day of firsts

Today Maddy definitely had a "day of firsts".

1. Maddy started on solid foods today and she actually liked her rice cereal!

2. Maddy rolled over for the first time from her back to her stomach! She has been able to roll from her stomach to her back for a few months now, and we are both pretty sure that she will be crawling soon. A quick video of her rolling over is posted below:

Christmas wish

This time of year it is easy to become distracted with all the events surrounding the holidays and Christmas. As we reflect on our past year, and as Christmas and the new year approaches, we are going to to remember the things we are thankful for and to make a conscious effort to remember the "reason for the season". What a joy it is to have a relationship with Jesus Christ, and he has been our rock through the good and the bad that has surrounded Maddy's arrival. Without Christ as our rock through the trying times, I do not think we could have maintained a positive outlook during Maddy's stay in the hospital, and we easily could have become discouraged and resentful for the events surrounding her birth. As I reflect on Maddy's birth, I can only imagine what it was like on the day that Jesus was born. Just holding Maddy in my arms and thinking about our savior as a child paints such a beautiful picture in my mind.

As Christmas approaches, I would like you to consider one question. Are you going through the Christmas motions because you are following what our culture suggests, or because you truly believe that Christ was born onto this earth so that you can live?

If you or any of your friends do not know what it is like to have a relationship with Jesus Christ, it is our Christmas wish you will be able to experience this joy, and share in our joy this holiday season.

Merry Christmas
JAM (Jesse Ashlyn & Madalyn)

Thanksgiving (belated post)

Our little girl is so much fun and has brought untold joy into our lives. Her smiles and laughter melts both of our hearts. This Thanksgiving, we are so thankful for the support system that we have, including our family and friends, as well as people that we do not even know that have touched our lives by keeping up with our blog. Maddy has been such a blessing since she was born, and even through the challenges, we feel extremely blessed. We hope you enjoy the latest pictures and videos of our baby girl!

if you are friends with Jesse on facebook, there are a few new pics there as well!

Halloween

Our poor dog.....

Maddy going on a walk

It is time for the monthly update to the blog. This past month, we have been on the road for what seems like every weekend. We have gone to the mountains (twice), to Raleigh and even to Tennessee. Traveling with a baby is really something that you don't appreciate until you have one, I can't even describe to you how much stuff we carry with us when we pack up the car, and trying to schedule driving around her feeding times is a huge challenge. That being said, it is nice to finally be at home and Ashlyn and I are looking forward to being at our house this upcoming weekend for the first time in awhile.

Maddy is doing well, and is still on pace with her developmental milestones. She has rolled over a few times, and we are still trying to capture her doing it on a video so we can show people. When she does it, she is so happy and seems to be very proud of herself. She is such an independent, happy little girl, and we love spending every minute that we can with her.

all tuckered out from a hard day's worth of playing

its been a while

I finally found some time to post an update on our blog. Maddy's sugar levels are doing really well, and we have definitely seen a ton of progress in that area since our last stay in the hospital. We did have some issues with the formula she was on since she seems to have a milk allergy (I guess there is always something with kids) and she was having a bunch of issues related to that. After going through about 4 different formulas (including the kind that was recalled due to beetle larva), we ended up on what we think is probably the most expensive option out there. Of course Maddy does not like the powder version, so we are feeding her the liquid version....
Anyway, we are so excited that she is doing much better and that we are finally feeling what it is like to have a normal child. I posted a few recent pictures of Maddy, she is such a happy baby.

God is so good, and we are thankful that Maddy is doing much better and for the joy that she has brought to our lives.

If you still have not met our precious angel, we are looking forward to you being able to soon.

Homecoming version 2.0

Today we are being discharged. The pediatric endocrinologist is still somewhat concerned about the couple of low blood sugar readings over the past few days, and has instructed us to check Madalyn's blood sugar before each feeding. We also have to feed Maddy every 3 -4 hours in order for her to maintain a relatively consistent blood sugar level. It will be nice to be home with her, however, I expect that we will both be pretty nervous.

We have a follow up visit with the Doctor next week and hope that everything will come back as normal.

Thank you so much for the prayers.

