A New Monkey

I love days like these

2010-05-07T20:05:00.003-04:00

You know how it is when you have a kid with CP (or any other developmental delay)... you wait and wait (and work them) seemingly endlessly for them to progress. And then, just when you least expect it, things start to click and they make a step forward. With my son, it has been months since I have seen much progress at all. Sure, his head control and trunk strength has improved gradually. But seeing him do something "new"? Well, it has been a long, long time.

However, lately I have seen my boy do things I never thought he'd do again. Tonight he rolled over from his right side to his left. On purpose. Then he grabbed an electrical cord (yes, I let him do it... not plugged in) and lifted it high in the air. He worked like hell to get it in his mouth... like 15 minutes on this one task. Smacking his lips, sticking out his tongue, moving in ways I haven't seen since before the stroke. Now, he is working on rolling over again.

Yesterday morning when I got him out of bed, I neglected to sing his "Good Morning" song to him. When I put him on his changing table, he said "goouh" to me. Clearly, wanting his usual song. Lots of big smiles all around when I complied. I haven't heard a hard "g" sound since last spring. He is babbling more than he ever has. Stroke or not.

And today, he did so well in PT they brought out the cameras!

I'm just so proud of my little man. What a joy to get to be his Mommy and what a fabulous Mother's Day gift he has given me this week!

The future is now

2010-04-29T12:30:00.002-04:00

So, when William was first diagnosed with PVL at 4 weeks old, his neurologist told me he would likely have seizures. And then after his stroke, I knew that the likelihood was even greater. Well, yep, my Man had his first known seizure last Friday. It was very short but those couple of minutes were like an eternity. I was so terrified that it wouldn't stop and he would end up in the hospital again.

But it did stop and I took him to the ER. They observed for several hours and took blood samples. Then we were sent on our way. Thank goodness.

Mister has been in a really great mood since then (crazy, I know). And his very much increased dose of Keppra (he was on a "preventative" low dose before) has decreased his retching significantly.

I'm hoping to do a good update on us all soon. Things are going well with much progress being made since his stroke.

Another Giant Step Forward

2010-02-19T14:19:00.002-05:00

Wednesday William made another giant step forward in his recovery from the stroke. He passed a swallow study! He was able to swallow pudding and honey thicknesses with no issue and penetrated 1 out of three times with nectar.

So, for now, we are calling him safe to eat very thick foods. He is going to enjoy being able to eat chocolate pudding... the boy loves his chocolate!

We will schedule another swallow study in 4-6 more months and hope that his ability to swallow thinner liquids will have improved. I don't think we are going to get rid of his GJ tube any time soon but it will be fun for him to practice eating again!

The short version

2009-11-09T20:48:00.006-05:00

There is no perfect way to start this all up again so I will just start with the unexpected turn that came our way this past July.

On July 29, we were still all unpacking from a week trip to the beach. I was taking the time while the kids slept in to clean the house a bit. But about 9:15 am, I realized that William was sleeping too long and I needed to get him up and get dressed for therapy. So, I went into his room singing his special wake up song but when I approached his crib, I noticed he was in an unusual position... and that he was surrounded by a huge pool of liquid. When I picked him up, he was completely ragdoll limp and I saw that he had severe nystagmus in both eyes. As I carried him into the better lighting of the den, I could tell that he was off color and couldn't tell if he was breathing. But he was hot. Really, really hot.

I prepared to take him to the ER but realized that the situation was too serious for me to drive him. So I called 911. I am surprised that the operator could get any information from me at all. Because as I type this calmly, I was completely panicked at the time. there are no words to adequately describe the fear, panic, grief I was feeling holding my son.

When the ambulance arrived, I had Margaret meet them at the door and let them in. The EMTs took one look at William (didn't even put their bags down) and scooped him up out of my arms and immediately took him to the ambulance to start medical treatment.

At the time it was looking as if William had suffered a seizure. While at the ER and after the docs had given him some anti-seizure meds, William went into respiratory arrest. He was intubated and paralyzed. They ran a CT scan on his brain but found no bleeds or trauma so everyone's best guess was a seizure brought on by a fever due to a viral infection.

William was admitted into the PICU and remained intubated for a few days. On Margaret's birthday, August 1, he was extubated but remained in a comatose state. And then. He started to have trouble maintaining his sats. And breathing. And his heart rate. My husband and I stood by his bedside and cheered for him everytime he took a breath. At the time we just didn't want him to be intubated again. We had no idea how sick he really was.

So, he started breathing again and things stabilized. Until he started showing some ominous neurological signs. His nystagmus returned but was clearly only in one direction (to his right). And even though he had been off all sedatives and most pain meds for a couple of days, he did not wake up. That is when he had a second EEG ordered and following the results another CT scan of his brain.

The CT scan showed that William's right hemisphere had sustained a huge ischemic event and was swollen accross the midline of his brain. William was quickly re-intubated. And that is when the parade of specialists started. Neurology, neurosurgery, hematology/oncology, cardiology, gastroenterology, plastic surgery, pulmonology, genetics, regular 'ole pediatric surgery, etc. MRIs of all kinds on most of his organs and major blood vessels. CT scans of his brain every day for two weeks.

He had a Nissen and G tube placed following a failed swallow study. His surgical site became infected and he nearly died from that. His stomach completely shut down following his exploritory surgery (to find the infection) so he had to have the G-tube removed and replaced by a G-J tube. He is completely j-tube fed.

William spent 55 days in the PICU. Five days on the regular peds floor. And three weeks in a Rehabilitation Center.

What caused it all? A stroke. A massive stroke that, I am told, would have killed most people instantly. The ironic thing is that William's PVL saved his life, most likely. Because William had extra "room" in his brain, it was able to swell so much without killing him. From what I am told, the stroke affected his entire right hemisphere- that none of it was spared the damage. Knowing that, he does show many of the affects you might expect. The left side of his face droops. He neglects his left arm. His vision has taken a huge hit. But then there are some things that might surprise you. He still has the same likes and dislikes. He remembers things, people, events from before his stroke. And even with half of his brain "gone", he is still himself. I can not tell you what a blessing that is.

Today, William has lost a lot of what he worked so hard to gain. But he is getting better every day. When he was released from the PICU, he no longer had any head control or much voluntary movement at all. Now, he has gained a lot of his head control back and is working on making his arms work. His left side is now very affected whereas it used to be his "good" side. He is a hard worker so I have high hopes for his recovery in time.

We still do not know why William had his stroke. And we probably never will.

Wordless Wednesday, Halloween Edition

2008-11-12T09:41:00.004-05:00

Wordless Wednesday... a day late.

2008-10-30T13:16:00.003-05:00

Gustav and kids update

2008-10-25T00:47:00.005-04:00

Gustav really did put the smack down on our little city. At our house we were without power just short of two weeks which was much less time than I would have initially estimated.

And then after the lights came back on, I was thrown into trying to juggle William's full therapy schedule, getting Margaret to and from Mother's Day Out, and attempting not to let our house sink further into chaos. I've only been marginally successful. All of you other Mommies who have a full plate of therapy, a clean house, and a JOB... my hat is off to you. I really DO NOT understand how you fit it all in. That being said, I am looking forward to the day I can work again. I really miss doing something for myself. And before you ask, no I'm not planning on going back to grad school. Just not worth it in the grand scheme of my life right now. Maybe when I'm old and have time to be bored again...

How are the kids? Great!

Margaret has matured so much. I just can't believe how much of a child she is now. I miss my little baby girl! But she loves "school" and all things learning. Her creativity continues to surprise me. I just didn't realize how clever children are at this young age. Margaret loves to help me clean up little spills and dust. She is a great storyteller and can also sing decently on key. Her greatest strength continues to be her love for reading and numbers. Is she reading? A little. We don't really push it so I probably underestimate how much she actually knows. But I have to say, she is much more on par with her peers now and that makes me happy. While I loved the amazement in people's eyes when they realized that my 12 month old knew her alphabet, it is a sigh of relief to me that she is more on par with her peers now in pre-reading skills. The best thing of all is that she starting to enjoy interaction with other children... and will play with her brother from time to time. He loves it and so do I.

William has gotten huge. His 24m clothing is getting to be a bit too little for him and 2Ts are just right... he is 20 months adjusted. So, he is about 95% on the SPQD CP growth chart. While this is awesome that he is so healthy, it is really hard on my old bones. He is so hard to hold now. I'm guessing about 28 pounds and maybe 36-37 inches. But that is all ragdoll weight. When he is in my arms, he is usually completely relaxed so I get now help from him at all. And then if he gets excited for any reason and stiffens up, his weight is easier to hold, but he is so long that it is just awkward. Consequently, my carpal tunnel is keeping me up at night and my elbows hurt during the day.

Developmentally, William is still making slow steady progress. He has started to tolerate being put on the floor for a few minutes at a time now. I'm am hoping that he will learn to roll now that he has the opportunity. There are some sounds that we are calling words now. William consistently says "Addie" which means "Daddy" and he will say "Ahg" for "again" sometimes. He is trying so hard to talk but it really is exhausting for him. And it is slow going with ST right now b/c he won't stop crying during therapy. I know that given the opportunity he would be able to use a simple choice communicator to tell us what he wanted between two things. He is getting some switches for his birthday. What a lucky boy. ;)

We still have no approvals from insurance for any type of equipment for William. November 20th will mark a year since he was first measured for a seating system. Yep, that's right. I've been holding him for his entire life so far. Now we know why my elbows really hurt.

Here we go again...

2008-08-31T13:49:00.002-04:00

Keep my state, my family, and my friends in your prayers please. As we prepare for the landfall of Gustav tomorrow, my mind can't seem to get off the NICU and Katrina/New Orleans. My brain is like a broken record all day today.

Already today, our airspace is full of the big helicopters. Ambulances staged at gas stations. National Guard out and about.

We are inland, but the eye is forecast to come within 50 miles of our city as a category 3 storm... this one is going to be rough.

So, if you can please say a little prayer for all of us here. Much appreciated.

Cory

2008-04-27T16:50:00.000-04:00

I am the crazy lady who comes up to you and wants to talk about your disabled child. Or if you are disabled, I chat your ear off... asking a million questions. I am sorry if I freak you out. I'm just looking for some reassurance and guidance on this crazy ride.

Over the past few months, I had noticed a man who grocery shops at the same store I go to. He is in a wheelchair and seems to have CP involving all four limbs. The first time I saw him, I was so happy to see such a well functioning adult with Quad CP- he is a great driver and also speaks well. Such a relief to see as a Mom.

So over the past several weeks, I have been building the courage to speak to him. I am always so worried that I will offend someone when I approach with a head full of questions. But this past Tuesday, I got over my nervousness and approached him. And, wow, I'm glad I did.

Cory is an LSU alumnist who serves on the City Council for the Disabled here. He knows all the best doctors and treatments in our area. The depth of his knowledge is remarkable. Some of his personal story is heartbreaking since he now has complete hip dysplasia due to not receiving services at a young enough age to slow down his hip deterioration. But he is doing so well. It eases the worry in my Mama heart.

Sometime soon he and William will meet. And William will have another very valuable player on his side.

Thank you, Cory! I am so happy to have met you!

Mischief Abound

2008-04-25T09:45:00.001-04:00

I left the room for two minutes, tops.

Wiggled out of his bean bag chair trying to grab the DVD player.

Kitty Litter is FUN!

You can barely see but his entire head is covered in sand... thanks Big Sister! I LOVE IT!

I heard "Rub, rub, rub" and then William was covered in mud.

Caught!!

My favorite wisk is also William's favorite wisk. It is a little harder to use now.

Out of the Shadows

2008-04-24T13:55:00.004-04:00

This winter was rough. Our rolling illnesses continued, culminating in a GI bug that wiped our entire house out. Since then, knock on wood, we have been relatively well! A full three weeks now. Of course, Margaret has her ever-present sinus infection and William is gagging on his reflux but nothing big to slow them down any.

