Feeding Tube Awareness Week, Day 2

From their website:

 Topic: Why I have/my child has the tube they have now - a highlight on the medical conditions that require tube feeding.

Maryam had 4 different feeding tubes ranging from when she was only a few weeks old up until her Mic-Key button was removed when she was 4 years old.  Her first tube is called a NG tube.  The NJ tube or Nasal Gastric tube is a tube that is inserted up the nose, down through the throat and ends in the stomach.  This is placed without any anesthesia and can be done in the home or in the doctor's office.  When Maryam first came home from the NICU she had an NG. 
After one of Maryam's procedures in the NICU she had some trouble with motility, digestion and vomiting so the docs decided to place and NJ tube or Nasal Jejunum tube.  With this tube, the stomach is completely bypassed and the tube ends in the Jejunum.  This is so the body doesn't have to digest the food, its harder to vomit it back up and its easier to pass through the bowels.  Once Maryam was stable again she went back to an NG tube.  
Days before Maryam was discharged from the NICU we had a long talk with her doctors and some nurses about how we weren't ready to have a G-tube placed or have a Nissen/Fundoplication procedure done on her.  So, with that decision came a ton of training.  We had to learn how to place an NG tube in our little baby.  Maryam was nearly five months old, but still only 7 pounds 9 ounces when she was discharged from the NICU.  But I wasn't ready to "give up on her" yet, so we learned how to place the NG. Personally I wasn't ready for her to have a G-tube.  I was still praying that she'd learn to coordinate her suck/swallow/breath, that her lungs would get better and that her GERD would get better.  
When she came home it was a little overwhelming but we were super organized.  We had a binder that we kept track of everything in.  We kept track on spreadsheets of how much food she drank, how much went into the tube and how much she vomited up.  We had  a medicine spreadsheet.  We had a poop and pee spreadsheet.  We had an oxygen tank spreadsheet.  We had a DME ordering spreadsheet.  WE WERE ORGANIZED!  I had to take her, her feeding pump, her oxygen tank and her binder with me to the doctor every week for oxygen tests and weight checks.  She kept failing both.
After 2 months at home and barely a pound of weight gain and no lung improvement, we knew it was time.  The docs ordered another swallow study and upper GI and the decision was made, Maryam was getting a G-tube placed and a fundoplication.  Sigh.  The official reason for the G-tube placement was Failure to Thrive (FTT).  The official reason for the fundo was complications of Bronchopulmonary dysplasi (BPD) due to microaspirations from severe Gastroesophageal reflux disease (GERD). Maryam had surgery July 17, 2007 she was 7 month and 9 days old and weighed about 8.5 pounds.  She stayed in the hospital for 2 weeks and came home with a new feeding pump, feeding pump bags, gauze, tape, rope, syringes and new medications.  
Maryam took her last bottle on August 4, 2007.  Arguably one of the saddest days of my life.  Just typing that sentence made me tear up.  
Two weeks after Maryam's G-tube was placed we took her in to have the tube removed and the button put in.  The button was RAD.  It made it possible for us to put the tube on and off as needed.  When it was time to eat, we attached the tube, when she was finished and vented, we took it off.  It was GREAT.  The Mic-Key button is the brand she had.  As she got bigger, she got a bigger button.  The Mic-Key button and feeding tubes were the only brand we had.  They worked great for her.  I have no complaints. They kept my little punkin alive. 
On September 20, 2010 we took out her button!  Arguably one of the happiest days of my life.  
On March 30, 2011 Maryam's stoma was all closed up!  
Here is a post from the day of the surgery.  I love the before and after shots.  :)

Feeding Tube Awareness Week

According to their website:
The goal of Feeding Tube Awareness Week it to spread awareness and educate as many as possible through Facebook status posts, notes, twitter, blog posts, email...basically however, you want to spread the word. The topics below are a guide. They will be posted daily on the Facebook Page but also encourage you to use them in your posts to others.


Daily Topics
Topic: Why awareness is important to my family - What would be difference for me/my child if tube feeding was better understood?

