Sleepless in Seatle


#1

Okay, I’m not in Seatel, But, it’s been several weeks since I’ve had a full nights sleep - if not a couple of months now. I feel like I’m back in basic training because of the physical, mental and spiritual challenges associated with lack of sleep. I’ve been struggling to hide my exhaustion at home, church and work, but lack of sleep is adversely affecting everything now. But it’s been several weeks since we’ve had a good night’s sleep. This has been a recurring problem since DD’s birth.

DD was born with Cutis Marmorata Telangiectatica Congenita (CMTC). CMTC is problematic enough by itself. But she has a few different types of vascular malformations that cover her entire right leg and private areas. Problems include abscessing tissue, ultimately leading to bleeding. The main problem is the location of the abscessing tissue. It’s particularly uncomfortable if not painful when it begins to peel leading to infections. The doctor told us not to clean diapers really well because it makes it worse, but rather just clean lightly and put globs of Zinc Oxide cream over the entire area. It requires continuous care and easily flares up unexpectedly for many reasons. She’s terrified of bowl movements. Other symptoms include cysts on her ovaries and kidneys requiring annual monitoring. Bluntly, it encompasses all of her private areas. Top this off with eczema and you have a child with a lot of tissue issues. The doctor’s says that they can do something about it later on when she’s older. I have a feeling the fix will be skin graphs.

Well all of this causes a great deal of discomfort and pain so she wakes up throughout the night crying for help. So we seem incoherent and snappy from lack of sleep. Sleep deprivation doesn’t work well with me. DW is also as exhausted– if not worse. DW takes care of her mostly because she works from home and can fake sanity better than me at work where I have to face people. The tempers flare when we’re so tired and stressed. But we’re much more civil than those couples that just don’t get along. She’s my sweetheart. Leaving DD in a nursery always gets lots of negative attention from people suspecting neglect. Some think it’s a bad diaper rash in need of care. Talk about judgmental eyes from well intentioned people. We always leave extensive information with people about her condition first so they do not panic and second so they know it is normal for DD.


#2

WOW! So sorry! and Howdy from a fellow “Texan”.

Shift work? And I hate to suggest separate beds… But it’s important you two get your sleep… I’m being somewhat hypocritical since I haven’t had a good nights sleep in years. But that’s me and not you.

Have you seen a doctor about help? I mean with your sleep? Pills never really worked for me. But maybe with different sleeping arraingement

You have an heavy cross to bear… I’ll add you to my prayers. And congrats on returning to the Church!


#3

I am so very sorry for all you are dealing with. Would it be possible for you to hire a night nanny a couple of days per week so that you could get some sleep? Of do you have any family that would volunteer a night per week to at least take the strain off?

My DH and I aren’t dealing with such substantial health issues as you are but when we have sick ones or an uncooperative sleeper sometimes in the evenings we will tag team and let one of us get a nap before dinner which helps some.

I wish I could be of more help. Know that you and your baby will be in our prayers!


#4

Wow… what a difficult situation… I’m so sorry.

I’d consider a different sleeping arrangement… sleeping on the other side of the house where you could get better rest, maybe?
Have you talked to your doctor about medication that may help… even over-the-counter ones exist and may help keep you in a sounder sleep so that the nighttime noise doesn’t wake you as often.

God bless you through your struggles… you’ll be in my prayers.


#5

First - prayers!

Some ideas - when you come home from work, perhaps you could take charge of DD for a couple of hours while DW takes a nap.

Then, try tag-team sleeping. If you need to be in separate rooms to get quality rest, try that. Try earplugs. If you can each get some good quality rest you will both be better parents.

For those who are looking askance at you in the Parish Nursery - have you sat down and discussed your DD’s condition with the person in charge of the nursrey? That will make sure they are aware of her needs.


#6

Perhaps you could explore strategies to help your daughter sleep through the night so that you can sleep as well? I know that’s simple to say and hard to do.

