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.

Maddy had a great night last night. At 2AM, she had a blood sugar reading of 101. The staff has also decided to remove Madalyn's feeding tube since she did not need to use it once in a 24 hour period. This is such an answer to prayer We did not have a chance to talk to the doctor yesterday, but we are hopeful that we will see him this morning so that we can discuss the plan to have maddy come home. Please continue to pray that maddy has good blood sugar levels, and that she will be able to come home with us soon.
Sent from my Verizon Wireless BlackBerry

August 11 quick update

Madalyn had good blood sugar levels last night and through this point, and even had a 98 at 5PM yesterday.  She had consistent levels from the mid 50's and higher, which has allowed the NICU staff to begin checking blood sugar levels at every other feeding (every 6 hours), rather than at every feeding like they have been doing.  This is good since Maddy's feet are getting pretty scarred from the continuous blood draws that she is receiving. 

We are optomistic that Maddy is making progress, and are hoping that she will continue to have good levels that will allow her to come home soon.  We are very encouraged by her progress, and are praying that this trend will continue. 

Here we go again

I know my last post said things were getting better, but last night, Maddy (who is 2 weeks old today) had a blood sugar reading in the low 40's which has again caused concern for the Doctors taking care of her.  After the reading in the 40's, she had a few in the 50's and 60's, but her readings do not seem to be consistent at all.  We talked to the Doctor this morning and he, and the endocrinologist he is working with, have determined that Maddy is going to go back to having formula supplemented with the breast milk.  They are also changing the way that Ashlyn feeds Maddy, and Ashlyn is now supposed to only bring hind milk into the NICU. They are planning to do this to make sure that she is getting enough calories at each feeding.

If Madalyn has another blood sugar reading less than 45, they plan to do an MRI to examine her pancreas for a rare, but possible tumor that may be causing the problem.  They seem pretty sure that they have ruled this out based on her blood work, however, they said it remains a possibility since she is not being consistent.

On a more positive note, Maddy is a happy baby that loves eating and cuddling.  She is also very interested in colorful things, which I am sure most 2 week olds are, and it is funny to watch her stare at the curtains, and anything that has bright colors in it. 

Ashlyn continues to heal and is going to a nuerologist tomorrow to have her leg looked at.  Hopefully they will have positive things to say, and they will be able to provide some help to her in her efforts to walk.  Once she is able to walk again, we are going to auction off her really awesome walker to a lucky bidder.  Stay tuned for this exciting event! 
 (just kidding)

We are not sure if we should pray for Maddy's levels to remain high, or to drop below 45 at least once so that they can give her the MRI and rule out the possibility of a tumor.  Please continue to pray that Ashlyn will heal and that Maddy will be able to come home soon.  She is so sweet and we can't wait for everyone to meet her!

I think it may be a bad thing that most of the nurses in the hospital (and especially the NICU) we go to each day recognize us and probably know everything about Ashlyn's delivery and our baby girl.  If the nurses know you by name, I think that means you have been there too long.  On the flip side, it is nice to have people that know you and care for your baby.  The NICU staff continues to do a great job with Madalyn, and we are pleased with the amount of care that they are providing for our little angel. 

I think that last night/this morning had to be one of the best days Madalyn has had the whole time she has been in the NICU.  She had quite a few blood sugar readings in the 70's and even one in the 80's! The minimum that the staff would like is 60+, so she has been improving nicely (only one reading below 50 today).  She is also only going to be fed breast milk moving forward since Ashlyn had her milk tested yesterday, and it had enough calories for the Doctors to decide that we no longer needed to add higher calorie formula.  So as it currently stands, Maddy is functioning on her own, without any IV, or additional formula.  She still has the feeding tube since the NICU staff wants to ensure that she is able to eat the same amount of milk consistently (pray that Ash can keep up with the amount they are feeding her), and if she gets too lazy to eat the amount they want her to, they are sending the rest down the tube. 

The Doctors remain confident that Maddy's blood sugar issues will resolve themselves over time and that we need to continue to remain patient as she learns to regulate on her own.  They also stressed to us today, that they have ruled out all the serious medical things that could be wrong with her, and that all the symptoms and improvements she has made point to Maddy being a baby of a gestational diabetic mother. 

