Mother's Day Getaway

I had a weekend getaway for Mother's Day. I woke up on Sunday in a luxurious hotel room and had a fabulous day of pampering...yeah, sure I did. In reality I woke up on pull out hospital chair with my little man sleeping in a hospital crib a few feet away. Not exactly how I pictured my Mother's Day, but Will was once again healthy, so I'll take it.

Thursday, Will's reflux starting getting bad...and I am using the word bad loosely...by Friday morning he had gone through a multitude of blankets, sleepers, onesies, socks, bibs & burp cloths (not to mention the several times I had to change my clothes). He was "spitting up" (ha! what an innocent sounding term) within a few minutes of every bottle and then again about an hour after each bottle. By the middle of the night it had progressed to being projectile. I was HATING reflux!

To give me a little break, Joe took Julianna to his parents for the morning while he helped his dad. not more than a few minutes after he left Will threw up again. It was so bad he needed a full blown bath and hair washing (oh yeah, totally got it in his hair). I gave him a bath, then started to get his next feeding ready. He gulped the whole bottle down as though he were starving (wouldn't you be if you had thrown up all the contents of your belly?). Not even 5 minutes after finishing the bottle the whole thing came back up all over him, me, the couch and the carpet. I cleaned us all up and called Dr M's office to see if there was anything I could do for his reflux because I COULD NOT take it anymore. Since he's so young still she wanted to see him.

So, at noon we saw Dr M. She was concerned that he hadn't gained any weight since the beginning of the week and that his spitting up had progressed so rapidly and so extremely. She wanted an ultrasound of his belly to rule out pyloric stenosis (thickening of the muscle between the stomach and small intestines). We went downstairs to radiology (I love that there is a lab, a pharmacy, and radiology all in the same building as the pediatrician's office). We had the ultrasound and went back up to Dr M's office. We then found out that the tech was unable to get a good enough look and we needed to go to AC's to get a better ultrasound. This was at 2pm and we had to be at AC's by 2:30.

We got the ultrasound at AC's at 3pm (because no doctor's office or hospital is ever on schedule) and Will had not eaten since 10:30, and even then he had thrown up the whole bottle, so he was pretty cranky. Just a few minutes later we were told that he indeed had pyloric stenosis. What was happening is that the muscle had thickened so much that nothing could pass from his stomach to his small intestines. When his stomach would contract to push the milk into the small intestines it couldn't go down, so it all came back up and with major force. P.S. is apparently pretty common in baby boys (between 1 & 2 months old) and sadly would go away on its own in a few weeks, but you obviously can't just not feed your baby until then. So Will was admitted and had surgery scheduled for the next morning.

Exactly 2 weeks from the day he was discharged from AC's, he was re-admitted for another surgery. Luckily this one was MUCH less severe. Saturday morning instead of walking in the March for Babies I watched all the walkers pass the hospital from the waiting room while Will was in surgery. It was a laproscopic surgery, so he has an incision in his belly button and 2 small ones on either side. He was such a trooper and only needed 1 dose of Tylenol for pain. Within a few hours he was eating and NOT throwing up! I was amazed at how quickly the surgery worked and how well he was recovering. The nurses were even surprised. I spent Saturday night with him at the hospital and let Joe go home to sleep (he spent Friday night there and was up ALL night with a crying hungry Will).

By Sunday morning he was doing so well, that later in the afternoon the surgeon said he could come home! So we got to come home and spend some of Mother's Day at home with just our family. It isn't the type of getaway I would ask for for Mother's Day, but it's one I won't forget.

We've now had a long talk with Mr Will and told him there are to be no more hospitalizations or surgeries. He's had more than enough in his first 6 weeks!

First Cardiology Follow-up

Will had his first follow-up appointment since coming home, with Dr Awesome on Tuesday. It went pretty well. The nurse did a weight and height check...he was 7lbs 14oz...HIS BIRTH WEIGHT! He has put on almost a whole pound since coming home! We were told if he didn't gain weight it would be sign that his heart was working too hard. She also did and EKG and blood pressures before taking us to another room to see Dr Awesome.

