There is No Place Like Home

There really is no place like home, oh how I love home with my loud, crazy, forgetful, too busy, sit quietly, read a book, play ball/nurf guns in the house, but get a great snuggle in family.  I guess more than no place like home there is no people like family.

We’ve been home now for 10 days.

Ten wonderful days
10 days to not pack another bag to go to the hospital for another nerve-wracking hold my breath and worry night.
10 days to get kids ready for school and do car line drop off.
10 days to sleep next to my husband.
10 days to sit around the dining room table and laugh and visit.
10 nights to check on my sleeping children.
10 nights to feel the weight of PS as she snuggles after nursing.
10 nights to not walk the halls of the hospital.
10 days to be the mommy.

Oh sure I have not yet resumed my normal, I have avoided going out, and when I do go out I leave PS with someone, I am a bit afraid of germs, and people trying to mess with her, touch and hold her.  I had a friend come over to help take down the Christmas tree.  I had another friend come over to wash floors with me.  {I have some great friends} I still have friends dropping off meals for us, this is an unexpected nice treat for me.  Eventually we will resume our ballet, run errands, miss naps, go to Chick~fil~a normal routine but until we do I am taking a laid back approach mostly sitting around snuggling and rocking the 2 girls at home.

Things have been eventful at home.  We celebrated C and O and E’s birthdays this weekend.  Cannot believe he is 18.  He received mostly clothing for now, but really next year, and a great luggage set when he opened had us all laughing at him as he expressed exuberant delight over the suitcases stacked inside suitcases.  Sweet Sixteen and not at all what I feared she would be like as I sat in my hospital room 16 years ago worrying about being the parent of a girl.  I cannot even begin to understand how she got to be so old.  E has had 8 years of constantly amazing us and showing how strong she really is.  Both C and O had their birthdays while we were in the NICU, C chose his birthday dinner as a child of tradition he took Keith and they went to 5 guys, O has yet to choose her birthday dinner I think because she felt some of the responsibility at home while I was gone.  She will choose soon.  I was home for E’s birthday she chose me and her aunt to go to Panara Bread.  I felt special since she has mostly chosen her 2 aunts, and never me.

I did not realize that Big Sister A had not really been around a nursing mom too much, until she started to obsess with my nursing.  She thinks it is funny and likes to check on us while feeding.  “momma is your b**bie in her mouth?” “yes dear she is nursing” “Hahahah  that is silly.”  That has become a multiple daily comment.  She has greeted people who come over with the information of nursing.  When the heart monitor guy showed up at our house she told him “My mommy has her b**bie in little PS’ mouth.  He just looked at me and I replied “nursing is new to her”  He smiled and said he had 2 little girls not to worry about it.  Big Sister A has yet to try to nurse any of her dolls or stuffed friends I can only assume she will eventually.

When she is not obsessing about nursing she is constantly touching her.  Every time she walks past her she has to stop and poke her or kiss her or rub her, PS is quite the tolerant child, only grunting every so often.

Time is marching on and yesterday was my due date so PS is officially not a negative number anymore {that was how she was referred to in the NICU} She no longer looks premie but like a newborn, she is gaining weight, an ounce a day last week, and sleeping for 4 plus hours at a time during the night.

What about you have you celebrated a birthday or noticed how fast time moves?
Go hug your kids they need your love
jen

Things I learned in the NICU

After my days and days and days in the NICU sitting and holding our little Post Script I learned a few things and thought I’d pass my knowledge on to you

{Feeding tube, NG, in place she had dropped down to 5 lbs and was not gaining any weight}

The first one is a big one, a HUGE one actually and I am sure it will upset some people and go against what they have been taught or what they believe…
God actually gives you MORE than you can handle.
WHAT?!?!
Yes I said it
God actually gives you more than YOU can handle.
Alone.
If He only gave you what YOU could handle, then you would not actually NEED Him.
Think about it for a minute.

