Friday, May 30, 2008

Noah's Bad Habits (Sigh):

Noah has learned how to pull his cannulas into his mouth and suck happily on them while his pulsox screams at us. Also noted: his ability to somehow, magically, remove taping after taping of his cannulas only to have me find him with tape and cannula flying free in the air.

I love little boys...especially innovative ones.
“I am thankful for laughter, except when milk comes out of my nose.” -Woody Allen-

Love the quote. I know it is a bit quirky but since I included the adorable "Got Milk" photos below I thought it was humorous. We all need more humor, especially in our house and especially when it comes to eating.

As the boys are getting stronger and older they are learning how to push the bottle out of their mouths when they don't want anymore. How convenient. We've had to start swaddling Jonah because he is constantly sticking his hands on his bottle and pushing it away or smearing formula all over his face. Noah just gives one quick swat and flips the whole bottle out of our hands. Nice guys.

The visit to the pediatrician went ok today. I'm still not terribly fond of our doctor. He messed up the dosage on a refill for one of Noah's diuretics and yesterday Shane and I noticed he had a strange dosage written up for the refill on Noah's Albuterol. I asked him about it today and he said it was because he didn't know the original dosage so he went by some formula per kilo. I seriously wanted to say, "How can you possibly NOT KNOW what his original dosage was after all the discharge notes given to you from the NICU, our review of his meds a COUPLE of times, etc.,etc.,etc." Rrrrrrrrrrrrr. One problem is he is a very busy doctor who wasn't taking new patients but our HMO recommended him so he pretty much was told to take on the boys. Sometimes I think he has too much going on. Plus I can't stand he is constantly telling me how overworked he is, tired he is, etc.,etc. It's just all too strange. I am used to doctors that are all business and not so personal. Today I got an ear full about his argument he had with his sister last night. I guess it isn't so bad he has a personal side as he does mention God a lot and prayer. At least he is a God fearing man. To top things off, I am not fond of his office staff. They act so "put out" because I make special requests to not expose the boys to other children. It doesn't matter how many times I have told them they are very delicate and it doesn't matter that it isn't RSV season, it is the specialist's orders for them NOT to be around people right now. I still get looks every time I check in at their isolation door and every time I say my boys can't go to the general lab for blood draws that lab techs need to come to the room and do the draws.

Ok, I am digressing and just getting upset thinking of it all so I'll stop.

Jonah is 11 pounds 3 ounces and Noah 10 pounds 11 ounces. Jonah is 23 1/4 inches and Noah 23 1/2 inches. I was disappointed they had not gained more weight, I could have sworn that Jonah was closer to 12 pounds. Oh well, this seems to be the ongoing battle for us but at least we know we are not alone.

We got the ok to start rice cereal. I've been playing with the boys and spoon feeding some formula for fun. Jonah had a blast a couple of days ago and played in it, he seems to get the idea that you swallow the stuff (although he still drools most of it) but Noah just drooled everything and looked at me like I was crazy. Obviously we have a ways to go. =) Shane and I are going to attempt rice cereal this weekend so we'll see what happens.

Well, better run. Jonah is down sleeping and Noah is fussy and wanting attention.

Love, Shane and Michelle
Got milk?

Wednesday, May 28, 2008

Interesting Happenings of the Day:

1. Re-taped Noah's cannulas FOUR times, this includes finding Noah in his swing (right after I finally got Jonah down to sleep) sucking happily on his cannulas after ripping them out of his nose. He thought this was hilarious, not mom. =)


We got in to see our ped this morning and he finally agreed to try Jonah on different reflux meds, so we're starting Prilosec tomorrow (the same dosage Noah is on). I sure hope this makes a difference because his increase in hacking/coughing and spit-ups has not been fun ever since we upped his volume of formula. He does have a minor cold which complicates matters as he has a lot of phlegm he is dealing with. This adds to his easy ability of spitting up....SO FUN!!!