Dr Awesome said he was pleased with Will's exam. He can still hear a murmur (due to his coarc-I'll explain in a minute), but that all his pulses were good, He is oxygenating well, his color was wonderful and that the fact he is eating well is "huge". Everything he says is good is "huge". Then we went to another room for an echo.

The echo took forever. In the hospital an average echo lasted about 30-40 minutes, this time it was over an hour. But Will did wonderfully. He slept through almost the whole thing despite the fact that it was his lunchtime. Dr Patel was able to show us exactly what is causing his murmur on the echo. When they did Will's coarc repair they found that his aortic arch was narrowed much further back than they had originally thought. Because it was narrowed so close to the vessels that take the oxygenated blood to the brain they couldn't remove that section without clamping off the blood supply to his brain, so they left it narrow. This affects his blood pressures and how hard his heart has to work.

In terms of blood pressure think of it as a water in a garden hose. When the end of a hose is unobstructed, the water flows out easily with little pressure. But when you put your finger over the end and make the opening smaller, the water flows faster and has much more force. This is basically what is happening in Will's aorta.

Right now Will's aortic valve is opening remarkably well. Dr Awesome was very happy with it. His mitral valve though still smaller than normal is also opening completely. But the best news of the day was that his left ventricle is now functioning normally! Not almost normal or nearly normal...it is functioning as though it were NORMAL! Compared to his echo the day he was born, when it the outer wall was not functioning at all, that is absolutely amazing!

The three main things that Dr Awesome will be watching with Will are the remaining coarctation in his aorta, that his aortic valve stenosis doesn't return, and that his mitral valve continues to work despite it's small size. I was very relieved when we were told that Will did not have HLHS, but since I have started researching Shone's Syndrome and talking with the doctors, I am worried about the fact that it (unlike most CHD's) can continue to worsen as the child grows and new problems/complications from Shone's can arise.

Thank you again to everyone who prayed for Will and our family while he was in the hospital! And don't forget that we are walking in the 2010 March for Babies this weekend in honor of both our little miracles. Please consider sponsoring Team Kieffer. Just click here to make a donation. Thanks!!

A Potpourri Post

This post is going to be a mish-mash of all kinds of things.

First, I went to see my friend Melissa today. She had her twin girls last night! Ava & Alyvia made their appearance shortly after 7pm yesterday. Both girls are doing wonderfully and despite only being 36 weeks (still preemies) and very small (both were under 5lbs) they did not need a NICU stay and are rooming with mom. I was so happy that after such a long and rough pregnancy she got a wonderful delivery and healthy babies! 3 out of the 8 babies (from our February mommies shower) have arrived!

I got my LAST 17P injection today!!!!!!!!

We did some baby prepping today. New car seat has been purchased (we decided to get a new one so it could snap into the double jogger we're getting) and Julianna's travel system was posted for sale. Bottles and pacifiers have all been sterilized and put away. Joe got our bags out so I can pack them. It's amazing how much stuff needs packed for a toddler to stay at her grandparents for 4 days! Her bag is waaayyy bigger than mine or baby boy's! It's amazing all the things I keep adding to my bag, considering I had nothing when Julianna was born!

We have all been loving the warm weather! Julianna wakes up and immediately asks to go outside and cries whenever we come back in the house. I am so glad she is going to be a girl who loves being outdoors! Now as long as baby boy likes being outside we'll have a great summer!

I haven't made my March for Babies post yet, but hopefully you've noticed the badge on the left side of my blog. This will be our 3rd year walking in honor of Julianna. And since baby boy is scheduled to be here next week, I will be able to actually walk by May. A big thank you goes out to Jennifer R. who was my FIRST donation of 2010! Please consider making a donation to Team K!

And finally, Happy St. Patrick's Day! Julianna didn't have a green shirt, so she wore a white one with a green bow. Being that she LOVES wearing her Mardi-Gras beads I figured she could wear some green ones today. Apparently she's over her "necklaces" and refused to wear any. Sigh...toddlers.

Fight for Preemies

*I meant to post this yesterday, November 17.

500,000...half a million...that's how many babies are born prematurely every year. That number is staggering considering all the medical advances these days. That's 500,000 babies that didn't get enough time to develop and grow before birth.

