Thu 1 Mar 2007
Girls Behaving Badly
Posted by Jane under Updates
[26] Comments
I’ve had a rough day today, so has Ramona. I guess I had it in my head that bringing Ramona home was going to be some kind of a Utopia. On the plus side, not driving back and forth is nice. On the minus side, everything else.
No 24-hour nurse to feed, change and bathe her, it’s all us. No hospital volunteers to rock her to sleep, it’s all us. No pulse-ox monitor to let us know if she’s desatting, we just have to take our best guess. Oh, and my goal of having all this together time as a family has been slightly hampered by the fact that Simon cannot be allowed anywhere near Ramona because of his non-stop desire to yank tubes out of her face, bang things on her oxygen generator and push her feeding pump around. I’m finding it hard to picture being able to take care of both my babies or even spend a significant amount of time with them both each day.
So I’m angry today. Really, really angry. It’s funny, I haven’t felt mad that Ramona is sick, mad that she wasn’t diagnosed sooner or mad that we have no idea what her long-term prognosis will be. Those things have made me feel dread, made me feel regret, made me feel overwhelmed. Today is the first day I’ve just felt really angry.
Now that we’ve beat the odds and made it home, I’m ready for a break that I’m just not gonna get. We managed to give her the 3:00 feeding, it took 2 hours to get it done and the meds and another hour to settle her down to sleep. Well she eats every three hours! That doesn’t leave a lot of time for Mommy-Simon time. And that every three hours? It’s round the clock. Right now I just can’t believe the hospital would send us home with such a big job.
But I know it’s not their fault. I know it’s not anybody’s fault. It’s just the way it is. So many folks have generously offered to take Simon off our hands for awhile. An afternoon, an overnight, a week. I just don’t think he should pay the price for all of this and get shipped off, away from his home and family. There doesn’t seem to be a good solution.
So I’m angry and snapping at everyone, mostly Andy and my mother, who have done nothing but be completely lovely to me through all of this. And Ramona hasn’t been an angel today either. Home must now be new to her I think. She just can’t settle down. She’s been fussing, crying, fidgeting for most of the day and evening. We haven’t been able to put her down for more than about 10 minutes.
I know that all of this will get better. That we’ll get smarter about the way we care for her. That she’ll most likely settle down and start sleeping better. That Simon will learn to control his cord lust. But right now I’m about as stressed and overwhelmed as I can ever remember being.
Thanks for listening to me complain,
Jane.
I’m sorry that this adjustment is so hard for you, but you have to think, things can only get better and they will! Even though I’m sure you guys want to have a signifigant amount of time to adjust and have your home be in some peace in quiet for sometime, this weekend I can come over and babysit on saturday morning, sunday afternoon and night and anytime on monday. If you’d like someone to come help out with Simon, but keep him at home, I’d be happy to, but at the same time I totally get that you guys need some intense family time now. I’m always thinking of you guys! I love you all and I’m hoping that things get better, which they will!!
Eva
Hey Jane et al — don’t beat yourselves up ’cause you’re tired,
frustrated, impatient with whomever is closest, angry, etc. etc. — all that comes with being parents. However! You’re dealing
with the ultimate in parenting. Your strength, spirit, love,
commitment, — are inspirational — your “family” is with you
in heart, love, and prayers. Molly Cummins’ mom & dad
Ross & Mary Cavanagh
Jane and Andy-
Anger is such a natural and legitimate expression for what you’ve faced and will face. It also sounds like a step in the grieving process you’ve so tenderly shared. Time will allow you both the opportunity to resolve the range of feelings that surface. Like you told little Ramona, know when to work and know when to rest. We’re here to lighten your load. Praying that you give yourself a lot of grace and for Ramona to ease back into life as she knew best.
Philippians 4:5-7
The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus
For a touch a levity. Since Ramona is such a rock star why not quote from a band that was at the genesis of the punk rock movement and shares many of the same letters in Ramona’s name.. The Ramones.
Believe In Miracles
I used to be on an endless run.
Believe in miracles ’cause I’m one.
I have been blessed with the power to survive.
Welcome home Ramona Mae Deitrich
Dear Jane – Be gentle with yourself. You are spent. As a dear friend told me, years ago, you are juggling many china plates, trying to keep them all in the air, trying to not drop a one. I agree with Eva: things will get better, but in the meantime, take it easy. Looking forward to being with you & helping you, soon!
Dear Simon
Up to now I’ve only written to Ramona but since mom and her laptop are at home more often I thought I would write you a note too.
Well, first off, let me just commend you on your fascination with all things medical/mechanical. I think it bodes of some very cool vocation later in life.
I guess to you, Ramona looks pretty interesting. Mom and Dad took her off somewhere for a couple of weeks and now they brought her back with a lot of brand new stuff that you can’t play with. Sorry, pal…shades of things to come.
