Afton Jane

Afton Jane Fruit Photo Library

Sun, 26 Apr 2009 20:26:39 -0500

Afton Jane Fruit Photo Library

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Sun, 26 Apr 2009 20:18:24 -0500

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Sun, 26 Apr 2009 20:17:17 -0500

Life Changing Decisions

Sun, 26 Apr 2009 20:16:51 -0500

We apologize for not keeping up with our blog. Our lives have just been so hectic. So, this update is meant to tell you everything that has and will be going on with Afton. First, we would like to say THANK YOU to everyone for supporting us. The amount of people who have reached out and tried to make our lives a bit easier is just amazing. We really appreciate everything.

Afton is now 5 months old. She is smiley and giggles sometimes. We have updated her photo library, so be sure to check it out. She is still quite a handful because she is pretty fussy. We sometimes wonder if the fussiness is her personality or her metabolic disease. She often times just looks uncomfortable. So we spend a lot of our time holding and cuddling her. Her nanny, Brittany, is absolutely amazing. Afton loves her. We know how hard it is to care for Afton and we are thankful everyday for having found someone like her.

For the first 3-4 months of her life, Afton was very stable. The metabolic doctors that she sees at the University of Minnesota thought that she was doing wonderfully. She learned to eat all her food orally. In hindsight, this was surprising because kids with these disorders tend to hate food and can develop oral aversions rather quickly. Afton has a certain amount of calories that she needs daily, so we were constantly struggling to reach those goals. Believe us, it is far from easy to get a baby to a food goal if they hate eating. We started to depend on her feeding tube overnight to meet her goals.

Since everything seemed so stable for such a long time, we got a bit confident in her condition. Each trip to the clinic didn’t even include a blood draw to check her levels. We were all just confident that she was fine, since she was usually smiley. Then we got the call one random Wed about a month ago. Afton had been at the clinic and they drew blood for the first time in weeks. Her ammonia was 250, where a normal level is under 30. Now we were always told that when her ammonia goes up that we would know. Usually babies start vomiting, become lethargic, and if it gets high enough they can convulse. Her ammonia was high enough that she should have been showing all of these symptoms. However, Afton just smiled the entire time.

They had us bring her to the ER, where they checked her ammonia again. It was assumed that the test was bad (it’s a very picky test) because she was acting so normal. Unfortunately, at the ER her ammonia came back even higher. So, she was admitted to the hospital, and given IV fluids. Her ammonia continued to rise, so she was transferred to the Intensive Care Unit. They surgically put in a central line in her, which was used to administer stronger medicine to lower her levels. Even the doctor in the PICU was surprised that her ammonia was so high since she was smiling at him. By that time it was over 300. Once the central line was in, her levels came back to normal fast, but it wasn’t easy on her. When her ammonia returned to normal she screamed inconsolably for 30 hours. Nothing seemed to help her. The doctors believe that she may have gotten a really bad headache coming down off the ammonia because it is a poison building up in the body.

Fast forward two weeks later, and Afton had been back in the hospital 2 additional times for high ammonia. She would normalize for a few days then go into a crisis mode. It was scary from our perspective and the doctor’s also because she didn’t show us any symptoms. It was after the third time that we elected to have a port put in her. This is a simple surgery that puts a port into a central vein close to the heart. Each time Afton was in the hospital they needed to put an IV in her, which is very difficult on a baby. She would often times get poked 3-4 times before it was successful. They also needed to check her ammonia every couple of hours, so they would need to poke her elsewhere. After two weeks of this, almost every vein was bruised and damaged to the point where we couldn’t draw blood, not to mention that she is probably traumatized by the experience. Having a port will save her from experiencing that again. An IV, blood draw, or central line can easily be administered on her through her port.

It was around that time that the doctors started talking to us about a liver transplant. While this sounded scary at first, we eventually learned that there are also a lot of benefits. First a liver transplant cures her disease. So, we would no longer have to worry about high levels of ammonia, which cause brain damage. Also, she would be able to eat anything she wants and there would be no food goals as long as she gains weight. We feel that the chances of further innovation in her lifetime is more likely with a liver transplant because her disease is so rare.

It has been a couple of weeks and Afton has stayed stable. They have reduced her protein significantly. This seems to help, but it’s not great for helping her grow. We are not able to bottle feed her. She is on 24 hour food drips through her G tube, which the doctors seem to think helps her stay stable. The good news is that she is hovering around the 50th percentile for weight and height.

