Tuesday, March 31, 2009

jonah - tuesday, march 31st

Jonah's home, and it's great and tiring and overwhelming and awesome and intimidating and completely fantastic! And I'm tired. Pumping and feeding a baby all night is some hard work.

Things are much better with Jonah today after a rough go of it yesterday. He was pretty unhappy most of the day yesterday, and I only took pictures during the quiet moments. :) He did really great during his dressing change last night (thank you for continuing to pray... you guys are literally helping take his pain away... pretty amazing thought, huh?), and he did well overnight too. He's started eating better again, so I'm hoping that means the Zantac is working, and Jonah's back on the eatin' train for good.

I have a couple concerns. He really acts like his throat is hurting today. He's fussy when he eats, and he cries when he yawns. Hopefully some of this is from reflux, and we'll see that diminish too, but I'm fairly confident that he's got some blisters in his throat, and swallowing is painful. It breaks my heart to think about what may be going on in there, and that the only way to find out for sure would be for an ENT to send a scope down his throat (which obviously poses its own dangers). He also snores a lot, has some high pitched breathing sounds, and sometimes acts like he's stopped breathing for a couple seconds and has to gasp to catch his breath. Nobody but me seems very concerned yet, but when you know your child is at danger for respiratory problems, it's hard to distinguish between normal baby sounds and trouble. I want my Dr. Heather back.

I'm so happy to be home, where when Jonah is sleeping, I can sit on my own couch, eat my own food, watch my own TV (although I haven't done that yet), and take naps in my own bed... or just take naps period. I better like home, because I don't imagine Jonah and I will be venturing out much in the month of April. Hopefully by May, I will feel a little less germaphobic, and the weather will be warm enough I won't worry so much about colds and the flu.

Please continue to pray for Jonah. On the outside, he continues to improve (although he still has new blisters every day... a new one on his face today - sad), but I am concerned about his trachea and esophagus. Please continue to pray for his transition home, his breathing, and for his little body at 8:00 tonight as we once again put him through another dressing change.

68 comments:

Ryley said...

What a sad thought to think of blisters in his throat.. poor baby..

just a thought... i personally think Prevacid is the best acid reflux medicine..i know so many that have tried zantac then switched to prevacid and notice an immediate change.. you might want to ask your doc about it if you dont notice a huge change!

Be strong Jonah....

Laura said...

Hooray for being home! Ask the dr about Axid instead of Zantac. The Z always burned my son's throat and nose as the reflux gurgled up and down. The axid was so much nicer for him!

rameelin said...

I am so pruod of you Patrice! Your courage and strength is inspiring. After keeping up with your family since Jonah was born, my husband has now started to read your blog daily as well and ask about Jonah consistantly. We are praying and it is evident that God is doing awesome things!!! I'm just so glad you are home and you will soon feel less fear and more comfort, I'm sure. You're doing great!
Praying that there are no blisters that are unseen. The Lord promises that nothing can be hidden from Him, so I am confident that He is already taking care of those things that may be hidden from your eyes. He is doing a mighty work in your mighty warrior boy! Thinking of you guys often!

Kristie in Dallas said...

I'm very happy you all are finally home. I wish you well and will pray for you daily.

Lucy and Ethel said...

Don't ever feel like you're being overly cautious about germs! I'm part of the spinal muscular atrophy (SMA) family, and respiratory problems are a huge concern there, too. We don't have to worry about germs (our little guy is an angel), but most SMA families become virtual hermits when the weather starts getting colder. Many homeschool their children during the 'sick' months and just stay put unless the weather's warm enough to be outside.

Jonah is beautiful and will continue adjusting easily to home. So glad you are THERE.

Lots of hugs and continued prayers from Jefferson!
Helen/'Lucy'

Anonymous said...

You are doing great! May you get those naps once in awhile. I am happy he is at home. I can tell by reading your post that you have a smile on your face.

The whole pain/discomfort thing is very difficult as a parent. Just continue to do the best you can, even if it means sitting next to him and talking to him.

Thanks you so much for the updates! Fabulous Fabulous!

Kimberly
WI

Anonymous said...

Welcome home. Can I suggest that you see an ENT that knows EB? My son struggled with the same symptoms you describe - it is very important that you have an experienced EB doctor following his throat and airway issues. If you don't think something is right - then follow your instincts and get someone to look into it. You don't want to have an airway emergency. You are your son's best advocate. We will keep praying for you.

