Pulmonary

Maryam had a pulmonary appointment Tuesday. Her doctor ordered a new prescription for Maryam's runny nose. She wakes up everyday with dried snot on her upper lip and nose. It's awful. She comes home from school with the same dried up snot. Her doctor said that if its everyday, all year, it's definitely an allergy. She recommends a hot bath everyday to help get the irritant out of her nose. Immediately following the bath she'll get a new prescription nasal spray. So far, the nasal spray has been very successful! Less runny nose all week and no gagging during or after the spray. Yay!
The doc also reminded me that yes Maryam has outgrown most of her major pulmonary issues but she'll always be more susceptible to pneumonia and bronchitis. She told me not to ever expect a winter where Maryam doesn't get sick.
She also helped me out with the steroid issue. She told me to go ahead and start steroids after only 24 hours of distress. Before we had to wait 48 hours. It was awful knowing that just one dose of steroids would make her feel better and help her breathe but the doctor's order was to wait 48 hours.
It was a good appointment!
The photos are from earlier that day when the kiddos were waiting for Yaya to get out of her doc appointment. There were pine trees everywhere so they decided to collect all, yes ALL, of the pine cones. They had fun! The power of distraction works like a charm. ;)

Another Jax Update

So, the urologist isn't sure the pain Jax is experiencing is his kidney.  He said that its quite difficult comparing an ultrasound to a CT scan. He said that it would be much better to compare apples to apples.  We have another appointment April 23rd for an ultrasound and follow up appointment with Dr. Alagiri.  He did say that its unusual after 2 years for a new blockage to occur.  However, he did say that the area of pain that Jax keeps pointing to is exact.  He also said that if Jax continues to experience pain he'll order the renal scan just to be 100% certain. 
He asked us about Jax's pain.  He asked us if Jax was in pain before the kidney surgery and we both answered with an emphatic yes!  Everyone who knew him before the surgery knows that Jax came out of surgery a completely different baby from when he went in.  It was nuts.  You know that saying, like night and day? That was Jax.  He went from crying and screaming all the time to being a normal baby who only cried when he was tired, hungry or needed a diaper change. 
Jax has only complained about pain once since the appointment and that was this morning.  He didn't double over and cry like the last time he had the pain.  But he was pointing to the exact same place and wanted me to hold him as he worked through it.  Its pretty heart breaking.  :(

Jax update

I called Jax's pediatrician and urologist Monday morning. We scheduled an appointment with the pediatrician at 3:00 pm Monday. I left a message for the urologist. Around noon or so the urologist's office called to schedule an appointment for Jax. His appointment is for tomorrow (Wednesday) at 11:30 in San Diego.
I took Jax to his pediatrician where he went over the test results from the ER visit. He looked back at Jax's last ultrasound from urology in June 2011. The report from June said the hydronephrosis was mild to moderate with a slight increase. The report from the ER Saturday said moderate to severe. Damn. The pediatrician agreed that the pain is most likely the kidney.
He did give me some further input. He said that the radiologist from the ER might have a different opinion of what moderate to severe is from the urologist's opinion. But he did say there are general guidelines that they all follow. He also said that if the urologist might order more tests to be done. A VCUG or ultrasound, both of which Jax done before. The VCUG is a nuclear scan. :( He also said surgery could be in our future if the urologist agrees with the radiologists findings. He said IF he disagrees, which he's fairly certain he won't, then I have to bring him back in to try to figure out what the pain is. Great. So, now I'm not sure if I'm rooting for it to be the kidney or some unknown source of pain.
The past 4 days have been crappy. I've been reliving every time I remember Jax saying his belly hurt. I remembered that on Friday he complained that his back hurt. I just thought it was his diaper scratching him or something. I couldn't find anything and told him to run along. He ran along alright but his left hand stayed over the left side of his back where his scar from his last kidney surgeries are. Bad mommy.
I also keep thinking about my stupid new year resolution. Trying to be super positive I resolved to no hospital stays or surgeries in the year 2012. It just made sense! The only surgery free year we've had since 2006 was 2008! Thats a pretty crappy statistic.
The weird thing I don't usually let this stuff get to me. Strangely this has gotten me down. It's my own fault. I finally, after 5+ years got comfortable. Silly me. I thought we were out of the woods. Silly me. I'm going to try to keep my chin up, slap a smile on my face and hope for the best. Right now "the best" would be no surgery but a definite diagnosis of what is causing the pain.
Wish us luck! (she says with a big giant grin on her face)