With all this being said, we are putting her on the transplant list on Monday this week. Our prayers are that she stays stable until a liver is available, that the family who loses their child to help save Afton is comforted and rewarded some other way in life, and that Afton survives and is stable after the surgery. Once we get the call, we will need to be mentally prepared to live in the hospital for months. They tell us the first year is the hardest, and after that life gets better. Typically by year two, she will probably be on one medicine and have a doctors appointment every couple months….eventually the appointments become annual. She will have no limitations: physically or diet wise.

We strongly feel that Afton has been through too much to continue her life like this, and a new liver is her chance at being given a better life. Since she is young, we hope that she overcomes any damage that has already occurred to her brain. Developmentally, babies with these disorders have done much better after having a transplant. We pray for that for Afton.

So, in conclusion we ask that everyone pray that Afton gets a liver in the appropriate amount of time, and that it is a perfect fit for her body and blood type. We also ask that you do not forget the family that this is coming from. Their pain will unfortunately be our miracle. We’ll do our best to keep everyone up-to-date.

Peace from the Fruits.

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Fri, 13 Feb 2009 16:22:03 -0600

Happy (sometimes) and Growing

Fri, 13 Feb 2009 16:20:01 -0600

First we would like to apologize for taking so long to post another blog. Life has been so hectic, next thing we knew weeks had past. We have also updated Afton’s photo library so be sure to check it out.

The last month or so has had its ups and downs. The week after the surgery Afton got an infection in her belly button, which is where they did an incision. We brought her into the hospital, just to be safe. They gave her antibiotics through an IV, and two days later sent her home. The next day we got a phone call saying that her blood sample (which was drawn while in the hospital) contained a bad bacteria. They asked us to bring her back in because they were expecting her to get extremely ill. After spending 3 more days in the hospital with a pretty happy and healthy baby they decided that the blood sample had been contaminated. We were then sent home again. So, we spent a week in the hospital for no reason at all, except a topical infection on her belly button.

Two weeks after the surgery Afton started being very fussy especially when it was time for the bottle. At one point she would cry all day and even harder when you come near her with a bottle. After talking with the doctors, they think that the surgery has caused her to have bad reflux. So we started her on a medicine called Prevacid. We know various other babies who have been on this and have had successful results. After a week and a half of being on the medicine, Afton was still having a hard time….but we have to admit it was slightly better. Since we were more confident in the diagnosis of reflux, the doctors doubled her dose. They say we should see results by Monday, so we’re keeping our fingers crossed.

Otherwise Afton is doing quite well. She likes to smile, stand (with some support) look at toys and books, and listen to music. She can’t take her eyes off of the guitar when Dad strums a few tunes. She even got to go on a couple of trips. We went to Tomah to spend a weekend with her Fruit cousins. She also visited Great Grandma (GG is the preferred nickname as she’ll explain to you) Lundorff. So many people have been coming over to visit her as well.

We did hire a nanny. Her name is Brittany, and she is so wonderful. She’ll make a great addition to our family. Afton got to play with her all day yesterday. They were friends from the start.

Thanks again to all of you for your thoughts and prayers. Let’s all hope that things stay calm for a while. As parents, we really enjoy and need these times of normalcy. Love and kisses to you all! Happy Valentines Day.

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Sat, 17 Jan 2009 16:15:48 -0600

Post Surgery

Sat, 17 Jan 2009 16:12:00 -0600

We are happy to report that Afton had her surgery this week to insert a feeding tube. It was a long and hard week, but now that we are all home again things are going well. She seems much more happy without the NG tube (nose). She is still a little sore, but nothing that a little Tylenol cannot handle.

Afton is eating all of her food through the bottle, and is starting to have a good appetite. Her weight gain has been great throughout her first month home. This week she has her 2 month appointment, which will be filled with not-so-fun shots. She is a pretty happy baby in her most alert times. She smiles a lot which is so cute. She is also starting to play with her voice. She tries so hard to talk that she usually ends up with the hiccups. Occasionally, she gets a little baby babble out of her mouth, which surprises her and makes her smile. When in the hospital, we realized that Afton really loves a good bouncy chair. Now that we have purchased one for at home, she spends most of her time there.

Post-Christmas

Tue, 30 Dec 2008 18:13:00 -0600

Afton has now been home two weeks and is doing great. We were able to travel a little for Christmas. Our visiting time was limited, but Afton was happy to meet many family members (especially great grandma L).