Barbara and AJ (RDEB 15 months)

Mira said...

I am so happy for you all. Seeing the pictures of you FINALLY bring your baby home brought tears of joy down my face.

I will continue to pray for sweet, sweet Jonah. God bless!

Rachel said...

I just found your blog from another blog and have sat ALL day and read through it's entirety since Jonah's birth day. I wanted to first tell you how sorry I am for your loss of sweet Gabe and also want you to know that from this day forward, I will be a constant Prayer Warrior for your sweet Jonah and for your family. I will also pray every night at 8pm during dressing change time that he is pain free and at peace.

Welcome home with your new baby boy...he is certainly beautiful.

Thank you for allowing me in your life, to read your story.

My Love and Prayers,

Rachel (Lee's Summit, MO)
lovefor9.blogspot.com
luvfor9@gmail.com

Raising Olives said...

I'm so happy that Jonah is home. We are continuing to pray for health and comfort.

Blessings,
Kimberly

Anonymous said...

I agree with the suggestion that you should trut your instincts and see an ENT. My son made all those sounds when he was young and we found out that he had HUGE tonsils and had them removed when he was 3. That made a huge difference, but he still needed a rescue inhaler for when he was sick. At the very least you could have a nebulizer available so you could avoid a trip to the ER...

Continuing to pray for Jonah and your family every day. May God continue to heal Jonah and provide you with the strength to care for him and love him.

Sara from WI

Angie Davis said...

I'm so glad to hear that you guys are home and doing "well". I am praying for sweet baby's esophagus and trachea, as well as his pain. as always.

I thought I'd pass along this little contraption that revolutionized pumping for me. It sounds and looks crazy, but is sooo worth it if you have to pump often. I could hold and feed the baby while I pumped, or blog, or whatever I wanted! http://comfortfirst.com/p-35075-medela-easy-expression-bustier-hands-free-bra-for-breast-pumps.aspx

purejoy said...

praying for your transition as you lean more on your mother's intuition and less on the security blanket of the hospital. being a new mom is tough enough under normal circumstances. thanks for being brave to be real and transparent. we'll be praying for you!

The Burgess Family said...

Horray for being home and for adjusting well to it!!!

Joanne said...

So happy your family is home! Will continue to pray for Jonah's continued healing. And rest for Mommy! Please be sure to take good care of yourself over the next few months - you've been through quite an ordeal. May God continue to have His hand over your little one.

Joanne from Alexandria, VA
www.joanneredmond.com

Michelle in Va said...

So glad you are home!!! It sounds like you are both settling in. Continuing to pray for healing for sweet Jonah and strength for his mommy and daddy. I agree with the other comments, follow your instincts, nothing is more right that a mommys instinct. Praying for you all.
With christian love,
Michelle in Va

Tara said...

Hi Matt and Patrice. I am part of a Triad Mommies Group. A lot of the mommies want to donate cloth diapers, but need to know if their are any fabrics they need to stay away from. Thanks!

Katherine said...

M&P, It's so wonderful to know that YOU ARE HOME and that Jonah is doing well in Day 2. Even for non-EB moms, the nights can seem so long; I can only imagine what it's like for you. Pumping and feeding around the clock is certianly hard work ... I remember it well and don't envy you that task. But sweet, sweet Jonah ... he just makes me smile. Take care, and we'll talk to you soon! Love ya!

Anonymous said...

So glad you are all home! What a wondrous day it is when you get to bring your new little one home - I hope you have very fond memories of that day, despite the challenges.

I know the pumping/feeding during the night must be a pain. I had so many problems with breastfeeding (cracked nipples, bleeding, baby spitting up my blood, ugh), I almost gave up. But I have to believe it really benefits them, and it is possible to push through the problems. My son just turned 8 months old on Sunday, and I never thought I'd still be breastfeeding! I mentioned this in a previous post, but I continue to pray for Jonah whenever I nurse my own son, and I hope at some point you can actually nurse him directly, instead of having to pump. Will that be possible?