As we continue to visit Maddy in the NICU, we are thankful that she is fearfully and wonderfully made, and that God has allowed Maddy's health issue to play out the way that it has.  There are so many other things that could have been wrong with her, and we are thankful that she will be able to regulate on her own eventually, and that her condition has a tangible solution.  We could not imagine what it would have been like to have our baby girl crash when we had her at home, and we are so thankful for the prayers, letters, emails, cards and flowers from our families and friends. 

Please continue to pray that Maddy will maintain good blood sugar levels, that she will be able to come home soon, and that Ashlyn will continue to heal. 

Madalyn is having another good day and she had a good night as well.  Even without the glucose drip, she has been able to keep her blood sugar levels higher than 48 each time that the staff checks her.  We were able to talk to the doctor this morning, and he said that she is doing really good.  He said that the doctors in the NICU have given Maddy the tools she needs to improve, and now we just need to wait for her to do it.  He also said that Maddy is very healthy other than the blood sugar, and he anticipates that she will do fine once her body is trained to produce the correct amount of insulin.  He said as a best case scenerio that she will be able to come home next weekend, but he said that we need to take things one day at a time, and it will most likely be another 2 weeks before she is ready to come home.

Ashlyn is feeling a little better each day, but is still having trouble walking due to the nerve damage she suffered during labor.  She is scheduled to see a neurologist in the next couple of weeks, and we are hoping they will be able to help her out.  She is also continuing to pump every 3 hours (unless she is feeding Maddy), but she is having a hard time keeping up with the amount of food that they feed Maddy at each feeding.  Her Mom left today to go back home since Maddy will be in the hospital a little longer.   We are so thankful that she was here for us over the past two weeks, and we could not have gotten where we are without her.  My parents were also here this weekend, and it was helpful to have them around so we could get some much needed rest.

I have to admit that I haven't really felt like updating the blog over the past couple of days.  I think we are just worn out from the stress of having Madalyn in the NICU, and keeping up with Ashlyn's schedule.  With me going back to work this coming week, I am hoping I will be able to find the time to update the blog at least once a day going forward. 

Please continue to pray that Maddy will continue to have improvements in her body's blood sugar regulation and pray that Ashlyn will be able to keep up with the milk production that the doctors would like.

We are so blessed to have the family and friends that we do, and a loving God that is taking care of us as we go through this challenging experience. 

quick nighttime update

Maddy is doing so good being off of the glucose drip.  She has had readings above 40 each time that she fed today, which is very encouraging.

We are pretty sure that the Doctors' plan of action at this point is a little different than we originally posted on here.  There is not a 48 hour clock that started when Maddy stopped having the glucose drip, and the doctors are trying to re-train her pancreas.  They are doing this in an effort to give it a chance to regularly pump out insulin when the amount of food intake is consistent.  This means that Maddy will be in the hospital indefinitely as the NICU staff continues to monitor her levels.  We are happy to see our baby girl doing a little better, and want to thank everyone for their prayers. 

Saturday post

Last night and this morning, Maddy has done relatively well without the assistance of a glucose drip.  She has had blood sugar readings above 40 each time they have checked her, which is good because she seems to be regulating on her own (although not as high as the doctors would like).  They are continuing to challenge her system, and have increased the amount of food that she eats to help her out. 

The doctors also are allowing Ashlyn to breast feed again, but they would like to try to measure how much food Maddy is getting when breast feeding.  At the next feeding, the doctors are planning to weigh Maddy before and after feeding to see how much weight she gains, and calculate the ML's of food that she is taking in. We are glad they are letting us do this, since it has been hard for Ashlyn to not be able to breast feed.  We are hoping that Ashlyn will feed her enough milk for them to allow her to breast feed one or two times a day.  They are also wanting to test Ashlyn's breast milk to make sure that it contains enough calories to continue to breast feed.  Right now, they are adding some high calorie formula to Ashlyn's milk each time that they feed her.  

