Pawlowski Family Blog
Hello friends and family...we will try to keep you informed of all the happenings by posting the latest information below. I've included the ability for anyone to post a message on our 'virtual guestbook' so feel free to share your thoughts if you don't mind others reading what you post.
View photos posted below on April 16th, 204-347-1418, April 26th, April 30th, (252) 618-9274, June 18th, latron.
Tuesday, June 28, 2011, 11:30 PM CST - by Todd
Wow...it has been over a year since I last posted on the blog. Everything has been going great for Abby and Sam. She is a sweet and sassy two year old that thinks she is in charge and has no problem standing toe-to-toe with her big brother. She loves to play outside and climb on EVERYTHING! Sam is participating in Bam Bam Tee Ball this summer and absolutely loves it! In his first at bat during his very first game he smacked the ball and proceeded to skip his way to first base smiling the entire way.
On June 18th we got together with a wonderful group of family and friends to participate in the 2011 Des Moines Heart Walk. We are so thankful for those who walked with us as well as those who made a financial contribution on behalf of Abby to Mended Little Hearts of Iowa. Abby's Pacers raised over $1,000 for a great cause.
Check out the following link for photos from the event: mastoid
Wednesday, February 17, 2010, 2:00 PM CST - by Todd
Here is the link to the video from KCCI last night about Abby's story.
We are attending the Heart Ball this weekend and will post an update following it to share all the news.
Tuesday, February 16, 2010, 3:30 PM CST - by Todd
Kind of last minute warning but....if you get a chance, be sure to turn on KCCI (8) tonight at 5:00. They are doing a story on our daughter, Abby, for the upcoming American Heart Association Heart Ball. The Ball is an annual fundraiser for the AHA, and KCCI is giving people the opportunity to donate money to the AHA in Abby's name. They will air the story tonight at 5:00, and then again Saturday evening at the Heart Ball. Should be neat, and we were honored to help out such a great cause.
Abby was in a great mood for the interview and Sam was....well.....in a good mood but he's an active three year old. Should be interesting to see how they slice and dice the film to work out. :-) We will post a link on our blog once the story is available on their website.
We also have new photos available for when Sam turned 3 and Abby 9 months. I put a couple of them below.
Please visit (213) 741-3528 to see the full album.
Please visit /pawlowskiphotos.shutterfly.com/ to view more photos.
Monday, January 19, 2010, 12:30 PM CST - by Todd
This past weekend was my 35th birthday and Kristin surprised me by having the kids head off to my parents for the weekend. Wow...talk about getting some R & R when you don't have a little one coming into your room at 6:30am asking if he can watch 'tartoons'. After two days of quiet I was starting to miss the kids though and was excited to see them on Sunday. When we picked them up I don't know who was more excited...us or them.
Sam turns three on January 31. It's hard to believe how fast he is growing up. He has quite the personality and lets us know from time to time who is 'boss' according to him. Overall he is a real hoot to be around and makes us laugh all day long.
Abby had her nine month appointment last week and is growing like a weed. She continues to thrive and shows no sign of slowing down. Here are her latest percentile stats: 75% height, 88% weight and 96% head size. She loves to smile all day long and adores her big brother. She is not crawling yet but LOVES to stand. Trying to get her to sit on the floor is a challenge at times because she straightens out like a board. Her next appointment with the cardiologists isn't for a couple months. We did see them in December to check on her pacemaker and they said everything looks great. They did discover that the pacemaker itself has kind of slid down lower in her abdomen than where it originally was placed. After some discussion they determined that right now it doesn't warrant during anything to move it especially since Abby is doing so well. If things changed then they would investigate it more closely but really didn't show any concerns right now...so that's a relief.
I'll try to post more photos in the week ahead. Bye for now. Todd
Saturday, October 17, 2009, 10:45 AM CST - by Todd
Last night we decided we better take a video clip on our regular digital camera of Abby laughing her little cheeks off. It might not be 'high definition' video quality according to the standards but the actress still gets five stars in my book.
Make sure to check out the recent photos in the post below as well.
Wednesday, October 14, 2009, 12:00 PM CST - by Todd
WOW....Abby is six months old today! Words can't even begin to describe the joy we've celebrated during these past six months. As the doctors have said to us on more than one occasion...."there is no failure to thrive in her world"...I think the photos below can attest to that statement! She is an absolute bundle of joy and smiles so big that her little chubby cheeks force her eyes closed. She greets us every morning in her crib with the biggest and brightest smile. While Kristin and I can make her smile there is one person that she loves the most....her big brother SAM! She smiles and has 'biggggggg' laughs whenever he is around. I mean he could be picking his nose and she laughs at him while we are telling him to "get your fingers out now!"
She is starting to eat stage 1 foods and seems to just be taking it in stride. Overall Abby has a pretty easy going attitude and is rarely 'fussy'. Any time she starts to whine or fuss it's because she thinks she is not getting enough attention. So we send Sam her direction and the next thing we know she is choking on her own drool from all the laughter. She is still taking Prilosec for her reflux and we seem to be doing a pretty good job managing it or at least noticing the signs of when her dosage might need a slight bump up because of her growth. She has her six month pediatric appointment today....yuck...shots! And then later this month she will see the pediatric cardiologists to do a pacemaker check. They mentioned at her last appointment that they will probably turn her pacemaker down from 100 bpm to 90 bpm since she is growing and doing well. Plus her body seems to be able to have her heart respond and increase when demands require it...ie. crying at us to hurry up with the bottle!
It is such a joy to have Sam and Abby in our world...they make me want to be a better dad. (And now if I could only work on getting things done off the 'honey-do list' I would be a better husband too! I would say my wife has patience on many of my unfinished 'projects' but patience isn't even a strong enough word!)
Here are some of the photos from Abby's photo session.
Please visit /pawlowskiphotos.shutterfly.com/ to see the full album.
Please visit /pawlowskiphotos.shutterfly.com/ to view more photos.
Sunday, August 2, 2009, 10:35 PM CST - by KRISTIN
(First a note directly from Todd..."What can I say...six weeks and nothing posted...I'm such a slacker! And that even follows my post on how I wouldn't go MIA on everyone again. Next time I'll be more careful about saying that I'll update the site on a regular basis. Time flies when you are having the time of your life playing with your two year old and three month old! Now I will let you enjoy the post and pictures from Kristin.)
Well, it's been more than awhile since our last post. In the big picture, I think that's been a good thing....just getting to know Abby, loving our new family, and maintaining "status quo". Evidently God thought we were beginning to take our great life for granted, however, so he threw us another curve ball....
On the 19th of July, Abby awoke in the morning with a low-grade fever. She had had an "off" night...getting up more frequently than usual, but taking good bottles. By noon that day, her temp was 101.5 but she was otherwise very content. We gave her some Tylenol, assuming that she was coming down with the Hand, Foot, and Mouth virus that Sam had picked up earlier in the week. She drank a regular bottle, and then went down for her nap. Around 4:00 she started to rustle, and I went in to pick her up. The first thing I noticed was that she had spit up a sizeable amount on her sheets. As I picked her up, I focused on the fact that her color was gray, and her lips were purple. She was shivering uncontrollably, as if she couldn't get warm. Needless to say, my heart was racing as I swaddled her up and tried to get her warm. I walked around the porch with her, scared to death. She moaned repeatedly, but never cried. I called Todd at work and said that he needed to come home immediately...something was very wrong. He rushed home, and we asked one of our neighbors to come over and sit at the house while Sam napped. We grabbed Abby's diaper bag and headed to the van. I held Abby the whole way down to the hospital, just looking at her face and trying to keep her alert and awake. She stared blankly, unable to squeeze my fingers. When we got down to the ER, I ran in with her and explained the situation. The second they heard the words "3 month old with a pacemaker", the ER staff moved a LOT quicker.
Fast forward to the triage room where they put in an IV, drew blood, took a urine sample, and put some numbing lotion on her back in case they needed to do a spinal tap. After what seemed like awhile they said that the labs showed Abby had a NASTY (their word) UTI (urinary tract infection). They started her on IV antibiotics immediately, and sent us up to the Pediatric ICU. They ran lots of tests to verify that indeed this had nothing to do with her heart, which was of course a relief. We asked what they thought caused her shivering and off color with blue lips and ultimately they felt it was probably just her body finally reacting to the high level of infection. It was quite scary to see. I stayed with her at the hospital that Sunday night, and she only slept from 4:00am to 6:00am (eventually being woken up at 6:00 for an ultrasound of her kidneys). We spent the next 2 days shuffling Sam around (thanks again to our parents and my sister Amy), and making sure that someone was always at the hospital with Abby. Todd stayed there with her on Monday night, and she had a much more "normal" night, thank goodness. She ended up coming home on Tuesday the 21st and then followed up with 8 days of oral antibiotics.
On the 4th of August (Tuesday), they have her scheduled for a procedure called a VCUG. We will go down to Mercy for the procedure, and she will be awake for the whole thing (with the procedure taking 15-20 minutes). What they do is they put in a catheter and inject dye into her bladder. They take continuous x-rays throughout the procedure to see just where the dye goes. After her bladder is filled, they take more x-rays as the dye leaves her body. They're looking to see if the dye/urine exits her body the way it is supposed to, or if it is somehow "refluxing" back up and bathing her kidneys in urine. If they find her to be refluxing urine, this would make her prone to bladder infections all the time. This VCUG procedure is a procedure that is evidently routine in any young babies that come in with bladder infections (not very common in little ones).
What will the results tell us? Well, the test comes back with a score for each kidney. The score can range from 0-5. If the kidneys come back a "0", it means the bladder infection was probably a fluke occurrence, and all is well in the world. If the kidneys come back a score of 1-3, Abby would need to be put on antibiotics to prevent future bladder infections. I'm told that this medication would be FOREVER, unless at some point Abby would outgrow the condition (which I guess happens). If the kidneys come back a score of 4 or 5, they will send us on to a urologist. We haven't been given any information beyond that, but I'm assuming the "fix" would involve some kind of surgery (or discussion) at that point. We'll keep you posted on the results. Her next cardiology appointment isn't until August 28th.
