Pics from last weekend

Here are just a few pics from last weekend. We went to Crissy Field...a beautiful, but sort of frigid day. Also, pics of Ty sleeping ON Tim.

I hate packing peanuts

An exploding box of packing peanuts and me do NOT mix. I hate them!

Posing for pictures in his new outfit

Thanks for the fancy duds, Anne Yi!

Unhappy Ty...modeling his Disney togs (from Pam)

Giggling Ty

Happy Birthday Uncle Kirby!

Ty the Big Mouth

Playing on the floor

Smiling

Recap of Events...

Several of you have asked for an update on Ty's medical situation and/or learned about his problems later. Here is a summary of everything without my usual extra commentary.

Thurs 3/1 - Ty is born at 4:26 AM. I had a natural and smooth birth (but long) without any problems. But, because he is 41 weeks, he takes in a lot of meconium which affects his breathing immediately after birth. Right after birth, he has trouble breathings, so they take him to the NICU for observation. The doctors think he might have an in infection.

At about 12 hours after birth, Ty had his first small seizure. When the nurses noticed this, the doctors arranged for Ty to be transported from the Level 2 NICU hosptial we were in to a Level 3 NICU where he can recieve more critical care. I get myself discharged and packed in about 20 minutes so I can ride in the ambulance with Ty.

Fri 3/2 - By Friday night, Ty has had a series of tests: CT scans to look for superficial brain injury, possibly from the birth process, a Spinal Tap to test for meningitus, and an MRI to look for other possible causes for the seizures.

Late Friday night - we learn that Ty had a stroke. Based on the type of "scan", they know the stroke occurred within 3 hours to 7 days of the MRI. He most probably had it right before or right after birth. The stroke caused a small amount of damage to his left middle cortex. It appears to be right above the area that controls motor skills.

Sat 3/3 - We meet with the neurologist who shows us the 54 slides of MRI's (pictures of Ty's brain) in rapid fire pace. The doctor says he has no reason to be concerned about his overall health, but tells us that Ty may have problems with the right side of his body. However, given infants' neural plasticity, Ty may actually have no problems at all or may have problems with motor, cognitive or speech development. But, we will not know anything long term until he "moves" through each major developmental milestone. Many infants that have strokes may never show any symptoms because the brain learns to use other parts of the brain or may actually "skip" over the damaged parts.

Needless to say, Tim and I were shell shocked at this point.

Sun 3/4-Mon 3/5 - Ty is removed from antibiotics because they have ruled out any infection. Ty's seizures are also under control by this point.

Tues/Wed - They stop giving Ty the heavily sedating anti-seizure medication and keep him on the one other, but milder anti-seizure medication.

Thurs-Sat - Ty's sedation level continues to drop, so we are able to feed him and he becomes more "awake". However, his breathing is still shallow, so they keep him on a little bit of oxygen. They think he just needs more time to breathe deeply after dealing with the sedation.

Throughout the week - they do more tests to monitor his brain activity and monitor any new damage. Also, they do tests on his heart to see if he is at risk for more strokes.

Tuesday, 3/13 - We get to take Ty home!

Many of you have asked why infants have strokes. They think that infant stroke is greatly under diagnosed. As many as 1 in 4000 infants suffer from a stroke. We only happened to learn about Ty's stroke so early because he exhibited the seizures. The seizures were caused by the stroke affecting a very specific part of the brain.
Well, there appears to be a few different leading causes:

1- Some congenital problem - maybe problems to the heart which may cause clots which increase the risk of strokes.
2 - Infections - can increase the risk of clotting, which increase the risk of strokes.
3 - Genetic risk of clotting - this is more rare, but we've all been tested and none of us (Ty, Tim or I) have any underlying genetic risks.
4 - Environmental risks introduced in pregnancy - if I had done cocaine or other stimulants that affect the central nervous system in pregnancy. (No, I did not do any drugs before or during pregnancy).
5 - Random - Apparently, there is a theory that the risk of stroke increases exponentially in the mother and infant the week before and the week after birth. This may be due to additional clotting that takes place to prepare for birth in the mom and babies' bodies. (I actually learned about a mom who had a stroke during birth recently...so, the risk is increased for the mother, also). Right now, Ty's stroke is looking like it had a random cause like this.