She has transitioned almost completely to bottle feeding, but still requires the tube for medicine. In the past she would drink around 1/2 ounce to one ounce per feeding and we would supplement the remaining calories through her tube. Currently, she is eating about 3 to 4 ounces per feeding.

At her appointment today she weighed 9.25 pounds, so she is gaining weight well. You can definitely tell when you look at her cheeks. She continues to be very alert and explore the world around her. Her eyes are getting better at tracking sounds and objects.

Despite the fact that she is doing well with the bottle we are looking at doing the surgery to inplant the feeding tube into her stomach in January. She is still on the blood thinner but the doctors have decided that her clot would not be at risk of getting worse if we take her off the medicine for a couple of days to do the surgery. Then she will go back on the blood thinner for an extended time that is yet to be determined. We feel that having direct access to her stomach could be life saving for her in the future. Hopefully we won’t need to use it on a daily basis. Right now we still use it to give her medicine.

Thanks to everyone for all your help as we have returned home. We can’t state how thankful we are for all the support. For those of you who have not met Afton and would like to, we are more than happy to have visitors to our house. Again, please hold off on visiting if you have been ill.

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Thu, 18 Dec 2008 13:48:27 -0600

Day 25

Thu, 18 Dec 2008 13:43:48 -0600

Three weeks and 3 days later, Afton has come home. We are all doing well. Afton continues to work on her bottle feeding, but we are still giving her food and medicine through her NG tube (feeding tube through the nose). We have decided to do surgery to insert a G tube (feeding tube through the stomach). Since she is currently on a blood thinner for her clot, so we need to wait to have surgery until she is off that medicine. We are hoping this will happen in mid to late January. The G tube is more common than we thought, and will only leave a scar when she is older. It helps us as parents be reassured that she is getting the calories and medicine she needs, which will hopefully make her first illness less serious.

Thanks again to everyone for all your support. We couldn’t have made it through the last few weeks without our friends and family.

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Fri, 12 Dec 2008 21:48:03 -0600

Day 19

Fri, 12 Dec 2008 21:43:42 -0600

We just wanted to reiterate our appreciation to everyone for all of your positive thoughts.

Afton is stable and continuing to work on her bottle feeding. She definitely knows how to eat with a bottle but hates doing it. She either pretends like she is sleeping (playing possum) or cries when we try to get her to eat. The doctors believe that she is very uncomfortable when she swallows, so it could be reflux or the feeding tube is irritating her throat. She will probably be in the hospital for at least another week if not two weeks. Our hope would be to have her home for Christmas, but we need to just stay patient.

Today was Afton’s first encounter with a celebrity and we have to admit that she has the biggest claim to fame of anyone in the family. Will Smith was so great and positive. He gave so many kids in the hospital such a good experience. Everyone was smiling and most were speechless. It gives us a lot of respect for him to take time out of his day to make these children forget about their illnesses for just a short amount of time.

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Mon, 08 Dec 2008 22:25:28 -0600

Day 15

Mon, 08 Dec 2008 22:20:33 -0600

Today Afton had a swallowing test. They took an X-ray of her swallowing to ensure that all the liquid goes to her stomach and not down her airway. If some of the liquid is leaking into her lungs it could cause an infection, which could be dangerous for her. She did really well with the test and so they have let her start to practice bottle feedings with small amounts.

The doctors have been starting to educate us more about Afton’s disease. About 1 in 100,000 babies are born with this. It is quite rare, so not only are we learning the medical professionals are leaning more every day as well.

The most important part of keeping Afton healthy in the future is to ensure that her ammonia levels stay within normal ranges. We can do this by giving her medicine and putting her on a special diet. However, when Afton’s body creates white blood cells, her ammonia levels can go up as well. So, this means that anytime she is starting to get sick, we need to be proactive and get her to the emergency room. They will give her the nutrients and fluids that her body needs to lower the ammonia levels. To begin with, we will need to go to the hospital for any of the following: a cold, fever, loss of appetite, vomiting, flu, or exposure to people who have had the flu.

This is very overwhelming for us to think about as parents, so we would like to ask for help from our closest friends and family in monitoring this. If we are all together and you/your family has had or had exposure to the flu (or other illnesses), we ask that you let us know. Additionally, if we are together and soon afterwards your family gets ill, we would appreciate a phone call letting us know that as well. Lastly, as fun as babies are to hold and play with we ask that you refrain from doing this if you have been sick or around others that are sick. As Afton gets older this shouldn’t be as hard for us to manage, but we need to be extra careful in these younger years.