Another tidbit of good news that we have received is that Madalyn's metabolic tests all came back as normal.  We are thankful that these came back as normal since this allows the doctors to pinpoint the cause of the blood sugar issues Madalyn is having. We are so thankful that she is otherwise healthy, and the Doctors continue to stress, that Madalyn's blood sugar should get better with time, especially if Madalyn's system has a consistent amount of food coming in.  

Please continue to pray that Madalyn's pancreas will learn to regulate on its own, and continue to pray for our nerves;yesterday was a pretty stressful day.

One step forward, two steps back

Sometime around noon today, we received a call from one of the NICU Doctors.  He wanted to let us know he was sorry for giving us such an optimistic report this morning, and that they wanted to make a change to Maddy's wellness plan.  She had a blood sugar reading somewhere in the upper 30's after being fully off of the glucose, which we believe triggered the change in the approach. 

They have decided that they want to be able to gauge how much she is eating at each feeding since she has not always been consistent with the amount she eats.  The doctors seem to belive that if there is consistency in the volume of food she is taking in, that she will show improvements and consistency in her blood sugar levels.  They told Ashlyn to continue pumping, but that she would not be able to breast feed for a while so that they can make sure she is getting the right volume of food.  They also have decided to put in a feeding tube, so that if she does not eat the right amount at a feeding, that they can pump additional food into her.  They think that because she does not eat consistently, that her pancreas just pumps insulin out, and does not have a predictable amount of food coming in to properly regulate her blood sugar.   The Doctors have also decided to turn the IV drip back on, but they want to get rid of the additional glucose as soon as possible.

Please pray for Maddy as they have put the feeding tube in, and continue to pray that her little body can regulate on its own.  It was hard to receive this news after such a good report this morning, and we are trying to stay optomistic.  Please continue to pray for our family at this time.

Ashlyn and her Mom just got back from the hospital.  Maddy is off the glucose drip (she had a good night), and will be able to be discharged in 48 hours as long as she has blood sugar readings above 50 each time they check them (every 3 hours or so).  Please pray that she will have readings above 50 when they check and that she will be able to come home soon!  This is such an answer to prayer.

good night

They were able to successfully put the IV into Madalyn's hand, and she was wide awake tonight after she fed!  She normally falls immediately asleep, and it was nice to be able to spend some awake time with her.  We are going to bed praying that Maddy will have a good night, that her glucose levels will remain high enough to continue to ween her off, and that we can catch up on some more sleep.  It is not looking like Maddy will be home with us this weekend, however, we are hoping that we will be able to bring her home sometime next week......  Please continue to pray.  God is good.

VID00044

update from Ashlyn

This morning when talking to the doctors they told us that they wanted to start running more tests because it usually does not take this long to regulate a baby's blood sugars when related to gestational diabetes.  The doctors consulted with an Endocrinologist and are testing her insulin levels, key tones, cortisol, and growth hormones so that they could try to rule a few things out.  The doctor also said that once they receive the results back, that they will be able to see what direction to go in and to develop a solid plan to get Maddy's blood sugar in line with what it should be.  The NICU staff is also wanting to take out her IV that is in her belly button, because they are afraid of infection.  They are planning to get an IV in her arm or hand tonight and if they can they are going to remove the belly button IV.   They are still keeping her treatment the same for now, which involves lowering the glucose drip (now at 10%)  based on her blood sugar levels, and will continue to lower her glucose every time it is over 50.   Last time we checked with the NICU staff, the drip was at 3ML/HR.

The frustrating thing is the additional tests that they are planning to perform will take 3 days to get results back.  We are praying that her blood sugar problems are the result of undiagnosed gestational didabetes during pregnancy an that its just taking longer for her system to get regulated.  If it is not the result of gestational diabetes, we are praying that  it is something that is easy to fix and that will not have long term ramifications for Madalyn.   We are continuing to try to stay optimistic and just keep remembering that God is in control and he knows what the problem is.  Please pray that we can stay positive because the longer this goes on the harder it is.  We are still waiting on the urine test to come back, so hopefully we will get that in the next couple of days.