Our biggest even of late was Margaret's transition meeting. See, my "baby" will be three this summer and she won't be eligible for free Early Intervention services through the state anymore. So, if a child needs services, the parents can have the child evaluated by the public school system. If they qualify, the school system will provide services after the age of three.

The meeting was yesterday morning. Margaret was in a mood... I think hungry. And there were six or seven people in the room all trying to get her to do things. I can't believe she didn't shut completely down. Why do they think that having so many people in the same room with a 2.5yo is conducive to evaluating how they behave normally? Despite all the "issues" I had with how the eval was handled, she performed pretty well- did as well as she does at home. When we first got there, though, she immediately zeroed in on an alphabet sign they had taped to a door. Of course, in her two year old brain, that meant there were LETTERS behind that door! Lots of whining and crying to open the door. Finally, I told her it was a bathroom (really don't know). She looked at me as if I had just sprouted another head (because that just doesn't make sense, Mommy!) and stopped trying to open the door.

Despite my concerns over her obsession with letters, her ability to read some words, and her social/sensory challenges, she didn't qualify for services. I'm not sure if I am scared or excited. The thought of her not getting OT for her sensory challenges gives me a mini panic attack. But how much of that is just because I feel comfort in having another set of eyes on my daughter? I don't know. I'll mention it to her OT and see if she thinks M is ready to go it alone.

The social worker who was there called me "relaxed". Ha! That is just what happens when I am overwhelmed. I think "nervous" and "frantic" better describes my usual state of mind.

At the very least, this meeting was a good dry run for William's meeting in a year or so.

Speaking of, my boy is growing like a weed! He has to be 25-28 pounds by now and I have thrown my back out twice already hauling him around. He and Margaret wear the same size shirts and diapers. Margaret's legs are about twice as long as William's, though.

William has been eating pureed food for a while now and is doing well with the stage 2 foods. I tried blending up some of our table food to give him but he hated it! I guess the texture is just not as smooth. Poor fella was spitting and gagging. It will be a while before I try that again. He does pretty well gnawing on cookies, though.... hmmm.... Methinks he doesn't like my cooking. Still, I am really nervous about moving on to stage 3. Will all M's former eating difficulties, I guess I'm just a bit gun shy.

Also, my Mister got some glasses! At his last Ophthalmologist appointment the doctor noticed that his eyes are crossing a bit more. So we are trying glasses to see if that helps him. So far it is hard to tell if they are doing anything. We still have six weeks left of this "trial" and if the glasses don't help, we will move on to patching. He's gonna love that. HA! I do say that he looks so stinking cute in them, though. So I hope we get to keep them!

We have put all plans to go to China for stem cell treatment on hold. A month ago, I was ready to go for their SC treatment of optic nerve hypoplasia. After a discussion with his eye doc, I have changed my mind. She said that since William's ONH is not a "clear cut" case, she feels that he would not get the benefit that many of the children who go seem to have. William's eyes have more healthy tissue than most kids with ONH so she feels his vision issues are more from his Cortical Vision Impairment. We haven't thrown China plans completely out the window. There is still a chance that we may go for (so called) CP treatment. But, for now, it is not an active topic of discussion anymore.

I have a lot to catch up with here but I won't do it in this one post. I post again, soon. Promise.

Look how big!

2008-04-22T14:35:00.003-04:00

So busy!

2008-02-14T12:13:00.002-05:00

February is looking hard. David is going out of town for the majority of the month, leaving me in charge of two little ones. I told him that I am not qualified for such a job but he assures me that I am.

How are the kids? Doing okay. We have a rolling sickness in the house. First Margaret gets it, passes it on to William by the time she is almost well. Then when he is almost well, she picks up something else. And the cycle continues. The latest illness has settled in Margaret's lungs which means she will rattle and cough for a month. When is spring?!?

Margaret is running a bit now. She still falls over if someone even looks at her funny but in general, she seems to still be progressing with her motor skills. No jumping but we are working on it. It is only when I see other kids much younger than her doing these things that it hits me that she is delayed. Otherwise, she seems perfectly fine to me.

William has had a huge growth spurt and I think needs a baclofen increase. Currently, he is on 7.5mg a day. This dose was started when he was 17 pounds... he is now up to 22 pounds (a moose) so I think it is time to increase his dose. His muscle spasms are out of control and he is losing some of his arm control b/c he is super tight again. Diaper change also seems to be very uncomfortable for him when I lift his little legs, stretching his hamstrings.

All in all, not much has changed. I will try to get up new photos soon!

My Hero and My Heart

2008-01-29T12:21:00.000-05:00

I'm a lucky Mama. I know a lot of people who may find my blog by accident or by searches may read my family's story and think it tragic. But I don't, not really. I've really been doing some serious soul searching these past few months. The kind of search a person does when their lives take them in a completely unexpected direction. And I have am much more at peace with how things have unfolded.

My daughter was born at 27 weeks. My water broke at 22 weeks. I was told she would not live. But we proved those doctors wrong! As a team we are unstoppable! Every morning when she wakes up, every minute when she is running from a diaper change, every goodnight kiss reminds me of the incredible battle we won to have her here with us. I am so grateful for her life, her smile, her love. She is my Heart.

And my son. My son. He is nothing less than a Badass. Born at 28 weeks measuring a huge 3 pounds 7 ounces and 17.5 inches long, he is still a BIG Boy. William suffered extensive brain injury and his optic nerves are malformed. Many who have not expected much from him have been impressed by his drive and craftiness. My Mister has learned to overcome some of his spasticity and is gaining function due to sheer determination. Once he could not bring his hands to his mouth. Now, he can! Once he could not hold a toy at all. Now, he can! Once he was expected to have no mobility at all, ever.... Here is the big one... are you ready.... ???... He is starting to combat crawl. I wish there were words to adequetly describe how hard Mister works to do these thing. How he tries over and over and over... he gets so frustrates and "yells" about the things he can't quite do. But he is learning. What a wonderful thing to be able to witness first hand- the sheer power of determination. Driving forward, achieving the unachievable. My little guy. My Hero.

An update in photos (huge amount... sorry!)

2008-01-20T22:04:00.000-05:00

I'm so sorry I have been absent. One of my resolutions is to be better about my blogging...

Things are going well here. Babies are getting big.

Halloween and Thanksgiving

2007-11-27T14:03:00.000-05:00

I have been so bad at updating. Things are just so busy these days. I haven't even done a post about our Halloween!

Halloween here was HOT and the costumes were like little roasting bags for my babies! They didn't seem to mind, however. William loved being outside when the sun was not as bright (he has some photophobia) and was so calm! He did a lot of staring at his Daddy, who carried him for much of the night. Margaret also had a great time. It didn't take her long to figure out that people were giving out candy and she loved grabbing what she wanted out of the bowls. She also knows no fear and walked right into a few houses and explored. Most people thought it was really funny but it kind of scared me...

Thanksgiving was good even though William had been fighting a cold. Our family took the five hour drive and spent the holiday with David's parents. Margaret refused all Thanksgiving food. William threw up about four times. It was the best Thanksgiving in a while... since 2004. 2005, fresh NICU graduate sequestered for the winter. 2006, in the hospital days from having Mister. This year was nice in comparison!

William is now over his cold. He is a baby who does the cough-n-puke so I'm sure he has lost some weight. There were several days when he kept no food down at all. Margaret has a bit of a runny nose today. Daddy is snorty and I've got a bit of a throat tickle... I'm praying this is short lived. I was hoping that this winter would be more "well" since it is M's second at Mother's Day Out. She is certainly getting over her colds faster but I still get everything she brings home. Blah!

Long Overdue

2007-11-03T21:06:00.000-05:00

I just hate letting those toothy pictures fall to the bottom of the page. Seriously, how cute is my Sweetie???!!

Things are going well here. Margaret has finally gotten used to her new teacher at school and resists leaving when I pick her up! She shouts, "No WAY!" and runs to the far corner of the room. I'm glad she likes school so much but it still makes me feel a little bad that she doesn't always prefer me anymore. She even eats better at school!

Around the house Margaret is talking up a storm. Finally. However, when she is around her Speech Therapist, she clams right up. I don't think M has done anything other than repeat the things her ST says. About two weeks ago, I got a alarming note from the therapist saying that she saw "red flags" about M's lack of speech and anti-social behavior. I was very pleased to be able to call her immediately and say that we had just had Margaret evaluated by a Neurologist who saw no "issues" at all to worry about. Still, the therapist wants me to call an agency in town and place Margaret in a speech and hearing playgroup. Yeah, I'm not going to do it. Instead, I racked my brain trying to figure out why Margaret exhibits the behaviors she does.

And I did figure it out, I think. What I think is going on is that her old tactile defensiveness has reared its ugly head again. So, I have arranged to have M seen by, count 'em, two OTs through Early Intervention. I guess I naively thought that after we tackled her early defensiveness, we were done. Nope. But, I do know she can be helped and does show improvement with sensory therapy. I'm just glad that her ST made me think about this in such a way to be able to get her the proper help.

Otherwise, Margaret is being her sweet, funny, loving self. She is still a Daddy's girl, showing so much favoritism to make me a little jealous at times. When Daddy is gone during the day, Margaret loves to come up to me and firmly state, "Daddy. Work." And when he comes home, the room lights up with her smiles and squeals, "Daaaie, Daaaie!"

How does Margaret feel about her brother? She is definitely warming up to him. Tonight she hugged him of her own accord with no prompting from us. And she cries and screams "NO!!! MINE!!!" if anyone other than me tries to push his stroller when I am dropping her off at school. She is also very concerned with any crying he does. "Brodah cwying!"

My favorite thing of late, though, is her new game of "Night Night". She will gather a group of toys: stuffed animals, figurines, rattles, whatever. And then she will put them all to bed, sometimes on the hearth and sometimes in her bed. "Frog, night night. Elmo, night night. Turtle, night night. Toy, night night." Occasionally, one will get extra care. "I coming, I coming!" Followed by the toy being covered in a washcloth and kissed. She is so gentle and it is so cute to see. So cute. Makes me feel good to know that is how she views Motherhood. What a good little Mommy she is!

An EEG and a Tooth

2007-10-19T10:17:00.000-04:00

The past couple of weeks have been full of excitement for us! William had a couple of episodes similar to infantile spasms. So, understandably, we were very scared. The Neurologist got him for an EEG as soon as she could. We got the news yesterday that he is NOT having infantile spasms and I couldn't be more relieved!!

He is also now up to his full dose of Baclofen and I can see some good changes in him. Again, they aren't knock your socks off things but the little things are so good! He can now get his hand to his mouth and keep it there for long enough to get a good chew on his fist! He can bring a toy to his mouth (a Winkel) and chew it! I have seen no extra floppiness at all. His mood continues to be good.

And he got his first tooth!!! He is a terrible, terrible teether! I'm thinking that because he can't gnaw on things like a typical baby, he gets crankier than one, too!

This looks very interesting

2007-10-10T00:03:00.001-04:00

Including Samuel

Update on Baclofen

2007-10-09T12:56:00.000-04:00

We started giving William Baclofen last Thursday. This is a drug to help reduce his spasticity. We are ramping up the dosage from 2.5mg a day to 7.5mg a day over the span of three weeks. My goal in starting this treatment is to help him have more use of his hands.

It has only been a few days on a very low dose but I am being asked if I see a difference at all yet. My husband says he sees no difference. But I think I do.

He, by no means, is grabbing or playing with toys. But I think he is able to get his arms out of his super stiff extension more. He is bending ever so slightly at the elbow now in order to grab my hair when I eat his belly. (nothing like hypertonic grip on the hair!)