If we were only given what we could handle, what we could control or contain or even understand, then We would not NEED Him.  Because WE could handle it.
We need God and pushing us past what we can handle, being pushed points us to Him, lets us rely on Him, rest in Him and trust in Him.  Even when it is hard and ugly and stressful, and yucky, and painful, and sleepless, and scary.
If we do not go past our are self-reliance, than we don’t actually need God.
Psalm 73:26 “My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”
My heart, My flesh, alone.
Psalms 46:1 “God is our refuge and strength, a very present help in trouble.”
During the nights and days and the scary times, the stressful times and the sad, heart wrenching, alone times and I realize that the moments I could not actually go on, alone, I did not have to.  Sure I would have loved it if God would have sat in the flesh next to me so I could have physically rested in him, but to emotionally rest in his strength was good for my heart.
I could cry out to him “I just cannot go on”  He answered me “I know”
I could cry out to Him for grace for the next moment.  Soon we had passed that issue and moved on to a peaceful moment.  But I could not do it alone, and He did not want me to do it alone, He wanted me to rest in Him, find comfort in him and to Know that He is God.

We had 23 days in the NICU, I watched and observed a lot in those 23 days

Here are a few things to help your friends who are experiencing time in the NICU or actually extended time in a hospital or extended care facility.

Sometimes having a friend come and sit and rub your back is enough.   There is a great place for the “Pollyanna’s” in life, but when you are emotionally exhausted and grasping at straws for good news, having someone who is constantly “cheering” you up is frustrating.  Things might not get better, things might get much worse and might stay that way, having someone constantly saying “things will be better”having a friend trying to cheer you up, gives a false hope.  Things might never be “alright” things might not ever “work out” so PLEASE for the love of the family STOP.  I know you mean well, but when bad news is delivered sitting next to your friend and crying along is more appreciated than giving false hope and cheer.

Please Stop telling them to “take time for yourself.”  Seriously!  If we felt like we could afford the time, or effort to go get a pedi, go shopping, take a long walk, whatever, then we would.  I had someone tell me to go to away for the day.  “WHAT?!”  Yes, they actually wanted me to leave my baby, leave my kids, leave my husband and go spend the day away.  I have no idea why they thought that was even an option for me.  We are aware that we are burning out, we are aware that we need to take some time alone, but for most of us, getting some time alone is not an option, instead offer to sit with the sick or injured so the family can go get a pop or coffee or even walk down to the hospital cafeteria.  We might not take you up on the offer but it does mean a lot to us.

Bring gifts, how selfish does that sound?  One of C and J’s classmates mom showed up one day with a dz donuts for us, she knew the kids had been coming up and thought having a sweet treat while they visited with P and hung out in my room would be a nice change.  She was right.  I had another friend bring me Chick Fil A one evening, she sat with me for only about 30 minutes but I had a yummy sweet tea and sandwich and a nice visit.  It was refreshing.  Another friend gave me the gift of time, she came and sat with my while I rocked and nursed little P, her husband and Keith went to the cafeteria to eat and visit.  The simple things really are a blessing.

One more thing that we really appreciated was the meal plan my sister set up for us.  We had almost 4 full weeks of meals delivered to our house by 6pm,  the evenings I would come home, while a family member sat with the miracle baby, I could come home eat dinner and spend quiet time with the kids, doing homework, book reports, and bath time, and I did not have to worry about meal planning or cooking, or grocery shopping, or balanced meals.  We sat down to yummy meals prepared just for us by people from all parts of our lives who wanted to show their love to our family.  That made my cry in appreciation for those who were able to do that.  A few friends who are not good in the kitchen gave us gift cards to some local restaurants and gift cards to the grocery store, those friends make me smile and bless my heart too.

Oh here is one thing that I have found annoying, when you have a friend who has a NICU baby, or extended hospital stay, don’t compare.  Each person, each case, is different, I have had moms already make comments about “my baby was __ weeks and we did not have to stay for as long as you, my baby never had brady’s, my baby, fill in the blank, and add a comparison.  I am not yet sure how to reply, I guess a “good for you” or maybe “wow you are lucky.”  I have no idea what makes moms so competitive, how small or how big your baby is, how early or how late, each baby is different so throwing out how perfect or cheap or easy you had it makes my stomach turn.  Sure share if you are trying to offer sympathy or camaraderie but if you are showing how easy or perfect you had it, then save it for someone else.

Next time you have a friend who has some unfortunate hospital time please keep those bits of advice in mind.  I know you want to help out, and be a comfort to them but sometimes it is hard to know how to do it, you don’t want to intrude but you want to show that you care, keep those things in mind, we really are lonesome and appreciate those kind acts.

What about you, any advice you can add to this, anything that you found helpful or annoying during a hospital stay?

Go hug your kids, and tell someone you love them, soon it will be the LOVE month and it is time to share the love!
jen

Our Little Post Script, an update.

