The PICC line attempt did not work last night. I had prayed over Jonah before leaving and cried out to God all the way home that if it was not a good thing, it wouldn't work out. And it didn't work out. I felt really nervous about it, and all I kept thinking was, "Trust your instincts." Last night was probably the most scared I've been since those first couple days when we didn't know what was going on. The neonatologists think the umbilical line will be okay for a while longer (they can have them for up to 30 days), but pediatric surgery is wanting to put in a broviac - a central line in his chest. For this, he would have to be completely sedated, paralyzed and intubated. To me, this is a last resort, and I've said no to it until the neonatologists get to the point where they think it's necessary too. I feel like we're just on the verge of him consistently eating - I just want to give it a couple more days if possible.
The biggest development today is that they want to begin doing Jonah's dressing changes in the evenings - around 7 or 8 pm. They hope that, in doing this, he can be sedated more over night and more alert during the day, so that he can eat. I'm pretty excited about that idea as it should make his feeding go well and will give me more eye snuggle time during the day. Part of doing it during the day is that the occupational therapist comes and works with him, doing exercises for his hands and feet to keep them functional. He's starting to pull in his thumbs a little from being bandaged all the time, and he's starting to keep his feet pulled up a certain way. When they start doing the changes at night, I'll probably be taking over the OT's role, since they are not on call 24 hours like the others.
Today's shout-out:
- To beautiful, wonderful, diligent Dr. Heather Furlong for agreeing to be Jonah's primary doctor. (Being at a teaching hospital, the doctors rotate every two weeks, and I was feeling uneasy about the turnover). I trust her completely, love the way she seeks out answers, takes suggestions, but makes her own final decisions based on HER instincts. I'm so glad to have her on Jonah's case. I feel a huge weight lifted off my own shoulders, knowing that there will be an ultimate somebody that can make a final decision when I can't. I have just felt pulled in different directions, getting different advice from a lot of different places - I just need a constant. Thanks, Dr. Heather for being our constant here at the hospital. Jonah, Matt, and I LOVE you.
Please continue to pray that Jonah will eat. We are only days away from a broviac or g-tube or something more invasive if he doesn't start consistently eating on his own. Plus, there are some risks with the umbilical line, so we need to get that thing out as soon as possible.
Pray for wisdom and discernment for the doctors, and that God will heal Jonah through their hands and modern medicine.
Pray for peace for me and Matt. Matt is coming out after work today (only to the waiting room) to be with me and will be staying at home from here on out. He's not 100%, but these last couple days have been way too heavy for me to bear without him. Please pray that I will resist getting whatever he has, and thank you for praying for his health - he's feeling better!
39 comments:
Hugs and prayers to your family
still praying for you and so thankful that matt is feeling better and will able to be at the hospital with you later today!
thank you for the frequent posts - it is great to get daily updates on your little one's progress.
Such a great idea to do the dressing changes/sedations in the evening. Hopefully it will be an answer to our prayers to get Jonah to eat more during the day. Feel the strength of our Lord upon you now and forever.
Patrice, you are doing a great job. Keep trusting your motherly instincts and you will not go wrong. The Lord will lead you in the right direction because of your faith in Him and your love for Jonah. I pray for your specific requests daily and hope that you find peace and comfort and Jonah keeps pressing forward in the right direction. I think the change of time with the dressings makes plenty of sense and hope that this works out better for Jonah and you both. We know the Lord does not give us more than we can bear and this shows that you are such a strong individual. Praying for you and sending love from my heart to yours, Matt's and Jonah's.
so thankful to hear that an OT has been called in. I work with OTs in the school setting and they can give a great plan for parents to carry out. Jonah is blessed to have such a wonderful team on his side - especially his mom and dad and God. Prayers are going up!
Praying that baby Jonah will continue to eat consistently, so no more tubes. Always trust your motherly instincts. As a new mama myself to an 18 month old, instincts are usually right on and God will guide you in the right direction. So glad to hear Matt is feeling better and can be with you tonite. Keeping you all in my prayers. God is so good!!
Praying for your sweet family. Glad you will get to have Matt there tonight.
Your strength and courage amaze me. Jonah is so very blessed you are his mommy and advocate. Praying for his complete healing everyday!
God is bigger than EB and knows your every care and concern. He will perfect all that concerns you.
Jennifer
Brooklyn, MI
So thankful you have gotten a wonderful pediatrician. Evening dressing changes sound fantastic. Not only because of the medication/sedation, but because the changes themselves are so physically draining for Jonah. Praying that Matt feels better soon.
Patrice - I know you have been overwhelmed with suggestions, but I had to ask the NICU docs that I work with if they knew of any resources. One mentioned that he knew of research at University of Minnesota. http://blog.lib.umn.edu/bmt/ebtrial/
May be more useful at a later date, but just wanted to pass along. Our docs (Medical College of Virginia) also send along their best wishes to all of you.