We did get some positive news today-that Maddy's original blood test from the day she was admitted to the NICU came back negative for all the things that they were testing for (a number of diseases and metabolic issues).  They are only waiting results from the Cystic Fibrosis (we think that is what they told us), but we anticipate this will come back negative since there is no history of this in our families.

A few things to pray for:
-That the blood tests taken today would help determine the root cause of Maddy's blood sugar problem

-That they would find a vein easily in her arm or hand and that they can remove the IV from her belly with no problems

-That we can remain positive and not get discouraged

super quick post

We talked to the Dr. today, and they are becoming more and more skeptical that Ashlyn had gestational diabeties, and that Maddy's blood sugar problems are related to that.  They are awaiting the results of blood work that was taken from Maddy when she was admitted into the NICU, and we should have more information tonight.  They are also planning to do additional blood work to test for other conditions that Maddy may have. 

Maddy's blood sugar levels have been better today, and currently her drip is at 3ML/hr.  She is on 12% glucose, and they want to reduce the level in her IV to 10%. The Dr's also want to start supplementing with formula to make sure that Maddy is getting extra calories.  At this point, nothing seems certain, but we are comforted by the fact that Maddy seems alert when we go to visit, and she still enjoys eating.  Onc we hear more from the Dr's, we will add another post.

August 4 quick update

Maddy had a level above 45 this evening which means they lowered her drip to 5ML/hr.  Hopefully she will be able to keep this up and will be off the glucose drip by tomorrow evening (we are staying optimistic that this will be the case).  Please pray that this is the case so that we can bring Maddy home sometime this coming weekend.

We have discovered that Maddy eats really well when we sing to her, and it brightens our day to see how excited she gets during that time. Please continue to pray and we really appreciate everyone that is keeping up with our family.

August 4 update

When I was a kid growing up, I really liked a movie called The Never Ending Story.  I can't exactly remember what the movie was about, or why I liked it, but I feel like the name of the movie fits how we feel right now.  As time and the world flies by us, it seems like each day is like the last, and its hard to remember if what happened this morning actually happened today, yesterday or the day before.  It feels like there is no end in sight, and our precious angel is getting older while we only get a few moments each day to spend with her.  I know that the doctor says that Maddy will get better with time, but it seems like she is moving very slowly towards getting better.  We know that God has a plan, and that his plans are bigger than we could ever think or imagine. We are comforted by that fact, and hopefully we will one day be able to look back on this experience and be thankful for where we have been.  We are thankful for so many things (check back at our previous posts) and continue to count each day and moment with our daughter as such a blessing.

Last night through this morning, Maddy had two blood sugar readings that exceed the 60 that she needed.  Her glucose drip is at 6 ML/HR and our prayers are being answered.  The doctor has decided that they would like to begin a more aggressive treatment and are now going to lower her glucose drip each time that her levels exceed a 45!  We are hopeful that this treatment approach will allow Madalyn to be removed from the glucose altogether, and that she will have levels that exceed 45 each time they check today.  Once she gets down to zero on the glucose drip, we are pretty sure that there will be a period of time (probably 48 hours) where they will continue to monitor Madalyn to make sure she is regulating her blood sugars on her own.  The doctor also has decided to check Maddy's urine for signs of a rare, but not impossible, metabolic issue.  We pray that these results will come back normal, and that additional treatment will not be required for her.

Ashlyn is making tremendous improvements and is able to walk accross the living room without a walker.  She still needs to have something to hold on to, but this progress gives us hope that she will be walking on her own very soon.  She also was able to get a good amount of sleep last night, which is another answer to prayers.

Thank you all again for the flowers, thoughtful messages, and prayers.

Maddy is still working through the challenge the the doctor ordered this morning.  She had decent levels throughout the day, but never beat the 60 that she needed to decrease the glucose drip. Her drip remains at 8ML/hour.   We are anxious that she does not seem to be progressing as quickly as the doctor would like, and hope that she will make an improvement throughout the night.  She was pretty alert tonight when we were there, and she still is eating like a champ. 