I want to start my post by recognizing what a wonderful idea this is. Maryam hasn't been a "tubie" since September 2010 and I'm extremely grateful but when she was tube fed, I always felt isolated. I know I wasn't the only mother of a tube fed child, through the magic of the Internet, I have met quite a few moms of tube fed children. But it's the little things.
I'll never forget how sad I would feel when we would go out to dinner, order our food and then when the server would ask what we wanted for the little one we'd bust out a can of Pediasure and a tube and watch the expression on his/her face change. It wouldn't end there though. There was always the people who would stare at Maryam and her tummy with her tube sticking out of her belly as they'd walk by to go to the bathroom. Or my personal favorite, the people that would flat out ask, what's wrong with your baby? Ugh, I hated that.
Sadly, the people who are aware of feeding tubes are usually only aware of them because someone close to them has had one. Whether it is an older person holding on to life, a person who is allergic to most foods, babies born with their intestines on the outside of their abdomen, or people with CF who need extra substance to stay alive, odds are you know someone who, at sometime, had or has a feeding tube. Since you're reading my blog you know of Maryam. Maryam started out with an NG (Nasal Gastric) tube because she was on a ventilator for the first 9 weeks of her life. Then when she could drink from a bottle she didn't have the stamina to get enough sustenance. Her little lungs were too weak.
After 8 months of too much vomiting, her respiratory system failing and lack of weight gain we had to make the toughest decision of our lives. We had to choose to permanently altar our daughter's anatomy. She went in for surgery only days after we discovered she was aspirating on her own vomit. She spent 2 more weeks in the hospital. At only 8 months old she had 3 surgeries, 2 hospital stays totaling 154 days and now had a new anatomy.
A feeding tube kept my little baby alive for her first 2 years and 9+ months. And she had her tube in her tummy a whole year longer, just in case. You probably know someone else who has used a feeding tube too. It's important that others are aware they're not alone. There is no reason to feel isolated. Maryam still shows everyone her scars and asks me lots of questions. I've shown her pictures! She thinks it's neat! We all think it's pretty neat that technology kept our little miracle baby around to become the great kid she is now.

There's that word again, "Sometimes" Part 2

Thursday after ballet class we went out to dinner. Brett and I were sitting across the booth from Maryam and Yaya and Jax was at the end of the table in a high chair. Maryam stood up on her knees to reach something and that's when I saw it. Maryam's stoma is leaking. I remember gasping and pointing. I remember Brett asking, what? I remember pointing and saying, Oh my God. She's leaking. That's when the panic set in. I took her into the bathroom to see if she really is leaking, or if she spilled something. I was right, she was leaking.

I emailed her GI team at CHOC. I put a bandage over her hole to see if anymore leaked out during the night. I asked her a ton of questions like, does it hurt? Does it itch? Have you noticed it being wet? I checked it for infection. It wasn't hot, red, no puss and no smell. It was just leaking!

Brett called Dr. Matt at Maryam's old NICU just to get some sort of assurance before going to bed. I called my friend Jen, one of Maryam's NICU nurses and now GREAT friend. Both agreed that it wasn't infected and that it wasn't an emergency but that she should be evaluated.

The next morning after little sleep I got an email from Maryam's GI team at CHOC. Robyn said that it sounds like Maryam's stoma had reopened or hadn't fully healed and was leaking stomach content. She said it will need to be surgically closed. Then she said something like, "It happens sometimes." I asked her to call me so we can talk in detail about what's going to happen and when.
The surgery is only a couple hours long. Its an outpatient deal. Maryam will most likely be intubated because she will be under general anesthesia. The surgeon will go in, take out the tunnel, sew up her stomach and then sew up the outside of her stomach. Instead of Maryam's stoma looking like a second belly button, its going to look like a straight line. And, it will NEVER leak again!
We're going to see if we can get on the surgery calendar for March. We'd rather her not be in the hospital during the winter months. She's very susceptible to infection and illness so we're going to wait until after the flu season is over.
That's our latest! Wish us luck. I'm still trying to figure out how I'm going to tell her she has to have surgery. She already hates doctors, lab coats, hospitals, doctor offices and anything else medically related. I think physically she's going to bounce back quite quickly, its the psychological trauma that is scaring me. My poor baby is going to be so sad.

If you want to read my first post about the "sometimes baby" you can read it here.

Maryam's 2nd Belly Button

We have started calling Maryam's button hole her 2nd belly button. If you click on the picture it gets bigger and you can see why! It actually looks more like a belly button than her real belly button does! I'm still very happy to report that there has been no leaking. And we're still using Mederma on her scars and look how fantastic her tummy one looks. I'm telling you, that stuff is miracle in a tube.
In other Maryam news, I put her on the scale the other day and it said 30.2! That's HUGE! Of course she was wearing jeans, but still! Over 30 pounds is crazy!
In eating news, tonight at dinner Maryam ate 3 bites of salad with Thousand Island dressing on it! Took each bite, chewed them up AND swallowed them! She even said she thought it tasted good...WOW. Then she ordered a really big meatball and ate 3/4 of that as well. She topped it off with vanilla ice cream for dessert. It was a fun dinner. Thank you Old Spaghetti Factory, it was a night to remember!

