Monday, June 29, 2009

3 pounds, 50 days, and Dr. Shah

Well, yesterday Riley finally crossed the 3 pound mark. And today, she gained even more weight. As of her 9pm weighing tonight, she was over 1400g, about 3lb 2oz! It's amazing looking at her now, and even just in the past few days she seems to have gotten so much bigger. I've constantly been measuring her with my hands and I can really see the difference since her birth. Her whole body seems more "plump", and her fingers, arms, and head all appear to have grown.

Driving to the hospital yesterday, it occurred to me that it was the 50th consecutive day I had pulled into that parking garage...crazy to think it's been that long. Wow, time flies! Today was Pam's first day back at work since before going into the hospital back on May 11th. I know it was a good feeling for her to go back, and I'm sure they were very happy to have her there. She's just going to work part-time for awhile, probably until Riley comes home, then she'll take some more time off.

We were supposed to meet with Dr. Shah yesterday, but after waiting around for over an hour he called to say he was running late and would be another 30 minutes. We had dinner plans with my parents for our anniversary (yes, last week was our 5th wedding anniversary, but we never got time to celebrate!) So we rescheduled for 9:30 tonight. He finally showed at 10:15... As a few of you have commented, this is typical for him - I guess he is the only neo/pedi-neurologist in town, so always has a full plate, plus he likes to work 3rd shift. It was the first time we had actually met him, and as a few have warned us, he really was a tiny little man - probably no taller than 5'? And he didn't have much of a personality either... But enough about him. He talked to us a little bit about the EEG from a few days ago, and the head ultrasound they did yesterday. Basically, he just confirmed that she was indeed having seizures, but based on everything else they are finding there doesn't seem to be any underlying causes other than the immaturity in her brain. They did find some grade 1 hemorrhaging in a few spots of her brain, but at that level they are not concerned, and don't even count it as any findings. So at this point, they don't plan on doing any more ultrasounds. He said they will do another EEG before she is dismissed, and probably an MRI as well. He said they plan on keeping her on the phenobarbital for the "short-term", meaning 2-3 months (maybe up to 3-6). At this point, he doesn't think there would be any reason to think she'll be on it longer. They are upping the dosage a little since she has still had some seizure activity since they started the treatments. They've also switched it to oral treatments, so they removed the IV again.

Here's a few pictures of our growing angel...

This one is from tonight. The light was just right, but couldn't get her to open her eyes. Since they put her on the sedatives (which she is still getting a few times a day to keep her calm), I don't think I've seen her eyes again.

Saturday, June 27, 2009


We didn't get the official EEG results this morning, but the nurse said it did confirm seizure activity in Riley. We are hoping to sit down with Dr. Shah tomorrow or Monday to go over the results in more detail, but he works third shift and was not expected to come back in this weekend. They've continued the Phenobarbital treatments, along with the mild sedatives to keep her calm. In addition, they've put her on "water pills" to help the fluid move through her lungs easier. Combined with the CPT treatments, this will hopefully open her airways a little more and allow them to lower the PIP and O2. So far, none of the doctors or nurses have seemed overly concerned about all this, so I guess that is reassuring. They keep throwing out the lines we've been hearing over and over - "We see this a lot in premature babies", "This isn't that abnormal", "They usually turn out just fine", etc.

I need to clarify something I said yesterday... She is going to be on Oxygen for awhile, and isn't being weaned off that, just the ventilator. Their goal is to exhibate her (take the tube out of her lungs), and move her to a nasal respirator. But her lungs need to be able to breathe on their own before they can do that, with additional O2 support.

Also, I forgot to mention her weight gain. The past few days, Riley has been over 1300 grams, which is about 2lb 13-14oz. She's quickly approaching the 3lb mark - maybe by her 1 month birthday on Thursday? We can only hope!

I came across this photo from the night Riley was born. With all the bad news coming across lately, thought everyone could use a good laugh at me in my operating room scrubs...

Friday, June 26, 2009

Rough week

Well after so many good days, Riley has kind of hit a rough patch. Please forgive me if I get a few of these details wrong or use the wrong words...I've had a lot of medical jargon thrown at us lately so I'm probably confused on some stuff...

A few days ago her oxygen kept desaturating, which means she wasn't getting enough O2 into her bloodstream so they were constantly having to raise the amount of oxygen they were giving her. After doing a scan of her lungs, it appeared that her tiny airways were clogged with mucus. It isn't abnormal for mucus to build up, but normally it secretes out and they suction it every few hours. However, they were blocking most of the airways keeping from them from expanding and allowing more O2 in. They gave her some sedatives, and did a CPT (?), where they hook a tiny vibrator up to her chest to shake loose the mucus plugs. They said it seemed to work, as they were able to suction quite a bit and her levels started improving. As of yesterday at noon, that's the last we had heard.