She's been healthy and happy since being released from the hospital, however, and we continue to enjoy our summer days together. She is SUCH a smiley baby, and she loves her playmat right now. She constantly has her thumb or fist in her mouth, which is OK with us as it helps soothe her during the night if she wakes up. Speaking of sleeping, she is doing well with that too. She takes her nighttime bottle around 7:00pm or so, and then usually sleeps until 1:00am or 1:30. Then she'll sleep until 6:00ish, when she will take another bottle and then sleep for possibly a couple more hours. Can't complain about that.
As for an update on Sam....I just have to say how much fun he is right now. Although we've had our share of struggles this summer with his sleeping routines (bedtime and naps have been my arch enemies lately), some of my most favorite moments are spent with him on the front step. He's SO verbal, and asks really great questions about things. He's definitely a thinker, and has recently become a "climber" as well. Not a great combination. If he's not outside playing with balls or in the inflatable pool, he's falling down in the driveway and skinning his knees. Poor kid has gone through more than his share of band-aids this summer. Thank goodness they're the cure-all for EVERYTHING. Oh, and did I mention he can pedal his bigwheel now? Quite an accomplishment. He recently got a summer haircut, and it's a #3 on the sides and a #4 on the top....he looks so grown up with a big boy haircut!
Well, I think you're pretty much updated now on the Pawlowski household. The summer continues to fly by, and school (and daycare) will be here before you know it. I will be heading back to school (and Abby and Sam will be heading to daycare together) on August 18th. Although this has been probably the most challenging summer of my life (physically and emotionally), it's also been the most rewarding. After all, they'll never be 2 1/2 and 3 months old again. Gotta' soak it up while we can.
Hope you all are enjoying your summer as well, and we'll continue to try and keep you updated on all of Abby's progress. She's our little miracle, for sure.
Here are a few pictures we hope you enjoy.
Watching "Little People" together
Showing off Abby's new bow
Making homemade cinnamon rolls with Grandma Ferg.
No one makes them like she does. Yum!
I love my play mat!
You guys crack me up!
Talk about recoil!
Ready for a swim...or at least a smile
Do these sunglasses make my butt look big?
BOOOOOOM! Watching fireworks in Bellevue with Uncle Mike.
Mmmmmm Gooooood! Iowa sweetcorn is the best veggie.
Yard Boyz...Yard Boyz...
whatcha gonna do...whatcha gonna do...
when they come for you!
Hey dad when is it my turn to help?
Yes I finally get my own log to cut...it's about time!
What the *bleep* this thing isn't even sharp...
wait...it's not even REAL!
Thursday, June 18, 2009, 4:15 PM CST - by Todd
FINALLY....more pictures! The photos below were taken this week at Portrait Innovations for Abby's first 'official' photo session. She is now two months old and doing great. Yesterday she tipped the scales at 10 lbs. 15 1/2 ozs....so let's call it 11 lbs pounds even! I'll post more 'candid' photos in the next few days and write a bit more in the blog about how things are going now that summer is here. But for now...enjoy the photos below.
Wednesday, June 3, 2009, 4:15 PM CST - by Todd
Where do I even start after having been Missing In Action for a couple weeks....
First of all I need to apologize...yes...apologize to all of you. That may sound a bit strange but I need to say sorry for completely cutting you off from "Abby updates" after many of you have committed a great deal of time and prayer to looking after her during the pregnancy and since her birth. Kristin and I know we have a great network of family and friends and even extended friends of friends...but it wasn't until I went MIA the past few weeks that I became more aware of just how much you guys really care. Call it a friendly smack in the face or maybe just a great reminder of how we can be here for each other.
Ok so what is this all about... Well in the past few weeks we have had quite a few people give us (ok...directed to me) a hard time about no updates. Not really a hard time...but were politely inquirying if things were ok and how everyone was doing. The first couple people asking wasn't really a big deal. Nice of them to ask and we gladly gave them an update. Then a few more kind of ribbed me about not updating the site. I knew it was because they cared about us so I said...yeah I need to update it soon. Finally it reached a point where we didn't even realize how many people were actually sharing in our 'Abby miracle' until someone stated that even their mom was checking our site on a daily basis in the past and was wondering why there haven't been any updates for weeks! Wow...it's pretty special to know that our story has reached out and touched many that we haven't even directly met. So I said to myself I need to get back to providing somewhat of a more regular update even if it's once a week. That way Abby can have a documented history of her first adventures as well as share these moments and successes with our family and friends. I will try my best going forward. :-)
Now back to our regularly scheduled program...
How is she?
Can you believe it...Abby is seven weeks old now. She had a home health visit yesterday and weighed in at a whopping 9 lbs. 12 ozs. She is a good little eater and is starting to get her 'Michelin tire' rolls on both her arms and thighs. She is such a sweetie and we really enjoy seeing her smile and coo when we talk to her. There's nothing 'involuntary' about it...she reacts to us and it's a lot of fun trying to make her smile. I'm sure an outside observer would think we look like complete fools but I am just fine with that! Sam is a loving big brother and likes to give her kisses on the head. He also likes to touch her and giggles when he just barely touches her with a finger. He cracks us up! He's been pretty darn good about accepting her into our house and realizing that our attention time is more divided now. However, in the last week or so he's started to figure it out and has a few new 'behaviors' that were previously not there. Ok...I'll say it...that little stinker is realizing that it may take new bold actions to get our attention...and those actions may not fall on the little angel list. HA!
During the past few weeks she has had checkups with the cardiologist as well as the pacemaker team. Everything looked great at the cardiologist and they said more or less we didn't need to schedule any follow-ups with them in the future unless something comes up at our pediatrician or pacemaker visits. That was exciting news to hear but at the same time we said "Are you sure?" We had our first visit with the pacemaker team last week and they too said things looked great. They ran some tests on Abby and said the pacemaker is functioning just like it's supposed to and all the data looked very good. They left it set at a rate of 100 beats per minute and didn't make any significant changes. The pacemaker Abby received is one of the smaller units on the market. As a result it doesn't have as many of the fancy 'reporting' features of the more adult-like pacemakers that she will receive in the future. Therefore they couldn't offer any historical information about how often the pacemaker is firing etc. but felt that it was probably firing nearly 100% of the time for Abby. The good news though is that Abby's own underlying heart rate without pacemaker assistance is around 76 bpm. This is reassuring because if something were to happen to the pacemaker it is comforting to know that Abby's own heart will be able to meet her minimum needs. We would just need to watch for signs of fatigue and maybe some breathing differences but that she should be ok. We will see the pacemaker team about every three months for future checkups since they can't remotely check this version of pacemaker over the phone. All in all...great news.
Dr. Brown's bottles, Reflux, and to the recliner we go
In Kristin's previous post she asked if any of you had some Dr. Brown's bottles available and I want to say thank you to those who contacted us. We ultimately didn't need to borrow any because Kristin's mom and sister went NUTS at a garage sale or two and bought 20...yes 20...bottles with complete set of nipples for stage 1, 2, and 3 for an amazing price of less than $8 TOTAL. A single bottom at the store costs $6.00 so they made out like bandits in their garage sale treasure find! At this point we only need to wash bottles every two days or so...what a blessing! (Of course we use modern technology..aka a dishwasher...but it's still nice to not have to clean bottles every time.)
The reason for trying the Dr. Brown's bottles is that they tend to work nicely by limiting the amount of air introduced into the formula when the baby is drinking. A few weeks ago we switched Abby from breastmilk to Enfamil Gentlease because she was starting to exhibit signs of discomfort similar to when Sam was a baby. It took us more than eleven weeks with Sam to realize why he was so uncomfortable with breastmilk and acid reflux that we were not going to wait it out with Abby. Abby started to have what seemed like more gas and just general discomfort. She would twist, turn, and grunt while drinking a bottle and even afterwards feel pretty uncomfortable. It's kind of hard for Kristin and I to be the judge about 'normal/acceptable baby comfort level' because of our experience with Sam. So we talked with the pediatrician a few weeks ago and they were going to have us start her on Zantac to help with the reflux. We discussed it and decided to try switching her to Nestle GoodStart formula for a week instead of the medicine. Well...after about a week it didn't get any better so we called in the prescription and started her on Zantac while keeping her on Nestle GoodStart. It's been a week today that she has been taking it. Little by little she seems to be getting more comfortable but still has periods of much discomfort. Because of the reflux she likes to be held more upright and doesn't like to lay in her bassinet anymore. I've spent a few nights in the recliner holding her just so we can all get some sleep. She's been good the last couple nights on her own so maybe we are turning the corner. We hope the Zantac will work for her because it's not as strong as Prevacid which is the medicine Sam had to take until he was two years old. The less meds the better...but we also realize she needs to be comfortable. At least this time around we know many of the tricks and suggestions to help minimize the discomfort.
Photos and Videos
Ok so where are they? I know I know...I sound like a broken record...I'll get them posted soon! I can't say much more because there isn't really anything more TO say. Other than she is really cute and the pictures are adorable and you would all love to see them and they are the best etc. etc. Oh wait...that might be rubbing it in a bit. I'll see what I can do about it.
Home for the summer
Kristin went to work for a couple days last week and wrapped it up this past Monday. She will be home for the summer with Sam and Abby...and me. Well I guess I will be at 'my office' which is now actually outside the house. But I will make frequent trips home or be 'late to work' on more than one occasion. I guess you can do that when you're boss. :-) Too bad I don't make money unless I actually work...this whole work thing is overrated anyways. Wait a second...being a parent IS work...so if I could just figure out how to make money being a Dad (of course in addition to the rewards of being with my family) that would be an awesome gig. No...a new 'daddy daycare' is not around the corner but I do enjoy being with them.
That should do it for now. Hopefully this will make up for the MIA reports and you are all 'up to speed' on the latest. Thanks again everyone for being part of our 'network'.
Thursday, May 28, 2009, 10:45 PM CST - by Todd
Wow....it has been two weeks since we last provided an update. That's my fault because Kristin sent me an email with a 'post' she typed up several days ago...but I have failed to post it here so far. We meet with the pacemaker team tomorrow for our first regular visit with them. I will try to update our blog over the weekend with more details and new photos.
Sorry for the short post!