Well, we thought we would be able to be discharged tomorrow (Friday), but Madalyn just had a blood sugar reading of 54, which is too low based on what the doctors would like to see. We are not sure what they are going to want to do next, and we are feeling pretty discouraged. They took her level again an hour after she started eating, and it had jumped up, just as expected, which is somewhat encouraging. We are expecting to talk to the doctor tomorrow morning, to see what they think we should do next. Please pray for us at this time as we are really discouraged.

I think it is fair to say that both Ash and I really dislike being back in the hospital. we don't really have any news to pass along right now, but so far, we are on a schedule of feeding her every three hours, and having her blood sugar checked before each feeding. Both we and the doctors have decided that it is best to stop breast feeding at this point so that we can give her a bottle and make sure that she is getting enough at each meal. We also think that the reason her blood sugar got as low as it did was because she was not getting enough to eat from Ash, since we started breast feeding exclusively this past weekend. It seems that little Maddy prefers bottles anyway, so we really don't feel too bad about this decision.

As far as a long term game plan goes, I don't think we have one. The Doctor working on her case seems to think that anything serious can pretty much be ruled out, but we are unsure what the next step is going to be and we are wondering if we are going to have to feed every three hours for the rest of her life. Please continue to pray that the doctors find a cure to her low blood sugars and that we can find some sort of normalcy for our family.

I was hoping that I was finished posting to this blog, but it looks like I am going to have to "sharpen my pencil" and get prepared for more updating. So as of 3am, we were transferred to the main hospital uptown for testing to be performed on Maddy. So far she has been tested for a digestive problem, but they seemed to have ruled it out as of right now. The surgeon that we talked to seemed to think that there may be an underlying issue with Maddy's pancreas, which is a rare but possible diagnosis that was briefly discussed and dismissed during her stay in the nicu a few weeks ago. As of right now, we are probably staying here in the hospital for the next couple of days, and will be discussing Maddy's case with a pediatric endocrinologist and other surgeons here on the pediatric floor. We are hoping that they will be able to determine the underlying cause of the problem. Before last night, Madalyn had been doing great with us at home, and it is very
disheartening to see this problem present itself again. Yet again, we would like to ask for your prayers, especially that the doctors will be able to diagnose the problem.

Tonight we had to rush Maddy to the ER because her blood sugar was down to a dangerous level. Ashlyn and I could tell something wasn't right, and we decided it would be wise to check it. We are getting transferred to the larger hospital uptown so Maddy can be evaluated overnight. There is a possibility that Maddy will have to have surgery on her stomach related to a digestive problem that the ER doctor and the pediatric surgeon suspect. Please pray for us at this time and that Maddy will be ok.

Today marks the end of our first week with Maddy being home with us. We can't tell you how exciting it has been to have her home, and also how challenging it has been, trying to adjust to having her home with us. Maddy seems to be doing well, and is getting into a pretty good routine. As parents, I think we are probably a bit more nervous having Maddy home with us (or "wireless" as my brother would say) than we would have been with a baby that did not have an 18 day stay in the NICU. Overall, Maddy and Ashlyn seem to be doing well, and I think we are starting to get the hang of this parenting thing.

One of the reasons that I wanted to make another post to this blog was to say again, how thankful we are to everyone that has prayed for us, that has helped us, that has cooked for us, and that has encouraged us. You are such a blessing in our lives, and honestly, we could not have gotten through the first 3 weeks of Maddy's life without each and everyone of you. I hope that as you read this, you will know that you have touched our lives. Please continue to check back here as we will continue to post pictures and periodic updates about our family.

If you haven't met our precious angel yet, we look forward to you being able to do so.

Love the Monza family.



ps. the picture of Maddy on the yellow blanket was taken on my cell phone during her photo shoot at our house. We are so excited to see the real pictures taken by Dimples and Curls photography here in Charlotte.

homecoming

Maddy has finally come home! She was discharged around 10:30 this morning, and we are glad that she is finally home with us! Thank all you so much for your prayers over the past couple of weeks, we really needed them! God is good and we are thankful that he has allowed Madalyn to get better, and for us to be able to bring her home. The past 3 weeks have been the longest 3 weeks of our lives, but have flown by at the same time. We look forward to everyone meeting our little angel and are so excited that she is finally here!