We are all thinking and praying for you, and glad to know that everyone is being so flexible and thinking outside of the box for his care.
He's beautiful Patrice and Matt. I continue to pray over your son.~Darlene
Oh, thank the Lord for semi-good news! I will be praying specifically for the things you mentioned.
I am not sure I agree with most of the comments that say you are a strong woman- you can do this. NO MOTHER is strong enough for what you are dealing with. BUT, in our weakness HE IS STRONG and He is being made strong through you. Rely on His strength, not your own. He will give you wisdom, strength, perseverance, and the ability to withstand this.
Oh, I believe the Promised Land is right around the corner. Hang in there. You are an AMAZING mom. Jonah is so blessed.
Thank you for all your updates. May God lead You to the rock that is higher than the turbulent waters and give you rest.
"From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I."
Ps 61:2
I have been reading your blog since Jonah was born. I check 2-3 times a day, praying to read you got an awesome smile from your baby, or good news from the doctors. You continue to amaze me with your strength. Everytime I look at one of my children I pray for your family. When you get good news I do a thank you Jesus dance, and when its bad news I cry. I am praying for strength for you and Matt, and of course your prayer list, but also a ray of hope everyday for you, be it a smile, or a touch, look for these. He's giving them to you! Peace be with you!
Patrice, Matt, and Jonah - I praise God for every bit of positive information that you pass on to us. Thank you for your specific prayer requests, as they help me direct my petitions to God. I am amazed at the number of comments you receive from all over the world. The Williams Family is certainly blessed to have so many people praying for you.
I have the pleasure of keeping my great--niece, Madison three days a week, and our little friend Mason one day. To see both of these healthy babies is a blessing. I also feel blessed to be a part of your Pinedale family. Know for sure that you are all being lifted up for strength, healing, wisdom, peace, and your other needs.
Also know that I am usually available to run any errands that you may need, so feel free to call on me and I will do what I can.
May God continue to bless you and meet your needs.
Sandy Widener
So excited to hear you were able to attempt to breastfeed! That will be some wonderful bonding time for you both. I pray that it will continue and he will become stronger and learn quickly to latch on. Trust the "momma heart" that God has given you, and you will not go wrong! Praying continuous healing and peace is Jesus name!
Brandi Fugate
I am so glad you have someone you really trust to help make those hard decisions for Jonah. So happy Matt is feeling better. I will keep praying for full healing so he can be with you and Jonah.
I am so glad Matt will be able to be with you from now on. From experience with 2 EB babies I would never have been able to do it on my own. Even being a strong Christian God gave me my husband for a reason just like he gave you yours. My husband and I pray for your family many times a day. We know the decisions you have to make are hard. Just never second guess yourselves. You know what is best for Jonah. I know how you felt yesterday when you were alone with Jonah. The choking thing happened to me with our first Anthony. But you will learn in an emergency situation you so what what you have to even though you know it will probably cause some harm. It is very hard being a mom and having to make the best decision when they are all bad choices to pick from. We have come to love your family and we have never met you. From one EB mom to another you are doing a great job being the advocate for Jonah. You are doing what you think is best and praying to God about what is best. You know God is ultimately in control. Just know we pray for all of you for wisdom on decision making, strength, peace and comfort. Again if you ever to to talk or whatever call or email. I left my info on another post but my email is nyesda@hotmail.com.
Tashia
i just said a prayer that jonah would start eating more consistently
thank you so much for the update. I have thought about little Jonah all day since you update last night. Prayers coming your way!
still praying!
Dear Patrice and Matt, I am just thrilled to hear that you are attempting breast feeding. I had no idea that that was an option. I was just so happy when I learned that you were pumping for him. Being an old pro and strong proponent of breast feeding, I hope that you will be patient with him. He's a smart boy and will figure it out. The most important thing is that he is getting breast milk. You're a good mom. I give half the credit for successful breastfeeding to a good dad who is supportive. So yeah to both of you. I pray continuouly and love your daily updates. Time for more pix. Barbara
hugs to you & jonah from charlotte! you are such a strong mom. proud of you!
We are praying EVERYDAY, several times a day for all of you. My 4 year old son prays for "Baby Nonah" to det bedder.":)
This place your are in is so exhausting, emotional & difficult in so many ways. My love to all of you.
I also wanted to add that I fought and fought not to have a G-tube placed in our sweet baby girl. I just didn't want to go that route. I'm glad I fought it because if I hadn't I would have never know what her capabilities were. Unfortunately, 2 weeks ago she had to have a G-tube placed (along with some other procedures as well). It was difficult for me, but now I'm sure it is the right decision for her. I can tell it is helping her grow and now I can allow her to eat what she is able to and rest when she needs to. Just for what it is worth. Praying for you as you make these tough decisions.
I was praying the same as you about the line in the neck! If it wasn't supposed to that it wouldn't happen. I thought about it all day and just got home to find out that it didn't happen. If they begin doing the bandages in the evenings, then maybe Dad can be there too!
