Jonah finally slept well last night... the first time in a while, and I think he would have slept all night, but we got him up for a feeding. He went down around 9, went right back to sleep after his feeding, and slept until about 7:30 this morning. It's my night tonight, so we'll see how it goes. Unfortunately the six and a half hours of sleep I got last night didn't make up for many many days of sleep deprivation. I told some people today that, because he only eats when he sleeps, I don't get a break unless he goes down for a real nap. His little catnaps I spend shoving a bottle down his throat. And at least half the time, after he's finished eating, I go to lay him down, and his eyes pop open, and he's all done. But today he slept for two hours so that was great!
We took him to the doctor this morning because I was afraid he might have an ear infection. Since he hasn't been eating or sleeping well, I was getting a little worried, and then he started messing with his left ear the last couple days so I just wanted to be sure. But no ear infection. I guess he's just discovered his ears. He did get his first H1N1 shot but will have to have his follow-up shot in four weeks. I hate that we might have a hospitalization before he gets fully vaccinated.
Hospitalization... YUCK! Although there are countless benefits of the g-tube, and I'll probably think it was a great decision, the idea of another hospital stay, intubation, and surgery make me shudder. I spent all nap time today researching surgery tips, anesthesia tips, and g-tube info for EB kids. It's overwhelming... everything from simple things like having a pulse-ox (you remember what a disaster that was in the NICU, right?) and taking his blood pressure to the big things like intubation and surgery technique require major modifications. What if I don't mention something? What if a nurse comes in while I'm sleeping and handles him incorrectly? What if they insist on taking all his bandages off while they do surgery?
Answer: I will kill someone.
I'm not kidding. Let's just say I'm not still teaching high school for a reason. Someone was going to get hurt, and it wasn't going to be me. I have a lot of inner rage. What can I say? Mishandling Jonah brings out my inner Roseanne. And I kinda like it.
All of that to say that unless we have a miraculous turn around in the next week or so (he only took 16 oz today), we are getting the g-tube.
Sigh.
He did take an ounce of yogurt today AND an ounce of squash with cinnamon and OPENED HIS MOUTH for almost every bite. What a champ!
I keep saying things like, "No pressure Jonah, but if you don't start eating you are going to have to have a tube put down your throat and have surgery and be in the hospital and and have a feeding tube put in your belly and give your Mom a panic attack. But no pressure or anything."
My hair is falling out like crazy (I thought it was a post-pregnancy shed, but now I'm wondering if it's stress related), and Matt's getting gray hairs in his eyebrows.
We're going to be completely gray headed and/or bald by the time we're 29. Sexy.
(He's about to finish up answering his questions, so look for that post comin' up soon!)
Friday, October 23, 2009
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26 comments:
Praying for healing (and eating) for Jonah, and for God to give you peace with whatever He leads you to do for Jonah. Gos will protect Jonah if/when he does get the Gtube.
Hang in there, sister...we're praying for you in Texas! You know what they say...everything is bigger in Texas...and that includes prayers! =)
Eat all you can Jonah!! We are praying for your upcoming surgery!!!
Praying...that God would intervene in every way!
Matthew 11:28 (Amplified Bible) Come to Me, all you who labor and are heavy-laden and overburdened, and I will cause you to rest. I will ease and relieve and refresh your souls. Love you guys! Aimee
Come on Baby Jonut, keep on opening that precious little mouth, not only to laugh when Mommy zerbets you but also to nourish that little belly!
Patrice,
Please have your thyroid levels checked. Along with your stress symptoms, hair falling out is another symptom of an underactive thyroid. Happens a lot to women after child birth. I pray for your family every day.
Just read your 3 latest posts all at once - praying for you, Matt and Jonah.
Praying that Jonah eats well and that his eating has just been because he's not feeling that great and it will turn around now.
Praying for sleep for you and Matt.
Gray is the new blond! :)
Praying for all of you and the tough decisions ahead. I am so sorry that this has to cloud the joy you feel. You are such an amazing mommy. I know you will be a great advocate for sweet Jonah. Thanks for letting us know how to specifically pray.
PS My hair is also falling out...maybe we can be bald together :)
Just a quick suggestion....when I was under a lot of stress my hair also started falling out..I chalked it up to stress. Turned out that my thyroid levels were way off...once I got that under control, my hair stopped falling out. Hope Jonah eats up a storm, but if not..praying for a peaceful g-tube experience.
Hi Patrice - I've been thinking about you and Matt and sweet Jonah all day. Again, I so wish that I had a magic word or an I Dream of Jeannie head nod - I'd use it in an instant! But since I don't, I'll continue to pray for all three of you. God will give you the wisdom to make the right decision on the g-tube.
