a couple of medicines and is a very happy girl. She loves taking baths and sleeps through most of the night. On April 30th, Emma has been given a day pass to attend the CHOC Mission NICU reunion. Emma is really looking forward to seeing all of her old nurses and friends. Emma will be visiting her home for the first time on that day as well. As long as all of Emma’s medical equipment is approved and delivered in time, this date looks pretty solid. It has been a long 10 months for the Ford’s, but an amazing journey.

Thank you all for your continuous prayer and support!


Mark, Alissa, and Emma