What is next? Well, Ty takes medicine daily to prevent the strokes. The doctors will probably discontinue the medicine around 5-6 months of age. Apparently, he may not need the drugs after that. However, there is a chance he may have a few seizures as he comes off of the drugs. But, it is all an experiment. And, we simply wait and see. But, in the meantime, he is a funny and cute and normally developing little boy.

Update: Ty was taken off of his antiseizure medications at 4 months and he's had no problems since. The neurologist says that the clinical evidence shows that his stroke makes him no more for risk of another stroke or seizure than any other child now. Great news.

I'll get back to my light fun in the next update...we hope to have fun pictures after this weekend of no work!

Getting into a groove...

We are all getting into a groove. Ty is now 6 weeks old. But, it feels like we have only been parents for 4 weeks (after the 2 week visit in the NICU). And, then my mom was here for 2 weeks. So, I feel like I've only been really a mom for 2 weeks now. Given that rationalization, we are doing great! We've settled into a somewhat predictable sleep and feeding schedule. Since he is now 6 weeks old, we are hoping that we will start to stretch the nighttime sleep between feedings.

We still haven't gotten the results of our bloodwork...that being mine and Tim's. I'm thinking that means that the doctor got all negative results. We are postponing Ty's follow-up bloodwork until he is a little bit older.

I got my new "sling", a Mei Tai, in this week. It is significantly more comfortable for me, so now Ty can happily sleep a few hours a day while I am wearing him. I "wore" Ty to Tim's office today, as I'm going to start working again as a part-time consultant in the accounting department again. But, we're thinking I can do most of the work from home with mini trips and meetings in the office. But, it provides a good opportunity for Ty and myself to have lunch with Tim.

Since we got through our bathroom inspections this week, Tim officially has his first free weekend with no construction obligations. I think he needs to sit all weekend with a baby on his chest!

Invitation to San Francisco Bay Area Ladies

Hello everyone! I'd like to invite all of the Bay Area ladies to an event that I've attended for the last two years. The Mother's Day luncheon on Friday, May 11 supports the Marin Abused Women's Services (MAWS).

The Marin Abused Women's Services (MAWS) is an incredible organization that provides services to abused women and their families. They have services that help both women who are trying to rebuild their lives, as well as programs to help their partners. They have helped over 30,000 women in the Bay Area since their founding.

Each year, MAWS raises a substantial portion of their fundraising dollars through this Mother's Day luncheon. It is truly a "ladies day out" event with incredible guest speakers (this year is author Isabelle Alende), Cosmos and wine for purchase and an incredible silent auction. Rarely do I like the items being auctioned off at events like this, but I actually want the items being auctioned off!

I am officially a "table captain" this year and have committed to filling a table of ten ladies. I'd like to invite each of you to consider coming and enjoying a lunch with fun ladies while supporting a great organization. The luncheon fee is $75, but $50 is tax deductible and 100% of the proceeds go to MAWS...all of the event expenses are underwritten by sponsors.

If you are interested and have the means, please join me. The application can be downloaded at http://web.mac.com/lealotus/iWeb/timles/MawsRegister.html

If you'e out of the Bay Area, please consider supporting your local Domestic Violence agency.

Lesley

Hanging Out

Lesley and Ty had their first few nights alone without Tim. Tim had to travel for work, so Lesley had her first night alone with a baby. Gasp! One of our co-workers from Hargreaves (Tim's firm) came and hung out with me Thursday night. She is a former nanny and is a whiz with babes. I also got some good company while trying to get Ty to go to sleep.

We had a tough day at the lab this week. We are still trying to finish various tests to make sure that Ty is not at risk for further strokes. Unfortunately, the lab collapsed four of Ty's veins and worked on him for over an hour without getting any blood out of him...while I try to remain calm while Ty is screaming his lungs out. I talked the doctor into letting us wait a month until he has grown a bit more. For the time being, I am calling Ty the turnip. Also, Tim and I had tests done, as some of the risks may be genetic. They can take as much of my blood at this point.

We had a really funny thing happen to us at the ferry building. We thought we'd have a glass of wine at the wine bar and enjoy some artisinal cheeses. But, we got asked to leave because Ty is UNDERAGE! What is that about? We thought they were joking, but apparently it is a California law. Tim tried to offer them Ty's fake ID, but they didn't go for it.

