Happy Valentine's Day!

Maddyn wants to wish everyone a very Happy Valentine's Day!!

I've uploaded the rest of our Valentine's photos and her Baptism photos to different Shutterfly Albums in our collection. So click on the link to the right to check those out! lol- I think have posted more blog entries this week than I did all of last month! ;)

Maddyn had her swallow study Wed. It went well, and it's looking like it's not Aspiration-THANK GOODNESS- but we get the final word tomorrow from the pediatrician (we hope). That means she won't need the Apnea Monitor and the Pediatric Gastroenterologist would give us stronger meds for her reflux and we'd work that as the main cause of her problems. We meet with the Pediatric GI next Wed, but I'll post again this weekend after our doc appt and keep you posted!

Lastly- A few of you have sent emails about the NIU shooting. Both Jared and Amanda are ok. Amanda was in class, right next to where the shooting was. She's shaken up, but both her and Jared are physically ok. Thanks for the notes, I'lll pass them along.

Newborn Pro Pics - a little late

I'm very deliquent in posting these- I'm sorry!! With all of the health stuff, I just hadn't found time. Here are Maddyn's Newborn photos. These were taken when she was 2 weeks old.

Below are just a few of my favorites. The whole album is online here:
Maddyn Pro Photos - Metropolitan Imageworks
Reminder, you can click on the below to make the photos larger!








We have the digital images of these photos, so if there are any you would like printed or emailed to you - please let me know! I can send them to you in color or in b&w via email, shutterfly, or I can print them and send! If you want a nicer, touched-up print, you can order them from the Met Images website directly. :)



**Met Images is the company our friends own and are the same ones who did our maternity photos. I highly recommend them!! Both Rachael and Caryn are fantastic!!!

Enjoy!

Health Update: 2/10

I'm sorry it's been so long since I have provided an update. A lot has been happening and we've been very busy at doctor appointments and such. I will try to summarize and keep this simple and informative.

On January 29th we took Maddyn to the hospital to have the Upper GI performed. Poor thing was miserable, but she did a great job. Dave & I were so proud. The radiologist told us the Upper GI was going to test for 3 things. The first 2 were structural, and if she failed those tests it would mean with 100% certainty she would need surgery. She passed!!! The 3rd test was for acid reflux. They test reflux in three stages (severe, moderate and slight). She never even made it to stage two or three, b/c she failed stage one (severe) in 18 seconds.

We got a call back from Dr R (our pediatrician) the next day and she said what the radiologist had said- that it is severe acid reflux. The next step was coupling these test results with the Apnea Monitoring results which we still do not have. Both Dr R and Dr M (the neonatologist) were quite frustrated with the company supplying the data, and were going to switch companies to a new company, but we found out they would have required an overnight hospital stay to get the test done that Dr M wanted done. So instead, Dr M decided to do the study himself. He requested another 24 hour straight (we've been letting Maddyn off the monitor during the daytime- but this time he wanted her to keep it on all day) monitor. After that 24 hours, the company was to come and load the data, print the data and overnight it to Dr M. The company dropped the ball again and did not get Dr M the data until the following Tuesday (2/5).

On 2/1 we went in to Dr R's for our appt. She weighed Maddyn again and said that she could not increase Maddyn's dosage of Pepcid. Her dosage was already the maximum for her weight. She didn't feel comfortable putting her on stronger meds without us seeing a specialist or having the Apnea results. So she wanted us to see a Pediatric Gastroenterologist and gave us a referral. She wanted us to get in within the week.

So on Wednesday 2/6 we went to Loyola and met with Dr G, a pediatric gastroenterologist. She was great. She went over the GI results as well, and we discussed Maddyn's choking, vomiting, wheezing, snorting, etc with her. Maddyn was having a hard time breathing while we were there, so Dr G actually witnessed her doing this firsthand. She said her group is doing research on prevacid and they feel it is not a medicine that should be given to small babies at this point. She said she doesn't like to give it to babies under 1 year if she can avoid it. She said Reglan will make Maddyn even fussier- and since she's been fussy, she wants to hold off on that too. So she switched us to Zantac now but she said it would not be any stronger than the Pepcid. It was just her preference. She also put Maddyn on erythromycin. She said that will help move the food faster from the stomach to the intestines- hopefully reducing the reflux.