Arts and crafts to start October

Maryam woke up Saturday morning with her typical, "Can I paint Mommy?" Of course I said yes and we started in on a new project. She wanted to make a pumpkin so I gave her some orange paint and a paper plate and told her to cover it all with the orange paint.
I decided to make hand print spiders with Jax. It was really nice being able to paint his hand without him having a crazy sensory reaction where he started to gag, turn purple and retch! Yay! This normal baby idea is pretty awesome!
Look at him! He's enjoying it!
Here I'm helping Maryam fill in the cracks. She had a hard time getting the paint in the grooves of the plate. She doesn't have a very heavy hand so I had to show her how to do it. She got it though!
Here is pumpkin #1 & #2. She had to make another one because she said the first one wasn't "special, it needed to be scarier." Ugh, honestly, she wasn't happy with pumpkin #2 either, but I tried showing her a scary Jack-O-Latern and this is how she copied it! I think they're both pretty great.
Here are Jax's spider hand prints.
Skip to glitter art. Maryam wanted to make "sparkly" paint. Me, having no idea what she was talking about, decided to go with glitter and glue. She was very happy with this project. She'd tell me what shape to draw and she'd pick the glitter and go crazy. When she started asking for horses, giraffs, cows and goats that I had to disappoint her. Mommy is not an artist.
I am very happy to report that Maryam has been tube free for over 2 weeks and her hole is all closed up! She's had no leaking from her hole at all. She does have what looks like two belly buttons! But I guess that can be corrected later in life with a little cosmetic surgery.

Belly Shot!

Here is a picture of M's last G tube box! Its in the trash! Woohoo!!!!

Here is a picture of Anna Banana and Maryam showing off their bellys! Ha! LOVE it!

"Normal Kid"

Maryam's appointment was at 4pm. We got there early so I could talk to her about the appointment and try to help ease her anxiety. There were a bunch of other kids there for her to run around with. They had a big waiting room with space for the children to run around, read books, climb on stuff and socialize with each other. Maryam enjoyed running around with the other children. When all the other children got called into their appointments Yaya read Peter Pan to her. After the book I explain, AGAIN, that we were here to have her button looked at and to talk about all of her good eating. As soon as our pager went off she started crying. I picked her up and took her over to the Specialty Clinic where she was being seen and she was completely hysterical. All of my prepping seemed to have been for nothing! I managed to calm her down enough to get her height and weight, after which she got to pick a toy out of the toy chest.

Meet "Inch", the worm Maryam picked from the toy chest. She practiced playing "doctor" on Inch for most of the time we waited for Robyn and Dr. Katz. She repeated everything I had told her at home, in the car and in the lobby. She looked at his "button", asked him what he likes to eat for his meals, asked him how he was feeling, listened to him breath and talked to him "how doctors talk to patients." LOVE HER. As soon as Robyn came in, she was hysterical again! Ugh. After I got her to calm down a bit, we were able to talk about all of Maryam's progress. Maryam even lifted her shirt and showed Robyn her button.

Robyn informed me that according to the 3 day food log I sent in last Thursday, Maryam is taking in an average of 1850 calories per day! WOW!!! She told us that Maryam has gained 3 pounds since they first met her, she's up to 29 pounds and she's grown 4 inches and is up to over 37 inches tall. She said that her height to weight percentage is 25% and is well within accepted norms. YAY! Which means, she's not too skinny for her height! HOORAY!

At that point we talked in code about taking Maryam's button out. I explained that Maryam has absolutely no recollection of ever using the tube for feeding, but when you ask to take it out, she says no. I think asking her to take the tube out is as crazy as asking to take one of her fingers! As far as she knows, its very much a part of her! BUT, we did it!

Valerie, the financial coordinator for the team, brought toys in! Distraction...I'm all for it sometimes! She picked a dolly hairstyling kit and started immediately playing with the fake blow dryer. I asked her to lay down and she freaked out AGAIN! Finally we just sort of held her in place for a few seconds and Robyn had it out! She put the pressure bandage on her and I picked her up and all was normal again. She pulled up her shirt once to look at the bandage and then went back to playing with her blow dryer.