I know many of you have been asking about our little P.S. All the girls togetherPS and her body guards

Did we get released from the hospital? nope we are STILL there… 16 days and counting
Is her heart maturing? not as fast as we’d like
What about her feedings? improving
When is she coming home? I can only hope this month some time
How are the kids adjusting? some days are better than others

Let me just say, having a preemie is the most heart wrenching thing I have ever done.  Am doing.  Will continue to do.

Our little PS is not cooperating how we would like.  She is however “following the 35 week preemie manual” and one of my nurses informed me no less than a dozen times.  {I wish I was joking}

PS is still having a hard time with her heart.  She is still having “Brady’s” and she is stressing her mama out!  We are stuck at the hospital until she can go 5 days without an episode.  Her little heart rate drops down to 60 to 70 beats per minute, it pops right back up with out problem, it just should not drop down like that to begin with.  No measures have been taken to bring it back up, it comes back up instantly on it’s own.  Her nervous system is just immature, we are promised it will mature and should mature soon.

I have cried enough that I ought to be dehydrated,  I have sat still in a rocking chair with arm rests too high for 5 hours at a time.  I have talked to and listened to more nurses who have slightly different ideas on ways to handle her. I have slept sitting up holding her, I have skipped meals just to breath in her smell.  I have listened to crying children and beeps and alarms until I think I may lose my mind  I have stared at the monitors for hours at a time and as the numbers creep lower I begin holding my breath.

I have bargained, pleaded, pouted, and tried to reason with God.

I know that God planned out our steps, before time began, I know that God does ALL THINGS WELL and I know that all things bring glory to God,  but I just don’t like this.  And I am thankful that my God is big enough that He still loves me even when I cry and question him.  I am thankful that even when I actually cannot go on any more, He carries me. I cannot explain it.  I have no way to actually tell you how but when I cannot walk another step or cannot sit any longer or cannot handle one more heart dip He is there to take me through it.  I cannot explain how but I know He is there for me.

I have found moments of peace and trust, and when I lose sight of those moments I have 2 dear friends who point me back to the peace that is not understood.

I am almost physically ill when I think about how I am missing out on my children’s lives, I don’t like that I have not slept with Keith in 16 days.  I hate that I have to rip out part of my heart to come home for a few hours, only to rip out my heart again to go back to the hospital.  So painful and lonesome.

I am more tired than I ever imagined yet I cannot sleep more than 2 hours at a time.

I missed O’s 16th birthday

I missed C’s 18th birthday

I hate that.

I don’t know how parents of extreme premies do it.  I have not yet left PS alone, I have had her grandma, or her beda, or one of her aunts stay with her every time I leave her.  I cannot bring myself to leave her alone {In the care of the nursing staff, but alone with out family}

Her liver levels elevated enough that she spent 48 straight hours under the blue light.  She was able to come out for 30 minutes each 3 hours to nurse but right back under the lights she went until the next feeding.

She has managed to go 48 hours with out a brady but picked them back up again in a “storm.” Giving us a hope and a plan.

She “goes” like a champ often needing 2 different diapers at a changing, giving her nurses reason to change her bedding more than anyone else in the NICU.

There is my update on our little PS.

Please keep praying for her heart.  Pray that God will strengthen it so she can come home soon, we are ready to be back as a whole family again.  Pray that God’s strength will carry me as I am sure there will be more disappointing news before we can finally go home.  Pray for my children who miss their mama, and for this mama who misses her children.  Pray for this wife who misses her husband.

What about you?  do you see and feel God carrying you when you really cannot go on, you cannot take another step, you cannot breath because sadness is crushing your chest and you cannot escape the pain?

Go hug your kids and tell someone you love them.
jen

All in Due Time

If you have not learned this in your life, now is the time to learn.  Not all things go as planned.  Nope.  Shocker I know…  But seriously wasn’t it Shakespeare who made them comment “even the best laid plans”?  Or was it someone else?  Mrs Random, can you get on that for me?

We have known from the beginning of this pregnancy that things were a little rocky to start, there were some great unknowns and some potentially tragic knowns.  We have gone from cautious, to cautiously optimistic, to almost optimistic back to cautious, it cycles around.

On Thursday, day after Christmas I had 3 regular ob appointments.  What?  you don’t get to have 3 different appointments when you are pregnant, on the exact same day?  How lucky you are.

