Prayers for Jack, please

Well, tomorrow is the big day!  Jack is going to have tubes placed tomorrow afternoon at 1:30 p.m. at Children's Hospital Liberty Campus.  Dr. Charles Myer, III will be doing it, and we've heard nothing but great things about him.  Of course, anytime you place a child under anesthesia, you worry.  We are confident that everything will go wonderfully, just as planned, and the fluid that has been in his ear FOREVER will be removed, and hopefully Jack will be able to experience life without the discomfort of ear infections and fluid.  I do believe that the hardest part of the day, other than the worry of surgery and not being able to be with him, will be trying to keep him calm when we will no longer be able to feed him.  It's hard for parents to deny their children of food, and it's even more difficult with a baby because they don't have any ability to understand why we can't feed them.  But, I must remind myself, it's only for a short time, and the end result will help Jack's ears, his hearing and hopefully his sleep patterns. 

These past couple of months have been tough at times, but still very enjoyable.  If you haven't seen Jack in a while, he's quite the baby with a colorful personality!  His smiles, laughter and babbling makes the frequent trips to his bedroom in the middle of the night a little less difficult.  Steve and I are very sleep deprived and we hope to have Jack sleeping through the night sooner than later, but we remind ourselves how far we've come from the time he was born to now.  It's been a roller coaster, but each day gets a bit easier. 

Jack is now a sitting man!  We are super excited that he is making progress on his gross motor skills.  He still hasn't rolled from his belly to his back, but has rolled from his back to his belly.  We keep praying that he will meet the milestones.  He continues to work on his fine motor skills as well, as just as recent as these past several days, he's trying to use his pointer finger and thumb to grab tags!  These little things just thrill us!

We have also seen an opthalmologist for Jack's left eye.  Indeed, there is something going on with his left eye, but we can't rule enough out to say exactly what it is.  Right now, they believe he either has an eye muscle problem or Duane's Syndrome.  We'll continue to see the opthalmologist on a bimonthly basis as she monitors his vision and movement with his eyes and follow with her recommendations to ensure Jack has the best vision possible. 

Sorry for the short update, it's been a while, but I gotta run!  We continue to pray, thank God for his blessings, and go to bed when Jack goes to bed!!!

Love and blessings to each of you and yours!

Some photos...some outdated! Enjoy !

Jack and his SMILE !

Jack adores Madeline

Jack after his 6 month shots.

Yup, he's a cutie!

Our 2 lovies!  We are so blessed.

Jack is making great strides!

This past week we had the opportunity to meet with Help Me Grow, a program through the state of Ohio for children showing delays in any or all areas of development.  They met at our home on Monday morning to do their assessment.  After the assessment they shared their results.  Steve and I were not surprised by them at all.  Jack is showing signs of progress in MANY areas, but there is a delay in his fine motor skills.  He qualifies for Occupational Therapy services.  We have been working diligently with Jack at home doing what we can, so this will only be an additional support for us and another person to add to Jack's team of people who want to see him do great things!  Right now the focus is on his grip, lifting his arms above his head and working on tummy time for many reasons.  We are working with him and seeing results, so it's been great to see his development! 

The biggest news of all right now for Jack is that he ROLLED OVER last night for the first time.  We are SO EXCITED about this!  He doesn't have it mastered and we are still working on his arms after he rolls over, but he has the strength to do it, which makes us very excited. 

I'll post pictures soon.....I promise! 

Thanks for your continued prayers, support and encouragement.  We appreciate it all!

It's been a crazy month!

Whew.....I think it's safe to say that Steve and I are tired!  Jack has been making incredible strides, but it's been exhausting.  Shortly after Jack turned 4 months old Jack was back at the Dr. for a high fever, along with a cold.  Unfortunately, he had a double ear infection.  After 1 round of antibiotics his infection was cleared, but fluid still remained, and still does to this day, in both of his ears.  :(  We have been warned that since he has had an ear infection at such a young age, his chances of getting tubes are pretty high, given the fact that structurally his ear canals are very small, according to the dr.  But, bummer for Jack that we can't get tubes quite yet.  The protocol for getting tubes is 4 ear infections in 6 months time or fluid in the ears for 3 consecutive months.  So, we are in month 2 of fluid in the ears.  WE ARE PRAYING THAT THEY DO NOT BECOME INFECTED, and quite honestly drain on their own. 