But b/c of her breathing and all of the apneatic episodes, she wanted to have Maddyn do a Video Swallow Study. So we had to have that scheduled. This study is going to test for aspiration (where the food goes down the trachea instead of the esophagus and is causing all of her problems). She knows Maddyn has reflux, but is concerned that we need to check for aspiration as well. So this study will help us rule it out (or find out if it IS aspiration). If it's aspiration, we have a whole other set of steps to take. Dr G also wanted to know the results of Dr M's apnea study.

On Thursday and Friday (2/7 and 2/8) we had more doctor appts/mtgs at Children's and Delnor. This was to get our Apnea results. GOOD NEWS!!! Dr M said that Maddyn was not showing signs of Apnea. WOOHOO. So Dave and I got all excited and were ready to hand over the Apnea monitor (which we were only supposed to have for a day..and now it's been 3.5 weeks). BUT, we were told that b/c there is a chance for aspiration (Dr G had shared this with them), they do not feel comfortable having Maddyn off the monitor. So she has to continue being on the monitor until they can rule out aspiration. :( This was a huge blow to dave and I. We were really hoping this was going to get easier. So right now, Maddyn has to stay on the monitor.

So next steps:
On 2/13 (Wed) we go to the hospital to have a Video Swallow Study done in Radiology.
On 2/15 (Fri) Maddyn goes in for her 2 month appointment with Dr R (and she gets here shots...poor thing, as if she hasn't gone through enough!)
On 2/20 (Wed) we meet with Dr G again and get the results of the swallow study.

After all of this, Dr G, Dr M and Dr R will be able to determine what meds Maddyn needs to be on/stay on. And what we can do to make her better. Right now she stays on the Zantac and Erythromycin, and continues to wear the Apnea Monitor for at least 12 hours each day until we hear otherwise. As annoying as the monitor is, we know it has a purpose. It's just so hard knowing she can't sleep with the monitor going off at least one to two times an hour.

Her choking and breathing has been worse lately, so we hope these weeks go by fast so we get some answers. Thank you all for your prayers and thoughts. We'll continue to keep everyone updated!!!

I have TONS and TONS of photos to share. We have professional photos, and baptism photos and Superbowl photos. So I will post those Mon or Tues!!!

1 Month & Health Update

First- Maddyn's a month old!!! YAY!!! It's hard to believe!

We had our 1 month appt last Friday. It went well. She is growing tall (90th percentile!) and gaining weight. Here are her stats from beginning to 1 month:

Time.......... Height.............. Weight
Birth .......... 20.5 in............. 8 lb 13 oz
2 days........ --------........... 7 lb 11 oz
4 days........ --------............8 lb 0 oz
6 days........ 20.75 in........... 8 lb 5 oz
2 weeks...... --------...........9 lb 4 oz
3 weeks...... --------...........10lb 0 oz
1 month...... 23 in...............10lb 8 oz

Her umbilical hernia is healing and is almost gone. The doctor thought about 1 more week and it would be healed. She used the chemical sticks on it again to solder the raw part. It's now been almost a week- and it's not healed yet, but should be in a day or two. It's much better.

At this appointment we were hoping to get an update on the Apnea monitor results. The data had been taken and downloaded that Thursday, and sent to our pediatrician (Dr R) and neonatologist. Unfortunately, it was not enough time to go through all of the data. So we were not given any answers. Dr R said that she talked to the neonatologist Dr. O -who was covering for Dr M (the neonatologist who specializes in Apnea and infants, whose wife had recently died unexpectedly) -and said that Dr O would try to have some answers for us by Tuesday at the latest. I expressed our concerns about the monitor constantly going off, and how it was really mentally exhausting and unsettling. She told us to try to hang on for a few more days. She also told us that we can take the monitor off Maddyn for a few hours in the daytime. Since we are watching her, if she would have any apnea episodes, we'd see them. But, she always wanted the monitor on in the evenings and nights. That has helped a ton just getting that relief for a few hours.

