Thursday, March 12, 2009

jonah update

So, more news...

The umbilical line (UAC) is out. It had slowly started coming out over the last day or so, and when they checked it today, it was precariously close to coming out on its own. (He's so greasy, it had just slowly worked its way out). Anyway, had it come out unexpectedly, he would have bled out of that artery a lot, so of course, they felt it better to go ahead and get it out. I'm SO glad it's out of there.

However (yes, my friends, there's always a however), this meant that he was getting no additional nourishment of any kind besides what he is nippling (which is still inconsistent). So... the feeding tube is back in, but secured a little more tightly with a really soft, thin tubing tied around his head. The hospital is in the process of ordering Mepitac (thanks for the suggestions) to secure it better, and thanks in advance for sending us some if you are. I know a lot of you have offered to send samples, and I greatly appreciate any EB product that might be beneficial to Jonah... at least til I figure out WHAT in the world I'm doing. I'm also going to have lots of questions about at home care once the time comes. And the time WILL come.

Jonah just finished eating 25 cc's and ate 20 at an earlier feeding. I think we may try the Dr. Brown's bottles, but we're also using a squeeze type bottle now (that plastics brought up for us to try), so he doesn't have to suck so hard. He knows how, but after he drinks the first 10 or so cc's, he seems to kind of give up - it could be because it hurts his mouth.

I feel pretty good about today overall, and I can't tell you how great it is to have my Matt back.

Okay, I have a request. And I hope you take it in love, because that is how I mean it. Please do not call me at the NICU if you are not family or personal friends. I have so much going on, am stressed out most of the time, and any time I have to spend on the phone is time away from Jonah. Plus, it makes the nurses have to be my PR reps, and I just feel really bad about that.

Also, if you have an issue with the way the doctors are choosing to treat Jonah, please leave a comment here, and do not call them (or me) at the hospital. There are MANY other babies here at the NICU besides Jonah, and I want the doctors to spend their time treating their patients, not having to deal with the repercussions of my blog. I mention them by name here in order to thank them for how awesome they are and so that you can pray for them by name. I just don't want them having to field extra phone calls and messages because of this. Do not get me wrong, they have not complained, but I feel responsible and guilty when I'm causing them extra time and effort - believe me, Jonah takes PLENTY of their time as it is. I appreciate SO much your willingness to help and be an advocate for Jonah. We need all the help we can get. I can't believe how much you guys care for and love him. It blows my mind everyday. But, please, leave a suggestion here, and I'll be sure to pass it along. My sister-in-law, Amy, is going through all the EB comments and compiling all of the EB medical suggestions and resources into one document. I read all your comments, and we are taking them to heart. Everything that I've taken to the doctors from you has been considered. They are in touch with Dr. Fine at Vanderbilt as well as the DebRA folks, and I trust them. Some suggestions don't fit Jonah's case. Others are a perfect solution. Jonah is in great hands.

Please know how much Matt and I love and appreciate you. You have been amazing in your love, prayers, and encouragement. I could not do it without you. Thank you EB peeps for helping me. I'm so honored to be part of such a caring and accepting community. PLEASE, PLEASE keep giving me your suggestions and sharing your knowledge. It's been so GREAT. I know how much I need you now and how much I'll need you in the future. You guys are awesome. I hope you know I want to hear from you... but it's just too much on my shoulders to get phone calls during the day - when I'm by myself - with such heavy and confusing information. Emotionally, I just can't handle it. I hope all that makes sense.

Thanks so much for your love and continued prayers.


Kristine said...

That was written with lots of kindness and love!

I spent over 2 months in the PICU with my baby (GBS Meningitis), so I have some experience with the worry, stress and fear that comes along with a sick little one.

I am pretty shocked that ANY person (and I KNOW they may mean well) who does not know you personally would call for you at the hospital, WHILE you're taking care of your child!?

Calling his doctors, in my opinion, is COMPLETELY out of line and kinda CRAZY.

I'm sorry that with ALL you're dealing with, you have to deal with THIS. Some people just boggle my mind. I don't get it.

Saying a prayer for you and little Jonah tonight as usual.