At that point I told Robyn I needed a picture of her with Maryam. She called Valerie and Dr. Katz in. It was all so wonderful! Robyn called taking the tube out a type of "graduation"! I couldn't agree more. Maryam was afraid of Dr. Katz, I'm not sure why, he doesn't look intimidating. He didn't even have a lab coat on! He was as sweet as he could be with her. After a few minutes, she gave him a kiss.

Here is part of the team that made our lives what they are today. From left to right, Robyn Robinson, Nurse Practitioner for the feeding team, Dr. Katz, GI Extraordinaire, our miracle baby Maryam and Valerie Fregozo, financial coordinator for the team.

These are probably some of the nicest, most dedicated people I've met in my entire life. Their program changed our lives. They gave us as parents the tools to help Maryam learn to eat, they gave Maryam the knowledge and confidence to eat and they change the lives of every other patient that walks through their doors. When their patients come through their doors, they have a 92% success rate of their feeding tubes coming out. AND, they are going to be doubling the amount of patients going through their program!!!! How wonderful is that? Think of the lives they're going to change!

After Maryam's appointment I took her to Disneyland. The parks closed at 8 last night, so we only had 2 hours to jam in as much as possible. We started at Peter Pan, went to Small World next, then on to The Haunted Mansion (which is already decorated w/Nightmare Before Christmas decorations) then Pooh twice! As we were leaving the park Maryam said, "I'm hungry. I need a hamburger and fries please." I love hearing stuff like that!!!

Oh, funny story! While we were in with Robyn, Maryam looked out of the window and yelled, "Hey Mommy! Look, there's Taco Bell out there!" Ha! We don't have a Taco Bell in this town, so it was super funny that she was so excited about it! I asked her what she'd eat there and she said, "A taco, of course." Of course Maryam. Of course.

Here is Maryam today showing off her belly. We'll be unveiling her new belly shortly. While I've been writing this post, (which I started 4 hours ago) we sat Maryam down and asked her about her bandages. We asked her if she knew why they were there. We asked her if she thought her button was still there. We told her it was gone. We asked her if she knew why we took it out. Her response? With a whole lot of glee, "Because I don't need it anymore!!!!!" Then proceeded to high five both of us. She said she wanted her friend Anna to come watch us take the bandage off. So, Anna is here. If only Mommy could work up the courage to take the bandages off!!!! Ha! Once the bandages are off, I'll snap a photo and post it.

PS. The red boots are the boots from Maryam's Halloween costume. This year she is going as Jessie the Yodeling Cowgirl. She hasn't taken the boots off since they came in the mail. She wears them EVERYWHERE, including her CHOC apt and Disneyland. While getting on Peter Pan last night, the ride operator said, "I love your shoes!" Maryam said, as seriously as possible, "Actually, they're boots. Thanks."

MARYAM EATING PIZZA

Yep, you're looking at Maryam eating pizza! Pepperoni pizza! Holding the pizza in her hand, eating the cheese, sauce, bread and pepperoni all together!!!!

I didn't have to cut it up into tiny pieces. I didn't have to bribe her to eat it! She just picked it up, and started eating it!

I know her face doesn't show how much she enjoyed it, but trust me. Maryam ate EVERY bite! Even the crust.

She has come a VERY LONG way! We owe it all to her feeding team at CHOC and various OT's. They changed our lives in a way that words just can't describe. I use to stay up nights crying, screaming and yelling. I spent hours in front of the computer on the Internet looking for solutions. I'd cry to her OT's. I bought different spoons, forks and bottles. I was desperate. I was depressed. I was angry. I wasn't angry at Maryam! I knew it wasn't her fault! I still know that. I know that the beginning of her life was traumatic. She never got the chance to learn to eat. She never cried for a bottle. She never said the words, "I'm hungry."
Now, after the good people at the CHOC feeding clinic intervened, Maryam is a different person, as am I. I took her inability to eat very personally. I blamed myself for things I had no control over. Logically I knew it wasn't my fault, but I had to blame something and I was my easiest target. Today Maryam doesn't even remember her feeding tube! She has no recollection of us ever attaching it to the button in her belly. As far as she knows, she's always been an eater. Now she will tell me she's hungry as a stall tactic for going to bed! She'd rather EAT than go to sleep! Every time she eats something, a tiny little miracle happens. I cannot be more proud of Maryam. I'm extremely lucky to know such a strong little girl. I'm even luckier to be her mommy.