Friday, May 15, 2009, 12:55 PM CST - by Kristin
All is well at the Pawlowski household. It sure is nice to be able to say that (and mean it). As of today, Abby now weighs 8 lbs. 6 oz.! Her heart sounded great, her lungs sounded great, and she's discontinued ALL of her meds. Great news! She's eating about 3-3.5 ounces of formula at each feeding, and she's going about 3.5-4 hours between feedings. She's sleeping well at night, and we're finding out that a baby that sleeps makes all the difference in the world. We definitely weren't as lucky when Sam was a newborn. Abby will continue to have 2 home health visits next week, but we're not sure how many more weeks those will continue. We also have an appointment with the cardiologist on Monday, to check for the return of fluid around her heart (now that she's off of all of her meds).
Getting back to Abby's feedings for a second, we've started using the Dr. Brown's bottles. Does anyone have any Dr. Brown's bottles around the house that they're not using? If you would be alright with us borrowing them, feel free to shoot us an email. Thanks!
Also...as you all go to garage sales this summer (doesn't everyone else plan their weekends around garage sales?), I would ask that you look for preemie clothing. Then, after you've found some tiny outfits....drive them to your nearest NICU floor at your area hospital and donate them.
When Abby was in the NICU, that was the best surprise we could have gotten. When we came into the NICU one morning and Abby was dressed in a REAL outfit, I couldn't have been more tickled. It just made us seem like REAL people again. When I inquired about where they had gotten the outfits, they said they were all donations. Many of the outfits, however wonderful, had holes and were worn thin. When my mom gave them a brand new preemie outfit that she had purchased for Abby months prior (mom always felt that she 'knew' it was a girl and we were certain this baby would come early like Sam had done), they were ecstatic. An outfit with the tags still on? They were beside themselves with glee, and took the outfit immediately throughout the 40 NICU rooms to find a deserving recipient (they're all deserving there).
As I've begun to shop at area garage sales, I've started my preemie pile. I look forward to being able to add to my pile throughout the summer and deliver the outfits to the hospital in the months ahead. Please help keep them in mind as well. Thanks!
We'll try to post some new pictures over the weekend.
Thursday, May 7, 2009, 11:45 PM CST - by Todd
See Kristin's post from yesterday for the latest update....but here are some photos for you to enjoy!
Mmmmm...mmmmm...slurp...mmmmm! This paci is mine!
GIVE IT BACK TO ME.....NOW!
Cozy in my soft outfit after a bath.
Ummm...how 'bout another wire please!
(Photo was during her EKG checkup at the cardiologist.)
Hey Abby...it's not nice to mock your dad.
But who's complaining...snuggle time is the best!
Enjoying our first stroller ride as a family of four. We bought a new double stroller made by Baby Trend called Deluxe Sit and Stand Plus. It's pretty cool and will come in handy for the times when both kids need a lift. Sam thinks it's pretty awesome to be able to stand (or sit) on his own. But after only a couple trips I realize I might need to fashion a tether rope hooked on to Sam in order to keep him from running off! HA!
Here mom...I do it!
Sam showing Kristin how to get set up for nursing Abby.
Grrrrr.....man is she heavy! I can barely feel my arm.
Just listen to me and I'll tell you everything need to know.
Hee Hee....I think she's stinky!
Side note...check out my new summer haircut. Dad said the ladies really dig military dudes with clean cuts so I thought I would get a fresh cut to impress my play dates.
Wednesday, May 6, 2009, 2:30 PM CST - by Kristin
I can't believe that 3 weeks have already passed since Abby was born. My how our lives have changed since then :) I think we're finally figuring out our "new normal", and starting to create a bit of a routine (if you can call it that). Abby continues to do very well, and seems to be adjusting well to her new home. One week ago, the Iowa Home Health worker came for the first time, as Todd mentioned in an earlier post. She weighed Abby and took some labs to check on the levels for her sodium, chloride, and CO2. At that time, Abby weighed 6 pounds, 15 ounces. Two days later at her pediatrician well-visit, she weighed 6 pounds, 14 ounces. Her weight was in the 10th percentile, and her head and height were in the 25th percentile. (Quite a change from Sam's 95th percentile head.) At that time, they prescribed some sodium chloride drops (high-priced salt water), and told us we could discontinue the lasiks drops we had been giving her. We also saw the cardiologist that afternoon, and there was NO FLUID around the heart, and everything checked out well. The pediatrician said she would like us to continue waking Abby every 3 hours during the day to eat, and we could let her stretch it out to every 4 hours during the night. We have been doing that religiously (thanks to Todd). I know Todd feels like the bad guy when he's waking Abby up to eat, but I give him total credit for her weight gain since then. Thanks to him, as of yesterday Abby weighed 7 pounds, 9 ounces. What a little chubber! Needless to say, she's doing great in the weight-gaining area, and we can now let her stretch it out to 5 hours during the night (if she can make it that long).
We continue to give the salt drops to her, but we've been told that we can start weaning her off of those over the next several days. She also receives ibuprofen every 6 hours, but we will be discontinuing that on Friday. It will be nice once she's off all of her meds, although she's a champ about taking them.
The home health worker will come again on Friday to the house to weigh her and listen to her heart and lungs again. This will probably continue twice a week for the next couple of weeks, depending on how she continues to do. Other than the home health visits, we'll be returning to the cardiologist on Monday for another echo, and then meeting with the electrophysiologist (the pacemaker dude from Iowa City) on May 29th. As of right now, these are our only scheduled appointments.
Well, I think that's the update for now. We'll just keep trucking along here at the Pawlowski house, doing our thing. I'll be heading back to work sometime during the week of Memorial Day, just to finish out the last few days of school and get things organized for the summer months. Then it will be 10 weeks with Sam and Abby.....I'd be lying if I said I wasn't a little unsure how that will work every day, but I'm ready to give it a shot. It will definitely be a different summer than last summer, that's for sure. Thank goodness for parks and zoo passes!
We'll continue to keep you all posted after Abby's home health visits, and let you know of any upcoming doctors' appointments. You are all family now!
PS...note from Todd...he is going to try and get some new photos up tonight or tomorrow if time allows for everyone to enjoy.
Saturday, May 2, 2009, 9:55 PM CST - by Todd
Well I know many of you are interested in the results of Abby's doctor appointments on Friday....sorry for the delay in reporting but we're glad to say everything went well. Her lungs sound very good and the echo showed that no fluid has returned around the heart. The only thing still kind of hanging out there is the continued low sodium and low chloride lab results. So they discontinued her taking lasiks since no fluid was present and hopefully this will help balance out her lab work next week. They also had us start giving her a small dose of sodium chloride mixture four times a day. Basically it's salt water and Abby is not too fond of it. I try to give her small squirts of her Ibuprofen along with the sodium chloride...sweet and salty combo...since she has to have both every six hours. Hopefully we won't have to give it very long and her body will start to balance everything out on its own.
She weighed 6 lbs 14 oz. which is the same as when she came home on Tuesday. The pediatrician asked us to make sure to shoot for feeding her about every 3 hours during the day and then every 4 hours at night. They'll check her weight next week and adjust the feeding schedule if necessary to show desired weight gain. Right now we have to wake her up for EVERY feeding when the time rolls around. Once she is awake then it doesn't take long for her to realize "oh cr*p....I'm hungry!" and starts chomping on the paci. She has been such a great baby these first few days...we aren't used to having a baby that sleeps after every feeding. Sam barely slept for the first several months unless we were holding him upright. We finally figured out that he was suffering from reflux as well as not tolerating breast milk for some odd reason. Eventually we got Sam all squared away and he has been a very good night sleeper ever since. But right now we are pinching ourselves and asking if this is normal and will Abby continue to provide us with great sleep habits. Time will tell...
I'm sure there is more to share but it's late and I needed to get this update posted. We'll have more pictures after the weekend. Thanks again!
Thursday, April 30, 2009, 2:20 PM CST - by Todd
Abby continues to do great and is pretty much a sleep, eat, and poop machine. :-) She actually sleeps so soundly that we have to wake her up to eat after four hours. Last night she ate at 10:30pm, 2:30am, and then 6:30am. We can survive on that schedule....but I think she will need to eat a little more often during the day in order to keep up with weight gain and wet diaper goals. We'll talk it over with the doctor tomorrow to find out what's necessary. Read my post from last night if you are interested in more of the 'homecoming' details.
Finally...here are some new photos:
Graduation from the NICU...the costs are probably going to be about the same as a four year college degree! HA!
Proud parents ready to show her off to the world.
Loaded up and ready to roll.
Don't wake me unless it's time to eat.
Sam reading books to his little sister.
Sam thinking Abby needs to read her own book.
Abby prepares for the next 'incoming' book drop.
Smooches! No germs being passed in that kiss! Oops!
All smiles...great to be home together.
Wanna pinch my soft cheeks?
Wednesday, April 29, 2009, 10:00 PM CST - by Todd
So here we are...heading into the second night of having our family of four all under one roof. Kristin and I are sitting on our bed watching Abby rest in the bassinet next to us. I hate to brag but she is such a beautiful little girl. :-) And our 'big boy' Sam really loves his little sister too. He wants to be right up next to her to help out with EVERYTHING! I know I will have to remain patient with him because he means well but needs to learn there are some boundaries.
Yesterday morning when we woke up at our house we found two banners in our front yard. They were a complete surprise to us and we made several phone calls to figure out who put them up. Eventually we found out it was one of our neighbors...that was a really special treat. After finishing all our paperwork and final feeding at Mercy we headed home around 2:00pm with Abby. We were going to wait until Sam was done with daycare but figured it would be better to go ahead and get settled at home first. It worked out well because when got home it gave us a chance to unload the bags and feed Abby. Around 4:30pm we loaded up in the van and went to pick up Sam. He was really excited to see her in a car seat next to his. We watched him in the rearview mirror while he kept saying "baby sisster" and smiling when looking over at her. We were just glad he didn't say "No Likey" or "out". The evening went pretty well and we eventually got Sam to bed as usual.