Our pediatrician did talk about the surgery to tighten the stomach sphincter to prevent reflux but we aren't supporters of this option as many children afterward end up on g-tubes and I will fight the entire world if I have to to keep my boys off g-tubes. We'll see. He DID say this was the worst case scenario option and he definitely thought the boys had room to go. Jonah has had 7 surgeries in his short life and he doesn't need any more if AT ALL preventable. Because we can't get in to our GI clinic until July (I tried everything to get that changed) our ped is calling a secondary source to get another opinion on the boys. I definitely think some probiotics might benefit both as they both have problems with pooping....who knew we'd value such things as poop and a day without vomit a year ago. My how things change.

Jonah's intake for eye therapy went well. The therapist was pleased with how verbal and social Jonah was. She did note his eye delay but we are both hopeful with therapy plus perhaps eye patching we can prevent surgery. We may need to look in to our second opinion in Los Angeles soon as Jonah goes to see his eye specialist in Fresno in the next few weeks. His helmet fitting is next Friday! I am excited to see how it changes the shape of his head. Boy next week will be crazy, we have therapy appointments, helmet fitting and high risk appointment every day. Thank goodness Grandpa Langston is still in town!!!

Tuesday, May 27, 2008

Cute video of Noah and Jonah.

Monday, May 26, 2008

“First the doctor told me the good news: I was going to have a disease named after me.” -Steve Martin-

Hilarious! Not totally applicable to this posting but somewhat in the way that we had decent news this morning (although not with the above mentioned irony) from the physical therapist.

Dad got the opportunity to take Jonah to his medical appointment and Mom got to rest because she had night duty! Hip hip hooray for sleep and holidays!
I typed up a summary sheet for Shane to take and made sure I emphasized good note taking as I wanted all details.

So the short of it is that the physical therapist confirmed that yes, Jonah fell in the 2-3 month range for ability, mostly due to his weak neck muscles. He is only 4 months adjusted age so that isn't too bad. Our therapist said that due to his long time in the hospital it is no surprise he is behind as well as the misshaping of his head has affected his head movement, weak neck muscles (which we knew. Jonah goes in June 2nd for his helmet casting so I'm excited to round out his head in the hopes it will encourage him in the development category too).

Here is the good news: she said she saw no signs at this point of severe cerebral palsy. Now, before we throw in the towel and yell for triumphant joy that the battle has been won we know this road is LONG. She DID, DID say it was still very early and that things would truly manifest themselves over time but at this point she was happy to say she did not see anything alarming, only issues related to his long hospital stay and prematurity. Of course we also know there are several forms of CP and he could easily develop minor CP down the road. But, FOR TODAY we will be happy with our news. We'll give a hurrah and close this posting before something happens (i.e. vomit, fit of colic, or other) to ruin our happy moment!

Love, Shane and Michelle

Saturday, May 24, 2008

Cute video of Jonah! We have great chats together. =) This morning we smelled all different kinds of wonderful spices, the therapy book I received from American Legion of the Blind has given us new things to try out with Jonah. His therapist comes Tuesday and we are excited to start therapy. The organization is based out of Los Angeles and I've heard good things so hopefully this will be helpful.

Friday, May 23, 2008

Precious baby, we love you! Pics of Jonah snuggling with Mommy. We love his chubby cheeks. He now weighs over 11 pounds and his brother is right behind him by a few ounces.

Cute pics of Noah. I love it when he gets a hold of his oxygen tube and wraps himself up in it, he gets his hands on anything he can! This little man is always busy! He is now rolling from his back to tummy and is getting stronger every day. Beware the coming days, he is going to be a handful! I also love the photo of him smiling wearing his "Daddy's Team" outfit.

Tuesday, May 13, 2008

I am borrowing the below from another micro-preemie mom's Web site (I hope you don't mind Liz!) I love how well it expresses the journey we face as moms with babies who have special needs.