Some will grow up to have no side effects or indications that they were preemies, but many will have lasting scars. Many premature babies will have physical limitations, developmental delays, and even learning problems once they reach school age. Premature babies are more susceptible to illness. Maybe not getting the illness itself, but to complications from getting sick. I have written more than once about Maddie, a little girl in CA, that even though she was healthy, she developed complications from a cold and died. Prematurity was listed as one of the causes of death on her death certificate.

Prematurity is a problem that can follow a baby all the way through school and into adulthood. March of Dimes is currently doing a campaign to end prematurity. We organize a team to walk in the March for Babies each spring to help raise money for MOD. Please visit their site to see how you can help.

500,000...half a million...Julianna was one of those 500,000 in 2008 and I am fighting to make sure Baby Boy K doesn't become one of them in 2010.

Friends of Maddie

Back in April, I wrote about Maddie, a little girl (17 mos old) from California who had been a 28 week preemie. Sadly, when I wrote about her it was because she had very unexpectedly died.

Sweet Maddie

Her story evoked an amazing response from the internet world. Heather's (her mom) blog crashed due to high traffic, Team Maddie (March for Babies) raised $60,000, and people from all over the world sent their heartfelt well wishes, gifts and money.

Recently, Heather has made 2 exciting announcements on her blog. The first is that from the incredible support they received, her parents have decided to use some of the money to form the non-profit organization Friends of Maddie.

This organization is to help support families going through the NICU experience. For a $25 donation you will help give a family a tote bag filled with supplies to make their NICU stay slightly less stressful. Their goal is to eventually get bags in every NICU in the country. Please consider visiting their website and making a donation!!

The second big announcement that was made was that shortly after Maddie died, they found out Heather was pregnant. This is such an awesome event for them, and she is working VERY hard to avoid the problems she encountered with Maddie's pregnancy. It is also extremely sad, since Binky (the name the baby has been given so far) will not know his/her big sister. I wish Heather and Mike all the best an that she has a blessedly uneventful pregnancy and can avoid another NICU stay!!

Picture Monday: Part 2 (March for Babies)

We walked in our second March for Babies this past Saturday. We had a lot of fun and are very thankful to everyone who sponsored our team.

And we're off!

There were a lot of walkers.
NICU friends!

Ellie wasn't quite into the excitement of the day.

Of course, Julianna wanted some of my pizza!

Jeremy was much happier with this year's t-shirt choice.

The walk wore Julianna out. Here she is at the beginning.

This is about half way through.

And this is where she was by the end of the walk.

Our fam.

Not sure what was funny, but I told you we had fun.

So proud of Ian, he walked most of the way.

Julianna's Big Entrance

This is a long one folks, so get a cup of coffee and take your phone off the hook.

15 months ago, on January 17, 2008, I waited ever so patiently for the school bell to ring at 3:45, for my students to head home for a long weekend, and for me to go home to an already packed up car, and head to Ohio for my baby shower. Joe and I drove 5 1/2 hours (stopping to get Subway for dinner...I had a 6 in tuna sub on wheat if anybody cares) to Wytheville, VA and stopped at a Comfort Inn for the night(the room was freezing by the way!). Then early...I mean early Friday morning (we couldn't sleep on the uncomfortable Comfort Inn bed), we started the rest of our drive to Ohio.

We got to Joe's parents around noon, way before we thought we would. We had lunch and opened our Christmas presents...yes, I said Christmas presents. That evening we went to Erin & Jason's for dinner, and to look through her giant tubs of baby girl clothes (she prepared well for a girl or boy when she was pregnant with Ian). I complained most of the evening of Julianna pushing like mad on both side of my stomach. I had learned over the last few months that she was already an athlete, generally kicking and pushing so hard I would have to take a deep breath(I'm pretty sure Erin told me to suck it up). I was slightly concerned that she was being to violent, but shrugged it off.