So Tuesday came and we heard from the doctor late in the day. Dr R said that Dr O looked over the Apnea results and thought they were borderline. So he wanted to wait for Dr M to get back into the office and give the final diagnosis- since Dr M is the specialist. So Dr R told us that we needed to keep the Apnea Monitor on Maddyn for 2/3 of the day. In addition to keeping Maddyn on the monitor, Dr R and Dr O wanted Maddyn to also have two smaller procedures done: an Upper GI performed and based on those results a follow-up 24 hour PH Probe. I have had both of these done and they are not pleasant..and the thought of having to watch Maddyn go through them saddens me. Poor thing. But I know that having all of these tests done will help her get better, so that is what I'm focusing on. Dr R told us that they thought Dr M would be in the office by the end of the week and we'd have the Apnea results by Friday. She said they'd call and meet with us as soon as they had them.

On Friday we heard from Dr R's nurse. She said that Dr M had concerns with the results and wanted more information. So they took another download of the monitor data and since there was so much it was going to be mailed to Dr M's office. That meant we wouldn't have any answers until Wed or even Thursday of next week. In the meantime, all of the nurses and docs have continued to tell us that we are fine giving Maddyn a few hours off the monitor each morning/afternoon. The monitor continues to alarm and go off but Dave and I are getting much more used to it. We have had two instances in which we nearly had to administer CPR- but both times we were able to get her breathing again. It's scary and we are doing our best to remain calm.

The nurse also took the time to explain how all of this was related. I was having a hard time understanding how the wheezing, snorting (she has some major cloggage going on in her nostrils), choking, vomiting, gas, etc was all related and why these particular procedures needed to be done. They looked like two different issues: breathing and then digestion. But the nurse explained that they first needed to find out if it was strictly acid reflux or both the acid reflux and Apnea. She went into detail about how they were all related, so Dave and I both feel much better about why all of these tests and procedures are being done. Worst case could mean surgery for our little one and the better case would mean adjusting her medicines or keeping her on the Apnea monitor.

So Tuesday morning we go in for her first procedure, and we should have those results by Wed and the Apnea results from Dr M by Wed or early Thurs as well. We'll have another appt with the doctors on Thurs or Friday to discuss and then find out when we have to go to the hospital for the 24 hour PH Probe. Maddyn's Baptism is next Saturday so hopefully we will have enough answers by then so that she's feeling better and more comfortable.

On a positive note, she's really starting to develop more!! She has a large interest in mobiles, toys, and the play mat now. Her attention and focus is increasing greatly. Her strength is still amazing. She has full control of her head and neck and loves Tummy Time. In fact, she's already scooting. It's so cute!

I've added more pictures to the Shutterfly Album, so be sure to take a look! Lots of cute ones! And here is her birth announcement for those that didn't see it!

I will try to post again on Wednesday or Thursday with any update I have. Thank you all for your emails and messages of support. We are so grateful- it's definitely been tough- and having such great family and friends makes it easier. So thank you!

Maddyn's health...

Maddyn's health has continued to get worse. In short, the medicine for the Acid Reflux/GERD was only helping part of the problem. Her projectile vomiting and gas seemed to get much better. Unfortunately, the wheezing and choking continued to get worse over the weekend -to the point of us not being sure if she was breathing while she was choking.

The choking spells last about 30-40 seconds, and she turns a dark red/purpley color. So the doctor decided to change her GERD medicine again and see if a different medicine might be more effective in tackling the choking issuel. However, b/c her choking episodes are so long- she also wanted to get Maddyn put on an Apnea Monitor. This monitor would check to see if Maddyn was breathing during the episodes. As we have found out- it's also going to determine if Maddyn has Central Apnea. For those who are not aware, Apnea is when you stop breathing. Sleep Apnea is the most common form- in which one stops breathing during their sleep. Central Apnea can occur during sleep or while awake. The monitor detects if she stops breathing, and sets off a very loud alarm to startle her (and us). It should push her to breathe. If she does not, we administer CPR.