We didn't go back up last night, and didn't get a phone call so we didn't find out until today at noon that she had a very rough evening. From what we were told today, she started to de-sat quite a bit, to the point where they had to bag her twice. Our Neonatologist, Dr. Hsiao, said that it could be an indication of seizure activity - even though there were no outward signs of it. The started her on Phenobarbital, anti-seizure medication, and did an EEG this morning to check her brain for electrical activity, among other things. The specialist won't be in until late tonight to review those results, so we won't have any answers until the morning. Another cranial ultrasound has been scheduled for sometime in the next few days as well (was due for one on Tuesday anyways) to check for hemorrhaging, etc. They also said it could be as a result of infection, such as pneumonia or sepsis. If she shows any more signs tonight, they will start her on antibiotics right away. The longer they leave the ventilator in her, the more at risk she is to infection in her lungs. It has now been in there since birth, and by this point they normally would have liked to wean her off. Over the last week, every time they try to wean her down, based on good blood-gas results, she doesn't react well and they have to turn it back up.

When we left there this afternoon, she was holding steady at good levels and hadn't had any more episodes of de-sat or similar seizure activity since putting her on the phenobarbital. I asked about long-term effects if it was seizures, and they said that so far she hasn't had any long periods of oxygen-deprivation in the brain, which would be the only thing that could cause major issues. However, if the seizures were to come back after awhile and after taking her off the anti-seizure medication, that she would have to go back on it for an "extended period" - I don't if that meant months, years, or even lifetime. Let's hope that's not the case...

So, to say the least, the last 2 days have been kind of rough on all of us. Many people have told me that throughout this journey there will be quite a bit of "bad days" to go along with all the "good days". I guess its just extra hard because this is the first really tough time we've encountered since those first few days. Pam and I wanted to just stay up there all evening, but our good friends Sam and Tena are getting married tonight, and we are both in the wedding. Depending on how things go, we might try going up after the reception tonight or first thing tomorrow morning. I'm praying for good news.

Please keep us in your thoughts and prayers that we can get over this hump and back to more good days. I'll post again tomorrow after we find out the EEG results.

Tuesday, June 23, 2009

3 weeks!

Well, its hard to believe but tonight made it 3 weeks since Riley was born. Looking back at old pictures, its amazing how much she has changed. We see such small changes at a time that I don't think we realized how far she has come. The past few days she has really starting putting on the weight, up to about 1220 grams (2 lb 11 oz) now! Yesterday and today I got to help change her diaper - scary at first, but today I felt a little more comfortable with it. She is still just so tiny and delicate that I feel like I'll break her with contorting her legs to get the diaper around her. They've been putting bigger diapers on her...way too big, but she just pees and poops so much the small ones can't contain it all!! I guess that's a good thing?

She's been moving and squirming quite a bit, and seems to have more "intentional" and fluid movement. Tonight, she opened her eyes quite a bit while we were doing her regular changing, and at one point she was looking wide-eyed at me and it really felt like she knew what she was looking at. All the times before when she opened her eyes, they weren't in focus with each other, and it really didn't appear that she was looking at anything in particular. I tried to snap a few photos, but the only one that turned out decent was an earlier one when the nurse was helping "pose" her for a picture. You can see her dark eyes though, just like her mom.

Her oxygen levels still seem to vary from day to day, so we don't know when we'll be able to start holding her. It seems like once they get low enough, the next day she goes back up. She's doing well in every other area but hasn't had much consistency with the ventilator. We're still holding out hope to be able to do a little "skin-to-skin" holding before she hits the one month mark next week. In the meantime, we'll just have to settle for the minimal "hand-hugging" we get to do. As frustrating as it is to not be able to pick her up, we still get quite a bit of satisfaction sitting there and staring at her while she sleeps. At the end of the day, we know that we'll do whatever she needs to continue thriving - and if that means no holding, then we are fine with that. They'll be plenty of time for that later on.

Sunday, June 21, 2009

Father's Day

It didn't occur to me until we were at the hospital today that it was actually Father's Day. I guess the whole "father" thing still hasn't fully hit me. I'm sure it will come once we get to interact with her a little more. The hospital Family Advisory Council did a nice thing though, gave out Father's Day cards with our baby's picture in it - simple, but really nice to get.