Another change that I didn't expect is that his mood has improved dramatically, especially 30 minutes or so after his dose. Why? I'm not sure. I'm thinking that part of his crying and crankiness was due to discomfort in his muscles. Perhaps the spasms and hypertonia are quite uncomfortable. I don't know anyone with moderate/severe hypertonia to ask about this.

Also, he is vocalizing a lot more. Is it because of his improved mood or because of decreased spasticity in his mouth??? I guess I'll never know.

So far, I am not seeing any extra floppiness in his trunk or neck. I'm hoping I don't since he has a hard time with head control as it is.

So that is what is up with the Baclofen. I am hoping that with our next dosage increase, he will gain more function of his arms... keep your fingers crossed for him!

Look at me!

2007-10-06T18:05:00.000-04:00

It is only for 10 seconds or so and it takes a LOT of positioning by Mommy BUT...

Pajama Time

2007-10-05T21:40:00.001-04:00

Plugging Along

2007-09-25T11:37:00.000-04:00

We are still here just plugging along. Both babies have been sick so things got crazy for a while. I'm not even sure if I got sick... didn't have time to think about it, I guess.

We had a wonderful visit from my Mom and she surprised me by having my sister in tow. How great was that??? I haven't seen my sister since Margaret was fresh home from the NICU! There are no words to express how much fun it was having a shopping day with my Mom and Steph. I had forgotten how nice it is to have girl time. ... now I'm craving it... (Steph, please come back soon!!!!)

In not so fun news, I am having to get surgery on both my hands. I am going to try to schedule it two days after Christmas since recovery will be long and painful. I don't want to have to feel bad during the first Christmas that Margaret *may* "get it". I'm having two procedures done on both hands. First is a carpal tunnel "release" and second is to fix the extreme tendonitis in my thumbs. The pain has gotten so bad that I can't sleep at night. I can also no longer open things that twist off or grip and lift things with my hands. This poses a major problem since William isn't going to be motivating himself anytime soon. AND he is a big boy. So, I thought I'd better do this while he is still 20 pounds rather than 40. I will not be able to use my hands for six weeks. I am having to schedule grandparents to come help for weeks at a time. Thank goodness we have parents who are willing to do this.

Margaret had her first trip to the dentist a couple of weeks ago and it went well. As I suspected, she has enamel hypoplasia on her top front four teeth. So we have to be extra careful with the sweets, juice, etc. And, of course, we need to use flouride toothpaste for extra protection.

Margaret has been going to "school" for about a month now and she loves it. She doesn't even care when I leave in the morning! And before we get there, she is singing her teachers' names at the top of her lungs in the car. (this is very cute, btw) We have received lots of colored pictures and paintings and glue projects from her. Even though I would love to keep every single thing she ever does, I know this is not practical, so we are limiting ourselves to the favorite one of the week.

William... what an amazing little guy. What is he doing, you ask? Nothing too much different but the little things mean so much. We got our very first belly laugh and squeal the other day. I have it on video but I'm afraid to post it as it looks like we are really being rough with him... but he obviously loves it. He adores being jostled and bounced and tossed about. And I love the reaction I get.

He also is improving in his ability to get his fist in his mouth. He can get it there about 1 out of 3-4 tries but then he gets so excited that he gets spastic and loses his hand. If he can just happen to be quick enough to start sucking, he calms down enough to keep his hand there for a few seconds. I've seen him do this a few times and I'm always so happy for him!
Tummy time (over the boppy to keep his arms forward) is going well. The past few days he has started pushing up on his arms some. And yesterday this pleased him so much that he started his "chuckle" and "talk" while he was doing it. Usually tummy time ends because he starts moving his legs like he is crawling and does a face plant. This little boy wants to crawl. I am still trying to figure out a way to help him. I tried holding him at his ribcage, but this just causes him to drop his head and freeze there. I'll keep working on it.

I swear, his vision is getting better. Yesterday he tracked Margaret when she walked through the room. He has visually noticed the TV. I know the structures of his eyes cannot improve but I really believe that his ability to use his vision is getting better every day. We did find out at the second Ophthalmologist appointment that he is moderately farsighted and may need glasses at our next visit in six months. How cute!

So, we are doing really well here. Margaret is a sweetheart and William amazes us every day. Mommy and Daddy are doing well. The house, though, it is a total wreck! (it is one of the last things on my mind these days... )

(I wanted to add that I got Margaret's Proud Preemie shirt from http://www.brightlittlebeginnings.com .)

Harder than I Thought

2007-09-06T08:34:00.001-04:00

As the months roll on, it is becoming more apparent that William has some serious issues with his motor function. We knew this would be the case, but, still, it is very hard to watch your child fall farther behind his peers. Much harder than I thought it would be.

It is hard to see other typical babies around town. Sometimes it even hurts to look at Margaret and think that William will probably never be able to do the things that she does.I have taken the habit of telling the Pediatrician's staff not to ask any developmental questions about William when I bring him for his well baby visits. So I get to avoid having what he is NOT doing shoved in my face.

Yesterday was unavoidable, though. It was time for William's six month review with EI. The questions were terrible even though they were asking them based on his adjusted age of 6 months. I hate saying "no". I did get to say "yes" on some things related to speech and a few "sometimes" answers for a few fine motor things. Overall, though, he is behind. I don't know why, even though I expected it, it is so hard. I've been pretty weepy since then.

I hurt for my boy who wants so badly to do the things he just can't. I can't imagine that it gets any easier as he realizes there are more things he wants to do. For now, he would be happy to be able to hold a toy in his mouth, suck his thumb, or sit up.

Does it make me "anti disability" to wish I could heal him, that he didn't have to struggle? No, I don't think so. It makes me a Mom. I want both of my children to be able to do whatever in life that they choose to do. And today, William wants to chew a toy.

Cerebral Palsy sucks.

Memories of Katrina

2007-08-30T14:10:00.000-04:00

On the two year anniversary of Hurricane Katrina, I am being bombarded with reminders of that time. It was a scary, surreal, and distressing time in my life that I still remember like it was yesterday. So hard to be believe that already two years have passed since then.

When Katrina came through, Margaret was about 4 weeks old and had just started the apnea/bradycardia phase of her NICU stay.

The night before the storm hit, I set my alarm clock for something crazy like 4am and went to sleep worried about what was to come. New to a coastal state, I had no idea what to expect. David and I had planned to get up before the storm came through so that we could get to the NICU and be with Margaret. But there was no need for an alarm clock.

You could hear the thunder hours before the winds or rain started. I laid awake in bed and listened to the ominous sound. Finally, I got up, made a pot of coffee and David and I got ready to make the drive to the hospital. It was still well before daylight when we made the short drive but the winds were already picking up and there were limbs down. Our tiny car was whipped around but not so much that we needed to turn back. Still, my knuckles were white on the door handle.

The NICU was eerie so early in the morning. David and I were the only parents at the hand washing station. Inside it was business as usual except that every Neonatologist on staff was there. At the six o'clock shift change instead of the nurses leaving until their next tour of duty, they checked the available rooms for their sleeping assignment and hoped they liked their roommate.

I only left Margaret's isolette a few times that day. Once, I peeked out the hospital windows and saw the roof of some structure or other was in the courtyard and that power was out everywhere except our hospital. I had seen the flicker when the electricity went out and the NICU went to emergency power. The one time that the emergency power failed for a few terrifying seconds (Margaret was still on breathing support), the nurses were all pointing to babies and picking who would Kangaroo which babies. A nurse and I were preparing to pull Margaret out of her isolette when the power flickered back on.

David and I returned to our powerless house that same day during the early evening. Because we are a little inland, we had not prepared like we should have. We had plenty of candles (because I'm a girl) but our food choices were limited. The first few days of no power were not too bad. Because we were on the west side of the storm, the winds had pulled down some cool air from the north. We only heard bits and pieces about what was going on in New Orleans... most of our information came from the radio and nurses, many whose families had lost everything.

After the first few days, things started to get a little crazy. The airspace above our city was filled with those giant military helicopters. Night and day you could hear them like in a war movie. Suddenly the NICU census increased 100%. Every nurse they had was working and had been there days on end. I no longer could fit in the space next to Margaret's isolette because of all the babies. There were camera crews and news people all over the hospital and in the unit. In the halls were arriving babies from life flight helicopters that landed on top of the parking garage. Nurses crying and apologizing to parents that their babies didn't make it through the flight. There were so many babies that no one knew where the parents were. There were such tiny babies all alone.

As the days went by, I gradually began to see more Moms in the NICU. There were many tearful reunions. One of Margaret's neighbors' Daddy showed up. He was a fixture our remaining days in that pod. The nurses began to be able to get some sleep and things slowly calmed down to near normal, although still very crowded.

While things stabilized at the hospital, our city was in borderline chaos. At least that is how it felt to me. There were stories on the radio about shootings and rapes and armed robbery. Stories of gangs roaming the area where we live. The University was shut down because of rumors that there was so much violence. Most of these stories we know now were untrue. Although a few stores had opened a few days after the storm, the hours were greatly reduced, and they were guarded by the National Guard with very large guns. The shelves of these stores were cleaned out, anyway, most people went for the air conditioning and just to have something to do. People lined up at places to buy ice for hours before they opened. It was nearly impossible to buy any.

The churches began to fill up with NO residents. All of our neighbors were housing people they had never met before. I donated most of my maternity clothes to the shelter housing pregnant women next to the hospital. There were so many people living in their cars. You could see them in the parking lots of grocery stores, mostly. Everywhere, you could hear the hum of generators. Lines to fill up a gas tank rivaled those of the 70's gas crisis. Traffic was terrible. It took hours to go a few miles. Calling someone on a cell phone was futile. All circuits were busy for at least a month.

After nearly two weeks, we finally regained our electricity. I was able to see the images of NO that almost everyone else in the country had seen. I couldn't believe my eyes. I couldn't believe that such destruction had hit so close to my home. The images still haunt me. That entire time in my life still haunts me.

In early November, Margaret was released from the hospital and my entire world became centered around her care. And that is when the hurricane ended for me. However, our city still shows the effects of that time. Our state is far from recovered.

I hope all those babies made it home.

Just Some Pictures of My Sweeties

2007-08-18T10:09:00.000-04:00

And, yes, at 2 she still can fit in the front pack!

Ready to Get Angry?

2007-08-17T09:54:00.000-04:00

Read this story about a family who was sold a lemon!

And if you like, put this link in your blog, too.

The Diagnosis Details

2007-08-14T09:56:00.000-04:00

Look at that sweet boy! Isn't he so cute?

Yesterday we had our third Neurology follow-up since the NICU. And even though we got the CP diagnosis, I did not leave feeling like I had been hit by a truck. I was sad, sure, but my views of CP have matured since his last visit. I'm sure I've still got a lot to learn but now CP is no longer a big looming doom monster.

Our Neurologist (Dr. Hippie) is wonderful. When she examines him, she tells me everything she is looking for and what she finds, how severe it is, and even a little about how she feels it will affect him. The other Neuro we had seen just examined him and then said, "Well, he is showing spasticity and I am concerned about seizures."

During the exam, Dr. H agreed that William's adductor muscles are tight as are his ankles. His hamstrings seem to be okay and his hips are still very flexible. So that is good. William does still have decent stepping reflexes although his legs do scissor quite a bit. This will probably make walking difficult in the future as his knees will probably scissor after his lower legs straighten with age. No big surprise. Wheelchair = okay. Remember? She also said, "His head control is coming along." I nearly cried with joy.

A bigger concern is that he is not able to use his arms or hands for play yet. The doc didn't seem to be too ultra concerned with this right now.

And, of course, my biggest concern has been his head growth. I am happy to report that he had really good head growth since his last visit and is getting closer to the curve! This bodes well for his cognitive function. We were concerned about profound mental impairment. Right now that doesn't seem likely. Hooray!!

