Long Awaited Photos

I'm trying to be a big girl, but I forgot to add the food.

Family Photo at Thanksgiving

Santa Claus and Choco Bear at the CHOC Toy Ride at Mission.

I'm Sleepy.

A Happy Thanksgiving

I am sorry for not posting an update sooner. Emma came home from the hospital on Tuesday night and was able to join us at home for Thanksgiving. It was her first big holiday out of the hospital and it was great. We spent the afternoon at Nana and Papa Ford's house. There were 13 of us. Emma tasted a couple different things and liked them. She really liked gravy because of its saltiness. She kept licking her lips. In the evening we headed over to Uncle Braden and Aunt Kelly's house for their first Thanksgiving at their home. It was nice to be able to spend time with both sides of the family. The rest of the weekend we just enjoyed spending time with Emma at home. We took her to the park today to go on the swings. She loves being outdoors. I promise to post some new pictures soon.

A Long Winter

It looks like we are in for a long winter with Emma. She was admitted to CHOC on Friday again with pneumonia after only being home for 12 days. She was doing so well and then started throwing up again constantly on Friday. As we expect to be back at the hospital a few more times before the end of winter we are trying to get a porta-cath to make setting up IVs easier for Emma. Since she has spent so much time in hospitals, her veins are shot and it can take up to 10 pokes to finally get a good one for the IV. This would be a long term IV starter surgically placed under her skin. They are used a lot with cancer patients. We are crossing our fingers that she can be home for Thanksgiving. The only holiday she has ever been home for is the 4th of July. We would be very thankful if she wasn't in the hospital this year.

Home

Sorry for the delay on an update. Emma got home from the hospital last Monday and she is doing well and is very happy to be home. We got an amazing new camera on Friday after dropping our last one. Here are some new pictures.

Emma at 16 months

Emma and Mommy

Emma sleeping on Auntie Katy

Emma and Riley

Fun Pictures

Emma and her friend Riley.

Our Frog Princess!

Emma in daddy's hat.

Family photo at the pumpkin patch.

Still at CHOC

Today marks a week back at CHOC. Emma is feeling better and is acting more like herself, but the doctors want to run some more tests. It looks like she will be there a few more days. They want to check and see why she is not growing as fast as she should be while she is still there. She also had a low heart rate last night so they would rather be extra cautious.

Back at CHOC

On Friday night we took Emma back to the hospital. During the day she had thrown up 12 times and couldn't keep down a syringe of water. Alissa has not left her side in 3 days. In the past we could leave Emma when she went to sleep, but now she is aware of her surroundings and wants mommy whenever she is awake. Yesterday she was finally able to tolerate some pedialite in addition to the IV fluids. She has pseudomonis again which is some sort of infection or bacteria from her trach.

Last Weekend

Last weekend we took Emma to Chance's 6th birthday party at a local park. She had a lot of fun. It was a pirate themed party that included a pirate ship bounce house. We got to catch up with a lot of people from Healthbridge. Emma went on the swings for the first time and really loved it. . We also took Emma to the pumpkin patch for a photo op. Here are some pictures from the day.

15 Months

Emma turns 15 months old on Monday. I cannot believe how fast it has gone. She is progressing well, but we wish she would gain weight faster. She loves to play peek-a-boo, blow us kisses, read books, and watch Playhouse Disney. We wish she could have joined us at the CHOC Walk on Sunday, but it would have been too much for her. It was a lot of fun, but you felt like a heard of cattle being driven from one location to the next. They estimate that there were 16,000 walkers. We ran into a lot of people we knew, including our friend Chance from Healthbridge. He was recently adopted and lives near our house. We will be attending his birthday party this Saturday. This month we finally started to receive home nursing for Emma. We qualify for 20 hours a day, 7 days a week, but there are not enough nurses to staff it. We are leaving weekends as optional in case we need a break. Alissa has benefited the most from the home nursing as she has been able to get uninterrupted sleep a few nights a week.