Riley got a lot of action this weekend. Since Pam's baby shower was on Saturday, there was a lot of family and a few friends in town that were able to go up and see her. My sisters hadn't seen her since the first weekend, so they were really amazed at how great she looks compared to those first few days. I guess since we are up there all the time and see the progress slowly, we don't notice quite as much. The shower went great - THANK YOU to all those who were there. I know Pam had a blast, and my sisters/mom did an AWESOME job of putting the whole thing together.

As for Riley's condition, still not a whole lot to tell. She did get the IV removed from her arm. Since she is getting enough fluids in her feedings, and she isn't on any antibiotics, there was no need to leave it in. The only downside is they can't easily draw blood anymore, so she is getting heel sticks every day - which I'm pretty sure she doesn't enjoy, and always has a little band-aid on her foot. O2 levels still go crazy when we visit, but she has been doing much better when she is on her stomach - which I'm told is common. Weight gain is minimal, and goes a little up and down, but she's holding steady at around 2lb 6-7oz. I meant to get some good pictures taken today, but keep forgetting. I get distracted when other people are there and don't always remember to get the camera out. I've been asked for nursery pics as well, and as soon as we get the last few pieces of furniture in there I'll get them taken.

Wednesday, June 17, 2009

2 weeks!

Well as of last night, Riley was officially 2 weeks old. Sorry I haven't posted in a few days, but there really hasn't been much to tell. They've been increasing her feedings a little just about every day, she's up to 18mL 8 times a day now. Also, her feedings are only 60% breast milk now, and 40% SC30(?), which adds quite a bit of calories to her diet. This is intended to help her build energy reserves and help her gain weight. Since reaching her original birth weight, she really hasn't gained much, it fluctuates a few grams each day but nothing significant. They've started laying her on her stomach a little bit, which she seems to enjoy. Her O2 levels still go crazy everytime she is disturbed or handled, so we still haven't been able to hold her.

Pam finally was able to start driving yesterday, which after 5 weeks off I know she really enjoyed. She's glad to have that freedom back, and not have to rely on other people to do anything. Last weekend we got the nursery done, thanks to Pam's mom and her immense creativity. I'll try to post some pics later.

Saturday, June 13, 2009

Day 12 update

Another few days down, and not much to tell. Riley's holding steady now, her oxygen is stable at about 30% so they can't take her off the ventilator quite yet. They have been able to increase her feedings a little more, but they've got a little ways to go before they feel like she is where she needs to be. Just a little spit up every once in awhile, but she's been keeping most of it down. Weight gain is slow, but she's back above birth weight. It still amazes me every time I see her at just how small, yet perfectly proportioned she is. Here's a few photos of her holding Mommy and Daddy's hands...

Today she was very squirmy, and didn't want to stay tucked in. It is kind of ironic, because both Pam and I like to stick one leg out while sleeping and keep our foot outside the covers. Well, here you can see Riley already takes after us in this aspect...

Thursday, June 11, 2009

Riley's getting bigger!

With her last weigh-in, Riley gained significant weight for the first time! She was back up over 1000g, equal to about 2 lb 3 oz - almost back to her birth weight. They've also increased her feedings (10.5 mL every 3 hours), and as long as she isn't spitting up they'll try to continue to slowly increase. Her oxygen levels aren't remaining stable throughout the day, and her body stresses a little anytime she is disturbed, so for now they aren't planning on removing the ventilator and don't want us holding her or touching her very much. Hopefully she'll grow and mature over the next week enough to where we can start holding her a little. We did receive a small piece of good news today - the preliminary results came back from the chromosomal tests and everything appeared normal. They did these just to make sure there aren't any genetic defects that are causing any of her issues. Still some more in-depth results that haven't come back, but all signs are pointing in the right direction.

Pam had her first follow-up appointment with Dr. Depew (OB/GYN) today. He just happened to be on vacation in Europe last week when all this happened, so we got to fill him in on everything he missed. Her staples were removed, and replaced with steri-strips, which will fall off on their own in about a week. They said it will probably be another week before she can start driving, so in the meantime she'll have to live with being chauffeured around. All-in-all, she is feeling really good, able to get around on her own, and is weaning herself off the pain pills

Wednesday, June 10, 2009

Day 9 - Blood transfusion

Well today wasn't a "good day" but it could have been a lot worse. The NICU called Pam about 10am to get approval to give Riley a blood transfusion. This isn't that out of the ordinary, but still was a little scary since they hadn't ever called us at home before. They said her blood count was a little low so they needed to give her some additional blood. Basically, your body consumes blood but usually produces it at the same rate. Before full-term, babies are not able to produce the blood fast enough, but usually get supplemented from the mother. In premature cases, its typical they will need transfusions at least a few times before they are full-term.