To You, My Sisters!
by Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Monday, May 12, 2008

"Vegetables are a must on a diet. I suggest carrot cake, zucchini bread, and pumpkin pie." Jim Davis

Ha, I LOVE IT! I had to start out this post with a humorous quote. I got a kick out of this one! Of course, you probably guessed the topic based on the quote and that is EATING! Oh boy, our roller coaster continues. I don't know if it ever gets better for us micro-preemie moms. There isn't a ton of research yet on these babies as they grow older as it has only been in the past 10 years they have started saving these little ones so I have no idea if this will ever clear up with age. I can only pray and hope for miracles every day.

I feel like I can't really complain as the boys are still young and not even in the toddler years yet but it doesn't make things easier. I try so hard to not get anxious when reading the stories of other micro-preemie moms on my Yahoo! group who are having feeding problems well into the second, third years. Many moms can't even get their babies to eat solids and survive on high calorie milk/formula, yogurt, etc.

I was pretty disappointed this past Thursday when we weighed the boys at the doctor's office to discover they really hadn't gained weight in the past couple of weeks.I keep praying Noah and Jonah will wake up one day and realize they need to EAT! We aren't there yet. It is still a fight to get 50 cc's down them every three hours (that is a bit over 1.5 ounces). Yes, in a day they are averaging about 14-16 ounces. If they eat more then that I breathe a sigh of relief with a sense of impending dread as I know the next day they probably will eat worse because they ate so much the day prior. I've contemplated feeding every two hours but it is a doubtful cause.

Sound like fun yet? =) I'm not looking for sympathy really, just understanding. I think people often make the terrible mistake of thinking that since your baby is home from the hospital all is well and they are doing marvelously and the horrible part is behind you. Unfortunately some of the worst battles happen at home.

I did call down to Fresno today and left a message for the occupational therapist that worked months with the boys in the NICU. I asked that she call me back about enrolling the boys in a feeding clinic. Sadly, there aren't any in Bakersfield so that means another 4-hour round trip for me to Fresno if they start the clinical therapy. Has anyone seen any great jobs for Shane down that way yet? Ha ha ha!

Neither Jonah nor Noah have grown, length wise, that much since coming home from the hospital (Jonah: March 17th; Noah: April 7th). Both have put on a bit over 1 pound since coming home but now I feel like we are stuck in a ditch.

I had several days in a row a few weeks ago where at least one would eat more like 17-18 ounces a day and then suddenly both settled on eating the 14-16 ounces a day (50 cc's, sometimes more, every 3 hours). Jonah has generally been my better feeder but lately he screams at me and trying to get food down him sometimes is really tricky. Like I've said in my previous postings, he has taken to sucking on his hand and generally prefers that to his bottle.

I just want to get a hold on this before doctors start talking about g-tubes (feeding tubes) because they aren't gaining enough weight. I've said it once and I will say it again, they will NOT get feeding tubes. I will do everything I can and then some to assure that they don't end up with that happening. I have always felt that feeding tubes are just a delay to the actual problem as soon as you remove a feeding tube you battle feeding all over again. Now what is the use of that?? Why not tackle the problem first instead of pushing it off for a couple of years? I am sure my theory isn't perfect but as a Mother I want to tackle the problem first and not later.

Life continues on for us. I'm hoping Jonah will start his eye therapy in the next week or two (another thing I need to follow up with). Speaking of Jonah, he had another "choking" episode last Thursday, conveniently right as we were heading to the pediatrician's office. Thank goodness this time it wasn't "as bad." He did struggle with catching his breath but continued to off and on cry and I immediately got him to the floor, suctioned his nose/mouth and whacked him, face down, resting on my forearm, a good few times until he recovered. This time I had my wits about me a bit better, poor Shane just stood there in shock (he wasn't here the last time that Jonah spit up, choked and stopped breathing). Then to improve the situation Shane backed our brand new RAV-4 into our Corolla. Nice day. =) Good thing we were able to buff most of the mess out of the Corolla at the dealership and they recommended a paint shop that won't charge us an arm and a leg to repaint the bumper of our RAV. That is our silver lining as I was sure we'd have to repaint both cars.