One thing I recommend is a book called "On Becoming Babywise" which my friend Amanda recommended to me (you may know her, she works for Young Life). Some people are against this philosophy (since it puts babies on a schedule), but in your case it might be helpful to be able to optimize the number of feedings Jonah has, to limit the strain on his throat. Plus, my baby started sleeping thru the night at about 6 weeks, even though I only started following the guidelines at 4 weeks! The book's available on Amazon, and you can follow the guidelines that work for you.

Good Luck, have fun with him, and know that more prayers are coming your way from Rio de Janeiro Brazil!

Amy and Sammy

Baby Bird said...

Dear sweet Patrice:
So glad to see that you are home and hear that you are settling in!
I will continue to pray for all the things you specified...
Love and Hugs!
Aimee Pence
ps-we will be dropping dinner by for you on Monday...leaving it on the porch...and Hannah has something she made for you guys that we will leave. Hope you all like Chicken pie:)

michelle said...

We're still praying! I'm so grateful you are home with your little man.

Elisabeth said...

We're reading and praying from Colorado. We love you! Elisabeth and Lynn

Jane said...

So glad Jonah is eating again and had a relative good night. He looks great!!! Sorry to hear about your concerns and I surely will be praying for all of Jonah's concerns. It is not an easy job pumping and feeding a newborn, you can ask Leigh about that. Praying each day gets better and the dressing changes go well. Hang in there and thank you so much for the updates. May God Bless and keep you all.

Sara said...

As Barbara said, find an ENT ASAP. Those sounds you are describing are tell tale signs of blistering in the airway. Not something you should just wait and see on. While a scope could do more damage, one doesn't have to be done right away unless he stops breathing frequently. But at least you'd have an ENT to go to in the future if need be.

Previcid is better for reflux than Zantac, plus he would only need to take it once a day, instead of twice like the Zantac.

Babies do stop breathing on their own, even healthy ones. My daughter (this one doesn't have EB) use to do it a lot and our doctor said as long as she didn't do it for more than 15 seconds at a time, then it was ok. But when he is breathing noisily as well, its more than just normal baby issues.

Erin Hingley said...

Stay strong, Sweet Jonah! We love you and are always praying for you and your mommy and daddy!
Love,
The Hingleys from VA

Brenda is SO Blessed said...

it is nearly 8 so i am praying for Jonah and you and you start his dressing changes. Please Lord and Father, be with Jonah and his mommy and daddy while he is getting his dressing change and help it be as painless and easy as possible. Amen

Rainbow said...

I just spent the last hour & a half reading about Jonah's journey.

The Lord has blessed you with a beautiful boy! My favorite pics so far are the one where he has a little pouty lip :) or any with his little life-filled eyes gazing at his daddy & mommy :)

One of my favorite verses is Isaiah 46:4:
"Even to your old age & grey hairs, I AM HE; I AM HE who will sustain you. I have made you, & I will carry you. I will sustain you, & I will rescue you."

Praise GOD for the way HE is carrying you, Matt, & Jonah in HIS loving arms! I look forward to seeing Jonah's progress & am honored lift y'all up in prayer!

fulksfam said...

Hey sweet lady... we're praising God that you are back in your own home and taking things at your own pace at last!

About pumping and feeding: I didn't know this until my mom looked around online, but if you have extra when you pump, it freezes for up to 3 months; our freezer is loaded with little baggies of milk! It has really helped us out to have it on hand, since formula makes Casey really sick. Of course, when you pump your body thinks he's eating it all so you'll keep making a lot, but since his appetite is only going to increase (just wait for those growth spurts, he'll never spot eating!), it will be handy to have extra milk for when you need a break.

About the breathing noises: Casey snores almost every night and during most naps these days, and our doctor told us that at this point in the year it's no longer normal, but probably allergies, and to give 1/4 tsp. of kiddie Benadryl if it's keeping him from sleeping multiple nights in a row. I realize that Jonah doesn't need more meds in his system than he already has, and he hasn't really been exposed to plants and allergens, but it's something you could ask about. Casey also makes weird noises when breathing and crying on occasion; he'll actually cry so hard sometimes that he sounds like he's choking himself and goes into a coughing fit. So don't feel alone in worrying over those sounds - it still freaks me out sometimes, even though he's been doing it for 4 months now.

You really are Supermommy, Patrice. I thank God for your example of a completely selfless, unconditionally loving mommy.