As God would have it, they started out the morning a little backed up, then one of the monitors in the NST {Non Stress Test} room was faulty.  I was sent back to the waiting room.  On my way out I passed my doctor’s nurse.  She asked how the test went I explained to her the situation, then went to wait.  I was called back almost immediately, the doctor had a cancellation I could skip the NST and go right for the doctor visit, catching the NST before the final visit of the day.  After congratulating me for making it to 35 weeks we began to discuss the last few weeks and the warning signs to watch for.  I mentioned one of the things he was concerned with.  After a quick test it was determined that I had a leak, as in I was leaking water, a slow leak but a leak.  When we discussed the time line it was determined that my water broke and it was now more than 24 hours and it was time to get the party started and fast since baby #7 was looking at a battle being 35 weeks and 1 day, now with the high probability of infection.

I was sent home to “get my affairs in order” and check in the hospital in 2 hours.  I sent Keith a text telling him “Crap” he knew something was up.

Most of the kids were excited and concerned although C was only concerned at my laid back attitude in the speed I was planning on going to the hospital.  I brushed out O’s impossibly tangly hair, packed up a few things and talked with the kids before we left.

Knowing that nothing was going to happen for a while I sent Keith home.  He came back along with my sister and mom, both were afraid they were going to miss out on something.  Yes, nothing happened I checked in at 2pm spent the next almost 8 hours in ob triage before being sent to labor and delivery.  Where you guessed it nothing happened.  My sister did go home to nap.  Keith came back before I went to labor and delivery, although nothing happened for hours.  Because I was going for a v-bac I could not be induced.  The risk of rupture was too great.  We had to wait it out.  After hours of wait it out, the doctor decided to give me a slight potocin boost and watch carefully.  After hours and more hours of nothing happening, the nurse and doctor talked about my failure to progress, and the strong possibility of a c-section.  The very thing I did not want.  But more than not wanting a c-section I wanted a healthy baby.  The NICU was notified, and I rolled over where I was hit with a contraction that proved failure to progress wrong.  They came strong and as I talked my way through them I realized that I could feel EVERYTHING on my left side.  EVERYTHING.  EVERY SINGLE THING.  And I did not want to feel anything.  The anathesiologist was called in and I was given a boost that did nothing to my left side but my right side felt great!

I will not divulge any more labor information since that is kind of yucky.  Let me just say that after a while things got kind of scary and a lot difficult and more painful than I ever imagined.  I am so thankful for modern medicine, for modern medical care, for a doctor who was patient and not willing to give up or even take the easy route.  I am thankful for God’s hand of protection over baby #7 and me.

She arrived to loud cries.  She came screaming into this world a little after 7am at 35 weeks and 2 days.
Too early.
5lb 13 oz and 19 inches long of pure miracle.
5 months of praying,
5 months of doctor appointments,
5 months of crying out to God to protect this baby and make this baby grow, to keep this baby from harm and to deliver a miracle to us.
We have a miracle.

After a quick assessment and about 20 minutes with her they rushed her off to NICU to get a full assessment of her condition.

I am doing well, she is acting like a 35 week baby.

The stress of this is killing me.

The stress of this starting to show at bed time and in the quiet minutes with the kids.

The stress of this is making me hold my breath as I hold her, making me cry all the time, for good news and bad news, the stress of this will eventually end but it sure is hard.

She is having a hard time eating and gaining weight, she has dropped 13oz and today finally 1 week old she gained 1.1oz.  We are making progress.

She is having a hard time regulating her heart she is having “brady’s” where her heart rate  plummets, all of this is typical 35 week behavior but it is stressful none the less.  At most hospitals when the baby has a “brady” they have to stay in the NICU for 5 more days.  Knowing this every time she has a brady the count starts over and I cry.

As of today when I left for a quick trip home she has been more than 24 hours brady free.  I am afraid to check when I come in, afraid to ask her nurse if she had one while I sneak a nap in.  I am afraid to relax and enjoy her because I am worried for her.  *UPDATE* we hope and pray she will be home on Monday.

We are calling her PS as in our little post script.  Those of you who do not yet know us personally I am sorry but I will not be putting her name on here.

Please be praying for our little girl. pray she continues to gain weight and pray that she gets stronger and can regulate her heart so we can all go home.

We need to go home.

How was your Christmas?  Did your vacation plans drastically change or did your vacation proceed as planned?
Go hug your kids, they need your love
jen