More pictures are posted on Ty's web pages at http://web.mac.com/lealotus/iWeb/ty.

Receive Email Updates for any new blog updates

Several of you have asked to receive automatic updates whenever we post any updates to the blog. I found a service that can use to get that update now. Blogarithm.com is a service that you can subscribe to that will send you an update anytime I update our blog. I added a form directly on the top right of the blog where you can subscribe!

Hope this makes it easier to keep track of us. I've started using it to keep track of a few other blogs that I like to visit.

First week with Ty---Solo

My mom left us this past Tuesday morning, so Tim and I have been solo since. Since Tim has to work (shock), I have been on my own during the day. Needless to say, it was a little overwhelming. Every day gets easier and I keep telling myself that God takes care of idiots like me. Right? I also remind myself that while Ty is 4 weeks old, I have only really been a practicing mom for 2 weeks since we left the hospital.

Well, I had a few things I wanted to try as a new parent. I wanted to try for a natural birth...I wanted to try breastfeeding, and I wanted to try cloth diapers. I was happy that I got to have a natural birth and the breastfeeding has been a lot easier than I thought it would be. But, we have given up on cloth diapers and cancelled our diaper service. Tim and I wanted to try and be environmental and not clog up the landfills, but we couldn't juggle all of the crazy pieces of cloth diaper, diaper cover and liner. I only have two hands! So, I embarrassingly called the diaper service and admitted that I was not coordinated enough. I'm now experimenting with disposable diapers that are a tad more environmental...so far, so good.

Odd observation...my friend, Eleanor, who is a new mother to her second son, told me that I may forget to eat after I had Ty. I couldn't believe her. I could never possibly forget to eat. I have to agree with her now. So many people say that the pregnancy weight is lost quickly with breastfeeding. I don't think it is because of the breastfeeding, though. I think it is because it is impossible to eat while a baby is attached physically to your boob and I haven't figured out how to grab food while trying to get Ty to sleep. Crazy stuff.

What's up for Ty, Tim and I this week? We have our first round of immunizations this week. We also have an appointment to get MORE blood drawn for Ty. The doctors are running more tests to rule out the possibility of further risk of stroke for Ty. Tim and I had blood drawn today, as we may be carriers of certain genes that would make Ty (and us) at risk for clotting and strokes. On a non-medical note, I am experimenting with my baby sling. Ty has liked riding in the sling on my chest so far and has even slept for multiple hours, but I haven't got the sling set correctly for my ergonomics yet. Remember the bathroom remodeling projects? We have our final plumbing and building inspections this week. After all of Tim's hard work, I'm hoping that the inspections are smooth. Check out more pictures on Ty's website if you want the full posed show at http://web.mac.com/lealotus/iWeb/ty.

Ty is now Wireless AND Cordless

It has been lots of fun to have the wireless version of Ty since he's been home. Now, Ty is CORDLESS! Okay, it's a bad baby joke. We are somewhat figuring out how to plan our days around Ty's feeding schedule. Basically, as soon as he eats, it seems that we have about 3 hours to run errands or walk or goof off before he lets us know that he means business. Okay, that seems to rule during the day. We still haven't mastered his early evening hours. Ty seems to have decided that he does not want to sleep when Mom and Dad are both home...he thinks he is missing fun or something!

I've posted more of our pictures at our personal web pages. I've created pages just for Ty. It's a little redundant, but I've had requests from family. :> Find the pictures at http://web.mac.com/lealotus/iWeb/ty.

Ty is Training Us...

Ty awake and playing



Sorry for not posting for a few days, but we are getting used to Ty's rhythms. Also, I have had six interviews for fall internship positions (for my graduate school requirements). My mom has been taking care of Ty while I've been running the roads. Fortunately, I typically am gone for only a few hours at a time.

Ty is feeding really well, but we are trying to figure out his sleeping "schedule". I've attached a few new pictures of Ty with us at home.


Ty with Tim at the coffee shop across the street --- his first dinner out.


Lesley & Ty


Grandpa Kirby (don't know his nickname yet) with Ty


Tim trying to quiet Ty down


Tim & Ty napping


Ty sitting in his new vibrating chair

Catching Up...