The past week has flown by for both Ashlyn and I, and we both are wondering when the effects of the physical and emotional stress will begin to set in.  I am pretty sure Ashlyn is working off of a superhuman adrenaline rush, and I pray that she will be able to get some sleep between pumping tonight.  I have been able to get some sleep the past few days, only because Ashlyn's Mom is still here, and she takes over helping Ashlyn at 5 in the morning, which gives me a chance to catch up.  We are so thankful that she has been able to spend this time with us, and there is really no way that we could get through this without her.

Every time I post something to the blog, I can't help but smile and be thankful for all of the support that we have been receiving from everyone.  We appreciate all that you have done for us, and especially for your prayers.

As we get in bed for the night, we ask that you pray for the following for us:
1. That Maddy's blood sugar levels will improve and that the NICU staff will be able to ween her off the glucose drip.
2. For Ashlyn.  Although she is beginning to be able to walk some without the walker (a few steps at a time), please pray that she will be able to walk completely free of the walker.  Please also pray that she will be able to catch up on her sleep.
3.  For our nerves.  We have been feeling pretty anxious about Maddy's status and are trying to stay as optomistic as possible.
4. That we will continue to trust in God through this.  He is our rock and I can't imagine how anyone could get through a situation that seems this difficult, draining, overwhelming and beautiful (life is beautiful) without knowing Him.

1 week update

Last night our little angel showed some improvement in her blood sugar levels, with every other reading being in the mid-70's.  The NICU staff lowered her glucose drip to 8ML/hr and we are hoping that she will be able to continue to show improvements.  We just checked in with the NICU staff, and they said her most recent reading was a 40, which would normally require the staff to increase the glucose drip.  The staff has decided that they want to challenge her system, and are going to leave the glucose drip at 8 for now.  Please pray that she will be able to withstand the challenge that they are giving to her, and that her blood sugar levels will improve at her next feeding (2pm).  We are still optomistic that she is making progress and are trusting God that she will be able to be home with us soon. 

It is crazy to think that Maddy is already one week old.  She has already provided so much joy to our family and we are thankful for each and every moment that we are able to spend with her. 

Thank you all again for checking in on our family. 

August 2nd update 2.0

We just got back from the hospital and Maddy's blood sugar levels have not improved.  She seems to have blood sugar levels that are consistently in the 50's.... not quite good enough for them to decrease the glucose being pumped in to her.  She is now receiving 10 ML's / hour, which means that they had to increase the glucose drip again. 

We are encouraged that she is a fighter and seems to be a happy baby.  She really enjoys eating (in case you can't see from the pictures) and seems to be really efficient when she is feeding.  Actually, she usually takes down quite a bit of food in 5 minutes or less before falling asleep. 

Ashlyn seems to be improving some, and we hope that Maddy can mirror same progress that her Mommy is making.  She was able to take 2 steps today without the walker and is fighting hard to be able to take care of herself (although we have all told her to slow down and let us help her :). 

We would not be able to get through this time without the outpouring of support and encouragement from our friends, family and coworkers.  We appreciate all of your prayers, kind words and thoughtful actions.  We are going to bed hoping to get caught up on some sleep (haha, right) and praying that tomorrow will be a better day for Madalyn and that her blood levels will improve. 

August 2nd

I wanted to start this quick update by saying that 9 years ago, I was fortunate enough to have a first date with my wonderful wife.  I could not imagine going through this time with anyone other than her.  She is such a great person, an excellent wife, and a terrific mother.  I don't have the words to express how much I love her and appreciate all that she does. 

Here is a quick update on Maddy:

Ashlyn and her Mom went to Maddy's feeding at 8AM this morning.  Maddy only had one blood sugar reading last night that exceed the 60 that she needed to reduce her glucose drip.  She is currently at 9 ML/hour.  The Doctor in charge of her care said that since she is not progressing as well as they would like her to, that they will no longer be reducing her drip each time she exceeds the 60 reading.  Until she stabilizes and has some consistent higher readings, they are going to leave her glucose drip where it is. We continue to pray that she will be able to have her blood sugar levels stabilize, and that she will be able to come home to be with us soon. 

We also lifting up prayers of thanksgiving at this time.  We are thankful that she is healthy (other than the blood sugar thing) and that we are able to visit her as often as we can during the day.  We are also praying for all of you at this time, and thank you again for your prayers and outreach to us. 