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 and Pluto

Maryam met Pluto today!!! She was so happy and he was so sweet with her.
Maryam had a pulmonary appointment today at Loma Linda with a new pulmonologist. It went really, really well! The doctor called Maryam "amazing". I'm not going to lie, I LOVED hearing that. She is pretty rad.
This new doc knows Maryam's old doc, which was really nice. She had wonderful things to say about him and ended our appointment by saying she promised to take as good care of Maryam as he did. Awww.
She changed one prescription dose and kept everything else the same. She said the same thing as Dr. W that BPD/CLD is treated like asthma. Everything will stay the same and she'll either grow out of the BPD/CLD or it will be diagnosed as Asthma. I guess it doesn't matter since the treatment is the same.
I'll put pictures up from last weekend when I feel better. I've been battling a cold since Saturday morning.

"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."

Good News....for a change! Ha!

Here is Maryam before the upper GI. She was playing in the waiting room with the stickers the receptionist gave her.

Here is Maryam after. She cried for hours. It was awful. She still hasn't stopped having diarrhea. I have an email into her doctor to see if its from the upper GI, which has never happened before, or if maybe she has a stomach flu.

We thought it would be fun to put one of the pictures from the upper GI on here. CRAZY! If you enlarge it, you can see her button actually going into her stomach.

The good news is that everything looks normal! Woohoo! The fundo hasn't loosened at all, no leaking and NO REFLUX! How RAD is that?

Now the EVEN BETTER NEWS! Our case worker from CHOC called today and told us that they managed to squeeze Maryam into an appointment on Tuesday!!!! So she gets to be seen next week instead of having to wait until the end of March or beginning of April! HOORAY!!!!!!! I'm so happy that I can hardly contain myself. Monday we have to go to San Diego for her Synagis shot (RSV shot) and then we'll be in OC on Tuesday. Hooray!!!

Maryam Rockin' Out

Maryam's expression when she plays the drums cracks me up! She looks so angry.

Here she is doing her best drummer rocker pose. So cute!

Here she is playing the tiles and hen sucking on her sticks. Such a strange little baby, but we love her!!!! Again though, check out her expression while she's hitting the tiles!

Tomorrow we have to be in Fontana by 9am for Maryam's Upper GI. After that, we'll go to the records office to get her Fontana records. After that, we'll be heading to Riverside to pick up her Riverside records. Then, FINALLY we head to La Quinta for her occupational therapy appointment. What a long day!
Wish us luck!!!

What a day!

These pictures are from when we got home. Maryam had been in the car since 7:30am, having only got out for a quick trip to Target for diapers and then into the doctor's office. We thought it would be good for her, despite the cold, to get outside and run, run, run!!!