Then, two weeks later, Jack started to show signs of being sick, AGAIN!  So, after 3 Dr. appointments in 1 week, it was determined that Jack most likely had RSV.  They didn't test for it, but he showed all signs of it.  So, 1 week ago we found ourselves in the Dr. getting a breathing treatment for Jack since he was wheezing.  It seemed to help, so they sent a Nebulizer home with us for daily breathing treatments.  He was NOT fond of those at all, but fortunately, we did see improvement.  We go back to the Dr. tomorrow to see if they hear the wheezing.  I think it's fair to say that we are ready for summer! 

For several months now, Jack has had difficulties in the evenings.  I wish I could say that it's gotten easier, but when having to listen to a screaming baby for hours each night, it's tiring, makes you want to cry and we feel so terribly that we can't make things better for Jack.  Fortunately, Steve and I make a great team and we are managing each night with support of each other, and we remind ourselves that it will get better, it just has to.  (Please....don't tell us it won't be for a while....not what we want to hear! :) ) When Jack screams, it's not a little cry for 10 minutes, it really does last for hours.  It's so hard on our entire family, especially Madeline because she just feels so badly for Jack and just wants him to stop crying; it makes her cry sometimes.  It's just hard when you don't know why they are crying and you can't find ANYTHING to get them to stop crying.  As soon as we think we find the secret, Jack finds a way to prove us wrong!  So, we continue to pray that those long evenings of many tears and screaming fits are going to end........SOON!

Several months ago, Steve and I both started to worry that Jack was not developing properly.  He wasn't showing interest in really much of anything.  As our concerns increased, we decided to call upon Help Me Grow of Warren County.  Jack qualifies for such services due to his prematurity, as well as his medical diagnosis of Respiratory Distress Syndrome and Pulmonary Interstitial Emphysemia.  We've been searching high and low for support, from Dr. Google to family and friends that have experienced similar situations or who work in fields to help little kids and children like Jack.  We've received some great information, and daily Steve and I work with Jack, along with Madeline.  By the way....she continues to be the MOST AMAZING big sister to Jack.  With the "therapy" that Steve and I are doing with Jack, we are seeing great results that are promising for Jack's development.  One month ago he would scream seconds after we laid him on his belly for tummy time.  Now, we can keep him on his tummy for several minutes at a time!  And, while on his tummy, he can lift his head with the support of us "locking" his arms under his chest.  We've been working on his grip, and he is now picking up objects that are in his lap and bring them to his mouth!  It really is the little things that mean so much to us, and anyone that has experienced anything like this would probably agree with me.  Jack also is extremely social, loves to giggle, and seems to be very interested in the environment around him.  He is now looking to the left and right, which was something he wasn't doing 1 month ago.  With his strides and gains in the past month, it has shown us the importance of being diligent with his "therapy" at home and really makes us want to continue to help Jack.  It is all reassuring.   He's not rolling over, or even close to that, but we'll get there.  We are confident in that.  With the support of Help Me Grow, we're going to get Jack right where he needs to be!

And something so special to Steve and I is the relationship between Madeline and Jack.  It seems as though the two of them have an incredible bond. I believe it to be for many reasons.  I believe God has made Madeline one super, empathetic, caring, loving little girl who appreciates the gift of her brother, and Jack can see how much love is in Madeline's heart for him.  There are no words to describe how the two of them interact.  I can tell you though, when she is around, Jack responds so well to Madeline.  She is so calm with him, gentle and loving, and the nice thing about Madeline, she doesn't judge Jack, she doesn't resent the fact that he screams ALL of the time (it seems!), and she never questions why we do what we do, she just helps.  She is truly a gift from God to us.  This past year for her has been traumatic, with my pregnancy being so terrible to having a brother born with complications (which were SCARY for ALL of us), and yet she seems so happy to be where we are today.  She appreciates the family unit.  She appreciates Jack's smiles.  She appreciates the idea of being a big sister.  She is really very special to Jack.  Steve and I both adore their relationship and we know that the 2 of them connect in a way that we'll never understand, but we appreciate that!  It sure is amazing how insightful a 6 year old can be, and how much she can help our little guy develop. 

Big news for Madeline......she lost her 6th TOOTH on Tuesday evening!  She sure is a cute little girl without teeth!

We continue to pray for Jack and his development.  We also remind ourselves that Jack's issues could be much worse.  We pray for all the babies in this world, and we're thankful for the one we call our son.  We truly are blessed.
Thanks for all of your continued support, thoughts and prayers. 