Abby had a great night and treated us with lots of sleep. She basically slept after each feeding and was so good about falling asleep on her own each time. She ate about every four hours and probably could have went longer if we tried to sooth her when she began to stir. However I don't think she's supposed to go much longer than four hours between feedings right now so I made sure to get the crew up and going....I know I know...what are you doing Todd! But we meet our pediatrician this Friday and we will ask her about how often she should be feeding. The last thing I want to do is wake her every two hours like we had to do with Sam when he wasn't gaining weight when first coming home. So four hours is a treat and we have early signs that Abby may be a good sleeper down the road. (Ok...it's way too early for that kind of crazy talk...but we can always dream...right?)
She was really good all day and did much of the same as last night...eat and sleep. I was pretty tired today so I took full advantage of a two hour plus nap this afternoon with her in the rocking chair. It brought back great memories of snuggling with Sam when he was little. I still have to adjust to seeing all the pink....I love it though and smile when seeing her in the little outfits. We had Home Health Care stop by today to check on Abby. They plan on stopping by two times each week for the next several weeks just to make sure everything goes well. The lady was really nice and it will be good to see how Abby grows because they do weight checks each time. They also drew blood and ran some labs on her. They are monitoring a few items because of the possible side effects of the lasiks drug. They've already decided to have us cut back and only give it to her in the morning for the next few days to see how it changes her lab results.
On Friday we go to the pediatrician as well as the cardiologist. I'm anxious for the cardiologist visit and look forward to having the echo show everything is fine with Abby's heart. We also have several questions for them about any precautions or "do's & don'ts" regarding introducing Abby to family and friends or heading out and about. She looks great and seems to be just fine but during the Home Health Care visit today we were reminded that her body's immune system may be more susceptible because of her heart surgery etc. She kind of indicated that we should be pretty cautious for at least the next two months. We'll get this all figured out because we are anxious to show her off and know many of you want to visit her as well...but obviously we will keep her health concerns as the #1 priority.
So I got the post written tonight but where are the pictures....I'm beat and going to head to bed. I will get the photos up tomorrow. :-) Thanks for being patient with me. LOL.
Wednesday, April 29, 2009, 4:45 PM CST - by Todd
Everything is going very well at the Pawlowski household. Abby's first night home was pretty much sleeping and eating...no crying at all! I thought I would have posted an update with pictures by now but the lack of sleep caught up to me today. I will try to get something up tonight or earlier tomorrow at the latest. Thanks for your patience.
Tuesday, April 28, 2009, 1:30 PM CST - by Kristin (Day 14)
Well, it's finally here......the official Abby Pawlowski homecoming! In some ways it seems like it's been months since she was born, and in other ways the last 2 weeks have stood still. I know I can speak for Todd when I say we're both excited and anxious about the transition home. I'm more than ready to stop driving downtown every day, but know that we will now be giving up what little sleep we were getting at night. As my friend Jennifer says, this will just be our "new normal", and we need to jump in and start trying to make our new routine as soon as possible.
Sam knows that "Baby Sister" is coming home today, but I'm not quite sure what he'll think when he sees her at the house. I know with a doting big brother like Sam, Abby's pacifier will never hit the floor. I also know, however, that 2 years old is a tough age to learn about sharing your parents' attention with ANYONE....especially someone who can't even throw balls back to you.
So....we have Abby dressed in her little pink outfit, and we're saying goodbye to the NICU at Mercy. We can't say enough great things about the staff and nurses we've had throughout our stay. A special "thank you" to her nurses.....Pam, Janae, Robin, Helen, Barb, Patti, Sara, Christina, Angela, Jill, Pam K., Tara, and Amanda. Quite a crew! They've been so supportive and nurturing to Abby, and it's brought us great peace of mind in the evenings when we leave and know that Abby is so well cared for. God bless them.
To all of you.....words can't begin to express the gratitude we feel for all of the kind words, prayers, and heartfelt well wishes we've received from friends and family. This has been a longer journey than we could have imagined, but no path is too long when you're traveling with friends. We will continue to keep you updated on Abby's progress, and will try to post some homecoming pictures later tonight. We look forward to you all meeting her one day soon. She's quite a young lady, and I couldn't be prouder to be her mom.
Monday, April 27, 2009, 11:15 AM CST - by Todd (Day 13)
Guess who's heading home tomorrow....you guessed it...Abby! She had a great weekend and everything continues to go well. They removed her oxygen yesterday morning and she had no problem maintaining a good level of O2 saturation throughout the day and night. This morning they did an echo on Abby's heart and the cardiologist said everything looked great...just like they expected it to look. No fluid returned around the heart and her small hole from the catheter is healing nicely. The cardiologist said as far as he's concerned Abby could go home today. But we talked with the neonatologist who oversees all of Abby's care and she said she would not have a problem with us waiting one extra day just to make sure everything remains stable. We're anxious to get her home but waiting one more night is pretty small in the grand scheme.
Yesterday she weighed 6 lbs. 14 oz. which is the lowest she has been since birth. It's not a real big deal because she has been given quite a few antibiotics and other drugs to clean out her system so some weigh loss was expected. She is eating well and we know she will bounce back on the weight gain. Abby has really loved being held the past few days and the night nurses have even had time to give her some snuggle time too. Last night when I stopped by the hospital I had a chance to hold her for a few hours. She was so zonked out that her respirations showed about 9 to 12 per minute at one point. (During the day she is 25-60) I asked the nurse if that was even right...or ok for that matter...and she smiled and said it's ok and it just shows that Abby was really comfortable. That was a good feeling...even if I did hold my breath a few times just to see if SHE was actually breathing. LOL!
We've got follow-up appointments on Friday with our regular pediatrician and the cardiologist. It's nice that we will get to see both this week just so they can make sure Abby is doing as expected after heading home. They have her taking ibuprofen and lasiks for a few days/weeks just to make sure any inflammation or fluid is held at bay. At our Friday appointment they will discuss what we need to do going forward.
We are both very excited that tomorrow should be the day Abby heads home. They did the 'car seat check' today and started filling out the discharge paperwork. I feel like we are at NASA instead of the NICU...Abby is on the launch pad and we are waiting for liftoff. The countdown has started and we hope no further delays are initiated. The weather for tomorrow in Des Moines is supposed to be sunny while the rest of the week looks rainy. Call it good timing...or maybe the man upstairs already knows tomorrow is going to be a great day! Talk to everyone later.
Sunday, April 26, 2009, 10:45 AM CST - by Todd
Abby continues to improve every day and has had all 'tubing' removed from her as of this morning....no IV's, no catheters, and no oxygen. Around 10am they took off her little oxygen tube and are going to see how she does without it. She just got done eating so they will be curious how the O2 looks once she gets into sleep mode. If they have to they will put the tube back on and try again later. The cardiologist hasn't been around yet so we don't know any initial results following her first 24 hours with the catheter removed from her heart area. We are praying the fluid is gone and will not return.
Now that they can 'swaddle' her we see some strong early resemblances to Sam when he was an infant. Last night when Kristin was feeding Abby we both commented how her face looked a lot like Sam's and knew exactly which picture of Sam we were referencing. We look forward to her continuing to improve and this time we hope we are on the home stretch...again. Time will tell.
Enjoy a few recent photos below...
Abby guarding her paci from anyone who tries to take it.
I said "TAKE YOUR BOTTLE"! Sam went to Build-a-Bear with Aunt Amy and Zack to pick out a special one for Abby. Sam selected an elephant and named her Lola. This was pretty funny because at Christmas time Sam's daycare provider took the kids to the mall and they each got to build one for themselves. Sam chose an elephant and named it "Bobo" because he couldn't say "Dumbo". So now Bobo has a sister named Lola.
Our little unicorn....they had to move her IV from the side of her head and it was relocated right smack dab at the top of her forehead.
Ahhhhh...milk is so good!
Mmmmmm....I'm in heaven....cookies, cheesecake and grapes! Last weekend Sam went with the Murray family to an event and got to enjoy unlimited desserts. Maybe that explains why he was bouncing off the walls at 9:15pm when they returned home. Just kidding Amy...I know you would rule him with an iron fist if needed but we were happy to hear he was very good for you.
Saturday, April 25, 2009, 2:00 PM CST - by Todd
The weather is dark and gloomy here in Des Moines today but we are all smiles at the NICU. Kristin and Abby are napping right now....together in the recliner! Yeah! They removed the pericardial catheter around noon today because they felt the drainage had slowed/stopped enough in the last 24 hours. They will do an echo in the next day or so to verify that no fluid is building up again. We pray that everything inside is healed enough and that the inflamation stays away. It's GREAT to hold her again because it's been over four days since we last got to do it. You could tell she needed it because she instantly relaxed when swaddled and held. What a feeling!
The last 36 hours for Abby have been very good. She continues to make forward strides and is more active (and vocal) each day. Like I said yesterday...just looking at the difference in her chest x-rays over 48 hours is remarkable. We can clearly see why she is doing better right now and we hope it will continue. We're cautiously optimistic because we thought we were starting down this path a week ago until the fluid issue popped up. But right now we are going to enjoy the moment and celebrate her recent accomplishments.
Abby still has the oxygen hooked up but it's set at a pretty low level of assistance. They'll continue to slowly wean her off and see how she does. She's been receiving an antibiotic for the past two days just in case she contracted anything in her blood. The initial 24 hour culture came back negative and we should get the 48 hour result later today. So as long as that remains negative they will then stop giving her the antibiotic. That's a good thing because she has had at least six poopie diapers since 7:00am today. YUCK! Between the antibiotic and the other drug she is receiving to clean out excess fluid she has no problem keeping us busy in the diaper changing department.
My parents came to town today and picked up Sam for the night. He'll have fun with "Papa Lake and Mom" and it will be nice for Kristin and I to enjoy snuggle time with Abby without feeling too guilty. Given all the changes in the past few weeks Sam's been doing pretty well. He's a great source of joy and laughter providing us with daily therapy. Lately at night when I get done reading him books and saying prayers we just lie on his bed together. I pat him on his back while we talk about the day and then he says "dad's turn" and pats me. The other night I said "Sam...I really like lying here talking with you at night." to which he replied "me too dad". That was the best feeling! He's such a good little boy...I'm proud to be his dad.