There is more talk about getting Afton ready to go home. At this point we think that she will go home with a feeding tube. She will probably be able to take a bottle, but the feeding tube helps us guarantee that she is getting the appropriate amount of calories as well as her medicine. This is our preferred method because if we have direct access to her stomach, there is less risk of her ammonia level rising to dangerous levels with her first illness. So, if she starts to vomit, we can ensure her body gets nutrients and the appropriate medicine by using the feeding tube rather than trying to get her to swallow it.

We are open to visitors if you would like to come and meet Afton before she leaves the hospital. Please just call one of our cell phones to arrange a time that works. Again, we ask that you not visit at this time if you have been sick or even around someone who has been sick. Thanks for all your support and prayers.

Day 11

Thu, 04 Dec 2008 22:08:21 -0600

Afton has had a number of changes over the last few days. She was extabated (removed from her breathing tube) two days ago. This process went well and she is doing a good job breathing on her own.

Her legs are still very swollen due to the dialysis catheter. This created a blood clot that goes from her knee up into her groin. They will continue to monitor this but her body needs to auto-correct the blood flow around the clot, which may take some time. She will need to be given 2 shots a day for 3 months to help with this.

She had another echocardiogram done on her heart and from that standpoint everything has returned back to normal. So there are no major long term concerns with her heart function.

She had an MRI done on her head on Monday to help assess any damage from the high ammonia levels. Unfortunately, the neurologist believes that this traumatic experience has caused brain damage, but to what degree we will not know for months or possibly years. We understand that this brings many questions to mind and we want to express that we are feeling the same way. There are no definite answers at this time and that is hard for all of us to accept. We are learning to take things one day at a time. Each time she reaches a new milestone (sitting, standing, walking, speaking, etc) it will help us understand where her limitations will or will not be.

We continue to be optimistic and hopefully her brain will do amazing things. She is only 11 days old and babies are very unpredictable. This is why they cannot tell us what to expect in the future. If she were an adult the impact would be much more predictable. As far as today, we look for signs that she can do things that babies would do which include: crying, pooping, sucking, breathing, looking around. She is able to do all these things. Today she has been crying quite a bit. She is still on a feeding tube, but has been sucking on a nook occasionally. They have turned her feeding tube off for three hours to encourage her to get hungry which will eventually let us try bottle feeding. If the feeding tube is constantly on, there is no motivation for her to suck on a bottle. This will be the next big step for her.

Today she was transferred out of intensive care. We have mixed feelings about this. We have definitely developed a comfort level with the doctors in the PICU, so the transition will be hard for us as parents. However, this is good step in getting Afton ready to come home. They are starting to educate us on her care for when she does return home. We are excited for this to happen, but obviously are dealing with a lot based on the neurological results. It has been a very emotional and difficult time for us both, but we are working on taking things one day at a time and not trying to predict the future. Thanks for all your thoughts and prayers. Please keep them coming.

Day 5

Fri, 28 Nov 2008 21:52:20 -0600

Doctors continue to wean Afton off the breathing support, however this is something you don’t want to rush. They tell us it’s common for newborns on respitory systems to develop lazy tendancies when it comes to breathing. We need to teach Afton to breathe on her own again, but aren’t sure how long this process will take her.

Like most newborns, she slept most of the day, but she had periods of alertness. Her eyes would open and she would respond to touch. She was tightly swaddled to keep her from pulling out the breathing tube, as her physical movements increase. Throughout the day, she was not on any medication for pain or sedation, so she slept and awoke on her own schedule.

She has swelling in her leg from the dialysis entry point in her femoral artery. The color has reduced from purple & red tones to normal skin colors. Today they did an ultrasound on the leg and found a large clot blocking the passage of blood. At this point, this isn’t a cause for great concern, because it’s not blocking the blood to the leg, rather the return of blood back to the heart. Her lower leg still has a pulse, and she can wiggle her feet and toes. The nurses/doctors have told us that the body will naturally reroute blood so it gets back to the heart. With this said, they are taking measures tonight to try and reduce the clot and open the passage, therefore helping to reduce the swelling.