We've had a busy three nights and days since Ty has been home. I'm trying to get used to waking up during the night and nursing Ty. Thankfully, he has been sleeping well and not waking me up too often. We've had lots of firsts...we have been out in the park for nice long walks. We took Ty out for his first dinner last night. I had a job interview today (for a fall internship) and we all went together. Mom hung out with Ty while I had my interview. I have three more interviews next week, but I think my mom will stay with Ty while I am out running the roads.

We are struggling with cloth vs. disposable diapers. I can't seem to maneuver the cloth diapers, but I have a diaper service for a least a month. I promised that I would at least give it a try. If I don't have the patience, I bought slightly environmentally friendly disposable diapers as a backup. My mom is working on all of the various creative ways to fold the cloth diapers so they don't seem so difficult...we'll see how this little experiment goes. At least we got the breastfeeding figured out...

My dad got here today from Louisiana...I have no idea what we have planned for the weekend. I hope there is a nap scheduled somewhere in the schedule for me!

Ty hanging out with GG (aka Grandmother Nita)

Ty's First Night Out

Ty's first night out...we had dinner across the street at the Velo Rouge Cafe. He didn't like to stay in the pram...he wanted out to watch all of the other dinner guests.

Ty sleeping...I'm SO happy

Our first day home Ty

We have had fun first day home with Ty. First, we are so happy to be able to now have a wireless baby. Having a wireless version is much easier to navigate!

We also realized that we had never been at the hospital for the midnight to 7AM shift, so we had no idea how much he slept, ate, or pooped in the wee hours in the NICU. So, Lesley had an active night feeding Ty! Other things we have learned about Ty today...he is a super loud pooper. I suppose that is good since he gives us good audible cues. We seem to know when to feed him because he will try to nurse from Tim's chest or even arm. I was worried about nipple confusion before...apparently he is confused more than that! We also learned that Ty gets to sleep much easier on his side than his back, so we now know how to settle him down quicker. At least we can do that when we are watching him and awake.

Ty got to take his first trip to the doctor and his first ride in his stroller to Golden Gate Park. I've posted all of the pictures below...

Ty finally sleeping after we put him on his side...yes, we are watching him!

Ty zoned out in Tim's arms!

Ty behaving for his huge diaper changes!




Ty out for his first visit in Golden Gate Park...he really is under that big blue blanket.

Ty at Home

Ty coming home to the condo for the first time and Ty's first nap at home.




Ty in his first car seat ride...he didn't do too bad for the 3 minute ride, either!

Ty is Home!

Ty is finally home! We got discharged this morning and after all of the paperwork and other logistics, we were home around noon. We have had our first big diaper change, first feeding and first big cry at home. He looks so sleepy, but he so wants to look around at his new surroundings.

We are so excited to be home...we are just waiting for my mom to show up from the airport. We think she'll be happy to be here for Ty's first night home. We'll post more pictures later...I'm sure we'll have many, many new pictures to post over the next few days! We also have lots of follow-up appointments with doctors this week...so, Ty will get lots of time riding in the car and stroller.

No oxygen...maybe home Tuesday or Wednesday?

Ty had a great day today. He is seeming more and more alert each day. Unfortunately, they put him back on oxygen overnight. He has a few little spells of when he wants to breathe shallow. So, we had to go back to square one. But, the doctor wants the oxygen pulled to see how he does. He did fabulous all day...but, his oxygen numbers drop a little bit each night. It's like he just gets lazy and doesn't take deep breaths for a while after dinner. But, he still has great color and appears to be breathing fine. It is just the damn alerts that are torturing us!

So, we are not holding our breath that he will be out tomorrow. We're hoping, but I got so excited that today would be the day. But, they seem to be progressing with all of the other regular "discharge" like activities. So, we'll just wait and see another day!

On other notes...we really like all of the nurses, but they are proving to be inconsistent in their approaches. Our nurse yesterday insisted we shouldn't allow Ty to "snack" between meals. The nurses today fed him any little time he cried. And, the other nurses left me alone to breastfeed Ty and we had a little system going. He futzes for about 2 minutes and spazzes out...then, he decides to get to business. Tonight, our nurse insisted on butting in (okay, she thought she was being helpful) and infuriating Ty and he would never latch. Okay, I'll clarify. She was infuriating me and making me uncomfortable, so Ty and I couldn't get into our groove. So, I resolved myself to letting Tim feed Ty while I was doomed to the "pumping room". But, I figure those are small annoyances in the big picture. I just want to get him home because Tim and I think we're figuring out his temperament and rhythms rather than the new nurses we get assigned each night.