I'll also say a prayer that people following his story will know how to help appropriately and when they are just plain trying to interject themselves where they only belong if asked.

Lambert Family said...

You shouldn't feel the least bit bad, negative or wrong in asking to have no phone calls from anyone other than family at the hospital or anywhere for that matter. I never even imagined that would be an issue you'd have to mention. I wish I did have EB advice to give, but unfortunately don't. However, I have been and will continue to offer daily prayer and love in behalf of you, Matt and Jonah. Thank you for taking time out of your day--time is so very precious as you well know--to write these informative, detailed posts. Thank you for sharing your personal thoughts and story with all of us. Thank you for the detailed prayer requests that help shape my prayers each day for your family. I am happy you were able to spend time with Matt. I can only imagine how excited you are to see him and have his physical support again. Hugs, love, and sincere prayers to the three of you.

Janel Waters said...

I loved reading this post if only because I could hear the relief in your "voice" - I know that having Matt back is a huge weight off your shoulders!

I cannot wait to get home to get a package in the mail to you! It is killing me that I can't send you the supplies right now!

I know that I speak for the whole EB communtity when I say - ANY TIME!! Any time you need ANYTHING - just ask - we will all be there for you, Jonah, and Matt!

I really hope that tomorrow is a GREAT day for everyone!!

God bless you all!

Jennifer Pelkey said...

We are thinking of you and saying many prayers, as usual, for little Jonah tonight. He is always on our minds and in our prayers.
Jennifer, Darren, Matthew and Charlie Pelkey
Elkin, NC

natalie said...

Thank you for your transperancy here. This is YOUR place to share, to give us information so we can support you anyway we can. When we overstep the boundaries (no matter how slight or how gently), we need to know! I am surprised that "unfamiliar" friends would call at the hospital or bother the doctors, so you are right to draw the line in the sand. As brothers and sisters, we should understand and respect the boundaries that you create as you care for your family.

Much praying for you!!!

Kristina said...

I can totally understand why you need to have that time with Jonah, and not be interrupted. Makes 100%sense to me :)
Know you, Matt, and lovely Jonah are all in my prayers :)

Beth said...

Your words are very kind and very thoughtful!

I too am surprised that someone that is not family or a very close friend would contact the hospital. You handled the situation with such grace!

Praying for Jonah and his eating issues, praying for peace for you and praying for good health for Matt!

Margie said...

I just want to say what a precious baby Jonah is. His pictures are beautiful. My sister's step-daughter suffered with EB and my sister often took care of her so I am familiar with the many needs and the constant care required. You have been through more in your short lives than most people go through in a lifetime. God gives special children to special people. You will all be in our prayers. God Bless you richly.

Desha said...

I know how hard it is when someone you love is in the hospital, and well meaning people want to talk to you. It is so hard because, even if it is an encouraging word, it is still time consuming. There is nothing wrong with you setting boundaries, and it helps people to know what you need and don't need at this time. Still praying. I hope you are able to rest a little tonight.

Anonymous said...

For those of us who would like to help you get things for Jonah he needs (we all know medical bills are ridiculous), can we send care packages? I was asked by my Sunday school class if they can get special bottles, toys, or maybe a mobile for above is incubator?
I promised to pass the question along. I had already mentioned it should probably be something you can sterilize before using, so I dont know how you would feel.
As always, we are praying for you here on this side of the state.

Anonymous said...

I'm so glad that Matt is back in action. An answer to prayers!!!

If you need any help about how to get a 'special' pokey eater to nurse, I can give you a few tips Just say the word via the blog and I will shoot an e-mail or post a blog entry (which you can certainly delete after you've viewed it) with a few things that worked for me and my 'special' son. I pretty much check your blog every hour!

Thinking and praying for Jonah, Matt, you, the doctors and the poor nurses fielding calls from well-intentioned yet misguided helpers. Well put on your message. I don't know if I'd have been so kind and gracious.

Anonymous said...

I am wondering kind of the same thing as the previous poster...

If we would like to send you guys things, even things not necessarily for Jonah's EB--and for you and Matt as well--could we do that??? Would you feel comfortable posting some ideas of things that would be of most help? If you don't feel comfortable "asking," maybe you could have a family member do it for you?!?!