I'm going to head back to Abby's room and catch a few zzzz's myself on the sofa...at least until it's my turn to snuggle in the recliner. Bye for now.
Friday, April 24, 2009, 1:40 PM CST - by Todd
This morning we got down to the hospital around 8:30 am and many of the doctors had already visited Abby. We were kind of bummed we missed them however they all had good news to report.
One of the cardiologist stopped in to perform an echo on Abby and check if any of the fluid returned around her heart. He reported that everything looked very good and no fluid was present. The catheter continues to drain small amounts of fluid so they will be leaving it in for another day and then evaluate the situation. The partner who performed the procedure to insert the catheter also stopped in and checked things over. He went ahead and changed out the dressing around the entry since it was pretty soaked. They had to change it twice yesterday because the fluid was leaking under the bandages. Hopefully this fluid will disappear and stop being generated by whatever is causing the problem.
The cardiologist also said her morning x-ray looked significantly better than the one two days ago. The space taken up by the heart has decreased quite visibly and her lungs now have more room in the chest cavity. The neonatologist showed us the x-rays side by side on the computer screen and it was stunning. Two days ago her lungs had little room to expand and function properly...now the lungs are clearly defined and are starting to improve. She is down to a very low flow of oxygen and they even tried to have her off of it for awhile. According to mom the 'watchdog dog dad' ratted Abby out to the nurse when she wasn't keeping her O2 levels high enough based on the guidelines they set. Sorry Abby....dad told them and now you have the lovely nose fashion accessory back on. They will see how she does the next day or so and consider taking her off the oxygen again.
We did have a chance to meet with Dr. Law and his team from Iowa City since they were in town for their monthly clinical visits. They are responsible for helping monitor Abby's pacemaker. We had a nice talk with them and they felt that it was a good thing to turn her rate down from 120 to 100. The challenge they are faced with is finding the 'optimal' rate for Abby and this will take time as well as change when she grows.
Abby is eating very well and has no problem downing two ounces from the bottle. She eats every 3 - 4 hours and lets us know by smacking her lips on the paci when she is awake. She is so much more alert and awake in the last 24 hours. It's quite an emotional roller coaster because you go from her struggling a bit to looking great all in such a short time frame. We really hope they have things figured out this time and that Abby makes the transition well when they decide to remove the pericardial catheter. We just take it day by day and understand there are too many variables to have all the right answers all the time.
I'm actually going to head home for a few hours and try to get some work done...or should I say 'caught up'. Hopefully while I am out Kristin and Abby can both get some sleep. They should since I won't be around jumping up at each beep of the alarm or constantly checking/moving things in Abby's bed. I know that drives Kristin crazy but I can't help it...I just need to feel like I am making Abby as comfortable as possible even if she is just fine. :-)
Thursday, April 23, 2009, 9:45 PM CST - by Kristin
Abby continues to be strong and amaze us each day. I would need MUCH more sedation had I been poked and prodded as many times as she has been. She's a trooper. As Todd mentioned earlier, they've started giving Abby an IV drug to help "dry her out" and help her get rid of any excess fluids in her system. It's definitely started doing it's thing, because her noon diaper was HUGE. They also turned her on her tummy today, and she seems to be very comfortable in that position, even breathing easier. They did a blood test this afternoon to screen for any infections, and it came back slightly elevated. The doctor and nurses said that the downfall of that particular test, however, is that it's not diagnostic but rather just a screener. What that means is that it can be one determinant of infection, but it's not conclusive. The test could have come back elevated simply as a result of stress on Abby from all of the procedures she's had done. So....they went ahead and started her on antibiotics just to be safe. In the meantime, they drew some blood and are sending it out to be cultured. If it comes back negative after 24 hours, they wait another 24 hours. If at the end of 48 hours it's still negative, they will discontinue the antibiotics. If it comes back positive, it will mean there is an infection somewhere in her blood and they will deal with that at the time (possibly needing to remove the catheter that is draining the fluid from around her heart).
This afternoon, the doctor had the pacemaker people lower Abby's pacemaker to 100 bpm. The hope is that maybe this is one way that we can help her labored breathing. Perhaps after being in utero at 60-70bpm, she's having to work hard to maintain the 120 bpm that her pacemaker had been set at. We'll see. When the pacemaker gal turned down the dial to 100bpm, Abby visibly smiled at her. I told the rep that it was Abby's way of saying "Thank you for stopping the treadmill I was on".
On a positive note, she's back to feeding again (via bottle right now) and loving every minute of it. She's an eater, for sure. On another positive note, they've continued to run blood gases throughout the day and Abby's CO2 has decreased from 69 (this morning), to 62, to 60, and finally 51 at 4:00 this afternoon. That's good news.
I'd be remiss if I didn't thank all of you that continue to offer support and assistance throughout our journey. What would we do without you? I also ask myself what we would do without Todd's amazing website. It's saved us from a million phone calls and emails to family and friends, and greatly reduced the number of people I feel guilty for not calling back :). Our days right now pretty much consist of waking up about 6ish, getting Sam ready for daycare, and then being fortunate enough to have Grandma and Papa Ferguson come over to finish morning routines with Sam while we head down to the hospital. We try to make it down to the hospital in time for the doctor to stop in on rounds, and then we wait and see what the day holds for us. Then Todd usually leaves around 4:15 to go home and pick up Sam, and I stick around until probably 6ish. Then I head home and we get to spend a couple hours together with Sam before he heads to bed. That's our day.
Everyone has been so supportive and full of praise for our "strength", but I have to admit that some days it's just smoke and mirrors. There are definitely moments of frustration, pessimism, and of course exhaustion. There are days that I know if I start crying, I might not stop. Fortunately, however, these fleeting moments are tempered by even greater moments in which we can marvel at God's great miracles and know that He is by our side through it all. We find joy in Abby's involuntary smiles, I love her little burps after she eats, and she's got the most beautiful skin I've ever seen. She loves to hear me humming next to her, and she's a big fan of wrapping her little fingers around anything she can reach. What blessings she has already brought into our lives. We continue to remain by her side, counting the moments until she's home with us and keeping us up at night. How sweet it will be....
Thursday, April 23, 2009, 1:00 PM CST - by Todd
Kristin stayed at the hospital until about 6pm last night and then I returned at 9pm staying until about 2:30am. We both returned this morning and I decided to head home around noon to try and catch a few hours of sleep. I'll be heading to bed shortly.
They did a chest xray and echo this morning and there doesn't appear to be any fluid accumulation around the heart. That was good to hear. It's still draining small amounts from the catheter but we hope this will stop soon. They had to change the dressing around the opening this morning because it was soaked and oozing under the bandages.
They are still concerned as to why Abby is struggling with her breathing. She remains on oxygen and her blood gases from this morning show a fairly high level of carbon dioxide. Her body just isn't disposing of it properly. When watching her you can see her breathing is more labored and you just want to help her. The doctors are a little perplexed as to why she is having the breathing issues especially when she did so well right when she was born. They are now going to give her an IV drug that helps remove extra fluid from your body. She should start having heavier diapers in the next 24 hours and they hope by removing any excess fluid it will improve her breathing. She's been through quite a bit so it might just take a couple extra days for her body to adjust...at least that's what we are hoping.
Abby did give us a little scare yesterday around 4:30pm when she was still pretty out of it from the drugs used earlier in the day when inserting the pericardial catheter. Kristin and her mom were in the room with Abby when she made a big stretching movement and then all of a sudden stopped breathing. Her color started to change while her O2 saturation levels dropped significantly and several alarms started beeping. The nurses came in quickly and scooped her up and started bagging her. They also gave her Narcan to counteract any morphine in her body that was still sedating her. Shortly after receiving the drug she came around and started breathing again on her own. She even opened her eyes and started sucking on her paci. I know it shook Kristin and her mom to see it. A very similar thing occurred when they took Abby off the ventilator last week and I was in the room. When I close my eyes at night I can still relive the scene and I wish something like this didn't happen in front of Kristin. That's kind of the reason I went back to the hospital last night because we just wanted someone to be there and make sure she was still ok. Finally around 2am she woke up enough and took about an ounce of milk from the bottle for the first time in nearly 48 hours. That was good to see and then I felt comfortable enough to head home.
I plan on returning to the hospital later today. Kristin's plan is to stay in the room with Abby during the day and try and sleep on the sofa. It's actually pretty comfortable but to be honest it probably doesn't matter much because we are both plenty tired at this point....both physically and emotionally. Don't worry though....we are taking care of ourselves and will make sure we remain strong. :-) I know many of you have offered to help out in any way and we really appreciate it. If we haven't "called on you" yet don't feel left out....you are still on our list if needed. We have great friends and family and that's what will help us pull through this bump in the road.
Wednesday, April 22, 2009, 1:30 PM CST - by Todd
The procedure to drain the fluid around Abby's heart is now completed. They started around noon and it took about an hour before we could see her. The cardiologist had to try inserting the needle in two places before finding success. They drained 44 ml (about an ounce and a half) of fluid from the area and said that was quite a lot and their glad they removed it. When you look at almost five 10ml syringes full of fluid it is pretty astonishing to think it was all around her heart. They felt the color of the fluid was typical of that seen from an inflammation and did not really have any blood present...which is a good thing. She has a catheter coming out her chest and it will remain for a couple days just to make sure that the fluid does not return.
They gave her several drugs to 'knock her out' and she is resting comfortably right now. She did not have to go back on the ventilator and that is a great relief. They will be monitoring her closely this afternoon to make sure the medicine wears off and she continues to breathe on her own with no issue. Once she comes around she will probably be a little 'ticked off' because she still hasn't eaten anything since yesterday morning. When Kristin and I got to the hospital this AM she was fussy and clearly hungry. Eventually she settled down and got some rest before the procedure. I'm sure we will see her gulping down the milk before too long.
As far as what does this do regarding the timeframe we anticipate for her coming home. Best case scenario is probably another five to seven days in the NICU if all goes well. Any hiccups along the way could alter the 'hopeful' timeframe so we will just let things happen as they unfold. I know she is in a good place here and we want her to be healthy when she heads home. Thank you for the extra prayers today...they mean a lot.