We are also going to try wean him from his anti-seizure medication since we will be starting Baclofen in a few months. I pray that he doesn't develop any seizure activity during or after the weaning.

Over the past couple of weeks I can see a huge change in William's behavior. He is "waking up", so to speak. I think he may be seeing better, but I could be wrong. I do know that he really wants to play and not be held so much. I am busy trying to adapt toys to let him be able to play on his motor level and also challenge him some. Like his sister, he loves to rough house. So I frequently count "1, 2, 3" and then jostle him around on the floor. He loves it! I'll try to get a video but since Daddy will have to be here for that, it may be the weekend before I can post it.

I am really looking for toy suggestions you may have. Bright lights, noise, and/or vibration are the things that we look for. I can hold up a toy and operate it for him, it just needs to be obnoxious enough to get his attention and perhaps motivate him to reach and touch it.

Cerebral Palsy

2007-08-13T11:59:00.000-04:00

We have the diagnosis. I will update more later.

About the Video

2007-08-09T23:07:00.000-04:00

I just wanted to say a few things about Margaret's knowledge of the alphabet, numbers, and now some words.

This is not something we trained her to do or even practiced unless she initiated letter play. We do not have a house full of "educational" toys that teach her these things. Nor do we let her watch many of those baby developmental videos.

What we have done is read to her every night and every day starting when she was about 8 weeks adjusted age. From the beginning she has loved, loved, loved books. She seemed very alert and aware of them from the moment we introduced them. Then her PT brought over a book of the alphabet to entice Margaret during tummy time. That was the beginning of her love affair with letters. She would ask us to read that book over and over... many, many times in a row. I hated it. I hid it, sometimes.

One day her Grandmother told me that she knew some of her letters. I thought she was joking. Margaret was about 8-9 months adjusted at the time. But sure enough, Grandy would ask, "Where is the A?" and Margaret would point to an A on her shirt. I was totally blown away.

Her interest in letters intensified through the months and her first words were the letters of the alphabet. I estimate that she knew the alphabet by 15 months but that is hard to know for sure. A few months ago, I decided to teach her numbers and she learned the digits in a few days. That was the only time I have tried to teach her these things.

At 2 years old, she knows her alphabet, capital and lowercase. I had no idea she knew lowercase until the day I filmed that. She also knows her numbers up to about 17, I think. Could be more by now. She only counts to six or seven but she recognizes the other numbers.

This week she has started to show that she knows some words as well. Go, ball, fly, cat, bug. She really shocks me at times.

I don't think this is anything we have done as parents. I think she just has an incredible visual memory. I admit, though, this is a fun "trick" to show off to the relatives.

(top pic is of her at 8 weeks loving a first book at Christmas time.)

Wordless Wednesday... it is Wednesday, right?

2007-08-08T14:49:00.000-04:00

10:38

2007-08-01T22:54:00.000-04:00

Dear Baby Girl,
Two years ago you came into this world. You weren't kicking or screaming but you did give a little kitten meow to let us know of your arrival. It was music to my ears. We sat on pins and needles through your months in the NICU. We hibernated the first winter when you came home. We held our breath while watching you slowly hit your milestones on your own timeline. And now you are two. You are beautiful, hilarious, perfect.

I can't believe the time has passed in one giant joyful blur. Thank you for fighting to stay with us. Thank you for teaching me just how much I can love someone.

I love you with all my heart,
MyMom

Next Week

2007-07-26T15:41:00.000-04:00

My teeny tiny baby is going to be TWO next week. I can't believe it. Where has the time gone?

I'm it?

2007-07-21T20:55:00.000-04:00

I've been tagged by Angela to post eight random facts about myself.

I have to post these rules before I give you the facts:

Each player starts with eight random facts/habits about themselves.
People who are tagged need to write their own blog (about their eight things) and post these rules.
At the end of your blog, you need to choose eight people to get tagged and list their names.

Now the nitty gritty:

1. Both my parents are psychology professors. Makes for an interesting childhood.

2. I was three years into my Biochem PhD when I found out I was pregnant. My major professor fired me when I told her and I didn't really care too much. It was a lot of hard work and late nights wasted, though.

3. I love, love, love fried okra. It has to be pan fried coated with cornmeal. The battered kind is good but just not the same.

4. I lived in England for a short time 20 years ago. I was in college there and I had a blast. I still miss the English breakfasts with a nice hot tea.... mmmm... fried egg, toast, beans, tomatoes, and rashers (bacon). OR some scones, clotted cream, and jam (but that is really a cream tea, not breakfast, exactly). Delish.

5. This summer I got to meet in person another preemie Mom that I met on a message board. It was great to get together face to face after talking for so long online. I also got to meet her little girl... absolutely gorgeous, precious little one. I'm going to try to rope them both into meeting us next summer at Sesame Place for a family outing. And this time I'll remember to take pictures... DOH!

6. I absolutely love old family names. William is named after both Grandfathers, his Dad, his Great Grandmother, and two of his Great Grandfathers. Margaret is named after both Grandmothers.

7. My husband and and I have only known each other for 4.5 years. I had sworn off dating right before I met him. Haha...

8. I'm three degrees of Kevin Bacon.

I tag these folks, if you have time (I tag more than eight. I dare you to stop me.):

Tiffany and ~K~... consider yourselves tagged.

Stephanie
Lisa
Jess
Dwana
Emily
Johnette
Meghann
Amanda
Jennifer

PS... that pic is my Sis.

2007-07-20T16:56:00.000-04:00

Okay, what is THIS about???

Margaret has a new habit. She makes herself throw up. I guess that she finds it interesting... I find it horrible though I try not to give it too much attention.

How does Margaret do it, you ask? She sticks her whole hand in her mouth, fingers fully extended. Gagging is usually followed by throwing up. If it isn't she wiggles her hand around until she gets the desired effect.

Sometimes I catch her in the act. Sometimes she leads me to the scene of the crime by pointing and saying "blaaaach". (she can do this in almost complete silence)

Has anyone ever heard of another toddler doing this? I know they are weird animals and are likely to do just about anything. But as hard as I work to get food INTO her, I hate to see her making it come out this way.

Walking is Overrated

2007-07-18T14:45:00.001-04:00

When I first found out that William had a brain injury, I knew there was another Mom with a son in the NICU who had also just found out about her son's brain malformation. We met in the family waiting area one day, cried together, and shared hugs. It was nice to share stories and those grieving hugs were so comforting.

But there was something about the meeting that has been eating away at me since. When exchanging stories and the prognosis the doctors had given each of our sons, she acted like it was the end of the world when I said that the Neuro thought William might not walk independently. I had shared what I thought were much scarier facts like blindness, seizures, possible severe mental retardation but it was only when I mentioned the walking did she have a negative reaction.

I have been thinking about the average person's perceived importance of independent walking since that moment. I, too, used to have that same attitude. Walking was the yardstick by which I gauged a person's abilities. The truth is, I had never actually THOUGHT about it. But I have explored this topic extensively in the past few months. And, I have to say that now I think walking is overrated.

True, there are many obstacles when you can't walk. I think probably one of the hardest must be when you are a child and come to know that you just can't play in all the ways you want to. In general, however, I think that most obstacles are those that just shouldn't be... things that deal with accessibility.

Accessibility should be seamless. The disabled should be able to live, work, and move in this world seamlessly. And it appalls me that in many ways they can't. What even is more shameful is that I never, ever even gave this a second thought until this year. Like most other abled people, I imagine, I assumed that there were always parking spaces, wheelchair shopping carts, accessible playgrounds and entertainment, therapies, and equipment readily available to those who need it. How naive.

Do I still want William to walk? Of course. Do I still use that as a yardstick? Hell NO.

The post that took me three weeks to write

2007-06-22T08:43:00.000-04:00

Seriously, I started this on June 22 and am now posting on July 13...

Things are going well here at Mom's. I think it is safe to say that the kids (esp. William) love their Grandma. My brother Jason has fallen for William while Margaret has captured the heart of my brother Nick (also a preemie). Of course, my Sis loves them both but I think a little girl is what she is after. Both babies have gotten to meet their paternal Granddad, Aunts and Uncles, Great Granny ("Big Granny"), Great Aunt Vicki, and Great Uncle Richard. There are lots of cuddles and kisses, holding, and gifts for both. Margaret even got to go on a boat trip with GU Richard and Big Granny! She looked so cute in her life jacket! She also had her first trip to the pool which was big fun!

Little Margaret has really blossomed this summer. She has started talking instead of pointing and grunting. And she is trying her best to run and jump. Lots of practice is needed, however. She is so much fun!

The name of her game, however, is mischief- catfood eating, potted plant digging, fireplace crawling, brother smacking, toilet paper eating mischief. She is certainly age appropriate and testing her limits. I will tell her "no" and she will continue to do whatever it is that she was doing, only more slowly and while keeping an eye on me. Sometimes it is really hard not to laugh. And then there is the food smearing. Food is meant to be worn, not eaten. She has taken to "running" whenever I say it is time to eat. I guess she isn't going to be plump any time soon.

William has finally started to calm a bit. I can now put him on his play gym and he will happily play for 10-15 minutes. Glorious for eating breakfast or prying Margaret off some dangerous object. He is sleeping through the night, too! This throws me off because Margaret didn't sleep through until she was 18 months or so. I don't know how much he weighs or his length but I can tell you that his head circumference has increased by 3.5 cm since his last neuro appointment. This is good news... just right. Not so much to imply hydrocephalus or too little to suggest microcephaly. William has also become more social with smiles and coos for everybody! He is so cute.

Motor wise, things remain static with William. Not much head control, has trouble getting hands to midline, nowhere close to working on sitting. He seems to be very hypotonic in his trunk and neck and very stiff in the legs and arms. Arms are a bit stiffer than his legs, even. I understand that his seizure med, Keppra (yeah, he was having seizures afterall), can have the side effect of muscle weakness so I don't know if that is contributing to his trunk/neck floppiness. His favorite thing to do is eat his fist and I want him to be able to do this on his own!!! He works so hard at it and my heart breaks when he cries in frustration because he just can't get his hand in there on his own.

I am also doing better. For those of you who don't know, I have been suffering a quite severe bout of Post Partum Depression with a little bit of Post Partum Anxiety Disorder thrown in to round things out. I had started seeing a Social Worker who immediately sent me to a Psychiatrist. Well, the "screening" and waiting list for an appointment was over two months long. So I am still waiting to get in. But I'm feeling better, meds are starting to work, and I am headed home soon.

BTW, as of two days ago, my actual age is 4-0. My adjusted age remains 28.

If you stuck around this long and are checking on us, thank you!!!

Action!

2007-06-19T16:27:00.000-04:00

Big Fun

2007-06-09T13:51:00.000-04:00

Fisher Price School Bus

2007-06-03T08:30:00.000-04:00

In an attempt to keep Margaret from digging up the houseplants and eating the catfood here at Mom's, I set out yesterday to buy her a new toy. Initially, I had planned to purchase the FP Sweet Sounds Home because it has a Mommy, Daddy, and baby included. She has been very interested in all things baby lately. But when I went to the store, they had none! I poured over the toy isles and finally settled on the FP School Bus, patially due to the many pictures I have seen of Eden and Holland enjoying theirs'.

I expected Margaret to enjoy the bus as she does all the Little People things I have gotten her. What I did not expect was that the bus comes with a wheelchair! I was so excited when I extracted it from the box... (why does it take near-surgery to remove kid's toys from their boxes???)

We are now going on 18 hours mischief-free, so the bus is a hit. She has enjoyed pushing it around and adding riders from her other toys. Right now it is filled with a selection of plastic bugs (Dollar Tree). One of her favorites, a huge black spider is riding proudly in the wheelchair. This makes me so happy. It really is the little things that can be so important, isn't it?