We are going to print this blog out for Maddy for when she is older, so please feel free to leave comments for her so we can print them out.

Last night, we spent the night in the hospital with our precious daughter. She seems to have her nights and days confused, since she was wide awake last night, and she has been sleeping all day today! I guess we are finally getting a glimpse of what it is like to be a new Mom and Dad since we are running completely on empty after working with her last night.

Today we were told that we can bring Maddy home on Monday! This is such an answer to prayer, and we are thankful to God that we are receiving this news. They are checking her blood sugar levels every 12 hours and as long as her levels are higher than 45 each time until tomorrow morning, we can bring her home. Pray pray pray that she will have levels high enough to go home, and that she will have no more blood sugar issues EVER. We are so thankful to all of you that have been praying for us and keeping us in your thoughts. We could not have made it this far without each and every one of you in our lives. We will make sure to update the blog once we do get to bring her home and I expect we will be busy over the next few days getting Madalyn adjusted to life at home, and as we go to follow up doctors appointments for Maddy.

Quick saturday update

Today around 1pm, the nicu nurse practitioner (who we love) invited us to come stay as a guest in the room adjacent to the nicu. We are spending the night, and there is no charge for this. We have Maddy with us and are seeing how she does just breast feeding at least every 3 hours. After breast feeding, we are still attempting to supplement with formula, however, there is no minimum amount that we have to give to her. Please pray that maddy's blood sugar will remain high, and that she will pass this challenge that they are giving to her so she can come home in the next couple of days!
Sent from my Verizon Wireless BlackBerry

Over the past 24 hours our little angel has been doing great. She has had really good blood sugar readings and has been eating like a champ. The NICU staff reduced her formula to 22 calorie, and will continue to use that when needed. They have also started her on vitamins, which they say is pretty common. The doctor decided yesterday that maddy will be able to go home in 3 days, assuming she has good blood sugar readings and as long as she continues to do as well as she has been. We are thankful to finally hear this news, and are cautiously optimistic that she will be able to come home in three days. Please continue to pray that maddy's levels will remain high and that she can come home with us in the next few days.
Sent from my Verizon Wireless BlackBerry

Friday the 13th

Is this dream over yet?  I am glad we are really busy with Ashlyn's schedule and going back and forth from the hospital since it makes it easier to cope with the fact that Maddy is almost 3 weeks old, and she has been in the NICU for 16 days. 

Today has been pretty much the same as yesterday as far as Madalyn's status goes.  Madalyn has had pretty good blood sugar readings during the past 24 hours, with no changes being made to her treatment plan.  She continues to receive high calorie formula and milk and is still required to eat 80ML's at each feeding.  After breast feeding, we are still required to put an additional 30ML's into Madalyn by bottle.  Trying to get her to eat 80ML's, or to take the additional 30ML's after breastfeeding proves to be very challenging at times.  Madalyn has a little temper and lets us know her like and dislikes....I am not sure where she got that from. 

Ashlyn is getting better each and every day, but still requires a wheel chair when we go to the hospital since walking long distances is painful and difficult.  Hopefully we won't be using the wheelchair much longer since we really don't want to be going to the hospital anymore.

We talked to one of the NICU doctors today, and he said that if Maddy has 3 good days in a row (not sure which day we are on at this point), that they would probably be able to discharge her.  He also said that she would probably have to stay on the high calorie fomula and hind milk when we were at home.  We would be fine with that as long as she were able to be home with us, and the doctors thought that they had addressed and resolved her blood sugar issues.  He also said that we would probably need to schedule an appointment with a pediatric endocronologist. That would be beneficial for our psychie, since we would like to have a reassuring second opinion.

Maddy was given a swing by one of the nurses in the NICU.  It is really cute to see how content she is while swinging, and its pretty funny since her neighbor enjoys swinging as well.  The nurses call her neighbor Madalyn's boyfriend, but I am having none of that! 

Thanks again for all the prayers and cards.  We are optomisitic that Maddy will be able to come home soon, and have seen great improvements in her blood sugar over the past couple of days. Please pray that the doctors have gotten the diagnosis correct, and that there is not a major medical condition that is causing her blood sugar issues.  Also, please continue to pray for our anxiousness and that Ashlyn will be able to walk again (normally) soon.  We love you all.