These boys are adorable and such a joy, it makes you want to be the best you can in all you do. It's also hard to not live every day wishing they could have had an easier start and searching for ways to even the playing field, although I'm not sure we'll ever be able to give them what they should have had.

Thank you everyone for your love and support. We'll keep you posted regarding the ongoing eating saga.

All our best, Shane and Michelle

Sunday, May 11, 2008

Saturday, May 10, 2008

The many faces of Jonah. Yes, he has recently found his hand and can't get enough of it. Too bad he likes it even better then his bottle! If we could only get him to like his bottle as much as his hand!

Shane's boss gave us these adorable outfits from Gymboree. So cute! BTW.....does anyone have tips on how to get both boys interested in the camera at one time? HA! That will never happen with twins!

Wednesday, May 7, 2008

Tuesday, May 6, 2008

Noah visited the pulmonologist today. Things went well, other then my annoyance with one of the nurses for saying, "Well other than your son being a shrimp he looks great." Nice. Another stupid comment to add to the book of insensitivity.

Yes, we know Noah needs to gain more weight and no, he obviously is not where he should be because guess what, he is a PREEMIE!

The specialist did say that Noah looked really, really good. Everyone is always surprised with how bright and curious he is.

Grandpa Langston stayed home with Jonah. What a help he is! I am not sure how we will do things once he is gone. It makes life so much easier only having to manage one child. When my father and I took the boys to the opthomalogist Friday he just looked at me and said, "I don't know how you are going to do this alone." Both boys are pretty demanding, as babies are and it is so helpful to have extra hands right now. Plus it doesn't help that it is taking almost two hours in the car to drive down to meet with our specialists.

Shane and I have a lot of decisions to make right now in our lives. We have been praying for direction on what to do. We both want to get closer to family or move closer to the hospital in Fresno. Job opportunities aren't really to be found and it is hard as Shane just changed employment this last fall right when the boys were born. He really wants a chance to build his career first before making another move but there comes a time when family becomes so important.

We will see what happens. I do know the two hour drive to see specialists, etc. is wearing on me.

One thing that I have to be grateful for (and I try to remember when being frustrated about not receiving immediate answers as to what is best for our family) is the state of California has amazing services for families with children who are chronically ill. We have had the local regional center step in and help us so many times over the past several months from assisting with living costs away from home to purchasing the Pulsox machine for Noah because insurance would not cover the costs to rent, etc.

We have been blessed and Shane does remind me that this is pretty unique to California. Regional center is also arranging for eye therapy to start for Jonah, all costs covered. We are praying it will be helpful as his vision is affected right now by his difficulty to focus. I keep wondering if this will delay other things as well until we are able to fully fix the problem. He has started up with the cutest "coos" and smiles more every day when we play peek a boo with him. That makes me happy.

Pray for us that we will receive direction in our lives and know what is best to do for the boys.

Shane and Michelle

Friday, May 2, 2008

Just a quick update. Both the boys had follow up appointments with the eye doc today in Fresno. Noah is right on track and his eyes are just as a normal infants would be. We are so pleased with him so far, he is so active, bright, curious and already trying to sit up in our arms. He even tries to scoot himself out of his bouncer and recently has started trying to get out of his bath tub sling too. I have a feeling we will have our hands full with him!

Bless our Jonah. His eyes are a little more complicated. He doesn't need glasses yet but most likely by preschool age he will. Also, his right eye is pretty weak and the specialist is referring him to the local regional center to start therapy to see if we can't get it strengthened. If not, she said eye surgery will be necessary to work on that particular muscle which isn't focusing properly. If that day comes we will probably ask for a second opinion from the doctor who did his laser surgery in Los Angeles. We keep praying every day that he will have the opportunity to overcome the trials that face him. We have been excited as of recently he has started smiling at us more and cooing when we play peek a boo and giggle at him. It's always exciting to see your baby smile!

We are blessed to have them in our lives and thank the Lord that he entrusted them to us.