You see, my daughter Riley has brothers too and whenever they try to touch “her stuff” she wails like a banshee…it is NOT pretty. So, a word to the wise, this is what lies ahead. So when the Polly Pockets enter her room or the CD’s by the latest hearthrob or chick band you will probably not be allowed to touch that stuff either…that’s just the way things are set up in this world, Simon. Also, when she starts wearing a “training bra” you are NOT allowed to tell all your friends, ok?
Just keep being a good big brother to Ramona and pretty soon I know you will be able to grab her nose and pull her hair again with ease. Be wary though, I have a feeling she’ll grab your nose right back!
hope to see you this weekend when I come to Chicago, Simon
sincerely
Miss Angela
Jane,
So many Mom’s have said to me, “I remember leaving the hospital with our newborn and thinking, You are letting us take him/her home?” Seeing as they had no idea what to do once they got there.
You my dear have had more of that emotion than most. Simon – where you became a Mom overnight, without the 9 month ramp up. You did that with Grace, Humility, and Humor.
Bringing home Ramona the first time to a house where now you were a Mom of two babies. There is a reason why our bodies can’t have kids that close together. You have been given blessings with major challenges. I can’t imagine anyone my friend who could do it better than you have.
This does not mean you have to do it all without crying out for help, in anger sometimes and in joy sometimes. It is just one big heaping pile of extremes.
Sue is right, you are spent. You have been operating on way to little sleep for a long time. I know there are lots of things you can’t receive help on because of Ramona’s medical needs but we all want to help in every way we can for the long hall. I am happy to listen to you vent, cry with you, pray with you, distract you, bring you chocolate whatever – whenever. I love that you are honest about your emotions and are not afraid to share them. You are very real and that is awesome.
The strength you have been given to get this far will continue to be showered over you by God. We will continue to pray and ask God for rest and strength and peace for all of you.
Love you all,
Jen
I am sorry that you are feeling all of the pressures and I do nknow that it is a lot of work (not that you mind doing any of it) worriesome, draining and scary. Izabell is almost one now, last May she came home from the hospital after her 6 week stay and was on ng tubes also. You are in our thoughts and prayers. If you need help ask for it! reach out and ask your husband to make her milk or to pull her meds while you get a moment to rest and cuddle with your son. Don’t feel bad resting or having someone help. You deserve the help as does your entire family:) do you think she is handing the food volume? when izzy came home the fist time on 3 hrs feed she was fussier and it was hard. she would spit up alot and had a evry hard time. She went back and they changed her feeds to 24hrs an oz an hour of high calorie but her tummy handled it better than a large amount feed to her so quickly. If you think she is having troubkle with the reflex or feedings call the doctors and let them know. do you have a speech therepist to help her learn how to eat? they specailize in feeding problems.
sorry about all the typos I have a almost 12 mth old crawling this way:) sometimes she helps me type:)
wyndi mom to izabell
http://www.allthingsizzy.blogspot.com
Jane
I remember it being awfully hard when Wren came home at first. I too had thought it would be better home but I was up half the night doing tube feeds and didn’t get to sleep during the day because Frost was always around. He’s 5.
I did find tube feeds became a lot easier after a few days and pretty soon Josh could do a few at night alone and I could get a good block of sleep. I don’t know how fast they have you run it but we did 80ml in 30 minutes. Also, we found it easier to prepare a big bag and have it in the fridge so we didnt’ need to prime the pump each time. Perhaps you have a different setup but that saved us time.
It does get easier every day. They say that the time in the hospital often messes with babies sleep because they don’t have strong day/night signals there – they are messed with at all hours – so they can get day/night reversal. When she adjusts to the new routine you will all feel better.
Also, your concern about desatting is totally normal. I used to look at Wren and worry when he fussed because I remember how his BP rose and his heartrate (always high) went skyhigh. It took me a good month before I stopped thinking what the machine would say and trusting my gut.
The time in hospital messes with your instincts and confidence and it takes time to feel you are the one in charge again.
Each day gets easier.
Hi-
We’ve never met, and probably never will this side of heaven, but I’m praying for you and your family. I learned of you from a prayer request list that is sent to me. When I’ve felt overwhelmed, these verses have been a great comfort to me;
Psalm 62:1-2
“My soul finds rest in God alone;
my salvation comes from Him.
He alone is my rock and my salvation;
He is my fortress, and I will never be shaken.”
As you find your rest in Him, may you never be shaken. My prayers will be with you and for you. Blessings- Nancy
Hey Jane,
I think you have every right to feel the way you do, and in keeping to your true self, you’re expressing it. And even though you know that it will get better, it’s still really really hard. So go ahead, vent away! We’re here for you.
p.s.