No Time

2007-06-01T10:27:00.000-04:00

Since my husband is taking long business trips this summer, he and I decided that it would be a good idea if I stayed with my Mom for the next month or so. The drive here was a grueling 13 hours- 10 of which were non-stop screaming by William. Margaret was so mesmorized by our new car DVD player that she didn't complain much. I did have to read a new Eric Carle book about a thousand times in a row and do some singing... very easy traveller.

William now will not let me put him down for anything. He must be held 24/7 so I have had no time to update but hopefully he will settle in soon to give me some time to update about the Monkeys.

My Big Girl

2007-05-16T22:24:00.000-04:00

My Sweet Girl, my little love, is walking unassisted. I am such a proud Mama. It was like night and day; one day she was scared to take more than a couple of steps and the next she was walking all around. I still can't believe it when I see her toddling around with her arms in the air like Frankenstein. How far she's come in the past 21 months!

Every day my heart hurts from all the cute. Margaret's little personality is coming out full force these days. I guess it is the willfulness of her age. She is defiant and cranky and opinionated. Then in the next minute she is the sweetest little girl in the world, full of hugs and kisses. I love all of it.

Right now her favorite toy is some magnetic letters David got her from the dollar store. She has been obsessed with the alphabet for quite some time. I estimate that she knew all her letters by the time she was 15 months adjusted, maybe earlier. And now at 18 months adjusted, I'm almost certain she knows the order, too. At first, her extreme interest and skill at learning these scared me. I was a afraid that she was showing signs of hyperlexia. These days, though, it has become apparent that she is truly not showing any other signs of this disorder so I have been able to breathe easier and just enjoy her playing with her letters while repeating their names to herself, "coo", "sssss", "Eeee!!!", "ahh", "exsh", "huh", etc.

Margaret has also learned all of her numbers (digits) in the past couple of weeks. She has a favorite number, seven. She will sit in front of the fridge with the seven in one hand and another letter or number in the other and the two have little conversations. This little dialog invariably leads to her "hugging" the seven between her shoulder and jaw and carrying it all around the kitchen in this position. Other times if I ask her where seven is, she will grab it off the fridge and hug it while cooing like she is loving on it.

I told you, so cute, it hurts.

More Bad News

2007-05-15T07:59:00.000-04:00

I swear, I'm just going to stop taking William to the doctor. It always seems like it is one kick in the gut after another.

I have known for a while that William's vision is not normal. But with all his swiping at toys and tracking things, I had started to get very hopeful that he had a lot of functional vision. Yesterday was William's second Ophtho appointment. It was very dissappointing. When the doctor's first question after her exam is, "Have you applied for SSI?", you just know what's coming next is no good.

His right optic disc now is appearing paler than it had before indicating optic nerve atrophy rather than hypoplasia. She didn't think it would get any worse but couldn't guarantee me that. She said that she approximates 20/400 vision with his better eye (the left) and quite a bit worse with his right. The doctor did not think that glasses would help much, if at all. Add initial signs of Cortical Vision Impairment and his visual prognosis is not promising.

So, he is officially considered legally blind now. I hate this.

Later today, I am going to post some good news!

AhOww...

2007-05-08T18:02:00.000-04:00

Because my Mommy-heart was having problems with the doctor's diagnosis of seizures after the (quite experienced) EEG tech told me that she didn't see anything concerning, I decided to seek a second opinion regarding William's seizures. (Not to mention the prodding I got from all your comments... thank you!)

This second Neurologist (Dr. Hippie from the NICU) said that she does NOT think that he is having seizures. She said his EEG was abnormal but that is to be expected with the scarring that is evident in brain based on the MRI. She wants us to take him off the phenobarbital.... hooray!!! The doctor did say that with his type of damage and location of brain scarring, she does expect that he will have partial seizures down the road, age 2-3. We will cross that bridge when and if we get to it.

None of our Neurology appointments, however, are purely good news or really even mediocre news. This one was no exception, unfortunately. I did get to review William's MRI with the doctor while we were there. No super big surprises, I guess. Bilateral diffuse PVL with ventricle enlargement (right side much worse than left). Moderate amounts of brain scarring (left worse than right, ironically). Thinning of the corpus collosum (kind of goes hand in hand with the PVL). And the worst news, cerebral atrophy. The doc says this isn't terrible, necessarily, and that even a term infant's brain isn't fully developed at this stage. She checked William's reflexes and found that his reflexes were not "horrible" and noted that he was tight through his legs but even tighter in the arms. When she put him on his tummy, he held his head high and then promptly rolled over... I was so proud! William did keep his hands fisted the entire visit but this is unusual for him. I think he did it because the doctor was just messing with him so much.

At almost 3 months adjusted, developmentally, William still seems to be doing okay. I wish his head control was better but he is swiping at his toys very well now when he is on his back. I think he will soon grab one! Because his arms are so tight, he has trouble getting his hands in his mouth but, WOW, he wants to do it so much! I think if I can keep him looser like how the Neuro stretched him out, he will finally be able to eat his hands.

But, best of all, William is now cooing. He has one "word" that he loves to use and really likes to "converse" with me. He says "AhOwww" and then I'll say it and then he will repeat with a big smile. He seems to have a great time doing this over and over and over again. I know I enjoy it.

Dr. Hippie told me that she has a "handicapped" child. I had been told this by someone else but would have never dared to ask her about it. I would love to talk to her about her experiences raising her son, finding therapists, dealing with school issues, having a career, etc. But I feel I need to wait before I get too personal with her. Our relationship is likely to be a long one; I've got plenty of time.

There is so much going on in my life right now I would love to blog about but I am having trouble finding time. It is the end of our insurance year June 30 so we are packing in as many appointments as possible. Very time consuming.

Dang it

2007-05-03T18:46:00.001-04:00

Just got a call from the Neuro and she says that William IS having seizures. We start the Phenobarbitol tonight.... :(

Follow-up Follow-up

2007-04-29T23:40:00.000-04:00

Why do I feel like shit after every meeting with a Neurologist? Seriously. It feels as though Dr. S has sucked my essence right out of my body. She was a new Neuro for us. Younger than Dr. Hippie from the NICU... probably about my age. She was pretty. She had hair that gets washed more than twice a week; eyes than have slept longer than three hours at a time this year. Her mouth was a black hole that espoused words I knew were coming but never wanted to hear. And then there were the bad surprises.

Things I knew were coming: William is showing spasticity in his legs. They are scissoring and are certainly affected by his brain injury. He is not attending the midline like he should be at his adjusted age and his head control is still not very good. His movements were described as "mirror movements"- his left and right sides move in unison. At this point he should be having more reciprocal movement.

Bad surprises: Dr. S thinks he is having seizures. William breathes very fast and yawns a lot. The doctor thinks that the yawning might actually be a form of seizure. Also, the worst news, William's head is not growing as fast as it should. Absolutely the last thing I wanted to hear. For those who do not know, poor head growth = poor brain growth and a poor prognosis for his cognitive abilities.

Diagnosis (for now): spasticity
Future testing: EEG on May 3, MRI on May 3

Not looking forward to that MRI. It will be his first. I'm not sure I really want to know what it will tell us.

I'll admit it

2007-04-23T14:54:00.000-04:00

I am walking a fine line psychologically lately. I'm sure that it is partially due to exhaustion from my recent illness and the illnesses of my children. And then there is William's first Neurology follow-up on Friday morning looming out there. Certainly doesn't help.

Mostly, though, I think I am having a hard time finding balance these days. William's extreme need for holding, bouncing, rocking, singing has left me little time for my precious Margaret (or my husband or myself). I can see in Margaret's eyes how much she misses me and how sad she is sometimes when she wants to play/cuddle/just be with me but I can't because William is screaming his head off. I miss her so much. She has even started pushing me away now when I do have time to spend with her. She will whine and try to smack me until I leave her alone. Makes me so sad.

And William's appointment... Let me just say that I love William's (Margaret's) physical therapist. She has moved her schedule around so that she can go with us to the Neurologist on Friday. I know that this is a wonderful thing to have her want to be so involved with his therapies. But, honestly, it kind of scares me. Yes, I can tell that he has issues but it makes me wonder if he is very severe for the PT to care about coming so much. I am just going to hope that this is because she genuinely cares about us and not because she is super concerned about his future abilities.

Developmentally, William is doing okay for his age, I think. He does have tone issues. And his legs are already scissoring. But he can lift his head and chest up during tummy time without relying too much on his his high tone. He has started to swipe at toys when he is on his back. Lately, too, when he brushes his hands on something, he grabs (always misses) and brings his hands towards his mouth. One day a week or so ago, he actually got his thumb in his mouth (with some side lying help) and sucked it like mad. Ever since, he has been trying like crazy to get his fist to his mouth. His head control is still not the best but I'm wondering how much that has to do with his vision. When he is on his back, he tends to look to the right or left instead of holding his head at midline. He CAN do it, but I think that since his vision may not be the best, he doesn't have any motivation to hold that "hard" position.

Vision wise, he seems to have improved over the past couple of weeks. He doesn't whip his head around as much any more and he seems to be able to find my face some of the time now. I still have to make noises to get him to look for me, but he at least can see where I am. Every now and then, he will even look at my eyes.

Margaret floored me a few days ago when she walked across the room. She hasn't done anything close since... hopefully soon. I think that the antibiotics she is taking have made her feel not-so-hot and she has been a bit less active. When she gets better, I hope that she will be up to more walking. Her snail's pace has me always on the edge of my seat.

... I will add pictures later when I have a few more minutes to spare...

Fifteen Blankie Day

2007-04-09T16:32:00.000-04:00

Margaret is a Blankie Girl. She doesn't have one particular blanket that she loves, rather she loves all Amy Coe flannel receiving blankets (sold at Target). She has about eight of them which is good because she likes to have a clean one whenever she has a nap or goes to bed. We keep them on a shelf under her changing table so that she can get a new one whenever she feels like it. On days when she is feeling bad, she will get two or three blankies and carry them around with her. I can usually tell how sick she is by how many blankies she has with her.

So last week, the plague started. Margaret was hit first and hit hard. She was the most miserable I have ever seen her although her only symptom at the time was a fever. Tuesday she came out of her room carrying a record seven blankies, a huge pile. For the rest of the week, she felt better but still not great. Her fever subsided and became nasal congestion and a nasty cough. Today, she is showing that her ears are hurting again. It is a four blankie day for her.

Mommy got the plague second. Same thing as with Margaret, a fever (102.5!) and achy all over. Now I've got a nagging cough and nasal congestion. The first couple of days, I felt worse than I have in a long, long time. But now I'm down to about four blankies.

Poor William is on his second or third day of the plague. He is having a hard time. Throwing up every feed and all his meds just makes him feel even worse. Add a terrible diaper rash and you just have a miserable little baby. I wish Margaret's blankies could make him feel better. He'd need about seven, I think.

I'll be so glad when this passes. Summer can't come fast enough.

Grief

2007-04-06T16:04:00.000-04:00

After William's diagnosis, I was completely annihilated. There were several days that I had to give myself a pep talk every time I needed to do anything. My need to care for Margaret is what kept me functioning on any kind of level at all.

The day the Neurologist told us he had PVL, David and I had shown up at the NICU early. We knew that the ultrasound from the previous day had shown abnormalities in his white matter and I wanted to speak with the Neurologist in person about his diagnosis. I could see the surprise in the Neurologist's eyes when we walked in as she was preparing to examine William. The director of the NICU was also there; he had been the one I talked to the day before about William's ultrasound results.

