a special baby

What a day. Thank you for so many sweet comments on facebook and via email. I thought this would be the best way to let everyone know what is going on with our Luke.

On about day 4 of life we discovered a blister that had popped on Luke's heal. We thought it was possibly from the heal prick they do in the hospital, and that it had just blistered. Within about 24 hours, we started noticing blisters pop up rapidly on his hands and toes. After 3 pediatrician visits and 3 dermatologist visits, Luke has been diagnosed with Epidermalysis Bullosa (EB). It is a skin disease that he will have for the remainder of his life. You can google it if you want, but in a nutshell there are 3 types of EB ranging from mild to severe and Luke's is most likely somewhere in the middle. His body was not formed with the "bonding agent" to hold the layers of skin together like most people have. How did he get it? Either Greg and I carry the recessive gene (that we don't know of) or it was by chance that a cell mutated in the womb and left that certain gene out. If this is the case...the chances were about 1 in 100,000. God has a plan...He has to.

Greg and I will be doing genetic testing to see if we carry it. If so, Luke will most likely be an only child as we would not want to put future children through this. This is a lot to digest at the moment. Luke will be a special needs baby...anything that causes friction to his skin can cause a blister. (playing sports, instruments, crawling, etc) As of now, the blisters do not cause him pain unless they pop and raw skin is exposed and rubs on something. It is hard to keep a newborn 'still' :) Greg and I are learning how to care for the blisters...keeping them wrapped up and covered. (thank goodness cool weather is coming!) He also has a few in his mouth and throat but they don't seem to bother him. (the feeding issues are coming from tummy pains)

Today the dermatologist at Texas Children's did a biopsy of a blister on his elbow to determine the exact form of EB that he has. We are hoping it is more mild than they think it is. I have to brag on the little guy...with a needle of local anesthesia, biopsy, and 2 stitches, HE DID NOT CRY. yes, our 3 week old did not cry during all that...yet cried while the doctor looked at the blisters and during a diaper change! My first thought was that God was holding him during the whole thing being the Great Physician He is numbing the pain. He is home sleeping soundly now with a little red bandage wrapped around his 2 stitched in his elbow.

As Greg and I were leaving the hospital, it only took us seeing one other child with way more severe special needs to realize we have it good. So good. No one wants to watch their baby go through this. We are sad for him...that he might not have as much opportunity as other children, but thankful it's not worse. He is a fighter already and we love him so much. This is his normal...a new normal. Who knows...maybe he will prove us all wrong and get better! There is always hope.

Overwhelmed.

Overwhelm: 1. to pour down upon and cover over or bury beneath 2. to make helpless, as with greater force or deep emotion

These past 3 weeks have been overwhelming. Yes, having a newborn can be overwhelming and certainly a sick little one is overwhelming too...but I have been mostly overwhelmed in a good way. It is amazing the amount of people that care. I can't stop thinking about the MANY people who have said they are praying for our precious Luke, Greg, and me. God promises hope, and every time I think of everyone who is lifting us up to Him, I am renewed with hope...which these days is what we are living on. Hope that Luke is going to be just fine. Hope that Greg and I are going to be just fine. Hope that these hard days are soon to be behind us. Hope that Luke will be a healthy happy little boy soon. I just keep praying that God continues to bless those who care so deeply for our family and who have spent precious time in prayer for us. Thank you. Not only are the large number of people praying overwhelming, but there have been so many people offer to help us. Whether it's friends bringing dinner, offering to babysit, going with me to the doctor, bringing a Sonic drink, or offering to grocery shop...I am thankful. A special thank you to my sister Anna, who has listened countless times to me complain, worry, and ask so many medical questions, and come a weekend to help...I love you.

not sure if he will read this but Greg has been amazing. He has been my rock. I can't even type this without crying. I love him more than I ever thought I was capable of loving. He is and always will be my first priority. Prior to having a baby, I would always say that I could handle getting up in the night and being the primary care giver for our baby while Greg is working. That's what a mother is supposed to do, right? I have failed poorly. With so much grace and no complaints...Greg has stepped up where I can't. He gets up during the night for hours upon end with Luke and still manages to work. He has taken so much time away from work to help me, go to the doctors appointments, arranged help so I can sleep, searched the city of Houston for a pharmacy that has the right meds, let me cry many, many tears in his arms, and still tells me I am a good mother. He has so much poise. Thank you my love.