Wednesday, April 22, 2009, 8:45 AM CST - by Todd
Good news and bad news this morning. The bad news is that the fluid around Abby's heart got worse last night...but the good news is that this will make it easier for them to try and drain it today. Ya know...looking at this as glass half full! :-) The cardiologist said that worse news would have been if it remained the same because they would still be in the dilemma of which approach to take...surgery or needle with ultrasound. I asked him how much larger is Abby's heart right now compared to what is 'normal'. He said that her heart should normally take up about 50% of the cavity space in her chest but right now her heart is closer to 80% due to the fluid. We can't help but think she will feel so much better when they get it drained.
One of the partners in the pediatric cardiology team will be doing the procedure right in Abby's room. He is in the cath lab this morning and they hope he will be available around 11am or so to do the procedure. (Who knows when the actual time will be!) They plan on giving her a sedative via the IV and hope she can remain off the ventilator...but if necessary will put her on it. The procedure requires the doctor to insert a needle between her ribs and into the pericardium sac around the heart. Then he inserts a wire down the inside of the needle after which he removes the needle. Next he will slide a catheter tube over the top of the wire and slide it into the sac. Finally they remove the wire and leave the drain tube in place. They will then drain whatever fluid they can and may leave the catheter in place for the next 24 hours or so to see if more fluid is introduced again by the heart. I realize that is probably more detail than you need but I wanted to put the info here so in 15 years when Abby reads this she knows how amazing she really is and what she overcame.
The nurses have all been great to Abby. Last night Abby wanted to 'snuggle' more in order to remain calm so they took turns holding and soothing her...plus she got her first ride in a swing. Weeeeeeeee! We really appreciate all their efforts because it allows us to go home and know she is in good hands. Right now Kristin is holding Abby and trying to keep her somewhat rested. Her vitals and blood gases looked pretty good throughout the night. Her breathing remains a little labored and fast at times. She looks great though and that makes it tougher to comprehend and accept that she is sick right now. It's a joy to see her opening her eyes and wiggling all around when the nurses try to do their checkups.
We will make a post once the procedure is completed and we've had a chance to visit her. I don't know when that will actually happen but I will try my best to share the news when I have a second. We know God is looking over Abby and will guide the doctors through this procedure.
Tuesday, April 21, 2009, 7:10 PM CST - by Todd
(read first post from earlier today in order to understanding what is happening)
We finally heard back from the cardiologist and ultimately they will not be doing anything tonight unless Abby's condition changes drastically during the night. Tomorrow they plan on doing another X-Ray at 6am and an ultrasound/echo around 8am. Depending on what they see and how it compares to today's info they will determine their next course of action. If it shows the fluid has increased around her heart then the cardiologist may just go ahead right then and there to try and drain it. This would require sticking a needle into the sac around the heart and trying to withdraw whatever amount of fluid he can. There's not a huge margin of error when it comes to sticking a needle into the heart region of a baby. More fluid would make his job easier but that would mean Abby's condition had worsen. We are confident about the cardiologist's decision...whatever it may be...and think this approach would be less tramatic than going back to surgery and on the ventilator. However if surgery is the better route then she will have to go back in.
Today when they were putting in a new IV line it was like she was a pin cushion. They tried several places but just couldn't get a good IV started. Abby tried her best to behave but she cried and wiggled. It was sad to see her go through it but it was also nice to hear her cry a bit more vocally. They ultimately had to put the IV in her scalp again since that area seemed like the most receptive area. Surprisingly she cried less when they did it there.
Just when we thought we were heading down the home stretch we get this curveball. I know it's only a bump in the road and it too shall pass. It's crazy to think it has already been one week since Abby was born. The days of the past week all blend together. It's hard not to be tired and emotional but we are both trying to do our best. We know there are friends and family from all over saying prayers and sending good wishes. It really does make a difference.
Tuesday, April 21, 2009, 4:45 PM CST - by Todd
Quick update...we still haven't heard from the cardiologist and surgeon as to what they plan to do about the fluid around Abby's heart. The surgeon has been in surgery all day and was still there late this afternoon. So they haven't even had a chance to review the video and photos together to figure out their approach. The waiting is killing us but by now we should be used to 'waiting' after all the amnio scenarios we went through with the pregnancy. Hopefully we will know something soon and when we do we will post it here.
On a good note...I got to snuggle with Abby for almost three hours today. It was awesome holding her and keeping her comfortable. They stopped feeding her at 6am this morning because they don't want her to have food in her stomach in case she heads back to surgery. She's been a trooper about it and the paci is seeing some serious chomping! Kristin stayed at the hospital and is now getting her snuggle time...plus we wanted someone around in case the doctors show up. Ken and Jane Ferguson have been around in the afternoon and offered to go pick up Sam but I told them I wanted to do it. Just when we thought we could get our mornings and nights back to a closer routine things change. Oh well.
I'll try to post something later tonight when we know more. Take care and say a prayer.
Tuesday, April 21, 2009, 10:35 AM CST - by Todd
This morning they took a chest x-ray and did an echo on Abby. Unfortunately they revealed she kind of took a step backwards from where we thought she was heading. Her heart is enlarged and there is quite a bit of fluid around it. The cardiologist said it's not dire right now but it is serious enough that they need to figure out a plan of action sooner rather than later. He's mostly concerned about the larger pocket of fluid near the right atrium that is now pushing inward against the heart.
They are putting an IV line back in Abby so they can administer any drugs or fluids that may be necessary. She will get some ibuprofen every six hours and they hope it will help reduce some of the inflamation. However, they may not wait around too long to see if it helps and instead have to manually drain the fluid. They could do this by either inserting a needle into the sac around the heart using ultrasound to guide it or she will have to go back to surgery and reopen the incision. The cardiologist is waiting for Abby's surgeon to complete his morning surgeries and then they will talk about what approach to consider.
The cardiologist felt that the fluid was most likely a result of the surgery and the introduction of the leads to her heart. It became inflamed and started producing fluid as a natural response. He doesn't think it had anything to do with her having a lower heart rate and the body working too hard. She's been doing so well since birth that he shared in our disappointment to see this setback. Just to be on the safe side they went ahead and upped Abby's pacemaker from 60 to 120 so she is now actively being paced. One thing we know from the last week is that at least Abby's own heart can do fine on its own just in case something does happen to the pacemaker. That is reassuring to me and I won't lose sleep at night worrying 'what if'.
Kristin and I are down at the hospital and will stay here throughout the day. We hope to hear back from the cardiologist sometime early afternoon with an update on how they plan to approach the current challenge. Once we know something we will post it here. Please say an extra prayer the next few days so Abby can get over this hurdle.
Monday, April 20, 2009, 10:30 PM CST - by Todd
See my previous post below from 3:20pm for the daily update on Abby. Overall she had a really good day so we hope the night is successful as well and we'll look for answers tomorrow about the oxygen issue. Here are a few more pictures since many have been asking.
Mom and Abby getting some snuggle time.
This place is boring...when can I go home.
Dressed in pink with her little cap on. She seems to be pretty hot blooded so they had to ditch the cap in order to keep her temperature from going too high. :-)
Abby's room following the surgery procedure. Lots of machines and plenty of beeps!
Abby's room today is almost empty except for the simple crib.
We put up a note on her monitor because a nurse on the weekend shift came running into Abby's room when she saw the low heart rate on the monitors at the nurses station. They are used to seeing 120 - 170 and if a baby is in the 60's they are probably going to start CPR pronto!
I know most of the news is about Abby but I thought I would share a few recent Sam photos as well.
'Sam the Builder' hard at work helping put together baby sister's crib.
Watch your fingers dad! Enjoying some time at a local Home Depot Kids Workshop.
Heyyyyyy ladies.....check out my fresh shave.
Monday, April 20, 2009, 3:20 PM CST - by Todd
This morning we dropped Sam off at daycare like a usual Monday morning so hopefully this week will start to feel like we are back on a more normal schedule. He's been a trooper this past week but it's obvious his world has been a little rocked from the 'status quo'...being two could also be a reason. HA! Kristin and I then headed down to the hospital to see Abby. When we got to her room it looked almost empty because the only thing remaining is her new crib...well...it's more like a clear storage tote that the regular baby floor uses for newborns. We were pretty excited to see she graduated to the new digs because that means she is now able to maintain her own body temperature. She looked great and was wearing a little pink outfit for the first time. What a sight to see! I will be posting updated pictures either later tonight or tomorrow.
She's been doing really well eating every three hours and is up to about two ounces at each bottle feeding. At noon she also tried her first attempt at breastfeeding and did very well even if the amount was lower than they were hoping for. She acted like she knew what was up and is off to a very good start.
One hurdle still remains before they can start looking at a release date. Abby still has the little nasal oxygen tube hooked up and every time they try to wean her off of the dosage amount she struggles a bit on her own to bring the O2 numbers up into the good range. The cardiologist this morning said Abby should not require it anymore this long after surgery and he's a little stumped as to why she struggles when it's lowered. If they can't wean her off today then they are going to do a chest X-ray tomorrow to see if it shows any issues with her lungs. If that comes back clear then they may do an echo to check on her heart. As a last resort they may up her pacemaker setting from a low 'backup only' rate of 60 to something higher so her heart rate would increase from the current range of 65-80 which she is maintaining on her own. No one has the answer right now but they aren't too worried either.
She opened her eyes a lot this afternoon before I headed home to do some work. You can tell that she is much more alert and on her way to a full recovery. We just need to kick the O2 issue. Kristin stayed down there to hang out until I return around 4pm...and then we will leave together to pick up Sam. The staff at Mercy NICU has been great and we know she is in good hands even when we are not there. It's been tough for Kristin the last few times to head home because I know she wants to stay with Abby. Soon enough we will have everyone home and under one roof.
Sunday, April 19, 2009, 4:05 PM CST - by Todd
Abby is having a really good day today. Sam and I took Kristin down to the hospital around 8am this morning and she stayed down there until around noon. She had the chance to hold and bottle feed her. Abby gulped down 40ml (an ounce is 30ml) and had no problem keeping it down. They are feeding her every three hours and it is great to see that she has gone from just 10ml last night to now handling 40ml. Kristin said Abby was a lot more alert and moving around. She even peaked an eye open for Kristin. We found out that they removed the PIC line in Abby's leg last night. It is a larger IV line that runs from the leg all the way up near the top of the heart. The nurse said her leg looked red last night and felt sort of lumpy. So as a precaution they removed it and if needed they will just start a new regular IV line somewhere else. The told Kristin that they are going to work on removing the lead from Abby's umbilical cord today and may even transition to a crib if she can maintain her temperature on her own. WOW!