I will try to update again later tonight.  I am getting ready to go see our daughter for her 2pm feeding.

We love you all.

August 1, PM update

Today was not as good of a day as yesterday for Madalyn's blood sugar levels but we remain optimistic that our little Madalyn will continue to get stronger and that her blood sugar levels will stabilize.  She did not have a single reading above 60 today, although her latest feeding at 8 PM she had a 59.  We are going to bed this evening praying that these numbers will go up with each feeding during the night.  Our little Maddy loves being with her Mommy and we are so glad that the hospital is close by so we can make the trip to see her.  The nursing staff has allowed us to hold her again, even though she has the IV through her belly button.  It really warms our hearts to be able to hold her, even if it is only for a short period of time.

If you are praying for us, please pray for the following:
-that Maddy's pancreas will learn to regulate her insulin on its own
-that she will continue to feed as well as she has been
-that Ashlyn will heal and have the strength and stamina to continue the schedule that she is on
-that we can bring Maddy home soon, and that she will maintain her health.

Thanks again to all of you that are praying for our precious angel.  We love each and every one of you.

We also posted a video somewhere on here so you can see a little more of Maddy.

quick update

I just got back from Maddy's 2pm feeding and thought I would post a quick update.  She was very alert when I was just there, and seemed happy.  Her glucose levels had not improved and were actually pretty low (a 45) which required the nursing staff to raise her glucose drip back up to 10 ML/hour (an increase of 3ML/hr).  Please pray that this increase causes her next reading to be high enough for them to start decreasing again.  Grandma and Maddy's great grandma are visiting her now, and they just called to say that her level was at a 55.  We will keep you updated. Thank you all for your prayers.

August 1 update

Yesterday, Maddy had a great day.  She had a good streak of blood sugar levels that exceeded the minimum (at least 60) required to ween her off of the glucose drip.  Each time she has a reading above the minimum requirement, they lower her glucose drip by 1 ML/hour.  Currently she is at 7 ML per hour, and once she reaches zero, the 48 hour clock starts.  If she is able to maintain her blood sugar levels consistently for 48 hours on her own, then she will most likely be able to go home.  The doctor thinks this will be in 3-4 days, so please continue to pray that she is able to maintain her glucose levels on her own. 

Last night, Maddy did not continue the streak of good glucose levels, and for 4 of the 5 times that they checked her, she did not exceed the 60 that she needed to reduce her glucose drip.  This proves to cause quite a bit of anxiety for us, because we are constantly anxious to hear what her levels are, and it is hard to relax and sleep during the night. 

On a positive note, Maddy does great feeding with Mom for the 2 trips a day that Ashlyn is able to make it to the hospital.  This time is very special for Ashlyn and Maddy really needs it.

In case you were wondering why Ashlyn can only make it to the hospital two times a day, there are a few reasons.  The first couple of reasons are that Ashlyn cannot walk without a walker and she is on ordered bed rest because she has severe swelling in her legs.  During the labor process, Ashlyn damaged nerves in her legs, and she will have a long recovery learning to walk normally again.  The second reason is that we are on such a furious schedule with Ash at home, that it is hard to try to find a good time to make the trip to the hospital.  Between pumping, bathroom trips, eating and trying to get some sleep in between, there are not many minutes left each day. 

We are really thankful that we have family willing to help us.  Ashlyn's Mom (Cathy) is staying with us during this time, and there is no way that we could keep Ashlyn on this schedule without her.  We are taking turns helping Ash out, and Cathy and me are actually able to get some sleep during the night with our shifts that we are doing.  I can't say the same for Ash.  She is having a really hard time getting any sleep, mainly due to her schedule, and her nerves as a new mother. Please pray that she will be able to find a way to get some sleep intermittently during the day.  Things will be so much easier when Maddy is home. 

My parents (Jesse's) are also in town helping with Maddy.  They are going to a few of her feedings during the day, and running milk back and forth to the hospital.  They are heading home today (Sunday) but it has been helpful having them around to help us out. We are so thankful for our families and the time that they are spending to help out with Maddy and Ash.