4 MONTHS OLD!

Well, today Jack is officially 4 months old.  It's hard to believe that he is 4 months already, but I must admit at the same time I feel like it's taken forever to get him to this age.  It really just depends on his day and how he feels.  At this point, I think it's fair and "safe" to say that he is having more good days than bad days.  We still find him struggling at times to catch his breath because of that STUPID reflux!  (If Madeline knew how often I used this bad word, I'm pretty sure she would have lots to say to me.)  He remains on 2 doses per day of Prevacid.  We are not really sure why some days he is better than others, but that seems to be a common problem for babies with reflux.  We have his 4 month check up today, so we will learn more and ask our million questions, like we always do. 

We have officially transitioned him to 3-6 month clothing, so he is only 1 month behind in clothing, which really doesn't matter.  As for his adjusted age, Steve and I are still seeing him progress as if he were 11 weeks, not his actual age of 17 weeks.  That is definitely the hardest part to deal with, not because we are worried that he is behind, but we felt like he was so "stagnant" with what he was doing for such a long period of time, it seemed as though time never moved.  But, we can certainly see changes now.  Jack, when he is feeling well, is a very happy, delightful baby to be around.  He has a very low key personality and LOVES, LOVES, LOVES to be around people.  He enjoys being talked to and the attention, so his time at the babysitter's house is enjoyable for him.  He flashes beautiful, charming smiles at us, even at 3 or 4 A.M. when we have to feed him.  We are certainly blessed.  Hopefully, this will continue as he gets older and feels better.... :)

Last weekend we finally had Jack baptized in our church, St. Margaret of York.  It was beautiful.  Jack let out a nice little prayer of his own when he was baptized.  He was baptized in the hospital when he was born because at that time we were told that he was struggling.  We wanted to make sure that God was there with him at all times, and he certainly has been!  We were blessed to have all of our family here for the baptism, which made it even more special.

We had his 4 month check up yesterday afternoon.  It went well, as we expected.  We asked many, many questions, as our Dr. always expects from us, and we continue to move forward.  Typically, at this age babies are able to eat rice cereal or start thinking about introducing solid foods.  Since Jack isn't "acting" like a typical 4 month old, we are postponing this for a couple of months.  She expects that we will be able to determine if he is ready for solid foods at his 6 month check up.  However, we are going to begin to put a very small amount of rice cereal in his evening bottle, to start.  The hope is that this will help his reflux.  Unfortunately our little guy is still greatly affected by his acid reflux.  Yesterday she did tell us that since his reflux is so severe, we probably won't see much of an improvement, if any until after his 6 month mark.  We just feel terrible for Jack, because when he is having issues,  you can tell how uncomfortable and painful it is for him.  If only we could take the pain away from him.  We discussed everything.....from his diapers to his bottles to his smiles and head control.  Since he doesn't have complete head control, we have to continue to work on that.  The horrible part of this is that we cannot put Jack on his tummy very often because it causes him to spit up ALL of what is in his belly and it's uncomfortable for him, so we do lots of standing with him, along with him laying on our chest to help him lift his head.  I can honestly say that this is something that I have stressed myself out about, but with practice and time, he will get it.  STUPID REFLUX!  We discussed increasing his meds, but the Dr. doesn't want to increase it because of the age that he is and he is already taking the equivalent of 1 adult tablet each day.  We continue to pray each day that it gets easier for him. 

As for his weight, he weighed in at 12 pounds, 11.5 ounces.  He was 24.75 inches long.  His weight puts him in the 11th percentile, his height a whopping 44th percentile and his head circumference is 27th percentile.  She seemed very satisfied with his growth, especially with how bad his reflux is.  We continue to feed him Nutramigen....yes, a formula that NEVER has coupons, never goes on sale, and is so costly that we spend more money to feed him than we do ourselves.  But.....we can say that it makes him happier....and IT IS ALL WORTH IT!  Unfortunately, that is all we knew with Madeline, so at least our kids are consistent and require the same food... ;) !!

Madeline continues to be the BEST big sister one could ever ask for.  Not a day goes by that she doesn't comment on her little brother, how much she loves him and how cute he is.  Steve and I are so thankful that she is open to him, loves him and has yet to show us any signs of jealousy.  He certainly requires alot of attention, but she always finds a way to make it work for all of us.  She sure is a special little girl!  As for being little, she is still pretty tiny, weighs close to 37 pounds (on a good day), and lost her front tooth!!!!