Anonymous said...

Your little boys is beautiful! I'm praying for him.

Laurie in Ca. said...

I have been praying for Jonah and for you and am so thankful for you to be home with him. Asking God to heal his precious body and give you strength and peace as you adjust to life at home. He is such a strong little baby to go through all he has been through. I will continue to keep all of you in my prayers.

Love and Hugs, Laurie

Lynne said...

Same here, regarding the Prevacid working better than Zantac for my son. Just wanted to comment. (Add it to your mental "file" :)

the*4*of*us said...

poor baby :( I'll say a prayer for his little throat tonight. How about the sun? Will that be a problem for his skin?

Anonymous said...

So glad Jonah is home! PTL!!!

Erik has always been on prevacid. It is worth asking about.

You might also think about doing dressing changes every other day if the wounds aren't looking nasty. It gives you a much needed break and sometimes it is amazing how much healing takes place in 2 days verses 1.

Before I let a Dr scope his throat I would ask about a barium swallow. They don't have to swallow very much to see if there is a stricture. If it is just blisters and sore there isn't anything they can really do that would be worth the risk of a scope. Erik has had 4 esophageal dilitations. Basically we can recognize the symptoms and call the Dr and they schedule him for one without having any preliminary appointment, because the Dr. knows we recognize the need. But he didn't get his first one until I think he was 3 years old.

I also want to encourage you not to be afraid to follow your instincts. Listen to all the advice from Doctors and EB parents and then do what you think is best for Jonah, disgarding what you don't feel is for you.

Keeping you all in prayer! Jonah is absolutely beautiful!!
Kathy mom to Erik 5 RDEB-HS

4 boys in AZ. said...

So glad to hear that Jonah had a good second day home. Praying that the transition continues to go smoothly for all of you and continuing to pray for healing for Jonah.

Elizabeth in WS said...

I want to second some of the posters who prefer Prevacid to Zantac. You might want to see if the doctors are ok with that switch, it could save ya'll the pain of a more invasive procedure, at least in the immediate future.

Brooke said...

Yay for being home, and praying right now for the dressing changes.

Jill said...

Patrice - I know you don't have as much time to read posts now that you are home with the sweet guy. Hopefully, you can find your new routine soon. So just wanted to know that we continue to anxiously await our Jonah "fix" for the day. Please keep the posts coming when you can, and know that we are still out here praying and sending good wishes for normal days for you and your family.

Just Me - MJ said...

I hope that his blisters (if they're present in his throat/esophagus) heal quickly. As someone who pumped & struggled to feed a preemie for over 3 months before he learned to nurse effectively, my hat's off to you - I can't imagine doing that on top of the dressing changes & other newborn issues you're dealing with - you're an incredible mom! We also have been predominantly housebound & germophobic during cold/flu season - it's isolating, but worth it. I know it will get easier for you as time goes on & that you really are able to get enough rest. Take good care of yourself and your sweet little boy at home!

Continuing to pray for you and your sweetest little boy.

Kelli said...

I echo those followers who say follow your instinct. Let the mama bear come out in you if you have to. The worse thing that can happen would be that you're wrong.
We're so happy you all are home. Still praying!

Anonymous said...

I'm definitely continuing to pray for Jonah and you and Matt. God will provide all you need (and more).

I was talking to my sister today and she told me that her 3 year old always requests for her (and her husband) to pray for "Baby Jonah, the little baby I saw on Grammy's computer. Pray his boo boos get all better". Oh, to always have faith like a child!

Debra said...

I've been praying extra hard for you this week. Thanks to God you are all home together. I have no great advice for you, but am offering my prayers to God regularly. You are so strong and Jonah is stronger. God bless you from the west coast.

Kelly said...

I am praying for him now. I do hope that he has no internal blisters.

I am so thrilled to know y'all are home! I know it must feel so good to bring him home!

Enjoy this precious time with him....he will grow too fast! :)

Stephanie said...

my heart just broke thinking of the possibility of blisters in Jonah's throat. ughhhhh!
Praying this is not the case.

Kim (marygracesummons.blogspot.com) said...

I will continue to pray for sweet Jonah. He is so precious!
In Him,
Kim

Sara said...

I just want to add, mainly for others reading this who don't know much about EB, but blistering in the throat is completely different from blistering in the airway.