I also think Simon would be the first to tell you that, as his mommy, you’re doing a “gah ja” (good job)
Hi Jane,
I know it doesn’t make you feel any better, but what you are feeling right now is normal. It’s ok to be angry about this situation. And the first day home from the hospital is the hardest. We brought our son Drew home after ten weeks in the NICU. I couldn’t believe that after having a nurse take care of him 24 hours a day that I was suppose to bring him home and try to sleep at night. He had a g-tube and the pump we were sent home with didn’t work. We were late on starting his feeds and giving him his meds that first night. I jumped to the foot of the bed with every sound he made. It really does get a little easier with each passing day. Hang in there. We’re praying for you.
jane – i’m continuously impressed/inspired by your handling of all-things-ramona/simon these weeks/months. and i’ve kinda been wondering when a more “i’m angry and snapping at everyone” blog was coming. i wasn’t hoping for it, but i did wonder. my mom relays this old Jewish folktale (i think its a folktale anyway – apologies in advance to anyone reading this who knows this story, and its roots, better). The story, in brief, is about a King looking for a ring that will make a happy man sad and a sad man happy. Ultimately, a wise man finds such a ring that says on it, “This too shall pass.” I like this saying because it acknowledges the reality of life’s ups and downs. It acknowledges like the many experienced mommies who have posted their wisdom above, that yes, your current beyond-frustration will pass. But as will all things real, happy moments will also pass, and there will be more times of angry and snappy – and snappy/angry is okay. You and Andy have clearly had more than your fair share of beyond-frustrated moments these days, and so I wish for THOSE days to pass and that the family knows many more of the happy-moments very soon. One certain stability in all these highs and lows is the clear availability of your friends and family riding this roller coaster right along side you.
Jane,
I can’t imagine how hard it must be for you, Andy, Simon and Mona Mae. If we can do anything for you, even being so far away, please don’t be afraid to ask. Yuo are always in my prayers. Things will work out.
Love A Rose
Jane,
My sincere prayers are with you. My you know God’s grace in a new way. I pray that he carries you on eagle’s wings.
Being a mom of twins I do understand taking care of two babies at one time…but I truly cant imagine the challenges you have right now. You are a person who is good at keeping several balls in the air. I pray that you find balance and that you will continue to ask for help.
Blessings to you,
Nicole
Anger. Seems to be the theme this week in my life as well. I threw a box of kleenex at my therapist! So,go ahead Jane. Be angry. “you’ve got to feel to heal” or some crap like that. Basically, i just want you to know that i support you in being wherever you are, feeling whatever you feel, and i love you for who you are on any given day.
Megan
Megan: That’s awesome; I wish I’d been there to see that.
Jane & Andy: We want to help! Love, Toby & Rebekah
Janey-jane;
I’ve always been in such a big rush to get the babies home from the hospital after I have them. I think I spent four hours in with Maggie. I just hate all the poking and prodding and measuring and noises. But then you get home and you have to do everything! And do all of the worrying yourself. I can’t imagine how you guys are doing it with all instruments with names I can’t pronounce. Wow. I’m so proud of you. I hope you’ve got lots of chocolate stashed somewhere. That Simon doesn’t know about.
You’re right. It sucks and just plain isn’t right. It’s more than a person should be asked to bear.
Thanks for being so straight with the lot of us – strangers and all. I hope it helps to vent.
For me, I’m so relieved when I remember that as mad, ugly and black as we get and no matter how much we rail and scream, Jesus loves us still.
yes, this all sounds so very hard. Anger is a good thing to get out of your system. I continue to pray and will pray for you all to get some rest, for Ramona to settle a bit. I am glad you have an outlet here to let out your anger and frustration. It does sound like a CRAZY amount of work!!! Oh Jane and all, hang in there!!!
Jane: I feel you right through my computer screen. I just want to come over and give you an extra pair of hands and a moment to rest. If I could come over and give you some help, please let me know. I don’t know all the rules around other people’s germs being around Ramona, but if I can help, I’d love to. I’m fairly phobic about calling at an inopportune time, but if I don’t hear from you, I’ll get over it and give you a call. Love to you – Dina
Jane,
Thanks for being real. This job you have before you is beyond my comprehension! I think you’re handling it a lot better than I would…praying for you.
Anyone have a brick wall and empty beer bottles that Jane can throw at it? I find this extremely therapeutic. One of your peeps dying to help out would be more than happy to clean up the mess. …the bottles don’t have to be empty but why waste a good thing…
praying for you, jane. praying for all of you.
Hi Jane,
This is Julie’s friend Jill again. I have continued to follow Ramona’s progress and a homecoming really is incredible news!! I was reading this entry you wrote and thought a number of things. I have re-written this several times now and it never seems to come out right. I will just say that I am so happy for you all that Ramona is home. She is with her family. That is incredible. What a strong little girl. She got that strength from someone!! It had been made clear to me through reading your messages that it must have come from you (at least partly from you). Your strength with prevail. I can tell you are a wonderful mother. Seeing all that you are doing for Ramona with become a lesson for Simon. Kids learn what they live. Though it may seem like you are doing so much for Ramona and not enough for Simon right now, some day Simon will look at you and understand how important that was; learning by your example. The Proverbs of Solomon says:
(22:6) Train up a child in the way he should go: and when he is old, he will not depart from it.
Though this isn’t necessarily a “training” session, it is surely a VERY valuable life lesson that will never be forgotten.
Praying for continued strength for you and your family.
Jill