Now for the news.... We took Maryam to the appointment at Children's Hospital of Orange County today. We met with a Gastroenterologist Dr. Katz (we thought that was hysterical by the way, I totally use to LOVE that show) and we went over Maryam's medical history. He told us that he thinks she is a good candidate to meet with the feeding team. The feeding team decides whether or not Maryam qualifies for the 3 week inpatient intensive feeding program. Dr. Katz told us that their program has been around for 4 or 5 years and during that time they have only had 28 patients go through the program. IF Maryam is selected, she'll be one of the lucky few. If she is not selected for the feeding program, at the very least she'll have been assessed by professionals who will still be able to help her. They are going to evaluate Maryam as she eats and see what she's doing or not doing that they can help her work on. Once they see that, they should be able to offer up advice and suggestions that can help us better her progress towards eating like a normal toddler. IF she does get selected we would check in on a Monday and stay for 19 days, checking out on a Friday. Dr. Katz said that we have to stay in the first weekend, but on the second weekend we would get a day pass.
Dr. Katz asked what he called "the stupidest question of the day". "Why are you here?" I don't think that is a stupid question at all! I think many families come to him for help and they may all have different reasons. But I think the root of his question stemmed from wanting to make sure that we, as parents, don't have any unrealistic expectations of what this program can do. I answered him as honestly as I could. I told him that my goal is to ensure that Maryam doesn't start pre-school with a Mic-Key button in her stomach and I view the program as a wonderful jump start in that direction. He said that my goal is not unrealistic and he was happy that I viewed the clinic as a jump start as opposed to a cure all.
During the office visit today he prescribed a medication to Maryam that should help her get hungry. Its actually an antihistamine that has a side affect that causes hunger, who knew? He said that this may help induce hunger to the point that she'll want to swallow the food to help get rid of the hunger. Also he said that we should bring her calories back up so she can gain weight. He informed us that IF she gets into the program that she'll probably drop a few pounds right away, so we need to make sure she's a good weight before we start.
Before the next appointment she has to have an upper GI, which we have scheduled for Friday through Kaiser. He said he would just take their report. And she has to have a pulmonary assessment. He wants to make sure that she is healthy respiratory wise so that any weight loss won't affect her breathing. Part of the reason that Maryam is on such a high calorie formula is so that she could grow bigger because the bigger she is, the more mass her lungs have, the more mass her lungs have the scar tissue from her Chronic Lung Disease becomes smaller.
After we met with Dr. Katz we got to meet with Robin the Nurse Practitioner in charge of the feeding clinic and her assistant Valerie. It was a pleasure meeting them both! Its always nice being able to put a face to a voice. Unfortunately Valerie had to tell us that the soonest we can get in for the team meeting will be March or April. BUMMER!
But right before Valerie gave us that news, she brought in a cute little doggy to visit Maryam! It was a 10 year old black and white cockepoo (cocker spaniel and poodle..I think?) that came in and won all of our hearts. The volunteers escorting Tucker gave Maryam a baseball card like picture of Tucker to take home with her. She LOVES dogs, so this was a very special treat for her. Everyone we met at CHOC was amazing. It was a sobering experience to see all the other children there with GI problems.
So, now we wait. We're going to take Dr. Katz' advice and give Maryam the antihistamine as prescribed, go back to doing brushing and joint compressions before every meal and increase her formula back to the 960 mls/day that she was on back in October. We should be hearing from Valerie this week or the next for a specific date for our meeting with the team. In the meantime, Maryam has PT tomorrow, an upper GI on Friday and then OT after that. Another busy week for our little one!

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.

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.

SUPER GREAT NEWS!!!!!!

I got a call from Kaiser today and found out that the referral to go to Children's Hospital of Orange County Feeding Clinic was APPROVED!!!!!! Hooray! Maryam will go for an evaluation in January. After that we meet with the team which consists of 10 different specialists where we come up with a plan and goals for Maryam. If all goes well Maryam will be in a three week inpatient intensive feeding clinic by February!
Everyone wish us luck and say lots of prayers!
Words just can't describe how happy I am. Only Brett knows how many nights I've spent on the Internet in tears looking for answers. Having a baby that doesn't eat is frustrating, scary, sad, and a blessing. I've learned much from these experiences, patience and tolerance being two of the major virtues I now hold close to my heart. But I would do anything, short of breaking the law, to get Maryam to eat like a normal toddler. And now it looks like that might finally happen. At the very least we're taking a huge step in the right direction.
Thanks again for all of your support. Brett and I may be her parents, but most of our family and many of our friends are helping us raise her in some way or another. Its true what they say about it taking a village....ours is just virtual through this blog! Thanks again everyone.