Emma's Entourage

This Sunday at 7:00 am, a group of 20 will be participating in the CHOC Walk as Emma's Entourage. As a group we raised just under $4000 for CHOC Hospital. It should be an exciting event. We will post some pictures from the walk on Monday.

Emma Update and CHOC Walk

Dear Family and Friends,

Emma is doing so well. She has several teeth now and is becoming quite vocal. While it will remain difficult to talk with a trach, she has discovered that she can make noises. It is quite cute. She has been making good progress with her physical therapy as well. She is able to balance herself with a little help on a large ball and can hold herself up on a box with some support. Since mommy went back to work, Emma has done well with both grandmas babysitting. Daddy even took a shift on Tuesday. This weekend marks this 1 year anniversary of CHOC saving Emma’s life. On September 10, 2005 we almost lost our little girl, but through the heroic efforts of so many nurses and doctors, we get to experience all these joys today. We are so thankful to CHOC and their staff and want to give back. We will be participating in the annual CHOC Walk on October 8th. If you would like to sponsor us or participate yourself, please let me know. There is no pressure; we just wanted to let you know of the opportunity. Below is all the information. Thank you once again for your prayers and support over the past 14 months.

Thank you, Mark, Alissa, and Emma


We are participating in the 16th Annual CHOC/Disneyland Resort Walk in the Park on Sunday October 8. As a walker, we’re trying to raise as much money as we can to help the children of CHOC. Children's Hospital of Orange County is very special to our family. As you know, they helped save Emma’s life. We want to give back as much as possible. After spending a total of 10 months in the hospital, we know first hand how special CHOC is. CHOC is a place where any child can receive the medical attention they need, regardless of their ability to pay. Last year, the CHOC Walk raised over $1 Million to help pay for this medical care and this year our goal is to raise even more! This is a unique opportunity to make a difference in the lives of the 150,000 children who visit CHOC each year. If you are interested in donating, here is the link. CHOC WALK. Click on sponsor a registered walker and our registrant id’s are mdford1973 for Mark and yoyosmommy for Alissa. If you prefer you can also give a check directly to us made out to CHOC. If you are interested in walking with us, let us know ASAP so that we can get you the information to signup. We need at least 4 more walkers for Emma’s Entourage. It will be a great event and will benefit so many kids.

New Pictures

I like to eat beef jerky with my new teeth!

Mommy, Emma, Grandma, and Great Grandma

I like to play with paper.

Look at me doing physical therapy.

Emma has Teeth

Emma officially has her top 2 front teeth and we see a few others breaking through. She looks adorable with her toothy smile. A couple weeks back, she spent 4 days in the hospital, but it turned out to be a false alarm. She was throwing up a lot again and we didn't want to chance it. All tests came back negative for infection so she came home. 4 days is a new record for her shortest stay. Two weekends ago, we took Emma to the Mission Hospital parking structure to greet 900 motorcycles as they came through on their annual CHOC Ride. The bikers ride from location to location picking up poker cards trying to make the best hand. They end up at the blimp hangers on the old Tustin Marine Base. It is a great fundraiser for the CHOC. Emma was so excited seeing all the motorcycles. We had to put ear plugs in her ears though because it was so loud! This past weekend, Emma got to spend time with Alissa's extended family. In all, there were 16 of us together for dinner at Grandma and Grandpa's house. Her Great Grandpa and Grandma Smith were in town for a few days, so we all got together. Emma had a great time and stayed up way past her bedtime.

New Job

Alissa started her new job at CHOC last week. She went through orientation on Monday and has been training with Marta at Big CHOC for the past 5 days. After she finishes her training this week, she will begin her official work on the 5th. She cannot wait to start working with the families.