Other than that, nothing else really new today. They changed out her IV and put a more permanent one in her left hand so they don't have to keep moving it every few days. Feedings have been increased again to 7.5 mL, 8 times a day, but it seems every time they do that she starts spitting up so it could keep fluctuating until they find the right medium. Her weight didn't change today, so still holding steady just under 1kg (2 lb 1 oz).

Tuesday, June 9, 2009

1 week down!

As of just a few minutes ago, we hit the 7 day mark since Riley's birth! It's amazing how quickly this week has gone, and how much Riley has changed and grown in such a short time. We can't wait to see what the next few weeks hold for us.

Not a whole lot to tell today, but I figured I'd keep up my once-a-day posting. Riley gained 10 grams (up to 943 grams total). They also slowed her feeding a tad, since she was spitting up a little bit each time. The arterial catheter in her umbilical was removed, so we're hoping to be able to hold her any day. Also, today they did a cranial ultrasound to check for brain hemorrhaging and she passed with flying colors! This is a good sign, as many premature infants have some slight bleeding on the brain, which usually leads to mental defects or disabilities.

Pam has her postpartum follow-up on Thursday and is looking forward to getting the staples removed from her belly. She's able to get up and around a lot more now, but still can't be on her feet for too long. Pumping is going really well, and we are starting to stockpile the milk for when Riley comes home and starts sucking it down fast.

Monday, June 8, 2009

Curious little Rascal

Today was another "good day". I had to return to work, but Pam was able to go up during the day with my mom and we went back again this evening with some friends. Pam got to change Riley's diaper, check her temperature, etc. They took her off "mid-line", which means she no longer has to lay certain ways all the time, and as soon as the arterial catheter in her belly button is removed, we should be able to hold her (hopefully sometime this week). The jaundice lights were put back on her today, but again that is very typical for premature infants. We are also hoping that the ventilator will be removed this week - and O2 levels were good, so there is still a good chance that will happen.

Tonight when we were there, the nurse turned off the jaundice light and removed her blindfold during the diaper change. We were able to snap a few good photos of our baby, and she even opened her eyes at one point to check out everything that was going on. Most likely, she can't really see anything, and her eyes don't have any pigment in them, but it was still neat to see how curious little Riley was. Here is a photo of her looking at us...

Sunday, June 7, 2009

Teeny tiny diapers!

I've shown some of you this, but thought everyone would like to see it. Below is a picture of one of Riley's diapers - the smallest I've ever seen! They are even a tad big on her. Keep in mind, I have small hands...

Last night when we went up there, they had taken the jaundice light off her, so no more blindfold covering her face. It was awesome to see how much better her whole head looked, since we hadn't seen it uncovered since the first night. Still has the ventilator taped to her mouth, but can see most everything else. I tried to take a picture, but can't use the flash and it didn't come out too well in the dark. I'll post one as soon as I get a good one.

We went up again today with my Dad and sisters. No real changes...her oxygen is really good today, so she's back to breathing "room air" - meaning no extra O2. Her heart rate was down, and they should be weighing her tonight for the first time since birth. She will likely weigh less than she did at birth, which is normal. But now that they are feeding her 8 times a day, she'll start to gain it back pretty quickly.

It's amazing to sit there and watch her sleep. She moves around a lot, and it seems with very little effort. She's so small, and yet so strong. She clearly has the will power to keep fighting through everything and we couldn't be more proud.

Saturday, June 6, 2009

Day 5 - A new bed for Riley!

Well we made it through our first night away pretty good. I know Pam and I both slept a lot better being in a nice comfortable bed, after being in those horrible hospital beds for so long. Got up early this morning and went to the hospital. When we arrived, had a nice little surprise - they moved Riley to a new bed. She is now inside an incubator bed, instead of the open heating bed. She will still need her temperature regulated for awhile, but doesn't need the heat lamp directly on her anymore, just hot air pumped in. The incubator also helps keep sound out, since she's still very sensitive to outside noises.

Here's Riley in her new bed, with Mom and Grandma watching over...

A close up...still has lots of tubes and wires, but its getting better!

We received another piece of good news today. They did another echo and the PDA duct has closed, so the medicine worked and she won't need the surgery! Since the PDA medicine kept them from being able to give her much food, they can now start injecting milk into her feeding tube about every 2-3 hours, around 5 mL at a time. Oxygen, heart rate, temperature, etc. is all looking really good as well.