Preemie Follow-Up and The Zoo

Maryam had a preemie follow-up appointment today.....and we have nothing but GOOD news! Hooray! First we were seen by the High Risk Clinic Occupational Therapist. She had Maryam color with a crayon, play with the shape sorter, sit in a chair at a table, go up and down stairs, run, walk, put blocks in a tray and stack blocks. Maryam did everything that she was supposed to do! She tested at 18 months and managed to accomplish every task! I know what you're thinking, Maryam is nearly 22.5 months old....and 19 months adjusted and you're right! BUT, this is the smallest gap Maryam has ever had between where she tests developmentally and where she is in both adjusted and chronological age. w00t!
After she saw the OT, Dr. Bromberger (The Saint) came to have a look. Maryam is in the 85% for weight and 55% for height for her ACTUAL age! Hooray! That means no more adjusting for her prematurity for her physical size! Hooray again! We'll be down to only one growth chart! I'm so excited and this is just the beginning!
After that WONDERFUL news we got the next bit. Dr. Bromberger no longer sees any signs or symptoms of CP! Once Maryam started walking and running, her gross motor skills were virtually caught up to her adjusted age. The fact that she can walk and run unassisted pushed her over the last hurdle we were facing that may have given cause for a CP diagnosis. Maryam still has low muscle tone in her hips and shoulders, but according to Dr. Bromberger a few excercises can help with that. Which brings me to our next great news..... Maryam will only have to go to PT once a month for monitoring! No more once or twice a week, just once a month. Woo-Hoo!
On to her feeding issues. Because of Maryam's "exponential weight gain in the past year" we're going to try to cut back on one of her bolis feeds to see if it doesn't get her to eat more. I was telling Dr. Bromberger about Maryam's "Happy Hour" (the hour before Maryam is due for her next bolis feed) and she thought that by giving her less formula at lunch, she might eat more at dinner. I TOTALLY agree. Maryam does her best eating at dinner. She's not doing enough swallowing to actually cut an entire bolis out, but we're going to bring it down from 10 ozs to 6. Then if it works and she starts eating more solid foods, then we can lower it to 4 ozs. Wish us luck.
Now for the SUPER FANTASTIC feeding news...yep, there's more! Dr. Bromberger is going to write a referral for the Intensive Feeding Clinic at CHOC! Hooray! That was one of the feeding programs I've been researching to find out if SoCal Kaiser would cover it. According to the doctor, she knows that she has sent one patient there and Kaiser covered it AND it was very successful. The great part is its only one week and its in-patient so we wouldn't have to worry about hotel costs. Not that we'd have to worry too much, we have friends and family with more than enough room and would be more than willing to let us stay if it helped Maryam learn to eat! The other option is in VA. Which is the first clinic I found out about and have read nothing but awesome results about. The doctor said that she has had 4 or 5 patients go there that Kaiser has covered and had WONDERFUL success. That program is 2 weeks long and is out-patient. In that case, we'd have to pay to get all the way to VA and then find a place to stay. Assuming its near one of Brett's relatives we'd be fine, if it weren't we'd have to have a car wash to raise money for hotel costs. (J/K about the car wash thing)
Anyway, Dr. Bromberger thinks that Maryam is finally ready for intensive therapy AND said she knows how to write the kind of letter to make sure it gets approved by Kaiser. w00t! I almost cried as the words came out of her mouth. IF we can get Maryam into a clinic and eating orally....I can't even begin to explain how much our lives would change. I get all teary just trying to type the words....so I shall move on...you all get what I'm saying.
Winter Quarantine, the dreaded lock-down, we got some more information on what Maryam's limitations are. Maryam can go out into the open air (Zoo, Sea World, Disneyland IF its not crowded....um, when does that happen?), which we found out on Saturday, but she elaborated on other things she can do. If we need to take her with us to the store, we can! Hooray! Last year we wouldn't have dreamed of it. But the doctor said that if we wipe the shopping cart down, or use a cart cover or better yet, keep Maryam in her own stroller that we can limit her exposure to germs. We knew that part, but its nice to hear that we're actually "allowed" to! By the end of March Maryam will be "allowed" to play with school aged children again, assuming she doesn't get pneumonia or RSV during the winter. IF she does get sick, we might have to wait until April. But assuming all goes well, Dr. Bromberger thinks it would be a good idea to enroll Maryam in a pre-school or toddler school environment a few days a week for a half a day. This will help her with her social skills (which she doesn't really need help with according to Dr. Bromberger) and her language development.
On to language, Maryam is going to need to start Speech Therapy when she turns 2 years old. We saw this coming her whole life. We've always been told that babies who have a hard time eating, have a hard time articulating....SURPRISE! We use the same muscles to speak as we do to eat.
We talked about Maryam's oxygen and how she just started walking after we disconnected her from her "leash." I told her about how Maryam required oxygen at higher altitudes and she wasn't at all surprised. We all agreed it would be best to keep the oxygen in the house through the winter in case she does get pneumonia or RSV. If she were to get either of those she would require oxygen FOR SURE. But she did say her lungs sound crystal clear! HOORAY!
So, that's all of my wonderful news!!!! HOORAY!