Or, have one of you wake up every couple of hours to check on her, and change diapers or whatever before it becomes unbearable. Maybe one of you sleep with her to help her sleep more soundly?


#7

Hello Sleepless from Sleepless in South Wales!
My DS is not a sleeper at all. What “works” for us is dh sleeping the other side of the house. That way we are not both completely wrecked all day. I can nap in the day, wheras he must go to work. I do sometimes wonder whether we should share a bed for apperances sake, but this works best for us.
I feel you on the sleep deprivation. I was only wishing the other day for a pill to take, you know.
So whatever works for you, be it shifts or whatever.
Love.x


#8

My oldest child was diagnosed with a life threatening disorder at 2 mos old. He required monitors with alarms when ever he slept. I don’t think I slept more than an hour at a time for a couple months. Then my ex and I decided that I would sleep the first half the night and he would sleep the second half the night just to get 4 hours at one time. We did this for over a year with our son.

It isn’t a permanent solution, but it really helped the sanity level that was gone from no sleep. When he was in the hospital for tests at 6 mos, I couldn’t believe how much sleep I got… and I slept in the room with him! It was just knowing that the alarms went off at the nurses station and they would respond that really helped.

I also remember us catching naps… when I got home from work I would take baby for 2 hours then after I served dinner, I got a 2 hour nap. Naps less than an hour or more than 2 hours are pretty useless though because you can’t sleep right when you need to.


#9

newbet
I already sleep in a recliner in the living room. Occassionally I’ll sleep in same bad as DW. But the livuing room is open to the kitchen and medicine and nightly fixes are in that same huge room. So it wakes me up. I’m not a real deep sleeper either so I’ll wake up to all kinds of noise, various injury pains and sorts.

Doctors’s are basically useless and have given me sleeping pills that I try not to use all the time. The allergy medicine I take at night helps to begin sleep but not throughout the entire night.

Thanks for the prayers and it’s wonderful to be home in the Catholic Church. At least hear I have a place to put our crosses we carry.

PAX tecum
Mark


#10

WOW! I felt so alone in the world even though common sense told me there were others like us. It’s really nice to hear other having issues with sleep too…sorrry. I do sleep mostly on oposite side of house in the living room. We have a multi-level home with bedrooms in the back. The only room away is where we keep cats at night and I’d rather have a baby wake me than a cat driving me crazy.

I take “abmbien”? when I really need it. I even share it with DW on accoasion. It works, but not the idea solution. Lack of sleep causes other medical issues too…anxiety. We take care of that through paryer and/or medication if it gets difficult. Feel like we’re constantly in the Garden of Gethsemane. Being Catholic works really well, we offer up our suffering for souls in purgatory, vocation in our children, good priests, etc.

Neither of us have family in the area. DW’s family is anti-Catholic with good intentions, and thankfull on this point they do not live close. They do not know that we have converted from our previous faith. Except one brother that dropped out his last semester in preacher college Lubboc Christian. Her 2 oldest are olde enough to be father to DW and are both preachers in same faith. FIL died 2004 at age of 88. My parents are deceased. Her mom is definitily not going to hear of our conversion and lives in Oklahoma. So no family support here. So we just grin and bear it.

I posted at the end of my rope and almost fell asleep at work yesterday…in fact I think I did…But if you knew me you’d know that even in basica training I was the guy that watched for the other sleepers…I could not sleep like that. Same today. Only this is a sign of just how tired I am. This sleepless night thing has actually been going on for several years. now…but recently it just got worse. DD is sick right now too with red rashed cheeks and drooping eyes. Poor baby. I’m going to an interview at 3:00 P.M. today, closer to home with management. Please pray for God’s will and direction. I am discerning the diaconate and don’t want anything to get in the way or my oldest sons vocation to the priesthood. BTW…we are very good parents. God still gives us graces to raise them right. Thank you Lord.

PAX
Mark


#11

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