I am not one of the people who has called the hospital (I don't even know what hospital you're at!), but I have a feeling that people do that because they just want to do SOMETHING to help. I know I do and I've never even met you guys.

Anonymous said...

The Lactation Consultants there at the hospital are absolutely phenomenal!!!!!! I'm local and used them many, many, many times as I struggled for the first 4-5 months. Use them as often as you want..... Penelope and Mary are wonderful, as are Jimmie, Karen, well, just aLL of them. They are patient and will do all they can for you.

Anonymous said...

I'm going to echo previous commentor's posts and ask you what can we do to help? Prayer will always be the priority as God hears our prayers, but perhaps we could send baby stuff, money, donations? What do you need? How can we help? Perhaps the well-intentioned, but misguided callers would also be willing to help in this more mainstream fashion :-)

Simba9960 said...


Wow how much has happened since I last read the blog last week!

Every time I read your posts it takes me back to when "we were there" and it feels unreal. Your latest adventure - the broviac line is about the same scenario that we went through...I was told w/Bianca that the central line in her belly button is only good for a few days anyways because that area tends to heal right after they are born. Then we went for a broviac line on her chest. She wasn't intubated or sedated for this procedure. She was however given versed so she won't "Remember" the pain. Long story short it worked out just fine for about a week and then she popped it out. Then they went straight for her head! It freaked me out because they shaved off her beautiful hair and had to put the line choice...but we made it through. She does have a little battle scar (as I like to call it) on her chest from the broviac but it has never been a problem area. They gave her two stitches and we were on our way...sort of speaking.

As for the phone calls to the NICU I'm really surprised the nurses or front desk are even putting them through...I know so many out there mean well but I whole-heartily understand your point of view. I cannot imagine that people are actually calling your doctors directly. Wow...I think your blog is resource enough to gather the information you need take care of little Jonah. I'm sure when you are ready...settled in at home...with Jonah you'll have more than enough time to get involved even further with the EB community. But keep up w/what you are doing now fully devoted to that little piece of meat =)! We pretty much shut out the whole world for a few months after we got home. Everyone understood real fast that we needed time to let it all sink in and get comfortable w/the situation at hand.
One good thing I can tell you is that we quickly switched our mentality on this whole EB thing...our motto around here is
"We don't have to learn how to live with EB...EB has to learn how to live with us!"
That plus tons of faith got us through one of the most toughest moment in our lives! And by "our" I mean my husband, me and our child!

~Sally - mommy to Bianca,RDEB - going strong!

Anonymous said...

My child didn't have EB but she did have a severe heart defect that required surgery within days of her birth. Many complications occurred and she wound up spending 6 long months in the PICU very critical. The days at the hospital are long but the nights away are even longer. Savor today and trust in Him. We are praying for you! By the way, my daughter is doing great and was worth every tear drop :) You are on a long road but you don't travel alone.

Sarah @ Thrifty Decor Chick said...

Good for YOU. I know people just have your best interests at heart, but good for you. You have enough to worry about. Saying a prayer for your family tonight.

j3k said...

Words well spoken!!! I don't know or pretend to know what you are going through. I do have a child who has spent a great deal of time in the hospital but not as a newborn and I know nothing about EB. SO for now the best I can offer is my prayers and that is what I have done from before his birth and I will continue to do!!!!

Prayers, Hearts and Hugs
Marie Wimsett

Anonymous said...

My prayers are going out to you to make it through these long hard days with Jonah. Do not feel at all bad about asking others not to phone you or your son's Drs. I know that someone with an EB child may feel compelled to correct your Drs but know that if they love you and Jonah that they will leave comments here. My prayers are lifting Jonah up tonight so he may be healed enough to begin eating more. I was so psyched to read that you tried nursing him. How beautiful that is.

Much love,
Karen in Boston

Emily's Blog said...

Like Kristine said, I too am shocked that ANY blog reader would go behind your back and call the hospital to talk to the Dr.'s about Jonah's care. Don't they know about the privacy laws? That is totally wrong and I am sorry that it had to happen to you.