BEFORE Maryam's appointment today, Brett and I thought it would be fun to take Maryam to the zoo to see real monkeys. We weren't wrong, she went bananas! She thought the monkeys, apes, gorillas and orangutans were hysterical. By the time we left the zoo she was doing her impression of monkeys. She even tried to jump! It was pretty funny. The slide show above is of Maryam at the zoo. Most of the pictures...maybe 22 of them are pictures that Brett took of Maryam eating his ice cream cone. She didn't want mine for some reason....good baby!

One more thing to add, sorry that this post is so long, but I had a lot of things to say! I originally started this blog in July 2007 when we found out that Maryam was going to have yet another surgery. I started it a few days before she had the fundoplication and G-tube placement. I did it for our family and friends to be able to hear about her progress without me having to sit down at the computer and respond to upwards of 20 emails or call 15 people with test results or updates. Since then, more reasons for updating her blog have emerged. One reason in particular was completely and totally unexpected....other preemie parents. In the past year I've received over a half a dozen emails and countless blog comments from total strangers all thanking me for Maryam's Blog. I'm grateful to have been given the opportunity to raise such a wonderful little girl, and part of me feels like I have angels helping me. Its nice to know that other preemie parents are finding Maryam's journey helpful to them. And that in some way this blog can be a little angel on their shoulder helping them through their ups and downs.
So AGAIN, thank you to all of our readers, old ones and new ones. Your prayers and well wishes aren't going unheard. They've gotten Maryam this far and they're helping other little preemie babies now too.

Catching up!

On Friday afternoon Maryam decided that, "anything Anno can do, I can do too" and picked up her sit-n-spin to walk through the living room and sadly took a header. Everyday Anno (that's what Maryam calls Anna) goes into Maryam's room and brings her sit-n-spin out to play on. Well Anna has no problem carrying it around and moving from one end of the house to the other, but Anna is bigger and stronger than Maryam. Apparently Maryam doesn't know that, because on Friday after Anna left Maryam tried doing what she had seen Anna doing the past few days, lost her balance and fell with her head first right on to the top of the toy. Maryam ended up with a cut on the corner of her eye and a bruise down the side of her cheek. She's all fine now though.

The rest of these are just cute pictures of Maryam. The above photo I thought was a bit crazy because it was the first time I saw my resemblance in her. Well, not my resemblance now, but how I looked as a child. I look at the above picture and I don't see my baby, I see a little girl. It makes me both happy and sad. Happy because she's growing! Sad because she's growing! LOL, wow, being a mom has made me all mushy.

We went to San Diego yesterday evening to see Maryam's pediatric pulmonologist. We LOVE him, however yesterday Maryam did not. As soon as he walked in Maryam got nervous and scared. It was strange. She's seen many doctors in her life and this was the most nervous and scared I've ever seen her and he wasn't even wearing a white coat.