Newest CHOC Employee

On Friday, Alissa was officially offered a position as the Parent Services Coordinator at CHOC Hospital in Mission Viejo. This is an exciting opportunity for her to use her experiences over the past year with Emma to help other parents going through similar situations. She will act as a liaison between the parents and doctors/nurses. It is a 20 hour a week job with flexible hours. We cannot imagine a more perfect job for Alissa. CHOC has become so much of our lives with Emma in the hospital for 10 months and now we can give back. She will be starting on or before September 11.

Great Weekend

This past weekend Emma had a lot of firsts. On Friday we took her to Babies R' Us for her first portrait studio photos. We arrived just before 5:00, but there was a long wait. By the time they were ready to take her pictures, she was tired and we only ended up getting 6 pictures taken. They turned out nice though. Daddy had to work on Saturday, so Mommy and Grandma took Emma to Healthbridge for a visit. On Sunday Emma finally made it to our church Sakred for the first time. It was so nice to be back and the sermon was quite appropriate. The theme was Welcome Home and was on the parable of the prodigal son. After church we went to Nana and Papas house for a thank you lunch for everyone who helped out with Karen and David's wedding last month. Then on Monday, Emma got to visit Mommy's school and meet a lot of the prayer warriors there. We are still waiting for her teeth to break through. They are so close and Emma can't wait for the pain to go away.

Trach Update

Yesterday Emma headed over to Big CHOC for a bronch to see how her airway has progressed since getting a trach last November. She had an appointment at 1:00, but we were supposed to be there at 1:00. She also had to fast from 8:00 on. When we arrived, CHOC had no record of the appointment. Alissa walked over to Dr. Nickerson's office and he remembered booking the appointment as well. He pulled together a team and made the bronch happen after all. It was just another example of how great of care we receive from the CHOC family. After trying to give Emma a couple IVs and failing, they gave her some versed through her nose and she relaxed greatly. Her bronch procedure consisted of sending a tiny camera through her nose down her throat. They checked to see if the airway had become stronger, larger, and if any granuloma tissue had formed. Dr. Nickerson was surprised how far she had come. When they removed the trach during the procedure, her oxygen level and breathing remained good and her airway remained open and pink. He expects that by next Spring she should be able to remove the trach without any further surgeries. She just needs to gain about 50% more weight and she will be good to go. We look forward to that day because we will have a lot less medical equipment in the house.

I'm One!

On Sunday, Emma turned One! It was a very special day. We celebrated at Grandma Julie and Grandpa Jack's house with a small group of family, friends, and our extended family (Emma's amazing nurses). It was so much fun to celebrate how far she has come in a year. She went from 2 pounds 1 ounce and 13 inches long to 10 pounds 10 ounces and 24 inches long. She has been home for more than 4 weeks this time around and is doing so well. She enjoys spending time with Mommy playing. She loves to bounce, swing, and play with her toys on the floor. She also loves to watch Playhouse Disney, although Mommy and Daddy can only take so much of The Wiggles and The Doodlebops. On Friday Emma goes in for a bronch to see if she still needs her trach. In all likelihood she will still need it for another year, but it will be good to see how far she has progressed. Another bit of exciting news is that we will probably be getting home nursing from 11 pm to 7 am, Monday through Friday in the next couple of weeks. We cannot wait!

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

Big Girl

Emma is now a whopping 9 pounds! We got to drive her to get a shot last week in our own car for the first time. It was so exciting. She did so well. Healthbridge is talking about a discharge date of late May to early June right now. We are not holding our breath as we expected her home in time for Christmas, but it is nice to have a timeframe. Emma is starting to be a lot of fun. She entertains herself in bed and has started to give us kisses on our cheeks. It is quite entertaining as it looks like she is trying to eat our faces. We got some great video footage of this. I will create a video file and upload it to the Internet later this week. As soon as I do, I will send you the link. I am attaching a link to a new online photo album. Thanks again for all of your support!