You are doing a GREAT job taking care of Jonah and no one should ever question that.
I pray for Jonah and your family every night. I also pray for the Dr.'s and nurses that they will have the wisdom to know how to treat him.

I did have a thought that might help with him trying to rip out his tube. If you got baby mittens, or even baby socks, and put them on his hands, that might help him to not pull on his tube, since he wouldn't be able to grasp the tube. But I don't know if his skin will allow something covering his hands. The tape that is being ordered works GREAT! I have used in the past to hold down my PICC lines and it is the best tape for my skin, since I'm allergic to alot of the others.
I hope the tape works for him.

I pray that he will continue doing well.

Anonymous said...

Your point was beautifully conveyed.

Anonymous said...

Praying that Jonah doesn't pull out his feeding tube...and that Jonah eats enough to no longer need that tube. You did a great job of explaining yourself...I am sorry that some people are so rude and you have to deal with their thoughtlessness. You both are great parents.

Annapolis, MD

Sara said...

Many babies with EB are lactose intolerant. It could be that after eating a half an oz or so he realizes his stomach is upset and that's why he stops eating.

Just a thought...

purejoy said...

well said, and so appreciate your heart. that people would call the nicu and try to talk to the drs?? are you serious!!?
that is cheeky, if you ask me!
well, i hope you rest well tonite and that jonah rests well, too. hope the new feeding tube works out alright and that the new fastening job works better, too!
thanks for sharing so winsomely. take care, blessings from tennessee!

Anonymous said...

I am a speech pathologist and the two things that came to my mind while reading about his eating are:
1)Have they checked to see if he has reflux?
2)The muscles in his face, tongue, and mouth just may not be strong enough yet. Sucking is exhausting for a baby, so he may just be taking the first little bit and waring himself out. Check with the speech pathologists at the hospital, they have techniques and exercises to do with him that can help strenghten those muscles.

Praying for Jonah, his amazing parents, and the doctors!!

Kristy said...

First of all - well said - graceful, sweet, funny, strong. From someone who has NO tact - Bravo!!

Second - I have been wracking my brain thinking of ways I could help you, something productive I could suggest, but it has been 6 years since my EB baby was in the NICU and so much has changed...anyway, imagine my suprise and delight when YOU taught me something---I knew nothing of Mepitac and was intrigued when you mentioned it in your post tonight. So I have done research and I am going to order some to have on hand if needed. And if Carson ends up in the hospital (again) needing IV antibiotics, they will be able to secure his IV so it won't come out twice a day. So....thank you, Patrice! We'll keep praying for you all.

Kristy (mom to Carson, 6 yo, EBS)

Aunt Joyce said...

Patrice - Continue to trust your instincts. Only God knows Jonah better than you do and He will fill in the gaps when you need Him to. You saw that last night. Continue to pray believing that God will answer your prayers. You have done so and seen answers since February 27th. Continue to hold on to Matt. Only God loves you more than he does. If possible, find a little time to "get into" God's word every day even if you have to have someone read to you. If everything else fails, go to sleep listening to Him on tape. I can think of no better way to go to sleep.

Another suggestion, and only a suggestion, from "your" Aunt Joyce, you and Matt need a date night soon even if it's just to stop at McDonalds on your way home. It is very important that you keep in "touch" and talk to Matt about his day. As much as he loves Jonah, he needs to know that you are as interested in him as you are in his son. I do not intend to add more pressure than you already have but long after Jonah comes home, grows up, marries and gives you grand-children, Matt will be there continuing to hold you every night.

God Bless you to Heaven and back,
Love you all three,
Aunt Joyce

Scrapwithsabrina said...

I have no advice, only prayers. I am so sorry you are going through this but your faith in Him will guide you.

Your little guy is soooo adorable, thank you for sharing all of the photographs of him!

sabrina from kc.

Melissa said...

Well said, Patrice! I think you handled that one with love, patience, and kindness. Hang in there!

Anonymous said...

I think you put that all very nicely Patrice. It is understandable that you don't want to be sitting and chatting on the phone. You have been handling everything so wonderfully. I have shared your blog with many, and know from reading your updates, that all the prayers are being heard. Hang in there! I look forward to the day all of us in the Shepherds class get to see your precious Jonah! God Bless!