Lots of love and prayers from TX!
Laura
Hey, if all else fails, Bald is beautiful ;)
I know you and Matt have SO many details to think about over the next couple weeks as you come closer to a decision of inserting a g tube. If you do go that route, the nice thing is it changes the quality of life for everyone - not just Jonah. It eliminates all the frustration of trying to feed the baby, him getting all worked up etc. My sister always says that even though they were so scared to do this for my nephew, it has changed the quality of life for the whole family. They are so thankful they decided to finally do it after YEARS of trying to decide. Even having said this, your situation is different so don't let anyone make you feel like you should be doing on thing or the other. You and Matt know what's best for your Jonut :)
Oh my word, I just read Matt's post and then I read yours and laughed so much that my husband had to keep asking me what was going on. I'm not a "laugh out loud" kind of girl, but you 2 are great! I would totally want to be your friend in real life if I didn't live halfway across the country from you :)
Anyway, I've been saying lots of prayers for all of you for the past couple of days that Jonah will decide to eat like a champ. If that doesn't happen, then I've been praying for wisdom and peace for you as you have to take the next step and that the doctors and nurses will be perfectly capable of being sensitive to Jonah's special needs. Maybe you should have them read your blog ahead of time so they know that their lives are at stake if they mess with your boy :)
~Amy
Nothing makes you grow up faster than a sick child. We are their voice when faced with medical issues. You are right in doing all the research you can. Being educated is powerful. Gentle hugs & strong prayers for all of you.
Beckie in TN
Praying for your family.
We had a few "Rosanne" moments in the hospital with Tripp!! Those moments definitly got their attention!! Thinking of you and hoping everything goes well!
Praying for complete healing!
Michelle
Hey Patrice, don't feel like you have to publish this comment, but I wanted to tell you I've got something for you on my blog... a way to say "thanks" for sharing your story with all of us!
Lifting all of you, and especially the little J-man, up in prayer tonight. And our Jonah says "hi" to "the baby Jonah on the computer". :)
The Starrs in Colorado
Aww the grey and thinning hair is probably due to stress :-(
But hey, at least you can still make it into a joke.
Praying for you on the West Coast.
I hope that if Jonah does need a feeding tube, that it goes as smoothly as possible. I do know many parents who are so happy to have the nutrition struggle go away and enjoy the benefits of great nutrition.Uunfortunately you have the stress of the surgery prior to that. You and your family are in my thoughts and prayers.
Another Becca here!
I have Ehler-Danlos Syndrome, which shares a few issues with EB as it's also a collagen deficiency condition.
I'm 24 now and I got my PEG (G-tube) in February this year after almost 14 months of desperate struggle to maintain adequate nutrition, and the consequent horrors of near constant urinary tract infections and worsening trouble with my guts, kidneys and skin.
I've had a few surgeries now, and the PEG op was by far the easiest. My incision was so small and neat that it didn't bleed at all post-op and barely needed dressing within days - just a tiny piece of foam to cut down friction. My pump and water/feed bottles fit in a very ordinary rucksack and my PAs (personal care assistants I think you'd know them as) learnt to handle everything in days. I can say without hesitation that it's the single best decision I've made as regards my health.
I wanted to offer to answer any questions you guys have it about all this, and I hope that my experience might help others facing similar decisions.
Praying for Jonah to eat and gain weight!!
Thanks to Matt for the Q&A.
Just checking in for a Jonah update. Glad that he slept and ate well for you. I hope it keeps up.
And I think we all have to bring out our "inner Roseanne" when it is for the well being of our children. You are Jonah voice.
Continuing to pray...
hey we all have our inner Roseanne just waiting for a chance to strike. and when it comes to Jonah, don't be worried about letting her out. Jonah needs a parent who is not going to be afraid to demand the care he deserves. so i applaud you and your inner Roseanne. and rest in the fact that God put her there for Jonahs sake.
Hi Patrice,
I just wanted to echo what several others have already said - get your thyroid checked. My daughter was between 4 and 6 months when mine dropped really low. It will make your hair fall out, and you will be extremely exhausted and have trouble concentrating. It is a simple blood test to get it checked. You need all the energy you can get. Praying for Jonah here in Texas.
With love,
Shannon
Good for you Patrice. If you don't advocate and protect your child, who will? You have to be his voice and I think you do a great job, I would be doing the same things! You mess with my kids you mess with me!
Just in case your doctor or someone else hasn't mentioned it already, wanted to let you know that messing with ears went right along with teething with both of my kids (sometimes ear infection, but usually just ear ACHE from close proximity).
Always praying for your family - healing, decisions, peace... you name it.
Melanie (Warner) Peden
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