Blistering in the throat can cause swallowing issues and long term blistering can cause the throat to scar shut; while blistering in the airway can cause the trachea to scar/swell shut sending that person into respiratory arrest. The only way to save them is to have a tracheotomy performed, which is a tube in the neck that allows the person to breathe. Usually the scaring/swelling occurs over time and one blister usually doesn't cause someone to stop breathing, but everyone with EB is different.

Watts Family said...

There's no place like home! We all will continue to pray for you and your sweet boy, Jonah!

Many Blessings,

Amanda

Alison said...

So happy that you guys are settling in at home. I'm sure that is so much more comfortable for you and gives you some normalcy, especially after all you've been through thus far. Jonah sure has captured our hearts and our little family in San Diego continues to pray for yours.

Blessings in abundance,

Alison

Soukies said...

My son had reflux when he was an infant. My savior was a vibrating bouncer seat! He slept in that seat everynight because it kept him just upright enough to not do the choking gurgling noises he did when laying flat. I hope he gets some relief soon!

Keely said...

Our family is so glad to see Jonah is home!

Both of my boys had severe reflux and they were prescribed a liquid form of Zantac. My Doctor advised me to have it filled at a local Pharamacy that compounds their own prescriptions so that it had no flavor. I guess Zantac has a peppermint flavor added to it. The compounded version was tasteless and it seemed to be easier for them to take. My nephew took the flavored Zantac and had a really hard time with it. He hated taking it and my sis said she thought it made him fussier. (He was a preemie with a lot of medical complications.) I'm not sure if it would help Jonah, but it might be worth a try.

Also, we found that sleeping upright in a swing or the bouncer helped their reflux immensely. If they laid down flat in their cribs for naps or at night, they were in horrible pain. Any type of elevation is good for reflux. Pacifiers are great for it as well.

Take it easy. Being home alone all day with a new baby is tough work. Focus on one day at a time and give yourself breaks. Don't be afraid to take a walk or go get coffee when your husband comes home from work. Don't forget to take care of yourself during this time!

Wishing you the best-

Shari said...

I can only imagine the pain in his little throat. I am praying it heals soon and he gets relief. I continue to pray and think of you daily. So glad you are home!

dawn - ontario canada said...

I hope the dressing changes went well tonight...I was thinking about you guys extra hard around 8! Be strong little Jonah <3

Stephanie said...

Praying for Jonah tonight as I do every day!!!!

Laura A said...

Hi Patrice- I don't personally know you, but have been following your blog (a friend of mine has a link on her blog), and wanted to let you know I'm praying for you, Matt and Jonah. Jonah is a precious boy, and while it breaks my heart to see him suffer, it's so evident that God is already working in his little body, and also giving you the strength and peace to take care of him. I wish there was something more I could do to help, but since I'm in TX, I'll just continue to pray!

I'm so sorry about the blisters in his throat, and will pray that those resolve quickly and that the dressing changes will be as painless as possible.

Please know that you are loved and being prayed for - all over the country!

Laura A (McKinney, TX)

Laura said...

We'll be praying!

SW WI MOMMY

The Eadle Family said...

Praying!

Anonymous said...

I don't want to scare you but I do not think the high pitched sounds are good. You should call your doctor and ask about this. I understand that you do not want to take him back to the hospital but he may need to go there.
I sincerely hope everything is OK and I do pray everyday for you and Jonah.
Erma

RZ said...

oh, so glad you are home finally!!
will continue to pray for you all

Melissa said...

Poor guy...I know how bad a simple sore throat hurts...I can't even imagine what it would feel like to have a blister in your throat. I hope and pray that all the things he needs healed will be taken care of. As for the respiratory issues, you are mom, you are with him all the time, you know your child. If it gets to a point where you are really concerned, MAKE someone listen.