Check out the little smile

I tried to catch Ty with his eyes open and smiling at the same time. I almost got it. Ty has been really alert today and feeding well. The nurses are now trying to "train" us to calm him down and get him to sleep. It's rather backwards from our trying to wake him up to eat all week. I guess we are now learning what to do with a non-sedated baby.

We left the hospital about an hour ago. When we left, he had been on room oxygen for about three hours and doing well. We'll go back in another hour or so to feed him. We're hoping he is still doing well enough on room oxygen alone. That is the last thing we are waiting on...24 hours on room air. We'll just have to wait and see!

Ty in Real Clothes in a Regular Crib

When we arrived this morning, Ty was out of his isolette and in a regular crib. This is one more step closer to his release. His body temperature is now easier for him to maintain and now they can swaddle him without having to watch for seizures.

Also, Ty was transitioned from high-flow oxygen to low-flow oxygen. Basically, the high flow has more moisture and actually pumps the oxygen to him. With the low-flow, it is simply adding 0.5 to 1.5% more oxygen than room air, but he actually has to work for it. So, that is one more step to being released. All we are waiting for now is for Ty to be completely off any additional oxygen. The doctors and nurses are confident it will be in the next few days...Ty just needs to wean himself.

Fortunately, the doctors have changed Ty's feeding schedule to "on demand". This is great because we aren't trying to wake him up when he really isn't hungry, nor is he having to wait for when he is scheduled to eat. It does require a bit more flexibility on our part. So, we are simply on standby from the nurses to let us know when Ty is ready to eat again. So, we'll head back to the hospital in a few hours to nurse him.

So, now we just wait for Ty to wean himself off of the last bit of oxygen before they prepare us for discharge. We hope to have that exciting news to post soon!

Ty in a Regular Crib

Ty's First Bath

Bathing Ty was like trying to hold on to a greased pig. He was not happy at all about the bath, but we were actually glad to hear his first little cry. He was quite happy when we were all done and had him wrapped up again before his dinner.

Ty's sedation levels were signficantly better today. He is showing his preferences by eating and sleeping on his schedule...not the prescribed eating schedules. I'm fine with that, but it does seem to monkey with the nurses' schedules. We had another new nurse today, who was great about following Ty's schedule.

We got great news today. We think Ty might be discharged some time between Sunday and Tuesday. He still needs to wean himself off of the oxygen, though. The doctors say there is no medical reason he should still need it...I think he is just being a lazy breather. But, when we are holding him, they can turn it off completely. So, he just needs to get with the program. The doctors are going to discharge us with only one medication prescribed for Ty. We'll have to follow up with the neurologist in a few weeks, but I think that is good. We also met with our social worker today to get all of our referrals post-discharge. We are lucky to be in San Francisco and California. Apparently, Ty's diagnosis qualifies for special programs that will monitor him from 3 months on for developmental progress and to make sure that we have the right type of therapies if needed. (I feel really lucky after learning that some of our fellow NICU parents are from out of town and staying at the nearby Ronald McDonald House).

On a lighter note, I have been chatting with several other NICU mothers in the "pumping room" (Where we go 8 times a day to pump milk if we are not able to breastfeed full time yet). I heard some outrageous stories today about one teenage mother who decided to walk around topless in the NICU for 3 months and other similar crazy behavior.

Also, our day nurse had to run out chasing a couple. Apparently, they were told there baby was going to be discharged. So, they picked up their baby and started walking out the door a few minutes later. They seemed to miss the details that their baby still needed a hearing test...and, of course, obligatory paperwork. But, it was funny to see the nurse running fast to catch them.

Tim also wanted me to tell everyone that Ty does actually look better and healthier than the posted pictures show. To be fair, all of the pictures are taken with my cell phone with very low resolution, so I can email them directly from my phone to the blog during the day. Tim is determined to post better pictures to the blog with our "real" camera after we get Ty home.

Ty's First Bath...and his first big Cry