Maryam has an appointment on Monday with her GI doc and the nurse practitioner from the CHOC feeding team. I'll blog about how it goes.

Good News!!!

So, it appears that we may be able to "dodge" surgery after all! Hooray! The surgeon we saw today was really nice and very understanding. Maryam LOVED him. She took to him in a way I haven't seen in 6 months or more. She wanted to shake his hand, she touched his knees, she let him play with her abdomen and her button. She completely trusted him. I should have had him try feeding her! ;)
He said that the button is close to the rib, and yes its uncomfortable and may even be hitting a nerve that runs along the rib bone. But he also said that since its mostly positional that we may be able to make adjustments that will help, leaving surgery as a last option. He ordered an upper GI dye test to make sure that the fundo hasn't popped or there aren't any leaks in her tummy anywhere. He wants us to put extra padding in her bed, since she likes sleeping on her tummy and try binding the button down with gauze or bandages so it can't move. He wants us to keep a pain diary. Note what foods she swallows because new foods may be upsetting her tummy. He wants us to note when she's guarding more, like just after getting off of furniture or waking up. He wants us to note when she wakes up in pain and how long it takes her to get back to sleep. Then, after we've done all that, he wants to see her again in 3 weeks. He'll go over the results of the dye test and we'll go over the diary and changes we've made. At that point we'll decide together if we still want to go ahead with the surgery.
Once he described what the surgery would involve both Brett and I started asking a million questions about alternatives. The surgery is way more invasive than either of us thought, and neither of us can figure out why we thought this time around would be so different. He said that her hospital stay would be a minimum of 3 days and probably closer to a week. He said he'd try doing it laproscopic but with the amount of scar tissue that is inside, he would probably have to open her up again. And he said he'd have to work through all of the scar tissue, probably have to detach the liver from the stomach which typically grows together by scar tissue after the fundoplication, then stretch the stomach, create the new hole then sew up the last one. He said he'd only be moving the button about a half of an inch. When I heard all of that I got really bummed. I don't know why I thought it would be less invasive, probably because this time around there wouldn't be a fundoplication? I don't know.
But anyway, we're hopeful that the new plan will help. We want to do everything in our power to avoid our daughter's fourth surgery. Thank you everyone for sending out "good juju", happy thoughts and prayers! We definitely draw off of it all.

Medical Update......(Insert sigh here)