Dana Zucha
We will pray that Jonah doesn't have to get the invasive tube--come on little guy, EAT! Praying for you guys daily!
I have been a follower for the past week. I love reading about your precious baby boy. I lost my 18 month old this past october to a rare disease that needed a transplant - which failed. Basically I wanted to let you know that she had a central PICC line placed in her chest - I know it sounds horribly invasive - but it was a blessing to have! The procedure is fairly quick and very easy to maintain, even once the child is home - if need be. I know it's the last resort, but even then know that it isn't too bad, its very managable.
Many prayers & hugs coming your way, I love reading your daily updates on baby Jonah.
Laura
You are so super busy I hate to bother you. I have been praying every day many times a day for you, Jonah and your husband. I just want to send a link your way that I have come into contact with. Maybe some of these names can be contacted for further advice if you haven't already heard of them. They seem to pop up first in searches for EB and have read a lot of excellent reviews.
http://www.cincinnatichildrens.org/svc/alpha/e/epidermolysis-bullosa/default.htm
Praying for you both and praying for a miracle for your sweet baby boy. I check on your blog for updates on Jonah daily. He is in the best hands..God's hands. I know God is with you all every step of the way.
Blessings,
Elizabeth
Thoughts and prayers to your family from a fellow Pirate. I myself have a 4 month old and I cannot imagine the battle you all are fighting. Your little man is a warrior!!!
Kim
Sanford, NC
Yay for Jonah taking his entire 50 cc bottle this morning! That makes sense to sedate him and change his dressings during the evening hours. Praying that Jonah continues to finish his bottles. Happy to hear that you will be seeing Matt today, and glad to hear he is feeling better. You both are wonderful parents who are doing everything possible for their beautiful little boy. Stay strong, stay focused, and "trust your instincts."
Gail
Annapolis, MD
I found your blog through another one and have been praying daily for your sweet little boy. I actually just found this on the internet and wasn't sure if you knew about it or if it could be helpful to you in regards to Jonah's feedings:
While"breast is best" for most babies, breast feeding presents a special challenge for infants with EB. Infants with blisters and lesions in the mouth may have difficulty nursing or sucking from a regular baby bottle. Mothers may decide to provide expressed breast milk to their infants. The Haberman feeder (http://www.medela.com) is a cleft palate nipple which incorporates a valve that facilitates easy delivery of the formula without the need to suck hard. This works well for babies with a fragile oral mucosa.
Not sure if it has been tried or can help. I will keep praying that he starts taking his feeds to that no invasive measures are taken. Glad to hear that your husband was able to be with you today, it must have been so hard to be alone for a couple of day! Hugs :)
Ashley in Phoenix
ainsley is sitting on my bed and she saw a picture of jonah on my phone and asked who it was.
i told her it was aunt patrice's baby and she said "oh. jonut."
Thank you so much for continuing to share your story....we are still praying for all of you!
I haven't been through anything like what you are going through...but I do know that as a new mommy you experience a whirlwind of emotions (even with a completely normal baby). You are doing a fantastic job, Jonah is beyond blessed to have such a wonderful mother.
I am an SLP. From what I have read, you've got some great instincts about feeding. You are definitely right that is going to be more difficult to teach your baby to eat orally with nutrition coming from a tube. It sounds like you have some time to experiment with oral feeding without having a tube right now. Lots of babies have ups and downs with feeding, even when they are completely healthy. Just keep at it...it sounds like you're already doing a fantastic job. There is a learning curve for all babies to learn how to feed...whether it is from a bottle or from the breast, so enjoy every little triumph!
Jonah, Patrice and Matt...
I have prayed for you regularly in the past year, and recently, my prayers have felt more urgent and immediate. Then, when I saw Requel at a meeting this afternoon, she shared with me the joy of Jonah's birth along with the heartbreak of his condition. She shared with me your blog address and I have spent the past hour reading about the miracle of Jonah's birth and about your time with him in the past two weeks...happy birthday tomorrow, Jonah! I want to let you know that I will continued my prayers for you all with renewed fervor. I pray that God continues to provide daily small miracles and that you are able to find peace through Him. Thank you for sharing pictures of Jonah with us...he is a precious gift from God. I have shared your story with my family and they will be praying for you as well.
Patrice-just remember that when you are weak, God is strong...He will take care of Jonah! Trust your instincts...you are still constantly in my prayers.
love you,
nicole rawley
Patrice... thanks for always posting a detailed prayer list! Praying for you always... hang in there, Mama!
We are praying for your family and your beautiful baby boy here in Alabama.
We serve a God who is so awesome and all knowing that He knows the moment that Jonah will be healed. He already knows - we just have to trust and have faith. And right now I'm praising Him for what he's going to do for Jonah. He's in control - what a great feeling!
You mentioned an OT. With so much on your mind, try to find out if a speech pathologist is available for consultation about the feeding.
Sending love and prayers your way!
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