When we got back to Joe's parents, I noticed a tiny bit of discharge, but had just read how normal different discharges were and that you shouldn't be concerned except for certain circumstances, none of which I met. So I went to bed. I slept like crap. But in all honesty, what pregnant woman sleeps good? I awoke at 5am, to pee of course, "pregnant me" got up at least 4 times a night to pee, and there was more discharge. This did not set well with me and I woke up Joe. We debated what to do for awhile. I felt fine. I wasn't having contractions (or so I thought). I had had braxton-hicks contractions since 15 weeks and knew them well. There weren't any kind of contractions to be felt.

But I was still uneasy about all of it. So we called my doctor in SC...at 5:30am. The answering service had her call me back (my OB wasn't on call so I talked to another one in the office...one I had never seen). I explained what was happening and she told me it sounded like nothing was wrong, and that maybe I over did it on the drive up to Ohio. She said if it would make me feel better I could go to the local ER and get checked out. I said thanks and hung up. We layed in bed debating, yet again, this time whether or not to go to the ER. After what seemed like an eternity, we decided to go (just for our own peace of mind). I laughed about how I would get there, get checked out, and they would tell me I was a paranoid first time mom. Joe let his mom & dad know where we were going and not to worry. Then we headed off.

I called my sister and my parents to tell them we were going to the ER just to get checked out. I told them all avidly not to come, and not to worry we would call them when we were discharged(so sure we would get discharged). On the way to the ER, I thought to myself, I should have gotten copies of my OB records to bring on the trip, I had read somewhere before we left SC that I should do that...but I didn't. We arrived at Aultman at 6:30am, and its amazing how quickly you get seen in an ER when you are 27 weeks pregnant!

We were taken to a room and an intern(I don't know the actual position, but it was doctor that couldn't do things on their own) took my history and complaint, hooked me up to all the fetal monitors and said another doctor would have to see me. Okay. Another doctor, and I will never forget him, Dr. S came in and examined me, and told me I was already 6cm and would have to be admitted immediately. He left the room for a few minutes and then and only then did I cry. This is a very important moment to me. That is the only time throughout the entire experience that I cried. I was so scared.

I was taken to L & D. I had a fabulous room (not that I noticed until sometime the next day). There were like 900 doctors and nurses in my room (ok, not quite that many, maybe 850).I was getting IV's, shots to stop any contractions I was having (still none of which I felt) and shots to mature Julianna's lungs, and had like 5o papers to sign (I had no idea what they were, they said sign and I signed). I was scared, but I knew doctors could stop labor. And I had NO problems during my pregnancy, not even morning sickness, so everything would be fine. I felt even better, once there was some family there(my sister hadn't listened to me when I told her to stay home).

Then they brought in an ultrasound to check on Julianna, and this is were things went really bad. There were in all seriousness at least 5 doctors in my room, and I remember one turning to us and saying "You know we are concerned when there are this many doctors here". WHAT?!?!? You shouldn't tell a pregnant woman things like that! I immediately started to panic! Ok, not outloud, but in my head. Outwardly, I was still relatively calm. I think I was in shock to the point that I didn't know how to make my thoughts come out in actual verbalized sentences. I heard everything that was being said but only comprehended a fraction of it. Anyway, during the ultrasound they realized Julianna was breech and was in immediate danger of delivering her foot and umbilical cord. Should that happen she would suffocate in a matter of minutes. I was to be taken to the OR right then to have an emergency c-section. Joe had managed to call his parents and mine to come to the hospital right after we found out I was being admitted. His parents got there just before I went to the OR, mine got there just after.

At this point things get a little foggy. I remember sitting up for the spinal, and vaguely remember the surgery. I do vividly remember the anestesiologist asking if I wanted a certain drug during the procedure. I looked at Joe (he being Medic Joe) and asked if I wanted it...his reply was "oh yeah, you want that, its good stuff". At that point thigs get even more blurry. I can't remember if Julianna cried (Joe's said she did), I don't remember them wheeling her isolette passed me so I could catch a glimpse of her (Joe said they did), and I don't remember being taken to recovery (obviously they did). On the good side, I don't remember whether or not the c-section itself was uncomfortable in any way.