Throughout the day she was fed formula (through a feeding tube). It was a special formula prescribed by the metabolic specialist, that allows Afton to process the proteins within.

While we feel encouraged about some of these progresses, the full impact of the high amonia is still unclear. We want to thank everyone for all your thoughts and prayers, please keep them coming.

Afton Jane Fruit, at 1-day old.

Thu, 27 Nov 2008 21:10:00 -0600

Afton Jane Fruit, at 1-day old.

On Saturday, November 22nd in the evening hours, Bridget went into labor and was admitted into...

Thu, 27 Nov 2008 21:09:17 -0600

On Saturday, November 22nd in the evening hours, Bridget went into labor and was admitted into Methodist Hospital. Labor progressed smoothly through birth, and Afton Jane was born at 12:45pm the following day. She was 7 pounds - 7 ounces, 21 inches, and seemingly healthy and well. The initial exam with the staffed pediatrician went well. Even in the capacity of her limited knowledge of Bridget’s pre-existing heart condition, her assessment was positive. This however, we were prepared to take with a grain of salt, because we had already lined up a pediatric cardiologist at the Children’s Hospital to assess the tests on Afton’s heart. Our orders were to have the specialist receive the test results as soon as possible after birth. Upon reviewing the data, the specialist was concerned enough to have Afton transferred to his hospital to be monitored.

The first day at the Children’s Hospital things went well. However that evening Afton suffered a respiratory-arrest and would not start breathing again on her own. She lost consciousness, and the doctors were unclear what was happening to her, or how to awaken her. She was immediately put on life-support systems and medication to regulate breathing, heart functions, and nutritional intake. At the same time, testing swiftly began to try and find a reason for her condition. The next morning, the doctors had test results showing unusually high levels of a couple things — one was an abnormally high ph level in her system, and the other was a high amount of ammonia. The ammonia lead the doctors to suspect a failure in the metabolic system, and it was decided to have Afton transferred again, this time to the Children’s Hospital at the University of Minnesota, where an area renown specialist in metabolic systems was located.

Upon arriving at the new location, we were greeted by an amazing group of doctors and staff. The first step, as immediately as possible, was to lower the levels of ammonia in her body. For this they had introduced medication, however the only proper way to make a true attempt at lowering the levels as fast as possible was to use a process called continual-dialysis. In this process, the blood is continuously syphoned from the body, scrubbed, and put back into her. She would continue on this process until her ammonia levels dropped to a normal level, and we were sure would remain stable and at healthy levels. That night, the dialysis worked very well at removing the toxins, and by morning, her ammonia level was within the confines of normalcy. This was key, because the faster the toxins are removed from the system the less damage it can do to the body. Throughout this process, she continued on life-support machines and medications to regulate her bodily systems.

Now that her ammonia levels were seemingly stabilized, the focus shifted. We needed to find the reason why her body had produced toxic levels of ammonia in the first place. This was the task of a brilliant specialist in the area of metabolic processes. She had already initiated many labs that she would use to find the root of the problem. With the specialist’s direct contacts at the Mayo Clinic, and the Department of Health, the labs were fast-tracked, to expedite the finding of the solution.

In the meantime, Afton’s body started to show some light signs of recovery, as she started showing physical reactions to some touches, and involuntary movements in her extremities. Her responses to stimuli and her physical activity seemed to be slowly increasing, which is very positive.

The metabolic specialist then told us that she had determined the diagnosis. Afton possessed a rare genetic defect in her metabolic system that, when breaking down certain kinds of proteins, the process went awry at the last phase of metabolism where ammonia is converted into urea (urine). When the human body is sick or under stress, it looks to protein stores in the body to metabolize into food to use as fuel to combat its condition and heal. Afton’s body cannot (by itself) successfully break down those proteins. The result was a build up of toxins (ammonia), causing more stress, and the cycle snowballs. This condition can be mediated, with a specific diet and medication, and with that knowledge her body has recently began to be intravenously supplemented with proteins that her body can process.

At this point, we are unclear how much damage her body has suffered. But, with the factors that cause the damage eliminated, we have reached a phase of healing. We don’t know how long this process will take, nor do we know to what extent it will progress. Our main concerns are for a full recovery of her heart and brain functions. Slowly, specific life-support systems are being weaned, hopefully allowing her to breath without the help of machines, and let hear heart function without the help of regulating medicine. Unfortunately, at this point Afton needs time, so we will need to be patient and wait to learn more.