One other thing I keep forgetting to of the hospital staff that came and visited us the first day was a social worker (they assign one to all NICU patients). Because of Riley's low birth weight, she qualifies for a bunch of government programs. She will be receiving payouts from Social Security while she is in the hospital (about $30/month), and Medicare will cover all of her hospital bills that our insurance won't cover - which will save us quite a bit of money!! In addition, once we bring Riley home, Rainbows United will be coming to our house on a regular basis during her infancy to check her development, and give her any special care in areas where she may be lacking. We hope this won't be needed, but it is great to know this service will be available if she is behind at all. Her prematurity will be taken into account, and they will always use "adjusted age" to calculate where she should be - meaning since she was 3 months early, they will always assume she should be 3 months behind (i.e. walk at 15 months instead of 1 year). Premature infants are usually caught up within 18-24 months.

Pam's milk is starting to come in. She had barely been getting 1 mL each time before, but just an hour ago she got almost 30 mL! It should start flowing full soon, which will allow us to store up quite a bit of milk for Riley. They will steadily increase the amount they are giving Riley, and hopefully she'll start growing really quickly now with Mama's milk providing all the nutrients and antibodies.

Friday, June 5, 2009

We are home! (2 out of 3 of us at least)

Like Dorothy said....There's no place like home. Although it was hard leaving the hospital without our little girl, I know Pam is somewhat relieved to be back here and will be able to sleep in her own bed for the first time in over 3 weeks. Had a car full of stuff to bring back - its amazing how much "stuff" you collect in that amount of time.

We did check in on Riley before leaving and she's doing real well today. They had removed 2 of the jaundice lights, so only one of those left on her now. The swelling in her right arm is almost completely gone, and her jaw is looking better too. She has been very active lately and is quickly fitting into her new nickname pretty well - "Rascal" (since her initials are RAS).
Pam was able to help change her diaper, check her temperature, etc...

We got a little "hand-hugging" in as well...

We are hoping to go back tonight at some point, but might have to wait until tomorrow. Pam needs to rest a bit, and there's lots of things we need to get done now that we are out of the hospital.

Day 1-3 Update

Welcome to our first official blog post...I've copied below all the emails being sent out over the last month but I figured as time progressed this would be a lot easier than continuing to send out emails. Also posted a few photos from the last few days as well.

Since Riley's birth a LOT has happened. She's had all kinds of things done to her, but is handling it all really well. They did put her on a ventilator right away, but by the end of the first night she was moved from an oscillating one to a conventional one, and the oxygen level has been moved down to almost normal levels - which means she is only getting assistance with moving the air into her lungs and not needing extra O2. You'll notice the extreme swelling on her right arm/shoulder in the early pics - this was from her arm trying to "deliver" itself down the cervix. It took quite a bit of wrenching to get her unstuck during the delivery. I am happy to report that as of last night the bruising and swelling there is almost all gone. In fact, pretty much all the bruising around her body is gone - still a little left on her face, but with all the stuff attached it will take a little longer. She is about as healthy as she can be, and the only problems we have run into are typical for someone as premature as her. She has Patent Ductus Arteriosis (PDA), which basically means there is a blood vessel between her heart and lungs that should close after birth that hasn't - but this is very common in premature babies and she is being given medicine to help force it closed, if it doesn't work then surgery will be required to fix it. Speaking of her is actually on the RIGHT side of her body instead of the left. They do not believe it will move back, but also don't think it will cause her any problems. In fact, they said this is actually more common than people realize - some of you might have a right-sided heart without even knowing it. She also has some minor physical defects that are most likely attributed to her tight positioning in the womb - curved spine, underdeveloped left jaw, etc. They do think most of this will "fix" itself as she continues to grow. Last night she had her feeding tube installed (small tube in her nose). You'll notice the blue light on the last photo - she is being treated for jaundice, but again very typical for premature babies. Other than that, everything with her is going well.

Now on to Mommy... By the morning after delivery, Pam was starting to feel the numbness wear off and the pain setting in. They put her on Percocet, along with quite a bit of antibiotics. They had told us they thought she might have an infection, and after opening the uterus they did smell an odor, indicating bacteria. They tested the placenta and she did in fact have an infection. This morning we were told it was a strep infection, similar to strep throat (not related to strep b). They are pretty sure this is what caused the contractions, and could even be the reasoning why the water broke in the first place. Pam did start pumping the day after, and while hasn't had much results we have been able to get just enough colostrum (starter milk) for them to inject in Riley's feeding tube. As most of you know, this is the most important thing we can do for her right now, as Mama's milk is always the best source of nutrition and antibodies that will help her develop quickly. Pam's 16 staples will be staying in for a couple days longer than expected, thanks to the infection. They have told us we will be going home today, since Pam is able to get up and around on her own, and the pain and fever have subsided quite a bit.