The funny thing is that I can't remember a lot about what the Neurologist said. What do I remember? I remember crying. I remember my husband crying. I remember the look of sadness on the director's face (he is also a Neonatologist). I remember that the Neurologist was acting very nervous/uncomfortable. I remember the group of nurses quietly watching and listening to the scene in front of them. I remember there was another Mom with her baby in the pod with us at the time. Her baby was a tiny, tiny one and had been on the vent for a little while. She flashed me a concerned half smile that clearly said she was sorry about whatever it was that was going on. I remember hating her and her "perfect" baby. I wanted to scream at her. Then, thankfully, I remember William's nurse urging me to hold him after all was said and done.

Since that time I have been grieving the loss of my "normal" son. I know there are supposedly five stages of grief and I can say that now I'm firmly in the "bargaining" stage. It is different that I would have anticipated. No, I'm not making deals with God.

My experience is that I am weighing what would be "good" or "bad" as far as his outcome. And depending on my mood, the day, the second, things can get moved back and forth in my mind. In my mind I explore every iteration of his potential disability and try to decide if that is better or worse than the last scenario I thought up. It is enough to drive me crazy as there seems to be no limit to the outcomes I can imagine. I imagine that I can live with the "good" outcomes but not the "bad" (I know this isn't really the case, though). At this point my "good" scenario is spastic diplegia cerebral palsy, limited field of vision but okay acuity, cognitively okay. I've recently added "wheelchair" to the "okay side" in my brain. The cognitive outcome possibilities are where things get dicey for me.

In addition to this bargaining, I am also constantly on the lookout for "signs" that he is going to have problems with his legs, his arms, his vision. I wish that we hadn't found out about his PVL until he started falling behind... it would have been nice to have time to enjoy him without all this weighing on my mind.

Most of all, I just wish someone could tell me how much he is going to be affected by his brain injury. But no one can. Not even a best guess. And that drives me batty.

Three Things

2007-04-01T15:27:00.000-04:00

Three things have recently made a big impact in the life of my daughter. At least she thinks so...

First, we have Squiddo. I had been eyeing this toy for a little while and asked my husband to look at it when he went to the store last weekend. Yeah, he came home with it. I just think it is so cute! It is a neoprene "squid" with a zipper container as a mouth. Inside the mouth you store four "squid baby" train cars that hook together by magnets. Also included are tracks for the "train" and a rope/magnet device that you can use to pull the cars on the track.

Margaret LOVES Squiddo. She frequently carries him around and they have many adventures. He also gets lots of hugs and kisses. Sometimes in the evening when I am cleaning up, I'll hide him in a place that she is sure to look so that I can hear her squeal with delight when she finds him! The Squid is also good for tummy time for William. It is big and bright enought that it gets his attention and motivates him to lift his(giant)head. I love this toy.

Second, we have our new play pool. Margaret is a water girl. Bath, sink, rain, sprinklers are all causes of celebration and this pool has put her over the edge. She absolutely loves it, especially the squirt-y parts and the slide. I love watching her in it, playing until she shivers. And she still cries when we take her out. Yes, it is already summer here!

Third, is Margaret's new toddler bed. Since she doesn't sleep in her crib, we decided to take it down and get her a toddler bed. She doesn't know what to think of it yet. And I'm unsure about how to get her to sleep in it, but she certainly is enjoying climbing in and out.

Putting it together was big fun, too.

First Smile!

2007-03-29T10:35:00.000-04:00

My babies are working really hard this week!

William gave me his first awake smile this morning. For a while he has been yawning whenever he looks (can find) me and I thought that was really weird. He'd meet my gaze and immediately yawn. David had wondered outloud if maybe William was trying to smile and getting mixed up. I'm not sure if that is what it is but this morning William found my face for a second, gave a little smile, and then promptly yawned. I gave him a kiss and then he did it again.

I'll try to capture this if/when he does it again but you know how hard it is to catch a fleeting grin on film.

First Step

2007-03-25T00:54:00.000-04:00

I'm am so excited! Margaret took her first step to her Daddy this evening. It took a LOT of coaxing and she just took one... but HOORAY!!!! She didn't even have on her Dafo PattiBobs to help her feel more stable! I'm so proud of her!

Muffin Man

2007-03-21T13:35:00.001-04:00

I'm not sure if I have mentioned it before, but William is a projectile vomiter. He projectile vomits two or three times a day and spews vomit several feet. Old Faithful, I call him. Even though he vomits (not spit up) so much, he has still been gaining weight very well. The last time he went to the ped, he had gained a pound in the previous thirteen days. So we hadn't been too worried about the vomit. But now, in addition to the ear infections, he seems to have a very hard time eating and I hear what sounds like him refluxing as he is taking his bottle. The past few days it has affected how much he eats and he is really fighting the bottle. I'm not sure if it is reflux (what it sounds like to me) or if he is having trouble sucking because of the ear infections and is swallowing a bunch of air. It worries me and I am going to take him to the doctor asap.

I think William is also showing signs of his vision impairment now. He seems to prefer to look at objects by turning his head. He also seems to have a hard time locating objects that he hears unless they are moving. Thus, he loves to stare at my mouth. When looking around, he seems to get easily overstimulated and starts to panic and whips his head from side to side. His next ophtho appointment is in six weeks so I hope she will be able to give me some idea how much he sees at this point and if the other behaviors are signs that he is having trouble seeing.

William is also very hypertonic. He is often stiff as a board and I can lift him with one hand. I'm pretty sure that the bulk of his stiffness is because of his reflux. He is not, however, showing any spacicity yet. The Neuro said not to expect to see any spastic signs until about 3 months adjusted. Right now he is only six weeks adjusted so we have a while still.

On a good note, I can tell he is getting ready to smile at me. He is still very serious but every now and then when I am singing a silly song to him, I swear he is going to smile at me. He is also good at tummy time and his head control is getting better (when he isn't whipping his head around).

Margaret is starting to show that she likes William. Whenever I ask her about him or she sees him, she gets a big smile on her face. When she is feeling especially social, she tries to "feed" him whatever she has on hand. Sometimes it is the fish food or the saline nose drops. One day after changing him, I stepped into the kitchen to throw away the dirty diaper. Upon my return, I noticed that William had a Cheerio stuck to his mouth. Margaret was sharing her precious Cheerios. So cute. (please note in the picture the broken monitor wires... I'm so bad.)

Eat In Chicken

2007-03-20T22:28:00.000-04:00

The Zoo

2007-03-20T00:26:00.000-04:00

This past Saturday we took Margaret and William to the Zoo. Margaret liked the animals but her reactions were a little different than what I expected.

Of course, the animals that were not moving might as well been invisible. I just could NOT get her to see a cheetah sleeping in the grass. On the occassion that she did see the sleeping animals, she was unimpressed. By far her favorites were the white tiger, the elephants, the macaques, and the macaws. She seemed very cautious, though, rather than the over the top excited I was hoping for. Still, she really had a good time seeing the animals and a better time watching hoards of boy scouts running wildly all around.

William slept in his sling like an angel the whole time.

Man of the Year

2007-03-14T13:12:00.000-04:00

I am so lucky to have married a man as wonderful as my husband. I know that in this blog, he gets passing mentions but in our life he is the rock. He is the one who calms me when I can't take another minute of William's screaming. He is the one who comforts Margaret when she wakes in the middle of the night. He is the one who is eternally optimistic about our lives and our children. He listens to my deepest darkest feelings and secrets and doesn't think I'm a bad person. He is Daddy.

Daddy changes diapers, feeds babies (even really hard to feed babies), does laundry and vacuums, kisses away tears, is the best play buddy, and takes care of Mommy. He knows all the medications and proper dosages. He knows how to mix 22 calorie breastmilk and how to judge if nipple flow is correct.

People think I am a strong person, a good Mommy. And I do my best. But the truth is that my best wouldn't be half as good if I didn't have my husband's love and support.

There are no words to express how deeply grateful I am to have you as my partner in this not-so-easy life, David. A lesser man would have crumbled. I love you so much.

Happy Birthday, Daddy.

Appreciation

2007-03-13T11:07:00.000-04:00

As a preemie Mom, I have appreciated every single milestone that Margaret has accomplished. She has done such a great job for a baby who "will never make it". Thinking about how she came into this world has only made me more aware of every little advancement in her skills.

But, let me tell you, having a baby who has a prognosis of disability makes you appreciate every single fraction of a milestone. I've heard them called "inchstones" and there couldn't be a better word to describe them.

So, today I celebrate William's inchstones:
Holding head at midline when he is on his back!
Sucking on his fingers
Staring at the toys on his play gym
Reciprocal kicking
Hands in open, relaxed posture
More flexion than extension

What a good baby!

Sugar Kisses

2007-03-10T22:57:00.000-05:00

My oral aversion baby gave me her first kiss tonight. I had been waiting for 19 months, 1 week, 1 day, 22 hours, and almost 30 minutes for that moment. It was wonderful.

My Evolution

2007-03-05T14:42:00.000-05:00

Evidence 1: This morning I went to CVS armed with $20 of "CVS Bucks" to spend. I had vowed to buy something for myself because it has been so long since I have purchased a little "treat" just for me. Well, I scoured CVS and could find NOTHING to buy for myself... so what did I spend my money on? Diapers for Margaret and a few little things for her Easter basket.

Evidence 2: On the drive back from CVS, "Sweet Caroline" came on the radio. I started singing with it and turned it up all the way. Yep, Neil Diamond.

Evidence 3: During my adventures this morning I was dressed to the nines. No makeup. Hair pulled back. Gray knit pants, black velour hoodie, comfortable shoes.

If ten years ago me saw this morning me, she would have said, "at least she's wearing black."

(No Longer) Baby Girl

2007-02-28T17:16:00.000-05:00

I have been mourning the loss of Margaret's babyhood. She has become such a little girl instead of a baby in so many ways now. Don't get me wrong, I love, love, love this stage. She is cuddly and independent and funny... I just miss my little flirty baby. Makes me weepy to think about.

Margaret is almost walking. We are getting very close now, even her PT (physical therapist) thinks so. On loan we have been using a gait trainer to help her learn faster. She LOVES it and has walked so much with it today that we have wiped her out and she is ready for bed now at 4pm.

Because of her new mobility, we have a milestone to report: First skinned knee. She was so upset about it and so cute. And, yeah, she HATES Band-Aids.

Ophthamology Update

2007-02-28T16:39:00.000-05:00

I took William for his ROP follow-up appointment last week. Anyone who has ever taken their child for an ROP exam knows how stressful and horrible it is for not only the baby, but the parent who takes the baby. For those who don't know, I will spare you the details but know it is one of the worst things I have had to do with either of my babies. Much worse that IVs or catheters, in my opinion.

Anyway, other than the general nightmare of the exam itself, it was a pretty good appointment.

As I expected, Williams ROP (was stage 1) has resolved and will be a non-issue regarding his vision.

What I didn't expect was the words "I don't even know that I would call it Optic Nerve Hypoplasia" to come out of the doctor's mouth. Explanation: With William's type of brain injury (PVL), there is a specific phenotype of ONH that is usually observed. During the eye exam, this is seen as a large optic cup and/or small pale optic nerves (which indicates that the nerve is not made of healthy tissue).

After the doctor examined William, I asked about his ONH. The doctor explained that his nerves are pale but there is a ring of healthy pink tissue around them and a little in the middle. She said it is hard to tell if the cups are big or not and while his nerves are not exactly normal, she doesn't know if it is really ONH. I couldn't believe what I was hearing.

Meanwhile at home, it is apparent that William can see. To what degree we won't know for a while. But he is attempting to track objects and focus. I can tell that he will have a bit of strabimus with his left eye but that is no big deal to fix, usually. I am absolutely thrilled that he can see and that he has some healthy tissue!