This monitor is a nuisance and a blessing. It's a blessing that it tells us if she stops breathing, so we can act. But, it alarms for every little thing, and it scares the living crap out of you. Dave and I are getting absolutely no sleep- as it goes off every time we doze off. We have to rush to Maddyn and make sure she's breathing, fix the leads (that is how the monitor is attached to her) or reset the machine. The machine tests both her breathing and her heart-rate.

We thought the monitor would only need to be on for 24 hours. However, since she has been on the monitor, Maddyn has had some episodes where she has stopped breathing, so it could be possible that she might have Apnea. We just don't know. The monitor has been on since Tuesday. They came tonight to download the first set of data from the machine. It will be sent to the neonatologist and we will learn more in the next few days. We also have our 1 month appt with our pediatrician tomorrow (Friday) so we should learn more then.

The good news is that the new medicine appears to be working MUCH better. Her choking episodes (the whole reason for the Apnea monitor in the first place) have been fewer and that's great. With the monitor, we have also learned that when she is choking, her breathing continues. So that too, was some good news. So now, we just wait and see what the doctors say.

It's been one of the scariest and longest weeks of our life. Very little sleep and just lots of worry. I ask that you keep Maddyn in your prayers if you don't mind. We could use the extra thoughts.

To end on a pleasant note, here are a few "teaser" photos from our Newborn pictures we had taken. We should have all of them next week. I'll post a link to those when they are in! I'll also be uploading another set of photos to the Shutterfly album this weekend.

Maddyn Update: It's been busy!

Well, things are going a little better! Maddyn is growing quite a bit. She's getting chubby and we love it. Chubby babies are so cute!! Her eyes are already brown, and she's getting stronger and stronger. She already has full neck support and lifts her head well!

The breastfeeding has been the biggest challenge. We are still exclusively breastfeeding (My goal is 8 weeks, before we introduce formula- so we are trying our best!). There is nothing exciting about waking a sleeping baby- which you have to do when you BF, and that is hard. Especially every 3 hours. But we are now on a feed on demand schedule, so it's getting a little easier. It has been a hard battle- but one that I know is so worth it! Remind me to tell her that in about 10 years ;)

Unfortunately though, we did have a scare this last week. Maddyn has been very sick. She's been wheezing and choking a ton. She's been having horrible gas pains, and then this week, she has projectile vomiting. She started turning a blue-ish color from choking and the severe volatile puking, so we had to go to the doctor. They have now diagnosed her with GERD / Acid Reflux. They have her on medication for it- and she'll be on it a minimum of 6 months to see if it can help. We are so happy the doctors were able to do something, and she already seems to be doing better. It was so very scary, but it sounds like this is quite common in infants- so we're glad it is under control! Hopefully now we can all get a little more sleep- lol :)


We just got the birth announcements in the mail, so I'm working on getting those put together. I'll be sending soon!


Lastly, I've posted a few more pictures on our Shutterfly Collection. So there are now a total of 3 albums up there! Please click on this link: Wags Family Shutterfly Albums to see all the photos!!
Let me know if you have any problems.

Thanks to all of you who have sent gifts, cards, flowers, plants, and dinners!! Its been so very welcome- especially in light of the chaos. We appreciate it and are so grateful!!

Photos from the Hospital, Xmas and 1st week home

I've finally gotten some of the photos uploaded!
I've created a collection in Shutterfly and plan to just link the collections here as I upload more photos.


Click on this link and it will take you to photos of our Hospital Stay at CDH, Christmas 2007, Rylee and Madden, family photos, and pictures from Maddyn's first week home!

Also- here is the link to the hospital Web Nursery. They took 4 photos of Maddyn. The password is our last name!