Over the first 24 hours, we had tons of hospital staff coming in with different things. We also got to sign the birth certificate, which was a good feeling. At some point, they will be posting a "GrowCam" on Wesley's website with a 90-second video for all to see little Riley. It is only a one-time thing however, unless we decide to pay for the service. It is password protected, but I'll post the code on here when we get it (should be any time). Photos on the nursery section of the website won't be posted until she's ready to leave.

Over the next few months, we'll be making daily trips up here to see Riley. Our presence will be a huge help in her development - holding her, touching her, talking to her, etc. They strongly recommend "skin-to-skin" holding, as it is proven to have huge positive effects. Pam will be up here at least a few times a day to pump, hold, etc. We are hoping to be able to bring Riley home sometime in August. To be released, she just needs to be able to hold her own temperature, breath on her own, bottle or breast feed, and gain weight consistently.

We've had tons of visitors over the last few days and weeks, and appreciate everything everyone has done for us - both directly and indirectly. We would love for each and every one of you to be able to see Riley up close. The NICU has special rules and visiting hours, but we will try to accommodate as many of you as possible. As long as you are a healthy adult (sorry no children), and are with one of us, you can come in and see her. Depending on her condition and mood at the time, you may even be able to touch or eventually hold her. While we can go in 24 hours a day, visiting hours for others are restricted to 8:30-9:30am, 12:30-2:30pm, 4:30-6:30pm, & 7:30-8:30pm. We hope to set up some kind of regular schedule for us, so feel free to ask when we are coming are we won't mind bringing a few people at a time to show off our little angel.

I'm sure I forgot some details, as my brain is sleep-deprived and has been on over-drive the last few days. But I will continue to post as I remember things, or as updates become available. In the meantime, please pray for us as Riley still has a long road ahead of her. Pam and I know we will be strong parents, and with the huge support system of family and friends we are confident we will get through this better than we came into it.

Photos (Days 1-3)


Daddy holding his baby's hand for the first time...

Baby Riley with all kinds of stuff hooked up to her. Notice the bruising/swelling on the right arm/shoulder...

Daddy got to hold her for a bit while they changed the bedding under her...

After turning her on her side, hands went straight to the mouth. So cute!!!

Mommy with her baby for the first time...


Under the jaundice lights now. Swelling and bruising has gone down, still lots of tubes though...

BIG NEWS!!! (June 3, 2009)

Well, first let me get this out of the way…..

Pam and I are proud to announce the birth of our first-born daughter, Riley Alexis Skach, at 8:49pm on June 2, 2009. She weighed in at 2 lbs 4.5 oz and measured 14” long. She has lots of dark hair, and dark eyes, but that could change. Mom is doing fine, waiting for the pain to set in after the numbness wears off. Baby is breathing with assistance from a respirator, and under the circumstances is doing well.

Now for the follow-up from today’s earlier email….

The contractions started to speed up about an hour after I sent the email 12 hours ago. By 6:00 they were less than 5 minutes apart so we were moved downstairs. Pam was hooked back up to the monitors, and another sonogram and speculum exam was done. The placenta had moved, but the baby appeared to be breach. By 7:30 or so, she was dilating very quickly so they made the decision to order a c-section, and soon after we were wheeled off to an operating room to get set up. The whole process almost seems a blur at this point, but I know we both experienced a thousand different emotions in a very short time-frame. We were able to see her before she was taken out to the NICU, and a few hours later we were able to visit.

Since then, we’ve been moved up to a new room (see below) and will be here for probably 3-5 days for Pam to recover. Baby Riley will likely be here for quite some time, expected to come home somewhere around her original due date – August 29th. As of tomorrow, we welcome any and all visitors, but please call before coming so we can avoid having too many people at once. We are allowed to take visitors to the NICU to see Riley, but visiting hours are very limited so we may or may not be able to take very many people in.

At this point, it is hard to assess Riley’s condition. She doesn’t look that great right now, very bruised and her body is contorted from the tight space and “rough” delivery (it took quite a bit to get her out). At the time, her right arm and shoulder area were tucked in a weird position in the uterus that has caused some swelling, which will go down over time. Please keep her in your prayers, as we will surely have a rough road ahead of us over the next few months. It will be very tough going home without her, and having to make daily visits back here to see her, hold her, feed her, etc. Thanks to many of you for sharing your personal stories of success you’ve gone through or witnessed in similar situations. They are all very inspiring and we hope to have the same outcome.