He was happy to see that Maryam is off of the O2 during the day and is anxious to try to get her off at night. He prescribed an antihistamine to see if that will help her with her restless sleep, the darkness under her eyes, and the dried up snot on her nose every time she wakes from sleep. He wants us to give her the new med at night with her last feeding and spot check her at least twice during the night to be sure she's sating above 90%. He says she should sat between 90%-92% and he thinks she can do that on room air. after 7-10 days he wants an email letting him know if she passed or not. Hooray! How rad would that be? So tonight we start a new test! This is a test I'm VERY happy about!

He also confirmed that she qualifies for the synagis shot again this year! I'm so glad of this. He said she meets all the standards: under 2 when RSV season starts and was receiving pulmonary therapy within 6 months of the season starting. So, basically if she had been taken off the O2 before May 1 she wouldn't qualify, but because it was in July she does! w00t!

Only other news to report is that Maryam is talking WAY more than she was. She tries to say everything that we say. Its really cute. Of course hardly any of the words come out sounding right the first couple of times, but she's getting there!

Checking out the terrain

Mr. Bishop in our amazingly landscaped backyard. Don't be jealous y'all!

Here is Maryam checking out the backyard. She NEVER wants to go outside to play, probably because its way too hot! But yesterday she kept pointing outside and saying, "iontdat." Which we have figured out means, I want that. So, we took her out to see what she thought. Mostly she lost her footing and fell down a lot. But she did have fun putting her hands in the dirt and picking up and dropping rocks. Of course, I didn't get any of that on film, because I left the camera inside. By the time I came back out, she was on the porch and ready to go back inside.

Even Mr. Bishop got tired of being in the sun!
Today we took M out front to check out the front yard. Daddy was out watering, our sprinkler system needs some work, and M was wandering the yard. Our street is on kind of a hill so there is a good 3 feet difference between our house and the house next door. M was over looking near the property line when she slipped on some dirt (SHOCKING) and then rolled into the neighbor's yard. She rolled twice! It was hysterical! The good news is, she stood up and laughed! She wasn't embarrassed or hurt, I think she thought it was fun.
We're still testing Maryam's O2 levels at night. A couple of nights ago I put the pulse oximeter on her and she wasn't staying over 90% on 1/16 liter of O2 per minute. So, I turned her up to 1/8 LPM and nothing! It didn't budge! FINALLY it went up to 92%! This scared the crap out of me. It took me going all the way up to 1/2 LPM until she finally got up over 95% and even then it stayed steady around 95-96%...not good. I started skimming my memories for the day, was she feverish, was she breathing hard, did we give her the breathing treatment, does she need lasix? Then, it happened. She rolled from her back to her stomach....and voila! 100%! Clear as day...100%. So, I turned her down to 1/4, still 100%, turned her down to 1/8, still 100%, turned her down to 1/16 and we got some movement...98%. 20 minutes later I go in to see how she's doing...still at 99% on 1/16 LPM. Relief....I was going to finally go to bed. Then it happened again....her levels started dropping. When it stayed at 92% for more than a minute I got up to look at her, I wanted to see if she had her face buried in the sheets or something, NOPE! She had rolled on to her side!
OK...I've never been more convinced that her O2 needs at night are positional. When she's on her tummy, she's fine! Its when she's on her back or side that she starts requiring help. When she had her Preemie Follow-up appointment in June her neo put in a referral for Maryam to see an Ears, Nose and Throat doc because her tonsils looked large and because Maryam is a restless sleeper. Her appointment is July 31st and I'm definitely convinced now that she needs to see this specialist.
In molar news, it still hasn't cut through. Last night poor Brett had to stay awake with her until 6am. Stupid me got dehydrated, so I was pretty much useless. I had her up until 2:30, when I got so dehydrated that I got sick and could barely stand. At that point Super Daddy took over and I started to recover.
This evening we went swimming with The Carnes Fam. Anna tried teaching Maryam to do Patty-Cake better! It was super cute! Super Mom Chrissy actually took photos of the girls together, I stayed in the pool. When she sends me copies, I'll post them. Tonight Maryam went to sleep at 11pm, since she only had a half hour nap today, ran a muck ALL day, went swimming for an hour and a half and only had 5 hours of sleep last night, I'm anticipating a full night's rest. Good night!