Monday we took Maryam to San Diego for her monthly Synagis shot. She has to have the shot every 28 days to help prevent her from contracting RSV. We got her bundled up and started walking into the building. As soon as the doors closed behind us she started crying. It was so sad. Apparently she remembers the building now! Last month she started crying as soon as she saw the RN, now it just takes walking into the building. She lost another pound. We have to stop her from losing more weight. If she loses 10% of her weight or more she'll be considered Failure to Thrive again.
Tuesday we had to take Maryam to Riverside for two appointments. The first was with Audiology for a hearing exam at 2:00. The point was to check to see if all those ear infections have caused any hearing loss. We got in around 2:15 and Maryam was not happy. There were two tests that they had to do where they stuck something in Maryam's ears and she cried the whole time. She's so leery of doctors and nurses these days that as soon as she sees them she starts crying. After that torture session, she and I went into the sound booth to test Maryam's hearing. A series of sounds were put into the box and Maryam responded by looking in the direction that the noise came from. She was rewarded by seeing a cute stuffed up animal playing an instrument.
After that appointment we had an appointment with an Ears Nose Throat Doctor. This appointment was supposed to be at 3:15. We didn't get in to see him until around 4:20. The worst part was that Maryam didn't have a nap. She was exhausted and practically begging to go to sleep. I tried distracting her with flash cards, books and music, but she could only deal for so long before starting to get worked up. I took her on walks around the building and had her look out the windows. But when we'd come back to the waiting room, she'd get all worked up again.
When we finally did get in to see the doctor Maryam was anxious as soon as she saw his lab coat, she has severe "white coat syndrome". She gets anxious and nervous and scared....I'm convinced she thinks everyone in nurse scrubs or lab coats is going to hurt her. The ENT was really nice and had a very calming way with Maryam. He explained everything he was going to do and told her that it would hurt or cause any "booboos or owies". He learned our language really fast. She let him examine her with no problems.
He explained that Maryam has some minor hearing loss and that it could be due to her ear infections. He couldn't tell us which ear because she's too young for that test. He told us that he could put tubes in her ears and that they may help, that in fact they help 90% of all children who get them. He said that there are a few exceptions and that she may be one of them. Some of the exceptions are children with severe allergies due to changes in the weather that cause a constant runny nose. And premature children who's ear canals didn't mature properly. He gave us the option of waiting 6 weeks to see if she gets anymore ear infections. He explained that with her respiratory history that he would perform the procedure at a different hospital. He would want to do it at a hospital with a pediatric Intensive Care Unit that could support a child on a ventilator "just in case". He said that normally the procedure is about 10 minutes, 5 minutes on each ear and the child is ready to go home about an hour after its finished. He also explained that there is an anesthesia mask and no IV. But then he continued to say that in her case, the anesthesiologist will probably start an IV "just in case" and have an intubation tray ready "just in case". So, what's supposed to be a "simple 10 minute procedure" is quickly turning into a nightmare! Of course we decided to wait 6 weeks to see if Maryam gets anymore ear infections, DUH!
Wednesday we had a less than stellar feeding session at OT. Maryam's therapist just got back from maternity leave, so Maryam had to warm up to her again. And there was a miscommunication over appointment times and days, so nothing went as planned. It was great seeing Dawn again though, Maryam and I both really like her.
When we got home from OT I sent off an email to Maryam's GI doctor explaining that she's still in pain. (He wanted me to call him in 2 weeks if she was still experiencing pain, I emailed him instead.) I told him that the pain still comes and goes and appears to be positional. I got a call back later explaining that the pain just isn't going to go away without surgery. He put in a referral to a pediatric surgeon explaining that the button needs to be re-placed because of the pain level. The nurse called me back and told me that the surgeon is on vacation until next Thursday. Sweet. So, in the mean time, I have to figure out how to stop the pain. This morning she was so guarded that I had to take her out of the high chair to connect her tube because she wouldn't pull her arm off. She was protecting herself! How sad is that?
When we do finally go to the surgical consult, I'm going to ask if they can do the tubes at the same time. At least that way it takes all the "just in cases" out of the equation.
And to top it all off, Maryam started coughing again yesterday. Its weird though, she only coughs when she's sleeping. I'm wondering if I should take her in to see what's going on. I would just hate to make her go to another doctor appointment this week.
I apologize for taking so very long to update the blog, I just haven't' felt up to it. I do have some happy news to share, but Maryam just woke up from her nap. I'll try to update again tonight.
Please keep her in your prayers, not that I have to ask, I know you all do already. Thank you.

Happy 2009 Everyone!!!!

Now that the Rose Bowl game is over I can rest assured that our New Year's Day is going to end pleasantly!

We had Maryam dressed in a USC jersey (Thanks Trip), jean skirt (Thanks Leanne), white tights (Thanks Brande), white leggings (Thanks Marcy) and sparkly Chuck Taylor All Star shoes (Thanks Christi).  Unfortunately Maryam slipped in the bathtub reaching for a crayon and Brett dropped the camera trying to help me catch her.  Sooooo, I think Brett broke our camera.  This would be the second camera he has broken in about 6 months.  Note to self, don't buy an expensive camera....note to everyone else, stop lending us your cameras...odds against getting it back are slim to none.  I did manage to get some OK photos on my BB, I'll try to upload them later.  They're not the best quality, but you'll get to see just how cute and girly she looked, even dressed for football!

In good news, Maryam hasn't complained about her Mic-Key button hurting her in about 5 days!  How awesome is that?  HOORAY!  I have to call Dr. Henar on Wednesday and update him, I'd love to be able to tell him that she hasn't complained about it anymore and that we can take surgery off of the table!  Say your prayers everyone!!!!!

News

Daddy and Maryam...all bundled up to go outside.

Maryam eating her breakfast....note the the tray is empty of any and all Cheetos!! Hooray! She ate 12 at Breakfast today!