We continue to pray that God will heal our little Angel, and that she will be able to maintain her glucose levels, not only in the hospital so she can come home, but also when she is home (we are going to be super paranoid parents...).  As I mentioned above, we are also continuing to pray that Ashlyn will be able to get some sleep during each day.  She is running on fumes.   We also pray that Ashlyn's legs will heal and that she will be able to walk on her own.  If she was able to walk, things would be a bit easier.

We are staying positive and putting our trust in God during this time.  Thank you all for keeping our family in our prayers and checking in on us.

Good Morning

Last night was a really good night for Maddy.  She had good levels each time that they checked her, which means she is starting to regulate on her own.  I really think it helps when Ashlyn is able to feed her. She has been very happy and seems to enjoy sleep just like her Mom.    The NICU nurse watching her was the same nurse that watched her the night before, and she could not believe how much she had improved from the night before!  She said it was like she was taking care of a completely different infant.  

Now that we are home, it is hard to make the trip to see Maddy for each of her feedings, which is pretty sad for us.  Ashlyn is working hard to pump milk so that we can store some up for her at the hospital, and her milk is definitely coming in.

Please continue to pray that Madalyns levels are maintained and that we will be able to bring her home soon.  Please also pray that Ashlyn has the energy to pump and make the trip to the hospital, which is challenging given the schedule that she is on.  I can't express how thankful we are for everyone's prayers, and we will keep you updated.

Ashlyn is going to the hospital this morning, and we are hoping she will be able talk to the Doctor.   We will keep this updated to let everyone know what they say.

7/30 update 2.0

Today has been such an answer to prayers!!  Ashlyn was able to successfully feed Maddy (twice since being discharged) and Maddy's levels have begun to become more regular.  Each of the past 3 readings for Maddy have been high enough for the NICU staff to reduce the amount of glucose being pumped into her.  Please continue to pray that her glucose levels stay at the levels they are at and that Ashlyn will continue to heal have the strength to make it to the hospital often.  We are going to bed feeling good about her status, and feel confident that God is healing our little baby girl! 

Thank you all for your prayers.  We cannot wait for everyone to meet our sweet baby girl!

July 30 update

Last night around 4AM when we went to check on her, we were turned away b/c the staff was trying to re-insert an IV that had popped out of her hand.  It took them about an hour trying with no success before they decided to place the IV through her umbilacal cord.  They were unsure that it would take since it was starting to scab, but thankfully, they were able to place it successfully.  They took an x-ray to determine that it was placed properly, and I have no idea what would have happened if they would have been unable to place it there since it was a last ditch effort to ensure that she was getting the glucose that she needed.  With the IV in her belly button, we are pretty much unable to pick her up or move her, which is really difficult since we can't comfort her or hold her.  The nurse that is currently watching her is great and said that she will help move her so that Ashlyn can hold her and feed if she gets her milk in.  We are praying that her milk comes quick and that Ashlyn will be able to do this soon and that we will continue to have the excellent nurses watching her that we have been so fortunate to have.

We woke up today feeling good and have been able to check in on Maddy quite a bit.  Its amazing how little sleep you need to survive.  In talking to the NICU doctor, our baby girl is still unable to regulate her blood sugar on her own, and they are pumping her full of glucose.  The doctor also reiterated that Maddy is showing symptoms of a baby from a diabetic mother.  We are hoping his theory is correct since he said this is something that they are confident they can address.

One negative for little Maddy is that she is having a hard time feeding with the formula that they are giving her.  She is able to take a bottle, but cannot seem to keep anything down.  Ashlyn is working really hard to pump regularly and bring her milk in, and things seem to be working the way that they should for her.  We are praying that Maddy will soon be able to feed using only Ashlyn's milk, and that the breast milk will be easier for her to keep down.

As far as Ashlyn's status goes, we are being discharged from the hospital shortly since there is a mass influx of pregnant people.  Apparently this is due to the Thanksgiving and Christmas holiday with July and August being some of their busiest months.  Anyway, Ashlyn is doing much better walking and I think a lot of it is just her determination to be able to be there with her little girl.  Please pray that Ashlyn will have the energy and pain tolerance to make the trips to the hospital since we are leaving soon.