This is what I am talking about... an email with so much heart from my DEAR friend Elizabeth who has not even met little Luke..yet! (hurry and get here from Ft. Worth!)

sent a few days ago: I keep asking God - WHYYYYY??? If He gives us hands and feet to serve Him - WHY are precious Luke's covered in blisters? When friends go through challenges like this - I question how they could possibly remain faithful to God - HOWEVER can you look towards Him when he has allowed something like this to happen to a precious babe? I question how I would be able to remain faithful in such a time - I don't know that I could? When I was praying for Lukey this morning - and asking God how can someone be faithful to Him when their precious is hurting - He reminded me that even when WE aren't faithful...HE is!!! That song "Great is Thy Faithfulness" came to mind. I feel like it is applicable to you and Luke...because I know if I were in your situation, the ONLY way I could handle things is to take it one day at a time - which is perfect - because as the song reminded me - His mercies are new EVERY MORNING!


I bet you know the chorus or remember it from church...as you sang hymns like we did in the Methodist church:


Great is thy faithfulness, O God, My Father
There is no shadow of turning with Thee.
Thou changest not, Thy compassions they fail not;

As thou hast been, Thou forever wilt be.
Great is Thy faithfulness!


Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!


So then of course, I am a dork - and had to look up the background of that hymn...and found that it was written from Lamentations 3.


I am praying that you and Greg FEEL God's love and compassion, and KNOW that He will never fail you. I am praying for Luke - and for the Doctor's that are taking care of him.

Lamentations Chapter 3
19 I remember my affliction and my wandering,
the bitterness and the gall.

20 I well remember them,
and my soul is downcast within me.

21 Yet this I call to mind
and therefore I have hope:

22 Because of the LORD's great love we are not consumed,
for his compassions never fail.

23 They are new every morning;
great is your faithfulness.

24 I say to myself, "The LORD is my portion;
therefore I will wait for him."

25 The LORD is good to those whose hope is in him,
to the one who seeks him;

Greg and Luke

I only have a second...but you will have to excuse the blog lately. If you haven't noticed, Greg has taken over! (without my permission :)) He is the one who changed everything on here (sorry Amanda, once I am back at it I will need a new lift!!) I am glad he likes to blog but sometimes I'm not sure he knows "blog etiquette!" A big apology for the awful, inappropriate picture that he put as our header! He is learning! :) I love him so much anyway!

Please pray for Luke. He has had a rough start to life. He is battling some severe blisters on his hands, feet, and mouth/throat (making meal time brutal for all of us!) We have to keep his feet and hands covered at all times. We have only been out of the house for doctors appointments. He is also pretty colic-y. He is slowly getting his nights and days together...sleeping between feedings at night. It takes him a long time to calm down and fall asleep after each feeding though. I know he will continue to get better...thanks for all the prayers, love and support.

13 days old

As of today September 19th, Luke is 13 days old! We have been blessed with great support from family and friends. Melissa's mom, dad, and sister were here the weekend of Luke's birth. Her mom stayed through most of the first week until Greg's mom relieved her, covering another week. Without our Mom's what would we have done?! So much to do, so many clothes, feedings, all nighters. Most of you have experienced it at least once. Mom Alston and Jones were so sweet and selfless, sacrificing sleep, time, and much more.

Kelsey came for the weekend on Luke's 6th day. Unfortunately she couldn't hold him as she had a cold. She is well now and coming again very soon. She is excited to have a brother. Greg is happy as well having always worried about her not having a sibling to love and grow old with.

Melissa has enjoyed so much support from her friends. Visits from the West Houston crew have been plentiful, frequent phone advice and compassion from Elizabeth in Fort Worth, as well as from both of our sisters, have been much appreciated. And, can I just tell you about the advantages of living across the street from Lindsay Garrett!....... Desserts, Sonic drinks, dinners.... WOW! And she has a 3 month old! We are not worthy, but we are grateful nonetheless.

Amy Wagner has been a great friend as well. She has so many great ideas and tools to make our lives easier in transition. She has been so generous and kind.

We are thankful for all of our neighbors... Mandy, Julie, Autumn, and ANNA MARIA.

For those of you who don't know ANNA MARIA........ She is an 80 something born and bred Italian lady who gives us words of encouragement when she sees us.

The latest examples: On Melissa's due date we were proceeding down the street on our daily walk. We walked by Anna Maria's house (which we didn't for months because Melissa was scared of her ... Jesse pooped in her yard and the "little boisterous Italian Lady saw it") he he.

Anyway, Anna Maria greets us in front of her house.

Anna Maria: "Whena youa going ta have you baby?"

Melissa: "Well I am due today"

Anna Maria: "Wella Whata the hella you doing walking downa the street for then?"