Amie Martin

Stephanie said...

Fell asleep last night praying and praying for Jonah's healing. Thinking and praying for him early this morning.
Go, baby, Go!... into ALL THE WORLD!!
God has a huge calling for your sweet little one!
lots of love from TN-

"Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness* will go before you, and the glory of the Lord will be your rear guard."
Isaiah 58:8

**I will not have computer access much over the next 10 days. I may not be able comment to you but will be PRAYING!!!!

lottfam said...

I have been following your story since a few days after Jonah was born and learned of it from another blogger. Jonah has been in my prayers. I find myself thinking of him and wondering how he is doing throughout the day. You always come across so positive . . . I don't think I could have that attitude, but God gives us the grace to handle what trials He gives us. I will be sure to add you and Matt to my prayers as you've shared more of your struggles. Jonah sounds like an extraordinary boy and such a fighter! So precious -- he looks so good in his most recent photos. May the Lord continue to give all of you strength.

Penny said...

I LOVE the pictures you posted Wed. He is beautiful! My kindergarteners and I pray for Jonah every morning. God DOES still perform miracles. Keep believing!

Anonymous said...

your point conveyed, with such grace and love. So glad Matt is feeling better. give that little man baby a kiss from me.

Sending prayers for a healing and peace. love ya Gina

Janel Waters said...

The first thing I do in the morning is to check your blog. I just re read what you wrote yesterday and I am just so shocked that anyone would be so bold as to call you at the NICU OR even more bold to call Jonah's Doctors! Some people just amaze me - and not in a good way. I'm sure that they meant well, but that is still no excuse.

Anyway - I just wanted to echo the sentiments left by so many others and let you know that I hope you, Matt and Jonah had a good night full of rest! you all need it!


Zack Troop said...

Oh Patrice, I am so sorry that people have over stepped their bounds.

I know that you don't want a G-tube and that is understandable, I didn't want one for Zack either. It hung over us like a dark cloud. I was so worried it would be just one more thing that separated Zack from others. When the time came that he needed one I was sick. But OVERNIGHT I changed my opinion. It was a God send. It has been the most wonderful thing, instead of setting Zack apart from others it makes him more normal, eating is no longer and issue, it is enjoyable. He no longer has to take nasty medicine by mouth and is labs and energy levels are great so he can play and have fun without the worries.
KaDee, mom to Zack, 6rdeb

Baby Bird said...

Still praying!
Just another encouragement from our LAST legacy devotion...
Today's topic is "Reaching the goal...keeping the faith".
"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us." Hebrews 12:1
It was talking about how much we need encouragement from our Christian brothers and true! And your situation is an example of how the body helps one another.
I love you and am glad to hear Matt is BACK! Take care of each other and keep trust the Father that made your precious Jonah! He will lead and guide you!
Hugs & Prayers! Aimee

Kristen said...

I have been praying every day for Jonah. I have sent out e-mails to everyone that I know asking them to pray as well...and to tell everyone they know.

I have a prayer suggestion for you if you have not already done it. I know many churches annoint with oil. Jonah probably cannot be physically annointed, but maybe in his room, you could be annointed for him...our church annoints with oil, and we have seen cancer healed...I mean, there one day, gone the next type healing.

So anyway, it's just a suggestion if you would want to try it. I can't imagine what you are going through. I also can't wait to sign onto your blog and read the words:
Jonah is healed...because that's what I'm praying for!

Thank you for taking the time to blog in detail. Your time doing that is precious.

Amber Schmidt said...

We are reading along and praying fervently for Jonah and your family as you weather this storm. I added Jonah to the Pray for the Children blog. Hope you don't mind!

Hugs and prayers,

Julie said...

Very well written post from the heart.

Thinking of you and praying for sweet Jonah to have a good day. He is so cute!

"Hope is what happens as long as we breathe." Just keep breathing...

LucieP said...

wow can't believe peeps had the audacity to call your medical staff...crazyness!

I will continue to pray
For strenth, grace, faith, patience, and understanding.

you can do it mama....You are doing it mama....!!

Heather said...