One thing I do remember, is the ridiculously long time I was in recovery. Ok, I have no idea how long I was actually there, but it seemed like forever. I think it was because I was told when I left recovery they would take me to the NICU to see Julianna. The nurses in recovery so wonderfully called the NICU whenever we asked, but we were never told it was ok to come. Eventually, I was taken back to my room without seeing Julianna & was told they would let us know when she was stable. I was so glad to see my family when I got back to my room. And we all waited...waited for news about Julianna...waited until we could all see her. At one point I thought, if she still isn't stable, should we call Fr. H? Will she need to be baptised right away in case...I tried not to think about "in case".

Finally, (I don't know what time) we were able to see her. And this is what we saw.

Our little baby girl, weighing just 2lbs 11 oz and 13.5 inches long, was on a ventilator, had umbilical IV's and more tubes and wires than I wanted to count. This was not what I thought my first visit with my baby would be like. I wasn't allowed to hold her and could barely see her from my wheelchair.

Thanks to surfactant (a drug discovered thanks to March of Dimes research) Julianna was only on the vent for 13 hours! That is absolutely amazing for a 27 week preemie! March of Dimes is also responsible for many of the things women do during their pregnancy like taking folic acid to prevent neural tube defects. Their current mission is a campaign against prematurity. I have an increased risk for having a preemie in future pregnancies, so I want nothing more than to help them reach their goals and give babies a better chance of being born full-term and to avoid the unfortunate stay in the NICU.

Please sponsor Team Kieffer when we March for Babies in 2 weeks.

The Amazing Power of the Internet

I just had to write about how in awe of the internet I am right now! Yesterday, I posted about little Madeline, and her very sudden passing, after what her mom thought was just a cold. For anyone that tried to use the link to her mom's blog and it didn't work(the server couldn't handle the number of visitors it was getting), today it is up at a new address. Check out some pictures, she's so cute! Today, I googled her name, and WOW! There are so many things about her online now(over 6,000!) including stories on the Today Show's site. For a little girl that so many people didn't know, she has touched a lot of lives in the last few days (mine being one of them).

Not only have people, including myself, written about her on their blogs to show their support for the family, but her parents asked that instead of flowers or other things people make a donation to March of Dimes in her name. Since yesterday morning, "Marchers for Maddie"'s total donations went from a few hundred dollars to over $18,000!!! Since I am relatively new to the whole blogging world, I had no idea that they reached out to so many people. I am sending good thoughts and prayers to Maddie's family, and hope you will too.

**Update 4/16/09 March for Maddie's Team total is over $30,000 now!!!
***Update 4/25/09 Today was the March for Babies in LA, March for Maddie rasied over $50,000!

A Truly Sad Reminder About Preemies

As I was checking my March for Babies page this morning (by the way feel free to visit it and make a donation!), I saw a blog entry for today entitled "For Sweet Little Madeline". I don't usually read these blog entries because they are about easy ways to raise money and such (I'm not big on just calling people up to ask for money), but decided to read this one. Madeline Alice Spohr who was born just 3 months before Julianna, and a week older gestation, died yesterday at only 17 months old. I felt compelled to check out her mom's blog to find out a little bit about her. From what I have read, Maddie has dealt with issues related to her prematurity for most of her short life. This past weekend she had a slight cough and seemed to have a cold. Monday, her mom took her to the pediatrician who sent her to the hospital, and sadly yesterday she died. I couldn't help but cry. It struck my "mom of a preemie" chord.

We have been lucky enough that Julianna has dodged just about every preemie related set back so far. Sure, she sees a neurologist regularly(a new one this month!) and there is still the possibility of CP, she has undergone 8+ months of occupational and physical therapy (almost done!) and she is very susceptible to pneumonia if she gets a cold(had it once already), but there are so many other and worse things that she could be dealing with. She is such a great little girl and has overcome so much in her life already!

Reading about the death of a little girl so close to Julianna's age, was a sad reminder that preemies are still preemies even after they grow and meet important milestones. I like to think that Julianna is no longer a preemie, that she is a normal little girl. Part of me is like, hey, she's crawling, eating solid foods, doing the things full-term babies should do, but I'm kind of just fooling myself. I know she will always be a preemie. There are issues from prematurity that don't even show up until school age, puberty, even adulthood. Stories like Maddie's make me appreciate her even more, and if possible, make me even more thankful that she has been doing so well.