Here is contact information. Again, please call or text one of us before visiting…
Room #: 03-551
Room phone #: 316-962-3637
Pam cell: 316-737-0087
Joe cell: 316-304-5445

Week 4 (June 2, 2009)

Yesterday was the beginning of week 4 of our extended stay here at Wesley. Since last week, really no changes but the last 24 hours have had a little more excitement. They decided to do another sonogram yesterday just to check the status of the placenta and amniotic fluid. Just as last week, the fluid still isn’t accumulating – it’s leaking out about as fast as it is being produced. They also said our baby girl is “measuring small”, but not small enough to move the due date. They did find that the placenta had “moved up” a little bit (more likely that the uterus grew down), which means it is no longer blocking the cervix. However, the way the baby was positioned they were worried about an arm or leg actually protruding through the cervix and down the birth canal (I know, creepy isn’t it??). They did a pelvic exam, and luckily there wasn’t a little infant hand waving or anything. They will keep a close eye on it however, because that can complicate things and force an immediate c-section. If the baby is able to turn, and the placenta stays out of the way, it is possible Pam could still have a natural birth instead of a c-section.

Today started out a little crazy too. Pam woke up shortly before 4am with some light contractions (about every 5 minutes). By 7am they had slowed down quite a bit, to about 10 minutes apart. They gave her some muscle relaxants (a combination of Tylenol and Benadryl) to calm the cramping. It has made her quite tired though, so she’s been napping all day. They did the normal NST (Neonatal Stress Test) that they do every day, and it still showed normal heart rhythm and movement, with no signs of real contractions. Since then she’s been having a light cramping/contraction feeling about every hour for about 10 seconds. No word on what this means or what we can expect. We are hoping that the contractions continue to slow-down and subside so we can get back to “being boring” like we have been the last few weeks. If the baby were to be born now, we are at 27 ½ weeks gestation (about 12 ½ weeks early – due date is August 29th). She should be about 2-2.5 lbs, and according to the statistics a baby at this premature has about a 90-95% survival rate (much higher than the 55% we were at when we came here). She would still be in the NICU for quite some time, probably pretty close to the original due date. Needless to say, we prefer to prolong the birth as long as possible, but if it does happen we feel real good about the situation and have hope she would be okay.

Please continue to pray for us. We all appreciate the kind words and well-wishes we have received – and I apologize to all those I haven’t responded to…

Week 3 (May 26, 2009)

No changes again this week. We made it to our first goal, which was to get to 26 weeks. Our next goal is to make it to 30 weeks, which will get us close to being out of the "very premature" category. They did another sonogram last week, and confirmed there is still very little amniotic fluid in the womb. It is still being produced by both Pam and the baby, but is leaking out just as fast. Will probably be doing sonograms every 2-3 weeks just to keep confirming that the baby is doing well. Many have asked me what the risks are with the lack of fluid...there are a handful of minor, rare risks, but for the most part the amniotic fluid helps with the baby's lung development. They have offset this with the steroid shots she received the first couple days, and the baby will likely have breathing issues both as an infant and going into childhood. It is very likely she will have asthma or other breathing difficulties.

Again, thank you to everyone for their thoughts and prayers. Pam is really feeling loved lately. Starting to plan for a baby shower in the hospital since it doesn't look like she'll be home anytime soon.

Week 2 (May 19, 2009)

I'm glad to report that we've made it over a week now without anything else really happening - which is a good thing. The time has really flown with all the visitors stopping by. I took Friday afternoon off and was able to take Baxter up there to see Pam, which both of them really enjoyed. We've had some nice weather, so been trying to take walks outside in her wheelchair at least every other day. The nurses all know me by name now since I'm constantly coming and going, I'm still staying there every night but might start going back to the house next week.

Yesterday they took Pam off all the antibiotics, so now the only time the nurses come in is to deliver her meals and check the baby's vitals (which can be really annoying at 2:00am). Hoping things continue this way for awhile. We are at 25 weeks now, hoping to make it another few months before birth - everyday she can keep the baby in the womb greatly increases our chances of a happy, healthy little girl.

Since I've been asked this about a thousand times, No we do not have a name picked out. We've talked about it just about every day, and have narrowed it down to a few but haven't decided on "the one" yet.

Again, thank you to all who have expressed their support through emails, phone calls, flowers, prayers, etc. Keep it coming!

Day 5 (May 15, 2009)

First, I apologize for not sending a note yesterday. After receiving a bunch of notes and calls late yesterday, it sounds like I freaked a few people out when they didn't hear from me. There wasn't much to tell, and I got busy at work so just figured I would wait another day. Right now, no news is good news!

Wednesday night we were able to take a tour of the Neonatal Intensive Care Unit (NICU). It was a little eye-opening, and pretty tough to see for both of us. Its scary to think that our little girl will almost definitely be spending time in there. Luckily, we know she will be in good hands. They have a great staff down there and really know what they are doing. We were prepped for all the procedures and policies they have, so have an idea of what to expect.