Patrice, You are a fighter, just like Jonah! Keep following your heart and those mama instincts and keep fighting for what you feel is right for Jonah. I am so glad you have so much support from the EB community. Those Moms definitely seem to know best what works and what doesn't. My SLP brain has a few thoughts. Have they considered reconsulting the SLP since he is now bottle feeding? She should know about all the possibilities for different bottles and might be able to suggest a different bottle or a different position or something. Also, as far as the feeding tube goes, is it possible for you to bottle feed first and then they give him whatever he doesn't eat immediately through the tube? That way, maybe he would be more hungry at feeding time. Hopefully they are already doing this. Also, remember, he was born 3 weeks early and early babies are just plain hard to wake up to eat sometimes, even without the pain meds. We love you guys and continue to pray for all your specific requests. Mikey and Ali keep praying that Jonah will get better "so he can play with us". Big hugs to both of you.
Love, Heather

Hannah said...

Williams Family,
The story of your amazing journey and heartbreaking struggles has made its way to Las Vegas. My mom has been praying for you family and has sent a link to your blog to me, in Nevada.
It's inspirational to see the faith your family has to cope with the highs and lows that you have been faced with. Thank you for being such an influential example of how faith is comfort in times of need. From Gabe's passing to Jonah's illness you have remained strong and never given up trusting the Lord.
You are a blessing and an inspriation. Jonah and your family is in our prayers and will continue to be always.
Keep the faith.
Much love from Las Vegas,

Suzanne said...

I wanted to pass along the e-mail of a girl I met on Ravelry (a website for knotters and crocheters) when I asked about possible fibers that I could use to make a blanket that Jonah could one day use that wouldn't cause too much friction. Chastity is 25 has a severe form of EB. She would love to answer any questions you have and give you any suggestions she can think of. Here is her e-mail
I think she can be a wealth of information and encouragement.

We are praying for you down here in Texas!

Suzanne Bell

Anonymous said...

Just wanted to let you know, I started reading your blog about a week ago and I am praying for your family everyday. Jonah is such a beautiful baby, and I will cont. to pray for his healing. You are a very strong woman, even if you may not feel like it sometimes. Hang in there. There will be a light at the end of that tunnel soon.

LisaShaw said...

I continue to trust in the LORD for your beautiful baby boy.

May your weekend time together bring all sorts of good news in Jesus Name for Jonah.

Anonymous said...

Hey Trice
I was hoping to stop by around 1 today, but my morning work asked if I could stay late, so I ended up not having time. Hope you and Jonah and Matt are doing well today. I'll stop by when I get off of work. Today, as part of my job I took a child to a "classical conversations" class at a church (a general knowledge class for home-schooled kids), and during the morning assembly prayer requests, the leader said to a random parent "will you tell a little about Jonah..." and the mom said she had been following your blog and gave some details about Jonah and asked that the family be added to everyones' prayers. It was funny to be sitting right there :-) Love you!--Kat

Anonymous said...

You may want to try a haberman feeder, alot of EB babies use this because you do not have to suck on it. We can not use anything else but this and we have to put aquaphor on it also or she gets blisters in her mouth. Good luck we are praying for the little guy.

Erin Edwards said...

I hope everything has gone well today. We have been thinking about Jonah all day. I hope he's had an uneventful and happy day. Let us know if you need anything.

Lambert Family said...

I have been thinking about you and Jonah all day, checking for updates. I hope that your day has been one of progress and that you are in good spirits. I will continue to pray and check....sending lots of love from my heart to yours.

Anonymous said...


Your love for Christ and your faith in Him is so evident with each post. He has blessed you with such wisdom to be Jonah's mommy (and Matt to be his daddy). Your family, your little boy, and your ability to balance everything on your plate is inspirational, and I am so grateful for our almighty God to bless you with all that you need each day. I'm also so glad to have you as a sister (and Matt and Jonah as brothers) in Christ! WE ARE BLESSED by Jonah and your family. May God answer our prayers of healing!

Many blessings and prayer for Jonah's 2 week birthday today! Praise God for these two weeks!

And to echo all the other comments, yes, please tell us what you certificates for local restaurants with take out, perhaps???

Laura (in Mississippi)