Atypical

2007-02-21T23:14:00.000-05:00

Even with William's diagnosis I have been able to somewhat treat him like a "normal" baby. That's why the past few days have been so hard for me... the first evidence that William is not a typical baby has been thrown in my face. And we had to start him on medication that is not normally given to babies/children. Giving him that first dose was so very hard. I feel like a failure. I failed to protect him from whatever it was that caused his brain damage. Everyone says it is not my fault, but who else's could it be? He was INSIDE of me. I am the one who is supposed to protect him from everything bad. I failed miserably.

Happy Mardi Gras

2007-02-20T23:36:00.000-05:00

Had a wonderful weekend! Did we do anything Mardi Gras related? Nope.

My Mom, brother, and sister-in-law were in town for a visit. Sunday my family took care of the children giving David and me a break. He and I went to a hotel, ate chili dogs for lunch, took a nap, spent some time in the whirlpool, took showers, and then another nap. It was the best gift I've ever been given, hands down. What a great day it was!

Of course, as soon as we got back to the house and my family left, it was bedlam again. Margaret would NOT go to bed and ended up staying up til almost midnight. And William started screaming even though he had been an angel all day. Figures.

Margaret has started standing and she thinks it is big fun. She would be much more successfull if she didn't wave her arms around and clap instead of using them to attempt to balance. But it is so cute, I can hardly bear it.

Year of the Pig

2007-02-19T21:17:00.000-05:00

Piggy. Seriously, this child at 3 days old (adjusted for prematurity) is eating 24 ounces of 22 calorie breastmilk. I'm unsure how much he gets on top of that with the nursing.

I'm not sure what to do with a child that eats... this is totally new to me. William eats at least double what Margaret did at this same size and age. Yet, his growth is nearly identical to hers. All I can figure is that he is using a lot of extra calories with his screaming.

I hope his eating enthusiasm transfers to solids... how nice would that be?

Monitor Compliance

2007-02-17T22:52:00.000-05:00

I admit it. I am terrible at the apnea monitor. I hate the stupid thing and I don't want the extra "peace of mind" that it is supposed to give me.

William has lots and lots of loose lead alarms- usually just after he has gone to sleep after screaming for an hour or two. All the jiggling and rocking and patting causes his leads to become a little loose and the machine goes crazy. I hate it. So I turn it off not to wake him and then I forget to turn it back on. Bad Mommy.

The other night we lost power due to a drunken college student taking out a telephone pole near our house. The battery on the monitor was low before we lost power and then I couldn't charge it for a few hours after that. Can they take my baby away for being so monitor non-compliant?

I also don't like being tethered to it. I bought an awesome sling and I don't use it as much as I'd like because I would need to also carry the monitor around. Blah.

I can't wait to be done with the thing.

I can't resist

2007-02-13T23:12:00.000-05:00

Presented for your evaluation... Margaret's version of The Evolution of Dance. As seen in the video we have her four "dances":

1. The booty bop
2. The clasped hands side to side rock
3. The "casting a spell" (my absolute favorite!)
4. The leg kick

(music courtesy of Dressy Bessy)

Some good news, finally!

2007-02-12T22:21:00.000-05:00

A picture says a thousand words...

Tummy time: check out that head control!

William is cross eyed here because he is trying to focus on a rattle we are shaking!

Yeah, I cried.

Home again, home again

2007-02-12T22:04:00.000-05:00

William was released from the NICU on Saturday night with no answers other than he does not have NEC. That is good enough for me! I have doubled his Miralax dosage as per his Ped and he has had a few successful poops today. The very strange completely desiccated poop "flakes" seem to be mixed in with his now normal looking breastmilk poop. I have a referral to a pediatric GI and I plan to take William for a consult as soon as there is an opening.

All the good pooping seems to have made William a little happier. He actually let me sleep two consecutive hours last night without holding him. It was lovely.

What I want to know is how in a week's time he has gone from sleeping on his own in the NICU to not being able to sleep unless he is on my chest??? Is it just a rough transition for him? Or does he have my number already?

Margaret seems to be warming up a bit to William. She now approaches him with a grin, uncovers him and touches his body (much more gently than she touches the cat!). I'm greatly relieved.

Say goodbye to the NICU forever???

2007-02-09T22:16:00.000-05:00

Nope.

William has been re-admitted. Over the past few days his fussiness had turned into hours upon hours upon hours of screaming (not crying). I took him to the Ped and coerced her into ordering an Xray of his bowels... results: not normal. Dilated intestines and possible NEC.

Right now all his bloodwork has come back okay. They finally allowed him to eat a couple of hours ago. Tomorrow, more Xrays, consults, etc. I'm hoping that they figure out what is going on with him and we can get the heck out of here SOON! Keep us in your thoughts!

Question for all the Mommies...

2007-02-09T00:22:00.000-05:00

Does Chocolate Pediasure make baby's BM very dark brown/black?

Thank you for any info.

Love,
Paranoid Mommy

Google Find

2007-02-08T00:53:00.000-05:00

While using my pumping time to google "colic", I found this post in the blogisphere:
Acquainted with the Night.

This is exactly how I feel about my little girl growing up (but written much better than I ever could).
(Preggos be warned... tear jerker!)

OMG

2007-02-05T00:21:00.000-05:00

I am beyond exhausted. This baby boy is F.U.S.S.Y. I'm only getting about an hour and a half total of sleep a night because he gets started screaming at about 11pm and goes until about 6-6:30am.

Our Ped has switched us to Prevacid and I'm hoping that in time it will help with some of his screaming with his bottles... I'm pretty sure that his little esophagus is raw from the refux and will need extra time to heal before he starts feeling better.

He also is having a VERY hard time (no pun intended) with his BMs. In the NICU, he was pretty much glycerin dependent and it hurt him terribly to go because it was so firm. I know that he had his last BM in the NICU on Wednesday and he has been trying to go since we brought him home. He started Miralax on Saturday but it can't soften what was already in the colon so we have to wait for this first BM to pass before the Miralax makes him more comfortable.

I just want a little sleep...!!!

And Margaret isn't adjusting to the baby very well at all. She seems downright depressed even though I have spent every moment that I'm not trying to get William to settle down with her. We've had lots of one on one play time and plenty of cuddles but she still just seems so sad. It breaks my heart and I feel so guilty. Am I a bad Mommy for having William while she still needs me so much? Do I have the skill to be a good Mommy to two babies so close in age? I'm having serious doubts about myself these days...

I know everyone wants to see pics of our new addition. So here are a couple from the last few days.

He's Home!

2007-02-01T22:53:00.000-05:00

William made it home today at about 2 pm and proptly started refusing to take a bottle or nurse... because he knows this is the one thing that really freaks his Mommy out! It's like Margaret whispered in his ear what to do to upset me. I'm trying not to get all wound into a big ball of nervousness and trying to remember that this is a big change for him, too. Hopefully tomorrow he will decide that I am okay for food.

Margaret doesn't have much interest in William other than wanting to be held while I am holding him. She also seems annoyed when he decides to cry. Other than that... nothing.

Today was the day for David's scheduled elective surgery. So he is totally out of commision for the next 48 hours. I can tell he feels bad for not being able to help out.

Tomorrow morning is Margaret's 18 month well baby visit. I'm hoping the shots don't cause her to be uncomfortable for the rest of the day.

I'll put up pictures tomorrow! ...exhausted already...

As Promised...

2007-01-30T17:25:00.000-05:00

Sorry, I'm a day late... I'm a little busy!

I've been getting a lot of questions about how nursing is going and I am so happy to report that it is going well!!! Today he took his first full feed from the breast and there are no words to explain how happy this makes me. William is a great nurser unlike his sister who refused me with everything she had. I hope I am able to transition him to all nursing within a few weeks! The lactation consultant I see is encouraging me to take it slow. I'm so ready to get rid of the stupid pump! I can't believe I pumped for nine months with Margaret... I don't think I could do that again.

And, yes, he is still coming home on Thursday!

By George, He's Got It!

2007-01-29T15:11:00.000-05:00

My big little boy has decided he has had enough of the NICU and has started gulping his bottles down! As of this morning, he is on full feeds by mouth and doing well! He has to pass his carseat test, get his immunizations today, have a follow-up eye exam tomorrow, and then he is ready to go. Mommy and Daddy need to take the CPR refresher, get his meds filled, learn about his monitor, and decide if we are going to room in (don't have to since this is #2 preemie).

I love today's milestone. It is one every NICU Mom can appreciate: first time without tape on his face. Pictures will be uploaded later today!

Rock, Paper, Scissors

2007-01-28T23:14:00.000-05:00

Before I was a Mommy, I had no idea. None. I never knew that although I was having the time of my life (for nearly 20 years!), that your baby laughing trumps all else. Seriously. There has been nothing better in my entire life than my baby laughing. I can't wait to add a second baby laugh to my life.

Well, that stunk

2007-01-25T21:54:00.000-05:00

Let's just leave it as Margaret doesn't do well when she comes out of anesthesia. They told us to expect her to be "fussy" for half an hour after they placed her tubes. Not our girl, she was hysterical for close to two hours. She refused to eat (even though she hadn't eaten in nine hours) and then just kind of "passed out" from crying so much.

When she woke up, she was still a little upset so I gave her another dose of Tylenol and a bottle. Margaret calmed down enough to cuddle with me on the floor while watching Monsters, Inc. for a good chunk of the afternoon.

Monkey girl must be feeling pretty good now, though, because she is orchestrating the room while shouting. She should be sleeping. I should be sleeping.

Margaret in her first hospital gown (before surgery):

After surgery... very upset baby:

William and Daddy (for good measure):

This explains a lot...

2007-01-22T22:58:00.001-05:00

My Fortune Cookie told me:
Your doctor is looking unsteady because he has been hitting the gin.
Get a cookie from Miss Fortune

I'll see your ear infection...

2007-01-21T19:14:00.000-05:00

and raise you a double ear infection and a ruptured eardrum. Yowch. But at least they gave me good pain meds.

What a Winter

2007-01-21T08:49:00.000-05:00

Daycare sucks. Margaret is still sick in addition to STILL having her ear infection. We have scheduled her appointment for tube surgery this Thursday.

In addition to Margaret being sick... I am sick again. And now I'VE got an ear infection. Right now I'm pumping and waiting for time to go by so I can get David to take me to Urgent Care (it opens at 9am). I don't think I've ever had an ear infection before... let me tell you, NOT FUN!!!

I'll be so glad when William is home and I can say goodbye to the NICU forever, take Margaret out of daycare, and hopefully have a healthy spring!

Climbing and Signing

2007-01-18T23:20:00.000-05:00

Today Margaret showed me two new skills. She can now climb up on things that are the right height... namely the middle part of the sofa where I have removed the cushion.

Also, out of necessity, she is now signing and saying "down". She is so stinking proud of herself and gives me the biggest grin when she knows she has it right. Now, this isn't one of the signs we have been working on forever... I just looked this one up a few days ago so that she could use it when she gets stuck somewhere. I never expected her to learn and use it so rapidly. Especially since she has never signed anything other than "milk" even though we've used a handful of other signs for the past several months. (Right now she is so excited about her skills that she will not go to sleep!)

William and I have started attempting to nurse. So far he has done better than Margaret ever did. He will actually latch on and suck and swallow! I'm very hopeful that I will be able to nurse him!!! He still is not doing very well with the bottle... and this is our last hurdle before he can come home. I anticipate he will be in the hospital for at least another couple of weeks.

Little Monkey vs. Littlest Monkey

2007-01-15T21:28:00.000-05:00

Do they look alike?

I think so!

Let's talk about Margaret

2007-01-12T23:56:00.000-05:00

My sweet little monkey now has, count 'em, eleven teeth. ELEVEN! Somewhere in the madness of the past couple of months, she has managed to get four molars and just today I have noticed that one of her bottom front teeth has finally come in. Toothy.

Also, I am almost able to brush her teeth now. She lets me put my brush in the front part of her mouth and brush the top front and bottom. I really want to get to those molars but I'm not sure how I will be able to do that any time soon.