So, now for the news that I've been dreading writing about. You probably read the blog entry on Wednesday about having to take Maryam to see her GI doc. He wanted to examine her to help us figure out why her Mic-Key button was causing her so much pain. As soon as he touched it he figured out what the problem was and it turns out the only solution is another surgery. Apparently the way her torso grew it caused her Mic-Key button track to hit a rib on the inside of her stomach cavity. He said its very painful and compared it to being "constantly kicked in the shin". He also said that this is "bad news". He said he's seen this before and the only solution is to make a new hole and track lower in the stomach.
This is awful. This surgery is going to set her back so much....months if not years. She's come so far with her oral aversion and sensory issues, having another surgery is the last thing she needs. As he said it all I could think of was every worst case scenario out there.....riding the vent, staph infections, physiological damage, and taking HUGE steps backward in her oral progress. He is right, its definitely BAD NEWS.
I didn't want to bum anyone out by writing it on the blog before Christmas. Its all so emotionally draining. How much does Maryam have to go through? How much do Brett and I have to go through as parents? I know it can be worse, trust me, no one knows that as much as we do, but that doesn't make any of this any easier. Just try to keep her in your prayers. Thanks. And I'm REALLY sorry if I bummed anyone out. I'm having a hard time staying positive right now.

Ulcer? Really?

So, on Friday morning I called Maryam's GI doc to find out if we could bring her in for examination. Her button was hurting her even more than it had been. His day was already over booked so he couldn't see her. But he was very concerned that Maryam was in pain so he suggested that we take her in to see her pediatrician. His plan was to have the pediatrician examine her and call him. When we got to Dr. Mohan's office she wanted us to take the button out to see how it looked. This process is USUALLY nothing, Maryam doesn't pay attention, it takes only a few seconds to deflate the balloon and pop the button out. However Friday, the minute I put the syringe in the valve to deflate the balloon, Maryam started bawling. She was trying to defend her tummy, she cried and she tried to squirm out of my arms. She was VERY upset. Dr. Mohan was shocked by this and noted that Maryam has never reacted this way to her button. While the button was out we fiddled with her stoma and that caused her to cry even more. We were trying to figure out where the source of the pain was coming from.
We put the button back in and Dr. Mohan went to call Maryam's pediatric GI doc. When she came back she told us that they recommend that we head to the ER. That they want to "rule out anything surgical". I kid you not, just by hearing those 4 words my head started to spin. The last thing Maryam needs is another freakin' surgery! Well Brett and I wanted to avoid having to take her to the ER so we were brainstorming to see if there was anything else we could do.
We took the button out again so Dr. Mohan could culture it for infection and again Maryam started bawling. I asked her if this was your kid, what would you do? And she said she'd take her to the ER. So, off to the ER we went. I get why they wanted us to go, it just sucked, ya know?
We got to the ER over an hour later and we were seen right away. They did some blood work to rule out an abscess or any other infection. That was not pleasant. Maryam screamed as soon as she saw the syringes.....great, she's learned. She had a few x-rays of her tummy to see if maybe the button was placed wrong, or see if they could see anything on the inside near the button.
The ER doc called up to Maryam's GI doc after all the tests were done and they determined that Maryam has an ulcer in her stomach near where the Mic-key button goes in. She was prescribed a medication to take 3 times/day for over 30 days. It has to be taken at least 1 hour before eating or 2 to 3 hours after eating.
She's not better yet. Her retching is out of control. She woke herself up from her nap yesterday with all of her retching. She's still very sensitive and defensive of her button. She touches it and points at it and says "booboo owie". I haven't noticed that weird smell coming out of her tummy, which is good, but we did see dried up blood Saturday night when we took her clothes off to give her a bath.
Hopefully this medication does the trick. G-tubes suck.

Playing catch-up, photos to follow later

Happy Belated Easter everyone! Sunday was a wonderful day. We spent the day with some family, participated in a grown-up Easter Egg hunt and watched Maryam take everything out of her basket. We had Maryam in a real pretty dress that her Auntie Brande sent to her a while back.
Monday we had to head to San Diego for her (cross your fingers and knock on wood) last Synagis shot for the season. Brett actually took her to the appointment while I went shopping with my friend Jennifer for the supplies to make Maryam's baptism gown. The base of the material was taken from the shaw of my wedding dress, I'm so excited about it!!!
Tuesday Sarah and I took Charlie and Maryam to the zoo. We had SO much fun! Maryam in all of her monkey madness has been saying "oh oh oh" ever since. When we got home from the zoo I was feeding Maryam, I sat her down so I could go to the bathroom when Charlie Mae decided she wanted to play with Maryam's syringe and pulled on it. The button got pulled out of Maryam's tummy. The good news is, the balloon wasn't fully inflated so Maryam barely cried. The curious part is why wasn't the balloon fully inflated? Strange.
Today Maryam had a Barium Swallow in Riverside. A Speech therapist administered the barium in hopes that her "expertise" would help with Maryam's refusal to let anyone put anything in her mouth. Well, it took about 45 mls of barium to get 2 good swallows. She ended up using a 60 ml needle tip syringe and put it near the back of her throat on the side of her tongue and it sort of forced Maryam to swallow. Of course the rest of it stained her shirt. The good news is there is "nothing physically wrong with the way she swallows." Maryam isn't aspirating. (inhaling fluid) Hooray!!!
We've been in Elsinore at Sarah and Scott's house since Sunday, we'll probably go home tomorrow night. I'll be able to post photos once I'm back on our computer.