Preemie Follow Up!!!!

This was Maryam when we woke her up this morning to head to San Diego.

This is Maryam wearing a skull cap that Mike put on her, what goes with a skull cap? A guitar! What do you use when you don't have a real guitar? A Guitar Hero Guitar of course!!!!

No Paparazzi! No photos please.

Our Guitar Heros, Jake and Maryam!

Where do I start? We had a GREAT Preemie Follow Up appointment! Maryam weighs 23 pounds 12 ounces and is 32" tall. She's in the 50% for her ACTUAL AGE. In the Preemie World, that's a HUGE deal, especially for a baby under 2 years old.
We started with respiratory; Maryam's O2 sats were at 100% on 1/8 lpm in the office. So her Dr. suggested that we spot check her during the day time while she's playing and see how she's sating. If she does well, she wants us to do a 12 hour trace at 1/16 lpm over night. If that looks good, which we all think it will, then she wants us to try having Maryam on room air during the day. She wants us to do several spot checks on room air and see how she does. All while weaning her diuretics down to once a day for 2 to 3 weeks. If all of this goes well then we'll discontinue her diuretics and see if we can keep her on room air during the day and 1/16 lpm of O2 at night!
OK, now I know that's A LOT of IF's, but I have TOTAL FAITH that she can do this. Maryam has come such a long way. She's such a fighter, she can fight her way off of oxygen no problem. There is a reason we call her a miracle, because she is. God heard the world's prayers and helped her fight her way back to life. He's going to help her through this as well. You all have no idea how many times Maryam wasn't supposed to make it, and she did! She did EVERY TIME!!! She can do this, I just know it.
Then we went on to GI. Dr. Bromberger wants us to back Maryam's calories down from 900 cals/day to 800 cals/day! She thinks this might help Maryam get hungry. And since she's managed to gain so much weight in the past 6 months, almost 9 pounds, she doesn't think it will affect her weight gain negatively. We're supposed to change her Prylosec down from twice a day to once a day and alternate for a week between night and morning to see if which one helps with her morning retching. Dr. Bromberger said that since Maryam is starting to drink pretty regularly that we should try giving her some of her formula orally again. She said that she's seen many babies start drinking their formula in the summer because they get hot and thirsty. So, we'll start trying that tomorrow.
As for the CP. Like everything else in Maryam's life, Dr. B called her "at risk for Cerebral Palsy" because she saw some of the signs. She did a neurological exam and found that Maryam's reflexis in her knees and ankles were "brisk." Apparently a sign of CP. She also found that Maryam has low muscle tone in her hips and shoulders which is another sign of CP. So, based on that criteria, Maryam is "at risk." She didn't want to give her a diagnosis yet though. She said those are both things Maryam could outgrow with PT. She wants to wait until Maryam is walking or at least until she's 24-36 months before she gives her an actual diagnosis. And even at that point she wants Maryam to see a Neurologist too. She said since Maryam is getting all the services she'd receive with a diagnosis, she sees no reason in rushing a diagnosis like CP. If at 3 years old she was still having problems and Regional Center or California Children Services was looking for a diagnosis to continue services then she'd rush a diagnosis.
As for the problems Maryam has been having sleeping, Dr. B is going to do a referral to an Ears, Nose and Throat doctor. She said Maryam's tonsils are large, and that they could be obstructing her upper airway causing Maryam to be restless trying to reposition herself for easier breathing. She also wants the HEENT Dr. to look at her vocal cords to see how much paralysis is still there and also to check her adenoids.
OK, so I think that's it for now. If I think of anything else between now and the morning, I'll add it tomorrow. Right now, I'm going to hit the rack and have ONLY sweet dreams! (Until Maryam wakes me up in an hour or so! he he he)