Once Kristin returned home I was able to head down to the hospital around 1:30pm. I'm here right now and Abby is sleeping so I thought I would write an update. The nurse went ahead and did remove the umbilical lead around 3pm today so Abby no longer has any 'tubes' sticking in her. The only thing left 'assisting' her is the little oxygen tube on her nose but it is set not too much above actual room air. She also has the external chest monitoring wires in place but she will have these until she checks out. I got to hold and feed her for her 3pm feeding. She gulped down 45ml and then just relaxed. It was nice to hold her and the nurse enjoyed how easy it was to now move her since she has hardly anything hooked up to machines. While feeding her she 'dropped bombs' so my snuggle time was cut short because I didn't want her sitting in poo for too long. :-) After we changed her and she got situated in her bed she started to open both eyes and look around. It was such a relief to see her open both eyes and look around.
Both the nurse last night and today's nurse have commented how great Abby is doing and how far she has come in the last 24 hours. We hope she continues to make good progress and know she is on her way to coming home soon. I think they may have her try breastfeeding tomorrow if she has a good night. The main thing the nurses are going to watch the next few days are her breathing and blood sugars....which will be determined by her eating success. I don't think they are too worried because Abby has done great with eating now that she has come around from the surgery. They still talk about her possibly going home around mid-week so we will see how things go the next few days. It's been a great day today!
Saturday, April 18, 2009, 10:45 PM CST - by Todd
We all had a pretty good day today. Sam got home around 9am this morning and the three of us played for a couple hours before he headed off for a day adventure with his cousins. It was great to play and just be around him. Boy-o-boy did he have highs and lows within those two hours though. One minute playing and laughing to the next crying over who knows what. :-) We know he's tired and a little emotional like the rest of us right now so I'll cut him some slack. HA! He had a great time today with Mike, Amy, and the boys. They didn't get home until almost 9PM from a day trip to Cedar Falls and he was wired smiling ear to ear telling us about the day. It was great to see him act like good old Sam.
We got down to Abby's room shortly after noon. She had just finished chugging 1/3 of an ounce of milk in about six gulps. Mmmmmm good! That was great news to hear because it was her first 'feeding' since before the surgery. She also ate again at 3pm and 6pm while we were at the hospital. Both times she seemed pretty inactive and it took a bit of effort to get her started. But once she figured out what was up she sucked it right down. The bottle feedings were starting to take a little toll on her and her breathing rate went up while her O2 levels dropped a bit. All within a safe range but you could tell when she had to work at something. Her breathing continued to be higher when we left around 8pm so the nurse was going to watch her a little more closely.
She still remains somewhat lethargic and just rests all day. They don't have her on any pain medicine because all her vitals look good and she doesn't appear uncomfortable. I know sleeping is good for healing but I know they also want to see her 'pep up' a bit more especially when they try to arouse her for feeding. She hasn't really open her eyes much since surgery and I just got to tell myself that she is 'relaxing'. It's tough but I know she will come around even more very soon.
We did get to hold Abby for about an hour and a half today so that was GREAT! She sure gets calm on mom and I bet is itchin' to get home with us. It was just nice to be able to get her out of the 'container' bed. :-) The nurses also let us change her diapers, check her temperature, move her O2 sensor, and help keep her mouth 'refreshed'. I know Kristin really enjoyed being able to 'do' more stuff today with Abby and feel like she was helping meet her day to day needs. More MOM STUFF rather than just listening to all the beeps and alarm sounds going off in the NICU.
I just got off the phone with the night nurse (same one from last night) and she said Abby did great at her 9pm feeding. She actually opened her eyes and seemed a bit more aware than last night. They also changed her bedding and got her comfortable again. They think they figured out why she was breathing faster for part of this evening. Apparently the temperature sensor fell out from Abby's headband and the bed enclosure kept heating more often than necessary. As a result Abby had a slightly raised temperature so they fixed the sensor and she started to cool off. Soon there after her breathing rate lowered and started to fall into the more normal range. We were so glad to hear the news and can now head to sleep with little worries.
Sam and I are taking Kristin down to the hospital in the morning so she can hang out with Abby until noon or so. Sam and I will have some much needed 'dad time' and then Kristin and I will flip rolls in the afternoon. I think Kristin's sister or mom are going to hang out at our house in the afternoon as well considering Kristin can't drive yet. Then we should all be home together for supper time and starting to set a new 'normal' at least until Abby gets home.
I'd post new photos but most of them are pretty much the same as the last photos of Abby in her bed following surgery. You only want to see a few of those and that's about it. I did take some of Kristin holding her today and I hope to get more in the next day or two. Then we will post more photos.
We'll post an update some time on Sunday but I'm not sure when it will be. Thanks and good night.
Saturday, April 18, 2009, 8:20 AM CST - by Todd
We are at home this morning but I wanted to make a quick post letting people know how things went yesterday evening and last night. According to the nurse Abby had a good night and more or less slept the entire time. Her vitals and blood work all look good and she has not needed any pain medicine since 8pm last night...because she has remained sleeping the entire time. It's been 48 hours since the surgery and she has been zonked out since then. We hope today she starts to wake up a little more and open her eyes. That will be a good sight to see. Depending on how her day goes we may even get to hold her this afternoon but it all depends.
We both slept pretty hard last night and the only thing that woke us up was the 'time to pump' alarm for Kristin. Ah...good times. HA! But it also gave us a chance to call the NICU during the night for a quick update which was nice.
Sam is coming home this AM from my parents house and we look forward to some much needed play time. Then aound 10:30am he is going to head out for a day road trip with Mike and Amy and their boys. That will give us a chance to go back down to the hospital today and then get back home this evening when Sam returns. We know it's been tough on Sam the last week or so. Hopefully we can establish our new 'normal' sometime soon. You can't blame him for the confusion because now mom is home but where is the baby?! When Abby finally gets to come home he will think it's like going to the store to buy something and then head home. The last thing we want to hear from him on the way home would be "No likey" and expect us to return her. LOL.
Talk to everyone later. Thanks again for the great comments. They are really uplifting and bring comfort to know we have such great friends and family.
Friday, April 17, 2009, 4:50 PM CST - by Todd
Quick afternoon update...around 1:30pm they went ahead and removed the ventilator tube. She was still pretty lethargic when they removed it so she wasn't real active breathing on her own. They had to 'help' her quite a bit and I'll be honest and say YIKES...scary thing to watch. The doctor gave her a shot of some drug to counteract any morphine still in her body and within about 20-30 seconds she started to come around. Eventually she got things going and has been breathing very well all afternoon. What a relief! Because her blood tests from 4:30pm came back looking good they are going to give her a small dose of morphine to try and help lower her blood pressure since it remains a bit high. She is also peeing and pooping just fine so the plumbing is working again.
Just wanted to let everyone know her progress. We hope the afternoon and evening continue well. Kristin will check out this evening and we plan to sleep at home if everything remains stable here. I know it will be hard to leave her but a good nights sleep awaits in our own bed. I'll probably hold off on posting again until tomorrow unless things change. Thanks again for all your prayers.
Friday, April 17, 2009, 10:50 AM CST - by Todd
Good morning everyone. Abby had a pretty calm night since they had her more heavily sediated than earlier in the evening. She was given morphine and Ativan (a mild tranquilizer) several times throughout the night. Even being on the meds she continued to clamp down on the vent and hold her breath so they had to bag her several times to get her 02 levels back up. It's kind of a scary thing to see because her little chest/abdomen stops rising and falling. It doesn't take long to get her back to breathing regularly but it still is a little crazy to see. Kristin and I got up to Abby's room before the night nurse left and she said Abby did fine through the night but that she herself was a little tired. :-) All of the staff have been very good but we were glad Jill was on last night to give Abby the special attention.
The doctors finally finished rounds a few minutes ago so we got to hear the plan for today. The neonatologist (aka..doctor) would like to try again today to see if Abby is ready to breathe on her own and remove the ventilator tube. They just started the process of lowering machine rates and monitoring but it will take several hours and more tests before anything really happens. It will be hard to see Abby in more discomfort because they have to lower her pain meds in order for her to start working on her breathing. Ahhhh the double edge sword of medicine. I'm sure she will give it a go but if it doesn't work to remove the vent today that will be ok too.
We will continue to say our prayers and see what the day holds for us. We will try to post an update later today or early evening.
Thursday, April 16, 2009, 9:10 PM CST - by Todd
It's been kind of a long day...and while things are still somewhat stable I wish I had better news to post. Abby is still on the ventilator and they had hoped she would've been off it quite awhile ago. She hasn't had ANY pain medicine since the surgery...yes twelve hours ago! However that has just changed because at 9pm they decided to give her morphine because she is in quite a bit of discomfort. The pain medicine is kind of a double edge sword...it will help with the pain but will slow down her respiratory recovery.
They were hoping she would be off the ventilator soon but she has been fighting it for several hours now. She tries to not let it breathe for her because it hurts and as a result her O2 readings drop and then alarms go off. They have had to use the hand bag/pump a couple times to force her to breathe and get oxygen down in. Usually within a minute or two she would be ok but you could tell she is in pain. Her blood tests at 4pm were pretty good but the ones at 8pm were not so hot. Her face has swollen a bit throughout the day but they said that could be expected since she is still on the vent and trying to turn the corner.
Her 'big strong dad' is running a bit low in the emotional fuel tank right now so it really makes it hard to see her struggle. She's a fighter and the nurses are all amazed at how she is doing. While everything might not be perfect right now we know it will work out. The morphine that she just received should help her deal with the pain and then they will look at trying to lower the ventilator again later tonight to see if she can tolerate it. I know a little bit of extra sleep tonight can help recharge me so we plan to go to bed before it is too late. The nurses said they would call us if anything changed drastically but they seem to have a good handle on it right now. I know Abby's a trooper and she will be fine....I'm just ready to hold her again and have her rest comfortably in our arms.