Inhalers and buttons

I forgot to mention that Maryam pulled her Mic-Key button out Thursday morning. It was during a feeding, she just grabbed it and yanked it REALLY hard. The button came out with the balloon fully inflated and in tact. She bled a little bit, and cried a lot. But she was fine after about a minute or so. I guess I had better train the grandparents on how to put a new button in just in case she's in their care next time it happens.
Maryam also decided that she hates her inhaler. I have to pretty much wait until she's asleep to give her the steroid treatment, because if she's awake she fights it off with tears, kicking and screaming. Its not pleasant for either of us. I don't get it though, why all of a sudden? So strange! I even started letting her play with it, in hopes that she'll find it less scary if she can handle it on her own terms, but nope as soon as it goes to her face she gets upset again.
She is getting better at crawling around! She pivots on her tummy 360 degrees in both directions trying to get to which toy she wants. She'll travel about 6 or 8 inches trying to go after a toy or the dog or Mommy. But once she gets to the desired object, dog or person, she roles back on to her back where she's more comfortable. She is definitely getting stronger, but she's still very weak in her shoulders and has a hard time holding herself up for long periods of time. The good thing is she's feeling more comfortable on her tummy and is able to lay on her tummy and play for short periods of time.

I'm posting now because Maryam decided to have a party in her co-sleeper at 2AM and its still going on. I'm not going to be home today so I figured now is as good a time as any!

Button problems

Over the weekend Mommy pulled Maryam's Mic-key button out again....oops. But the old one wouldn't fully inflate. So, we went ahead and replaced the old button with the new button. But we've been having problems with the skin around the button. Stomach fluid is leaking out of the hole in her tummy. And of course, stomach fluid is full of acid and it is bothering the area around her hole. And, we have new granulation tissue growing, which we haven't had in months, and its a bright red. It looks almost like a blood blister. Last week and last night we had blood coming out of the hole too. So, something is definitely going on there. We have an apt. tomorrow to have it looked at. Hopefully all is well.
She's been retching all morning. I can't figure out why. I'm starting to think it might have something to do with the button somehow. Because the only thing that has changed is the button. She wasn't retching before we replaced it. I thought the retching might have something to do with how sick she was feeling, but her doc said an ear infection wouldn't cause vomiting. So, who knows. Let's just say, OT will be fun today....hopefully she'll stop retching long enough to get food in her mouth!

Tummy Button drama!

Mommy made a boo-boo today. Maryam fell asleep in my arms. I waited until she was sleeping soundly when I went to put her in the co-sleeper. She had just finished a feeding, so she still had her feeding tube in, attached to her 60 mls syringe. Everything was normal. BUT, when I went to put her in the bed, her tube some how became attached to me. Consequently, when I laid her down her Mic-Key button yanked out. The button was still fully inflated, so she woke up screaming, because it hurt her. The hole it came out of is less than half the size of the fully inflated balloon that is used to keep it in. Thankfully my husband and I both reacted calmly and quickly. I went and found our extra button, Brett wiped up her tummy, then he deflated the balloon. We cleaned her up, inserted the button, refilled it and sucked food in and out of her tube.
I called her neonatologist, Dr. Sebald and told him what happened. I explained that she wasn't in any pain, she didn't have any sensitivity around her g-tube spot, we were able to get food in and out of the tube, and she was already active and calm. He jokingly asked why I was calling then! And I said to find out if we need to have her be seen. He replied that he didn't think it was unreasonable for her to be seen by the pediatrician on Monday. And then warned us of the symptoms that would require us going to the ER.
All is well so far! Just a little stressful for Mommy and Daddy, but honestly, we had her as good as new in as little as 5 minutes! Hooray for us! So, to all your mommies of babies with g-tubes, make sure you always have a few extra buttons on you. We keep one in the car and one in the house.....like Amex, don't leave home without it.