(Six Days later after the baby is home, Anna Maria knock on the back door, Greg open's the door.)

Anna Maria: "I hava a gift for da baby."

Greg: "Well come in Anna Maria."

Anna Maria: "I don't wanta to come in".... (she then sees Melissa behind me holding the baby)...."Ohhh da baby, maybe I do want to come in." (As Anna Maria steps into the house)... This stepa is dangerous! Somebody going to geta hurt."

Greg: " I know Anna Maria. I need to get that fixed."

Anna Maria: (to Melissa) "You got ta nota holda that baby all da time or you not have tima to comba your hair, looka...." (Anna Maria points at Melissa's hair gesturing to me and my mom)

(Melissa and Greg acknowledge and thank her for the advice and gift. Anna Maria leaves as she complains about the step again)

Thanks again to everyone for your calls and prayers. More to come later.

WHY BREASTFEED???!???

(Note- The opinions expressed on this subject matter are not those of Melissa, and in no way represent her position. This is just her husband trying to help justify the bottle so his beautiful wife can get some REST!)

Isn't the justification of breastfeeding a little out of stride with the way we live the rest of our life? Of course breastfeeding has it's benefits. The mother bonds, supposedly it has been proven that their immune system is stronger, etc,etc.

Immune system MY BINKY!.... myself and everyone born in the 70's, 80's and 90's survived without issue. Back then it was in vogue to bottle feed. It was a status thing. Only the less fortunate breast fed, and let me tell you it must have been the really less fortunate if I was bottle fed. That's a whole other story..... I'll tell you all about that another day. The differences in how I grew up compared to Melissa will make a great story.... BTW, she was bottle fed too.

So okay, back to why BFing is out of stride with our life today.

"The baby works harder to get the milk. He works like 20 something muscles vs. 4."

Well, makes sense. But does this justify leaking boobs, painful nipples, under two hour date nights, $500 pumps, or off limit boobs for the husband? I don't think so.

My argument for the bottle using the same line of thought with the rest of our life habits......

It would be better for us to leave the windows open in our house year around so we breathe fresh air. We would get sick less, and it is better for the environment.

I would be much healthier, and slimmer, if I were to walk to work. Handwashing my clothes would make them last longer and I would be in better shape from the exercise (I would use like 200 muscles instead of none). I would raise my own cattle and vegetables as I would benefit from the exercise and rigor of work, and would ensure no hormones were injected in the meat.

BTW, not giving Luke formula (with boosted hormones in it) will immediately put him behind in his quest for the NFL! You think those big fellas were breast fed?!

Out with the automobile, escalators, elevators, electric shavers, refrigerators, dishwashers, and formula. It's back to the boob for all of us! Hey, at least our breast fed kids will feel right at home!

Greg here.

Luke Alston Jones was born yesterday, September 6, 2009 at 4:37pm. He weighed in at 9lbs 4oz, and is 21 inches long. Melissa labored for 24 hours and pushed for 2.5 hours, hence the reason you have me as an interim blogger. She'll girl it up for you later with more pics and stuff. You girls would be proud though. Melissa pushed relentlessly, packed enough clothes for Luke's first year on Earth, AND, she had the foresight to wear water proof mascara for labor.

PAST DUE! 40+weeks!

Please disregard the baby ticker thing on the right...our baby is not 2 days old! :)

Well, I know babies are late all of the time, but I never would have thought mine would be! I guess God and I had different timings...and I'm sure without a doubt, His is better for a good reason.

We visited Dr. S. this morning for the last time until we meet Luke. I did not progress any from last weeks check sooo he decided to "help" me progress. Let me tell you...going from 1cm (yes, ONE, I must have misunderstood him last week and thought I was 1.5) to 3 cm manually was not a pleasant experience! With that being said, I am now dilated to a 3 and have been put on the list at the hospital for an induction TOMORROW 9/4/09. It is not 'set in stone.' Apparently natural labor patients are first priority, then medical inductions, then social inductions. (we are still considered social until I hit 41 weeks...Wednesday) I am number 5 on the list...whatever that means. We were told to call the hospital at 5:45am and they would either give us a time to come in or tell us we have to wait. If we don't get in, who knows when this baby will come! Please pray that there is a room available for us tomorrow morning or that I go into labor on my own between now and then.

It is the weirdest feeling knowing that tomorrow could be the day we become parents! I am so excited to meet this precious baby that God has given us to care for and SO nervous/anxious at the same time! Thank you for all of the sweet encouragement and comments! Hopefully the next post is all about Luke!

here is a BIG BELLY pic from today...excuse the tank top, I did not wear this in public!