And the age of the meat stick is nigh. We have tried these things every now and then trying to get some protein into our munchkin. But until today she only thought they were fit for squishing. I was so lazy with her lunch today that I decided to try again since we have three jars left of them. She ate three! Since she did so well with them, I decided to try another frequently rejected food, cereal ("Nutragrain") bars. To my shock, she ate that too! And then she sorted the green beans to the far corner of the highchair tray. We now can add two foods to her repertoire that aren't deep fried or consist primarily of sugar. Nice!

She has also FINALLY started cruising. She does this with much trepidation as she is not much of a risk taker. She also doesn't feel entirely comfortable moving her formally inverted foot around in different directions so that she has to put weight on it in ways she isn't used to. But every single day I can see an improvement. I feel that walking is very close.

And poor Margaret has had a severe ear infection for the past three weeks. She just finished her third round of antibiotics... the serial injections. On the third day, the ped said the infection had not cleared up as much as they usually see and if she is still in pain on Monday to bring her in so that we can schedule have tubes placed. :( I know it is so common but I still hate to think about it.

She is growing up so fast. Too fast. Today I held her in my lap most of the day and tried to savor every second of her still being little and Mommy being the most important thing in her life. It is so unfathomable how much you love them, isn't it?

Alphabet Soup

2007-01-11T23:08:00.000-05:00

We have yet another diagnosis.

A couple of days ago William was diagnosed with Optic Nerve Hypoplasia. He will likely have vision impairment that could be as severe as blindness. It is impossible to tell how he will be affected by ONH... it is another wait and see game. Unfortunately, this type of vision impairment is not such that glasses would be of use.

What scares me is that this could be an indication of how severe William's PVL is. I also worry about the development challenges of not only dealing with cerebral palsy but also being vision impaired. I want William to be as independent as possible but now I am so worried that these two diagnosis will make independence very hard for him... Ugh.

I'm drowning in Alphabet Soup.

Growing big

2007-01-04T14:04:00.000-05:00

Mommy is still having a very hard time but William seems to moving right along.

He is gaining weight like a champ and every day looks more and more like his sister. He is five and a half pounds and 18 inches with a double chin, chubby thighs, and arm rolls... a very cute little baby. William is actually big enough, now, for commercial preemie clothes! It may even be getting close to time for Newborn sizes! ...like his diapers- newborn!...

William has moved out of the NICU and into the Special Care Nursery and has one of the covetted bays with a curtain so we can get some privacy.

Still only taking one bottle a day. Since Margaret had such a hard time with the bottle, I'm more than patient for William to "get it". My sanity isn't riding on every single bottle he takes and I understand it may take him quite a while yet to go all the way to only oral feedings.

William has made it off oxygen now. He seems to be doing really well and has had no a/bs since coming off. And now that he doesn't have that cannula, I have requested all NG feeding tubes instead of OG. After all the oral aversion problems with Margaret, I want to cut out all the risk factors that I can.

He also had his hearing test today and passed. So we know that his ear is in working order. Now we pray that his brain can process the information from his ears!

No new update about his brain injury nor do we expect any.

Pictures as soon as I upload some new ones...

Update

2006-12-26T22:10:00.000-05:00

I will tell you what the neurologist told us.

The PVL is independent of William's IVH (brain bleed). It is also not a result of his prematurity and that the injury occured sometime in utero around 26 weeks. It is terrible to know that he may have been better off if he had been more premature.

His PVL is not a mild case and he most likely will have cerbral palsy... 95% likely. She noted that a motor reflex of his (sorry, can't remember which one) is already abnormal and indicates that there is motor involvement with his brain injury. She said we need to hope that there is no cogintive involvement.

So that's it, in a nutshell.

It didn't go away

2006-12-22T04:07:00.000-05:00

I was hoping that somehow when I went to bed all the bad would go away- that I would have been dreaming this whole time rather than it being my new reality.

Yesterday we got some very, very bad news about William. In the lottery of things that Preemies are at risk for, this is among the top of the list of things I never wanted to hear in the same sentence as his name.

William has periventricular leucomalacia, or PVL. It is a rare brain injury that usually leads to cerebral palsy. I can't believe I had to write that. I am so absolutely terrified for my boy, for my family.

We have yet to speak to a specialist about this and hope that what William has is the milder form of damage. But I am frightened by the way the neonatologist spoke about it yesterday... that it is the most devastating type.

Please pray for my son. Please pray for my family.

2006-12-20T16:57:00.000-05:00

William is back on CPAP.

Santa

2006-12-16T16:41:00.000-05:00

This morning we took our sweet baby girl to the mall for a picture with Santa. That's right. Germ phobic Mama takes still recovering preemie to the mall to be handled by someone who has handled other germ-bags all day long! My need to have a picture of my dressed up daughter screaming in the hands of a bearded stranger won over the paranoia.

We were almost successful getting the classic screaming baby photo. But Margaret only screamed for about 30 seconds and they didn't take the picture fast enough. (I guess most parents want their kids to smile?) So the resulting picture is of Margaret as stiff as a board looking slightly uncomfortable and a little blotchy. Santa, on the other hand, looks completely evil. I couldn't have hoped for a better picture.

(will post pic as soon as I can get dh to scan it... how did I go from being able to program in C++ to not being able to operate our scanner????)

A rough patch

2006-12-16T00:49:00.000-05:00

Mr. William is through his "honeymoon" period at the NICU and has started working through some typical preemie issues and giving his Mommy a hundred heart attacks.

William had to be put back on a high flow cannula after his room air trial. He started to have lots of apnea/bradycardia episodes and is continuing to have many of them a day. I'm hoping this is all short lived and we can get on with the business of feeding and growing.

His weight is up to 3 pounds and 11 ounces so he is still gaining well. He has also stopped having any problems with the HMF, thank goodness. I really didn't want to have to battle about that. I am very lucky that our hospital does not release babies on fortified bm... so he will be weaned to non-fortified milk before discharge.

I'm watching the timing of his a/bs carefully to see if there is any connection between them and his feeding... just in case he is refluxing.

One more week until his next cranial ultrasound. He should also begin attempting to nipple (bottle feed or breast feed) next week. I'm hoping these things go well.

Margaret, David, and I have all been sick. I am starting to feel better now but Margaret's lungs still sound pretty bad. David has started his third round of antibiotics today.... I'm hoping that he starts to feel better soon.

Monkey Update

2006-12-10T09:17:00.000-05:00

Our little one continues to do very well. He is having his first room air trial today and like all his others, I am hoping for the best but will not be shocked if he has to go back to his low flow cannula.

The fact that he is even on a low flow cannula at this point is shocking to me. He was only 8 days old when he made the switch. Margaret took 9 weeks before she could go to the cannula!!

I'm also impressed that little boy has had no a/bs to speak of. The nurse last night said that he hasn't really hit that point in his stay, yet... that William is still thriving off maternal blood. The truth is, I don't really remember before Margaret's apnea period. I just remember her having 20+ a shift and it really scared me. I suppose I should go look up when she starting all her a/bs. But I am really hoping that baby boy (and Mommy) gets to avoid most of that.

Will has also started to gain weight consistently. He was born at 3 pounds, 7.7 ounces but lost down to 3 pounds. He is now up to 3 pounds 4 ounces. Only a few more days until he'll be back at his birth weight if he continues to gain like he is.

We got the results of his cranial ultrasound yesterday and found out he has a grade 1 bilateral IVH. Although this is not bad news, I was certainly dissappointed. I was praying for the "normal" result.

The only thing that has be slightly concerned lately is William's reaction to the human milk fortifier the docs are adding to the breastmilk to up the calories. They tried to take him to 24 calories but he ended up with bad residuals so they backed him down to 22. He is still having some residual but it is within their limits. The reason I'm concerned at all is that M was so sensitive to cow's milk proteins. I am worried that W is also sensitive. I went ahead and cut out dairy when he was born but now he is getting it in the HMF. If he continues to have residuals on the HMF (he had none ever with straight bm), I am thinking of asking to the docs to either not fortify or to use something else. I know we want him to fatten up but I am worried about his digestive health and his comfort. Any advice from other preemie Moms out there?

Cammatee

2006-12-05T23:22:00.000-05:00

In the midst of all the craziness we have managed to put up the beginnings of our Christmas Tree. So far all we have on it are the lights. But no matter, Margaret thinks it is the best thing on the planet right now. And when I picked her up from daycare today, she was plain chatty and pointing to the Christmas trees they had set up.

Another big hit in our household lately is a fire in the fireplace. Lots of squealing, pointing, and "talking". Yes, we are always close to make sure that she doesn't actually launch herself into the fire... which she seems determined to do!

Her biggest most impressive "trick" lately is her ability to pick letters out on random things like on a Gatorade bottle. And she can do some letters both capital and lower case- particularly "A". Her best letters are A, M, O, and sometimes B. Margaret blows my socks off every day.

More pictures....

2006-12-05T00:17:00.000-05:00

The Newest Monkey

2006-11-29T20:02:00.000-05:00

Pictures of the New Monkey!!

Happy Birthday, William Hughes!

2006-11-28T19:53:00.000-05:00

Hi everybody! (this is copy and pasted all over the internet!)

My sweet boy, William Hughes was born this afternoon at 1:36pm. He was 28w5d gestation. I was able to have him vaginally (thank goodness!) and I did finally relent to the epidural.

William is a very large baby at 3 pounds 7 ounces and 17.25 inches. Yes, you read that right- 17.25 inches. I seriously doubted the measurement but it is right. Tall like his Daddy. His apgars were 7 and 9.

When he was born, William screamed his little head off. By that I mean he screamed in the delivery room. And then he screamed so loudly in the resuscitation room (he didn't require resus), that I could hear him through the closed door! The nurses all said that they had a hard time giving him surfactant because he was fighting so hard. Very fiesty. I love that.

They did have to intubate him but the neo commented that she doesn't expect him to need it long. For a while they didn't think he would need it at all. His vent settings are currently 25% O2 but I can't remember the rate. They don't expect for him to need his belly lines for very long either.... and then I can hold him!!!

I am doing fine since I could deliver vaginally and did not have an episiotomy (just a very small tear). I am just tired and wish I could get into the isolette with baby Willam for a nice cuddle nap.

I will get pics up as soon as possible.

Thank you all for your support and prayers.

Hard Days

2006-11-27T22:48:00.000-05:00

Oh, I miss my baby girl and my husband so much.

Add to that a very pessimistic Perinatologist and you have a sad Mommy. I'm just trying to plug through these long days and keep my eyes on the prize. But it is hard. Very hard.

Life is Crazy.... crazy

2006-11-24T21:12:00.000-05:00

Today my nurse came in to talk to me about a patient in a room next to me who came into the hosptial funneled to her stitch. This patient was here for a little while before she ruptured. The nurse said she is very nervous and wanted to know if I would speak with her and tell her my own experience... about my wonderful outcome. (Of course)

When I visited an Incompetent Cervix Support board I go to, I said a few sentences about the patient in a post I wrote- asking for prayers for her. The next time I visited the board there was a thread addressed to me. In it the poster asked if my nurses name is Chantelle... which it is.

The person who is in the room next to me is someone I've been talking to on this message board. How crazy is that???? I've even tried to encourage her with my story online.

It is such a small world!

Magic Motrin

2006-11-23T23:28:00.000-05:00

I get my last dose of Motrin (for stopping contractions) at 5 tomorrow morning.... I'm terrified that they are going to come back and I won't know it! Keep your fingers crossed for me!

The Original Miracle Baby

2006-11-22T22:21:00.000-05:00

Happy Birthday to my "baby" brother, born at 32 weeks 24 years ago! I always loved taking your milk to the hospital before school... because I got to see you, too!

Wish I could see you to give you a big hug!