I hope you're not tired of hearing stories about when Bryson was a baby, but I tell them in case any part of our story helps, even a little. When Bry was born, after we brought him home from the hsptl, I noticed that breath-holding, too. I was worried and often stayed up all night to watch him breathe. I told the pediatrician's office, and they told me it was my imagination, that I was "a young, first-time, mom and I was stressing needlessly". Well....when he had his first surgery (3 weeks old), the nurses in the PICU noticed the same thing. He was diagnosed with Apnea, which is a sleep disorder where the person stops breathing in their sleep. (Snoring is also supposedly a symptom...though I've seen lots of people who snore and do NOT have Apnea.) For most people, they will self-start breathing again a few seconds later, for some it can be very dangerous. Since there really wasn't any way to tell (back then, don't know about now), they put him on a monitor at night that would emit a shrill alarm if he stopped breathing for more than a certain amount of time. They also did sleep studies...one of which documented a counted 60 episodes a night. Bryson outgrew this when he was about 3 1/2 years old, and while the alarms did go off all the time, he always self-started, too. (Thank you God!)

Anyway, I guess the moral of this rather long story is that there is a condition that causes them to hold their breath when they sleep, and if it's happening a lot or for longer than a few seconds and you become concerned about it, make someone listen to you...if one doctor won't, then find someone else who is familiar with Jonah who will. You are mom, and you know your child way better than the doctors...they may know his medical condition, but you know HIM.

Stay strong, hang in there, and know that you guys are loved and prayed for....

Anonymous said...

praying praying for you! Keep up the good work!

Lyn said...

I haven't commented yet, but I read every day. My family and I have been praying for my cousins baby (4 yo with autism) and for my lil guy (6 yo with diabetes, epilepsy and celiac *maybe*) we pray only for a complete healing for our boys if it is Gods will. I will add Jonah to the list. You're going wonderfully, I know how tedious this is, and I know how worth it is. But remember to take care of yourself too!

Jen said...

All of it sounds so overwhelming, but you seem to be doing so well. I am hoping that his little esophagus and trachea are ok. The breathing thing might be related to EB, but most newborns also have irregular breathing patterns as their lungs continue to mature. My son slept on my chest in the recliner for many a night after his birth, and I would panic when he'd gasp or pause for a long time between breaths. Our doctor reassured us that this is completely normal, so we'll hope that this is all that Jonah's dealing with!

Amy, queen of the world. said...

I'm just a lurker (that prays for your son every night!) that is de-lurking to say that all tiny babies are VERY noisy sleepers... it's the weirdest thing.. sounds like an old grandpa sleeping! hehe... and our pediatrician says that it's normal for a baby to take 2-3 second pauses like he's stopped breathing, and doesn't become a concern until it's about 10-15 seconds at a time. You're such a great mommy for worrying over every little detail, but it sounds like, all things considered, Jonah is doing FANTASTICALLY!

Anonymous said...

My daughter is 4 months old and also has reflux...she was acting as though she couldn't catch her breath and was gasping for air. That is actually how they diagnosed with reflux. I hope this helps. So glad youare home! Praying for Jonah and the family :)

mrsrubly said...

praise you Jesus~look at this sweet sweet lil boy~HOME~~wow exciting is this! the pics are great. i pray that the ENT appointment goes great and get answers to your questions. your son is just beautiful. i am so happy for you to be at home. you will soon find your own routine and let me tell ya, mom, it will get better! keep up the great work! your awesome...god bless you williams family.

Janet Caraker said...

I am so glad Jonah is home and improving! The transition to "home" is always exciting (read stressful!) when you bring home a new baby. A lot of his fussiness may just be due to the newness of his surroundings (sights, sounds, smells, etc.). I will continue to pray for little Jonah, you and Matt.

You are all loved by many, many people!

Janet Caraker (formerly known as Janet Horton)

~Alisa said...

I stumpled across your blog the other day and your family has not left my mind or heart since! I will continue to pray and keep checking in with you lovely little man! Thank you for taking the time to share your story!

Alisa (and 4 little ladies)
Kansas

Robin and Paul Cummings said...

Congratulations on bringing Jonah home. We pray that the Lord will give you the strength and knowledge to keep going for little Jonah. He needs you now than before. We are praying for the BEST. Be strong Jonah...Matt and Patrice-our hearts go out to you both.

Robin and Paul Cummings

Anonymous said...

I am not sure my last comment took--so, we're commenting again! Yay for you all. Patrice, what a great job you're doing! What a beautiful son and beautiful family. I'm praying for sunshine too, to make you feel refreshed, sing with the birds and light up your day with warmth and comfort. Bless you and Jonah and Matt! Always praying for you, Robin from TR and the gang!