Until next time, we'll keep praying for Jack, his friends at Children's Hospital and all the kids in this world.

May God Bless each of you.

A Few Pictures

Wow...it's been a while! Lots to report!!!!

I realize that is has been ages since I have posted.  Since our last post, lots has happened!!  Jack is now almost 15 weeks old.  He has made tremendous progress, and we are so thankful for the changes that we have seen in him.  Unfortunately, the WHOLE month of December wasn't exactly easy on Jack.  Early in the month Jack was readmitted to Cincinnati Children's because we were having so many difficulties with him while trying to feed him and having to stimulate him to breathe.  This was and is clearly not normal.  One episode he wasn't breathing and it did  not occur while he was eating which was extremely scary.  After they admitted him, they wanted to do a swallow study and make sure that he was swallowing like he should be and not aspirating.  Fortunately, it proved that his swallowing was great and there were no issues with that.  They also did an ultrasound of his brain to make sure that he didn't have a condition that occurs in a tiny population of babies with acid reflux.  Again, we were blessed with great results and everything in his brain appeared to be normal.  Jack slept through that whole procedure, which made it easy for them to see his brain.  By the way, the ultrasound of the brain is definitely something worth seeing.  Steve stayed the evening with Jack at the hospital, and did an amazing job of taking care of Jack, especially since he was not allowed to feed him.  While there, they fed Jack a different formula than we had been using.  Jack seemed to be happier feeding on this, and with the medicine change we were seeing slight improvements.  He ate all day at the hospital with no complications, so we were able to go home 24 hours later.  We decided to stick with the change in formula at home, even though it was more costly, it was making it easier on him, which is all we cared about.  I must say, it's NO FUN at all having to worry about your baby breathing while he is eating and having to stimulate him so that he takes a breath.  Fortunately, that is all past us!  Jack was certainly ready for a break and we were praying like crazy that he could just feel like a normal, happy, healthy baby should.   We thought that we were in the clear after this hospital stay, but unfortunately the week prior to Christmas, Jack was starting to show signs of distress while eating again.  Not in the sense of breathing, but with comfort following feeds and during.  After a long week of a very upset, crampy, unhappy little boy, we found ourselves at the hospital again on Christmas Day.  We ended up going to Coldwater Community Hospital, near my hometown, because we were there for the day.  It was completely fine, but we certainly appreciate what Cincinnati Children's has to offer.  After doing several x-rays, blood work, an exam, it provided answers to why Jack was so upset ALL of the time.  Jack's intestinal track and stomach was filled with extreme amounts of gas.  Unfortunately, there is nothing that they can do for this, other than give him Mylicon drops before all feedings and on a less gassy formula.  So, we are now on the MOST expensive formula out there, use Mylicon drops each feeding and Jack seems to be much happier.  There are still times when he is fussy, but it is not to the extent or severity that it was during the month of December, and for that we are thankful! 

Since the new year, lots has changed! I went back to work after being off for 12 weeks.  IT WAS TOUGH!!!  (and still is!) Steve stayed home for one week and he decided that he could never be a stay at home dad, nor does he have the desire to.  On the flip side, it's a week that allowed Steve some very special time with his son, and I appreciate his willingness to stay at home for the week.  Following that week, Jack was able to stay at home one week longer because my mom was so gracious and kind to take vacation for us and watch Jack for 1 week.  She was amazing.  With her taking care of him, it was the true test to see if Jack could go to our sitter's house or if I needed to go back home and stay with Jack until he was ready for the sitter's house.  Of course, she was wonderful with him!  Jack enjoyed his time with her as well!  Without my mom's support, I wouldn't be able to do what I do!  She is such a solid source of strength for me, and her willingness to take a week from her very busy schedule to be with us means more than we can share and express.  Since Jack did so well with my mom, he went to the sitter's house this week for the first time.  All reports have been good, and best of all, Jack seems happy there.  I certainly wouldn't expect anything different because of the amazing woman/mom that Tracy, our sitter, is. 

As for Jack, he's about 12 pounds and doing well.  I still say stupid reflux about 10 times a day because it still sucks for Jack.  It's been improved with his medication change, but I wish it were gone!!  I'll post more later...but until then, I hope you enjoy the pics of Jack and Madeline.