Kristin is due to check out tomorrow but we will be sticking around the hospital afterwards. Say a little extra prayer tonight and we will update everyone some time tomorrow morning.
Thursday, April 16, 2009, 3:40 PM CST - by Todd
I took a few minutes to run home and upload the pictures below to our site. Plus I needed to load up Sam's stuff because he is going to stay a couple nights at my parents house. Lucky him because the weather looks like it will be warm enough tomorrow for 'Papa Lake' to get out the 'boooat'. That little stinker is going to get a boat ride before the rest of us do! Grandpa and Grandma Ferguson have helped us out a ton the last few days so they deserve a much needed break as well. We can't thank our family enough for everything they do.
Abby has been pretty low key all day as she still recovers from surgery. She hasn't really woke up yet but they hope she starts to get more aware and move around this afternoon. She remains on the ventilator and will do so until she shows that she is stable enough to make it on her own. She has another round of X-rays and lab work at 4pm so we are anxious to hear the results. At times today she has actually had sustained heart rates for several minutes between 120 - 150....which is a more 'normal' rate for babies. We aren't sure if that is a result of her showing discomfort or just more 'unexplained' things. When they move her onto her back she seems to settle back down around the upper 70's which is still great considering the pacemaker is set to only kick in if she drops to 60. Abby so far has chosen not to really follow the expected/anticipated script so we will see what the days ahead hold for us. We hope she can come off the ventilator early evening and that she starts to move around more. At best it will be early to middle of next week before she could come home...and that is only if things progress well without any hiccups.
Enjoy the photos below...some are after the initial delivery and the last few are from this morning following surgery. It's pretty amazing when we look at her you can not even really see the actual pacemaker. The surgeon did a great job of 'hiding' it. We can feel it with our finger but you can't see it. I'll probably post one more time before we go to bed. Thanks everyone!
Thursday, April 16, 2009, 9:15 AM CST - by Todd
Whewww....surgery is already completed! What a sigh of relief! She is on her way back up to the NICU and we will get to see her very soon. The surgeon said she was a great patient and things went smoothly. They have the pacemaker rate set at 90 right now and it is functioning all the time. Once they get her settled down and stable then they plan to lower it down to 60 or 65 to see how she does on her own. She will remain on a ventilator for awhile until she shows that she is stable again.
This morning Kristin and I went to Abby's room around 6:15am and Kristin was able to hold her. My parents and Kristin's mom showed up shortly thereafter and got to see Abby before she left. Papa Ferguson was on Sam duty again this morning and was at our house to make sure Sam got all ready for daycare today. He made it to the hospital once the surgery was underway so he will get to be one of the first ones to go into her room and see her. The nurses actually let Kristin hold Abby in the wheelchair and take her all the way to the surgery floor while we all followed along. I guess you could say we looked like Abby's fan club walking behind her down the hall. It was nice to be able to spend the extra time with her.
She went back into the surgery area at 7:15am, the procedure started at 7:50am, and she was heading back to NICU by 8:45am. They didn't even have time to tell us the procedure started...instead we noticed the surgeon in the waiting room at the desk asking where we were sitting. We figured he must be done because otherwise why would he be in the waiting room. It was such a relief to see a smile on his face and here him say everything went well.
THANK YOU FOR ALL YOUR PRAYERS AND THOUGHTS! We really enjoy reading them and know many people are saying prayers for Abby's speedy recovery. We will post more later today and I will try to get more photos of Abby onto our site. After her bath last night her little dark hair looks like peach fuzz. Her cheeks are so soft when you give them kisses. We also noticed that Abby has an angelkiss (birthmark) on the right side of her head above her ear. We can not express enough how thankful we are for our family and friends!
Wednesday, April 15, 2009, 8:30 PM CST - by Todd
I only have a few minutes before we head to give Abby a bath but I wanted to let everyone know that tomorrow morning they will be doing the pacemaker surgery. They will come get her just before 7am and it will be at least 3 hours before we have her back in the NICU for recovery.
Even though she is doing great they are concerned about sending her home without a 'backup' just in case things change. However....instead of setting the pacemaker at a rate of 120 and having full control of Abby's beat...they are going to set it at 65 and only use it as a backup so her heart rate does not drop below 65. They will monitor her with ultrasounds, ekg, pacemaker checks, etc. over the next few days and weeks to see how she responds on her own. They will check her pacemaker data to see how often it is 'firing' and if Abby's own heart is doing well on its own then they will leave the pacemaker rate at 65. Otherwise they will adjust it higher to assist her more often. There's a lot more to it but I don't have a lot of time to explain it all right now. :-)
All-in-all it's a good thing and we knew she was going to need one. However it's tough not to be pretty emotional right now. I realize I am tired and that probably doesn't help...but it is hard to see my little girl head to surgery. I know it will be ok but it is still pretty darn tough. We will post an update as soon as we know how things went in surgery. Please be patient and say an extra prayer tonight.
Wednesday, April 15, 2009, 11:32 AM CST - by Todd
Abby did well last night and rested with no problems. Her heart rate during the night was in the lower 70's and seems to have found its place at that range while she rests. It will spike up when she is awake and active but it usually comes back down when she calms down.
We missed the cardiologist this morning but got a report from Abby's nurse. (Hopefully we will talk to the cardiologist this afternoon when he checks on Abby again.) Abby's heart rate still has them debating a little bit about what to do going forward. At her current rate she seems stable and is doing fine in the NICU. The question is how well would she do at home without a pacemaker as she begins to eat, grow and become more active. They want to make sure she has the ability to 'thrive' and not just 'maintain' status quo. I get the initial feeling that they will move forward with the pacemaker surgery but I'm not sure when. It is tentatively scheduled for tomorrow AM but that has not been confirmed directly to us. By the end of today we should at least have an update from the doctors as to what is going to happen tomorrow. But given the past few weeks we take any 'appointment time' with a grain of salt since it can easily be rescheduled at the last minute.
Kristin did fairly well last night. She did have a pretty good 'shivering' episode last night before falling asleep. Her body was so tense and she shivered for 20+ minutes before it finally went away. I remember when she had this occur after Sam was born but this time it was a bit more intense. After it was over we both got some periodic sleep and were up around 6am. I was able to wheel Kristin up to Abby's room this morning and we visited for about 45 minutes. It was nice to see mom and Abby together. The plan for this afternoon is to get the opportunity to actually hold and feed Abby. She has a couple different leads and tubes hooked up but the nurse said she would help us get her out....especially if Abby is going to surgery the next morning. We might also get to watch her take her first bath this evening...time will tell.
That's it for now. We will post some time this evening after we know what the plan is for tomorrow. Thanks again for all the wonderful comments and prayers. Kristin enjoys hearing me read them to her.
Tuesday, April 14, 2009, 8:45 PM CST - by Todd (1 day old)
Well we can say that today was a great day! It's such a relief to have Abby here with us now. At least at this point the doctors can help her if they need too but I have to give an unbelievable amount of credit to Kristin for being such a great 'host' these past 39 weeks. They both did a remarkable job!
Abby's heart rate lowered a bit over the day but is still higher than most of the ultrasound appointments. She tends to dip into the upper 60's/lower 70's when sleeping and then back up towards 80+ when awake. It was exciting because I did get to change her diaper and feed her about 1/2 oz. around 5pm today. She has been sucking on her paci so loud that they could hear it at the nurse's station. LOL. She ate again around 7pm and is now resting very peacefully. We probably won't stir her too much the rest of the evening and look forward to seeing her in the AM.
Kristin continues to recover from the surgery. She is a little tired right now but in good spirits. We don't think she will make it up to Abby's room this evening especially since they are not going to be doing any surgery first thing in the morning. So there does not seem to be a rush to get to her room...which buys Kristin a little more rest time.
Right now they have tentatively scheduled the pacemaker surgery for Thursday AM but this will be evaluated tomorrow on whether or not to proceed. It's kind of day by day at this point and we are just going to be patient and see what they recommend.
Here is a quick picture from my cell phone. Notice the really nice sweat headband...she must be rockin' out to the oldies! Actually they have it on her in order to keep a little thermometer behind her ear for temp monitoring. Kristin says the workout headband fits her personality well considering Abby was SO ACTIVE during pregnancy. But we both agree that Abby will be 'scrunchy' (headband) free once she makes it home. :-) We will post more pictures in the next day or two. Thanks again.
Tuesday, April 14, 2009, 1:10 PM CST - by Todd (1 day old)
2 rounds of steriod treatments
2 amnio tests
6 scheduled c-section times....
And finally one very happy and healthy beautiful little girl!
Around 11:00am we welcomed Abby Jane Pawlowski to our world. She weighs 7 lbs. 4.4 oz. and is 19 inches long. She has short dark hair and her color looks very good.
Abby is doing wonderful in the NICU. Her lungs are just fine and she has no problem letting out a good cry. They already did an echo to look at the heart function and everything looks physically normal. And to top it off her heart rate has been between 80 - 95 which is quite shocking. During the pregnancy it averaged in the 60's but it is running higher now. The cardiologist watched the echo and he is pretty surprised by the current readings....pleasantly surprised.
As of right now they are going to just monitor Abby and see how she does through the day and night. Pacemaker surgery is on hold temporarily while they figure out what course of action to take and ultimately wait to see how stable Abby remains. Obviously this can change at any minute but that is where we are right now. We will learn more later today when the cardiologist visits Kristin's room to discuss the plan.
Kristin did a wonderful job during the c-section and she is currently in recovery. Abby was so stable after delivery I actually got to hold her in the OR and place her on the pillow right next to Kristin. We are both absolutely shocked it's a girl. They told Kristin that they will wheel her up to the NICU to see Abby before taking Kristin to her maternity room. That is a relief for Kristin because instead of waiting 5-8 hours to see baby again it will only be an hour or two.
I will post pictures later today/tonight. Right now we are pretty busy but I should have a moment at some time.
Thank you everyone for your prayers and well wishes. We ask that you continue saying prayers for Abby while we monitor her status over the next few days.
Talk to everyone later.