Thank all of you that are reading this for your prayers and support.  We can feel your support and prayers and God's hand is evident in all of this, which is comforting.   Our nerves are stil pretty much shot, but we are maintaining our positive attitude in all of this. I will try to post again tonight.

update on Maddy

We always said we would never have a blog, but with all that has been going on, we thought it would be the easiest way to keep everyone that cares about our family in the loop.  As you have probably seen in the pictures, Madalyn is a pretty chunky little baby girl.  When she was born, she weighed in at 9 pounds and 5 ounces.  All I can say about that is that my wife is AMAZING, and there is nothing more special than seeing your child be born (sorry if this brings back 9th grade biology class for anyone). 

Maddy's first day was really good.  She was feeding and had great vital signs, and we enjoyed every moment that we had with her. 

Shortly after her first 24 hours, things took a turn for the worst when we were trying to feed her.  As Ashlyn was preparing to begin her feeding, Maddy gave both of us an empty stare and then became limp in Ashlyn's arms.  Thankfully our excellent nurse, who we both love and who is a good friend of ours, was in the room and took her and began checking her vitals.  As Maddy was turning blue on the table, our Nurse paged the other nurses on the floor to come help her out.  I have never seen anyone get to our room that fast, and we are very thankful that the team was on top of the situation immediately.   It was quickly decided that the best place for Maddy to go was in the NICU and they rushed her out.  As you can probably imagine, especially if you have children, this was not a very pleasant, nor calming event for either of us.  

Ultimately, it was determined that Maddy had extremely low blood sugar, and she had stopped breathing when our nurse was in the room.  We were told that based on her vitals, and the monitors that they hooked her up to, that she had not stopped breathing at any other point before the time that Ashlyn was holding her.  We are extremely thankful that our nurse was with us when this happened, and that we had a great team of people that helped our little girl out. 

It was pretty much a miracle that things happened the way that they did.  The majority of the day, Maddy seemed content sleeping by herself in the bassonet, and we didn't really want to disturb her, mostly because we were exhausted, but also becuase she seemed so peaceful.  shortly before her episode, I (Jesse) had this feeling that we just needed to hold her.  Our nurse had walked out, and I just thought that we should show Maddy some love.  After handing her to Ashlyn and taking a few pictures (one of them is on here somewhere), we decided we should try to feed her.  How awesome is God that he would give me that feeling before she crashed, otherwise, it could have happened in the bassonet, and we never would have known.

As of 8pm this evening, Maddy is still in the NICU, and we expect her to be there until at least Sunday or Monday.  She is still unable to regulate her blood sugar on her own, and is on a constant glucose drip until she can be weened off of it.  We are thankful (although not originally) that Ashlyn is in the amount of pain that she is in, since it means we get to spend another night in the hospital under the nurses care.  It is going to be really hard having to go back home tomorrow with our baby girl staying in NICU, especially since Ashlyn cannot really walk. 

The NICU nurse practioner is very optomistic and belives that this is something that can be fixed, mostly with time and through our little troopers regulation of her own body.  She also thinks that the problem with Maddy is a result of Ashlyn having late onset gestational diabeties after her orginal test was determined to be negatve.  Most of the symptoms point to that as the root of the problem Maddy is having with her blood sugar.

We are extremely thankful for the support that we have received from family and friends, and appreciate all the prayers.  We cannot even describe how thankful we are for our nurse and friend who literally saved our precious baby.  We really cannot find the words to describe how thankful we are for her and just thinking about how blessed we were to have her there makes both of us tear up. We can only be optimistic that Maddy will be able to take over regulating her blood sugar, and that she will be discharged soon.  Please continue to pray that Ashlyn will heal quickly, and that Maddy will have improvements in her blood sugar levels.   God is great. 

If we seem somewhat out of touch lately, it is because there is quite a lot going on.  As things progress, I am hoping we will feel up to taking calls and having visitors, but until then, please continue to pray for us.

-JAM  
(Jesse Ashlyn Madalyn)-Thanks Christy for coming up with this!