3-14-06 Update

Emma has been cruising along with no real estimate of when she can come home. She turns 8 months old on Thursday. She is currently eight and a half pounds. Since my last update, Emma has started to move a little bit in her crib. Every once in a while she will completely roll over, but she can squirm and turn 90 degrees in her bed so that she can see her mobiles better. We gave her some fingers full of baby food this past week just to see if she would take it. She licks it, but still has a hard time swallowing. We also recently took her on a field trip to a doctor’s appointment off-site in an ambulance. That was a lot of fun because it was almost normal as we sat in the waiting room of the doctor’s office. Next week we get to take her on our own to another appointment. That will be scary, but so exciting. Yesterday we had a professional photographer come to Healthbridge to take some good photos of her.

Emma News

Sorry it has been so long since I last updated you about Emma. She is doing pretty well. Over the weekend she seemed to have a cold and fever, but beyond that she has been cruising along. Last week she took a couple of field trips to doctor's appointments offsite via ambulance. She enjoyed being outside. It was almost normal sitting with Emma in my arms waiting to see her cardiologist in the waiting room. Her cardiologist was very happy with her progress post heart surgery and wants to see her again in May. She is still having issues with oral feeding, but her other devlopment is progressing. She tracks well with her vision and has discovered her hands. There is still no time frame for coming home, but we see gradual improvements.

Curious George

Alissa and I had the fortune to attend an advanced screening of Curious George on Saturday morning. It was as fun as a barrel full of monkeys. Ron Howard has made a great family film that is actually appropriate for all children. As a parent now, I look at films in a whole new way. While I enjoy all sorts of films, I am now watching them while asking myself if I would feel comfortable letting Emma watch this. The answer to that question is absolutely for Curious George.

The movie tells the story of how the man in the yellow hat and Curious George come together. Will Ferrell is the voice of Ted. He works for a museum that is going under. In an attempt to save the museum, Ted volunteers to go to Africa to bring home a great new exhibit to boost attendance. Once in Africa, Ted meets an adorable little monkey who follows him everywhere. After some disappointments, Ted heads back home defeated. Curious George follows him back home to the States and chaos ensues. Curious George lives up to his name as he gets into all sorts of trouble in the big city.

Curious George also uses the talents of Drew Barrymore, David Cross, and Dick Van Dyke. Despite being a movie that is geared towards children under 10, Alissa and I thoroughly enjoyed this movie. We laughed and found ourselves comparing Emma to George. The film is under an hour and a half, so it is perfect to bring your kids to. I am sure that we will see this movie many more times on DVD after we purchase it for Emma’s library.

6 Months Old

Emma turns 6 months old today. She was supposed to go to Healthbridge last Tuesday and then again today, but she doesn’t seem to want to go. She had a low temperature last night, so they need to monitor her a little longer before sending her. She has been doing great otherwise. We were able to take her outside onto a patio yesterday and she loved it. We have been playing with her outside the crib a lot as well. She doesn’t need to stay attached to the monitors all the time so she is more mobile. She is a little more than 7 pounds right now.

Happy New Year

Happy New Year,

Emma is doing well. She is finally back over the 3 kilo mark and has slowly started to feed orally. It will still be a while before she feeds completely by mouth, but she is making progress. Over the past 2 weeks Alissa spent all day at the hospital with her while she was on Christmas vacation. It really gave her a chance to see Emma’s routine throughout the day. She also stayed overnight with her on New Year’s Eve to see what she does overnight. She didn’t get much sleep that night. Emma will be on antibiotics for another 2 weeks and then she will be going to a rehabilitation center called Healthbridge. We didn’t want to send her there at first because we just want her home. We changed our minds after touring the facilities yesterday though. It is a wonderful place in a home-like environment. It is a hospital designed for children who are medically complex with 24 private rooms. The hospital is large enough to handle the most medically complex cases yet small enough to give families a sense of intimacy not evident in traditional children’s hospital settings. Their goal is to get Emma home as quickly as possible. We also know all but 2 of the doctors because they all work at CHOC as well.