We've been settling into our new room nice, and have already gotten to know almost all the nurses. It's strange, but at least for me it almost feels like we are regulars at a hotel or something. Nurses are only popping in every few hours instead of minutes, and since we are at the end of the hall we get a lot of peace and quiet. They even have a fridge where we can store some food and drinks.

As far as Pam goes, she is still feeling well. Started to have a little cramping, but they are attributing it to the diet and antibiotics and not to contractions. Hopefully it stays that way. Heartbeat on the baby is still strong and she's moving around a lot, which is a good sign. We're hoping to go and get some fresh air this weekend, and maybe bring Baxter (our dog) up to the courtyard or something so she can see him.

Again, thank you to everyone who has stopped by, sent flowers, called, etc. It is really helping keep her spirits up. And I think all the prayers are working!

Day 3 (May 13, 2009)

Yesterday went well. Pam still has no feelings of contractions, which is a great sign. She was taken off the baby monitor, and finished up her last round of IV's this morning. She also was able to change into her own clothes, which she enjoys a lot more than an hospital gown! We've been told she can get around in a wheelchair if she needs to get some fresh air, or just get out of the room and tour the hospital, so we're hoping to start doing that once a day. Our mothers are doing a great job keeping Pam company during the day so that I can return to work. Luckily, I'm not that far in case something does happen.

We were able to move into a new room with two beds (so I don't have to sleep in a recliner). She is now in room 3-416, which should be a permanent setup until the baby is born. If you would like to come visit, here are some easy directions:
1) Park in the North parking garage (on Murdock, just east of Hillside)
2) Enter the hospital on the ground floor and follow the hallway just past the information desk to the first bank of elevators
3) Take the elevators to the 4th floor
4) Take a left off the elevator and go to the end of the hallway, last room on the right

Again, there are no restrictions on visiting hours, but if you are free during the day it is a better time since there are a lot of people stopping by in the evenings. I think she has plenty to keep her occupied now, thanks to everyone's gracious donations of books, games, crosswords, etc. Feel free to call anytime, especially if you are planning on visiting - our cell #'s are listed below or you can call the room at 316-962-3592.

Thank you to everyone who has sent in their prayers, called, emailed, visited, etc. I know I haven't responded to everyone but I'm doing my best. We really appreciate all the love and support. Its awesome to know there are so many people that care.

Day 2 (May 12, 2009)

I know I have talked to many of you already, and some may have heard through the grapevine, but I figured I would just try to update everyone at once via email....

Yesterday, Pam woke up to a gush of water, followed by some heavy bleeding. She called me at work and I rushed right home to take her to the hospital. After a few tests and exams, and another sonogram, they determined that her water had indeed broken and that she has placenta previa - which means it was below the baby covering the cervix (instead of being to the side or above). The baby did still have a strong heartbeat and was not showing any signs of distress. They admitted her right away and said she will definitely be there until the baby is born, and on permanent bed rest. We are at 24 weeks right now (40 weeks is full term), so the ultimate goal would be to get her to at least 34 weeks - in which case they would go ahead and deliver. They said 50% of women in this situation will make it two weeks, which at this point is our first goal. Looking over the statistics, 26 weeks will put us in a much better category as far as survival rate and chance or defect. But, it could also be as soon as tomorrow - once she shows signs of contractions, they will order an immediate C-section. They put her on antibiotics (prone to infection since the sac is ruptured), and steroids (to boost the baby's lungs since they are not yet fully developed).

Last night she slept pretty well (can't say the same about myself). With the IV's, baby heartbeat monitor, and "booties" she is wearing to keep circulation in her legs, it is pretty noisy at night - not to mention the nurses coming in constantly to check on her. All in all, she is feeling very good. We are hoping that continues. So, at this point it is just a big waiting game...and no news is good news.

We are at Wesley Medical Center in Wichita. Currently, she is in a Labor & Delivery Room, but once the bleeding stops, we will be moving to a more "permanent" room with two beds since we could be there over 2 months. I will send out the room info when I get it. As far as visitors, I've been told there are no restricted "visiting hours", so anyone is welcome anytime - but we ask no one before 8am or after 10pm so she can rest. But certainly stop by and say hi, the conversation really helps the time go by and take our minds off it.

If you need to reach us, you can get either of us on our cell, or me on email anytime.
Pam cell: 316-737-0087
Joe cell: 316-304-5445
Joe email:

Thank you to everyone who has sent their prayers and already helped us in so many ways. I'll continue to update you all as things change.

To read more about Placenta Previa, click this link: