Monday, May 4, 2020

The N.I.C.U. - Week 2

I don't know if this is good or bad but I spend nearly all of my time with the babies.  My current schedule is to head to bed after feeding them at 8:30 p.m. and pumping.  Then I wake up to feed and pump again at 11:30 p.m., 2:30 a.m., and 5:30 a.m.  After their 5:30 a.m. feeding I head back down to shower and get ready, Brandon brings me coffee when he comes up to say goodbye, and I order breakfast to the room so that I can eat quickly before their 8:30 a.m. feed.  Then I hold them until their 11:30 a.m. feed, pump, eat, and hold them again until their 2:30 p.m. feed, and again until their 5:30 p.m. feed.  At this point Brandon is usually back with dinner or we will walk down to the cafeteria for dinner, and then make sure we're back again for their 8:30 p.m. feed before we head to bed.  I'm not going to lie I feel like a zombie walking the halls in the middle of the night, paging in on each floor with my name and room number or "Mom for the Troyer girls," pumping and walking my milk to the nurses station at all hours of the day and night.  The days and nights after awhile do just turn into one big blur, but I'm trying to see this as sweet time with the girls that I wouldn't have had if we'd taken them right home.  I have a lot of help here and don't have to divide my time.  So, while the nurses keep saying sleep and think about getting out for a little while, I keep telling them I have 5 kids waiting for me at home, this is more rest than I'm going to get anytime in the near future.

Day 8 - May 17th - Friday
Today was a busy day.  Kendra and Andy came down to meet the girls as did a couple of the kids and  I left the hospital for the first time to attend Sadie and Wyatt's spring musical.  There was lots of planning that went into this one little outing, as is the case with most things with this big old family of mine.  We found out yesterday that Wyatt needed a white shirt and slacks so Uncle Robert made a Target run for us and Brandon stopped by the house to pick up some outfits for Sadie to choose from, clothes for me, a curling iron, and shoes for the kids.  He also picked up pizza and then we all meet in the lobby outside labor and delivery at 4:45 to eat and get ready.

We took Grammy's car and our car to the musical and left Grammy and Amy with the babies so that  Brandon could take the kids home for the weekend, and Robert could take me back to the hospital and pick up Grammy after the program.  It was was kind of a last minute decision and in hindsight I'm not exactly sure why I decided to do it this way, but I decided to try giving the girls bottles since I was going to be gone.  I still had nurses pushing me to start bottles and I was constantly struggling with it.  It felt like if I was willing to give bottles we could be out of there in just a day or two, but at the same time I felt like that was short sighted because I knew it would be even harder to figure this out at home, and I knew I'd be really disappointed if I gave up too soon.  Brandon and my Mom were really supportive, though it required a lot of extra work for them managing everyone else, and I'm so thankful!  Anyway,  being gone was going to mess up our feeding schedule and so for whatever reason when the nurse asked about bottles that day I said sure why don't you try it while I'm gone and then I'll at least know if they take them well or not.

Well, they had no trouble.  When I got back from the show the nurse was excited to tell me they'd done amazing and had taken it all.  I was happy but then kinda upset at the same time because now I really had to face the fact that breastfeeding was the only thing holding us here.  Anyway, like I said I had a lot of support and decided to wait until Monday when I could talk to my O.T. again and see what she had to say before giving any more bottles.  Luckily the nurse I had that day was very understanding.  She also really liked Shannon and said that she would have never approved of the bottles that they gave them because they had to fast of a flow.  She encouraged me to wait to talk to Shannon and pointed out that every nurse was going to have a different opinion and that their job and priority was to get babies home.  So, she said that it was a good idea to keep Shannon as my constant and affirmed that she was truly my biggest advocate here.  I think that was really a game changer for me.  It made things with the nurses easier because from this point on I was able to make a plan with Shannon and then just refer each nurse back to the plan that she'd written in our charts.  It also removed my internal struggle over who to listen to.  Shannon comes in every day or every other day.  So now I just take their input and say thanks I'll talk to Shannon about this next the time she comes by.



Maddie




Aubrey

Aubrey

Spring Musical


I'm not going to lie, it was nice to get out, but it was also really hard.  When I'm at the hospital I'm just really focused on the babies and I don't really think much about what I'm missing with the other kids.  It felt really different when I left the hospital.  I think it just made me realize that while my life is kinda just standing still it is still going on for everyone else and I am missing things with the other kids.  Yet even as I realized this and tried to be present for this moment with them, all I could think about was getting back to the babies, which made me feel really guilty and emotional.  This is really such a strange experience.  It's not all bad, but I'll definitely be glad to have this behind us so that we can all be together again.


DAY 9 - May 18th - Saturday

Brandon braved a day at home with all the kids today and I think it was probably good for everyone.  I know the kids have missed us and their normal routine even if they won't admit it, and I imagine Grammy was ready for a little break to regroup too.  They all looked so happy playing with their baby goats.  I miss them and really hope this is our last weekend here.

Hazel caught this little one all by herself.


The girls are still doing good but Miss Maddie has been worrying us a little bit.  She has had blood in her diaper on and off.  The neonatologist and charge nurse don't seem worried.  They think it is a fissure or small cut and expect it to clear up on it's own but it is still concerning to me.  Today there was quite a bit of blood again and my nurse kinda freaked out which scared me!  Praying it's really nothing and that it all clears up soon!

Maddie (L) and Aubrey (R)


DAY 10 - May 19th - Sunday
Well the kids got to eat one of Daddy's yummy breakfasts and got some more goat time today before they headed back to Grammy's house around 4:00, all packed up for another week at school.




French toast and bacon for Mommy.


 Maddie (L) and Aubrey (R)

DAY 10 - May 20th - Monday
Nothing new today.  Just taking it one day at a time.  Enjoying these sweet girls of mine!  I just cannot get over how precious they are or the fact that there are 2!!!!
Aubrey (L) and Maddie (R)


Daddy (Aubrey) and Mommy (Maddie)
Back at the hospital to stay we me after a weekend at home.

Aubrey's poor little cheek in this photo!  Both of the girls have pulled their tubes out a couple of times and it is so sad having to reinsert it but also having to pull the tape off every time.  I just hate seeing they're sweet skin so irritated.  The nurses do switch the tube from side to side each time to give their skin and nostril a break which is nice, but it's still sad.  It is going to be such a great day when we get to unhook them from all these wires and tubes.  Every time we pick them up we have to try not to get them all tangled, each time we weight them we have to disconnect all the cords and then reconnect them before the monitors go crazy. and then before I feed them I have to get all the wires situated so that nothing is pulling and we can sit comfortably.  We've gotten to where we can manage this on our own, I can even get them in and out of their beds all by myself, but it's still such a process and we sure do look forward to the day when we can just hold our babies without all the extra stuff.

DAY 11 - May 21 - Tuesday
Maddie met her feeding goal today!!!  If she does it again tomorrow her tube can come out!!!!  Praying that she keeps it up and that Aubrey is right behind her.  Up until today Aubrey has been the stronger eater.




DAY 12 - May 22 - Wednesday
Today we lost our boarding room.  I guess they are full on Labor and Delivery which means we had to give up our room.  This is totally fine except we weren't expecting it.  I went down to eat breakfast and when I got back a cart of all my stuff was in the N.I.C.U.  Oh well!  Anyway there is a couch/bed in our room here and I guess they're hoping another room will open up and then we can stay there.

Exciting news today!!! Maddie met her feeding goal again which means no more tube for her!!!!  We are so excited!!!  They say that babies are usually discharged about 48 hours after their tubes come out.  Aubrey was close too!  She was at 90% of her feeding goal so we will see what the doctor says when he makes his rounds tomorrow.
I have a very sweet husband who brought me the first rose from my favorite bush a couple of days ago so that I could enjoy it here at the hospital.

Aubrey

Check out Miss Maddie.  No Tube!!!

Uncle Robert took these two fishing today.


Enjoying some baby time.  I think they're really getting anxious for the girls to come home.  I can especially sense it in Sadie.  She's ready for life to get back to normal.

Daddy and the Nut!

Oh and we did get another room last minute across the hall from Labor and delivery.  We're now staying in the pediatric wing.

DAY 13 - May 23rd - Thursday
Aubrey is getting her feeding tube out today!!!!  Unfortunately, Maddie had quite a bit of blood in her stool again.  They're taking her off the formula fortifications thinking it might be a milk allergy.  We're praying she doesn't loose ground.  They both gained again yesterday which is good.  The number game they play in here really stinks.




DAY 14 - May 24th - Friday
We asked the doctors at rounds today for an idea of when we can get out of here but they were pretty vague.  It seemed like they were happy with the amount that they are eating and like it was reasonable to think Aubrey will be discharged in the next day or two, but they want to know what is going on with Maddie, so that is probably going to be the hold up at this point.  In addition to taking her off the formula fortification, they also took her off vitamins as they can irritate the intestines as well.  Dr. Schelonka says at this point everything still looks good and there hasn't been anymore blood since yesterday morning, but if in a couple days without formula it doesn't clear up completely the next step would be an I.V. feed for a couple days to give her intestines a break to heal and then they'd reintroduce food.  I'm really praying that it doesn't come to that and holding onto the fact hat he keeps saying all signs are reassuring that this isn't anything serious.  
They're going to start some of the discharge stuff like the car seat tests and hearing screening this afternoon and tonight so that there won't be any hold up once we do get the go ahead.

I had a nurse I'll probably never forget today.  Her name is Jody and the first time I had her a few days ago I kinda liked her.  She's an older lady, lots and lots to say.  In fact we laughed and said she was a female Danny, she knows so many random things and has so many crazy stories.  Among our favorites were her explaining again and again that breast milk is liquid gold and telling us that we should never waste any.  According to her we should put it in the mac and cheese, or the brownies, or sell it to the body builders.  Haha!!!  She'd sit in my room for the longest time talking to me about whatever until she had to go and take care of one of her other babies.  For the most part this didn't bother me, although occasionally I wished she'd go so I could rest.  Anyway, so she was my nurse a few days ago and had seen Maddie bleeding but then was gone during the that time that the doctors decided to treat it as a milk allergy.  So today when doctor Schelonka was doing rounds she started in about how she'd seen it and Maddie bleeding profusely.  Both I and the doctor tried to interrupt her to say that things had change and that we now thought it was a milk allergy but she just couldn't let it go.  After about the 3rd time of her adamantly telling the him that it was an anal fissure and that she had seen it bleeding profusely I lost it and just walked out in tears.  For whatever reason I just couldn't take it today.  It all felt too stressful!

Well according to Brandon, she was scolded by the doctor for not holding her tongue in front of me so when we interacted again, a short time later, cuz you see your nurses a lot in here, she just couldn't stop apologizing.  She felt so bad she'd upset me and she was so sorry she didn't know.  She claimed they hadn't left it in her notes and she even ended up going back to talk to the Dr. again and then informed me that she, mind you SHE, had explained things to the doctor and now "they" thought it was probably just an allergy and that eliminating the formula should solve the problem.  Insert lots of eye rolls.  She was crazy!  Anyway so I was desperate to change the subject to anything other than this and so I asked her if she had any pediatricians that she'd recommend.  Well the 2 she recommended were the ones everyone recommends and I already knew that they weren't taking new patients.  I told her that my sisters friend actually lives near the one I'd want and that my sister would love to have but she hasn't been taking patients for awhile.   At this point Jody very adamantly told me I should call and demand to have her.  I should have the best for my babies!  Again eye rolls.  That's not really the way I do things but at least we'd moved past the apologizing. :)

Well fast forward 10 minutes and she shows back up in my room all excited and tells me to come  to the nurses station RIGHT NOW!!!  She has the doctors office on the line and they're going to take my girls!  WHAT?!?!  So I go and talk to them and make my first appointment and then she comes back in and says not to tell them who called because she doesn't want to get into any trouble.  I'm sitting there thinking what did you tell them?  Apparently she told them that I knew Dr. Stout and Dr. Stout knew me, which is not the case.  I texted Amy to see how her friend new Dr. Stout and I believe it was that her friends mom lives in Dr. Stouts neighborhood or something like that.  So my first appointment shouldn't be awkward at all.  Especially since I already had Amy contact Dr. Stout through her friend to get a different doctor recommendation.  I mean I'm sure there are all kinds of families of 7 with twins checking out of the Salem N.I.C.U. this week.  She'll NEVER put two and two together.  Right???  Oh what a day!

Sadie and Wyatt had a big day today too.  They spent the night at the Zuidema's house last night and Ashley was kind enough to drive them to the track meet this morning and look out for Wyatt while they were there.  She has been so wonderful through all of this!  She volunteered early on to pick up and drop of the kids from school.  So for the past 2 weeks, EVERYDAY she has gotten her crew ready early so that she could swing by the dairy and pick up my kids and then bring them back after school.  This was a huge help to Grammy and again I'm just so thankful for the sacrifices everyone has made for our family.


I asked Zac's Mom, Lisa, to keep an eye on Sadie during the track meet and she said sure.  She was so sweet to send me pictures all throughout the day of Sadie participating in her various events.  I'm so thankful today for the friends who made this day possible for Sadie and Wyatt!

Sadie, Lisa, and Jillian

Sadie and Zac

Zac, Carter, and Sadie

Go Sadie!!!


Sadie and Jillian

Jillian, Sadie, Zac, and Jacob

Go Wyatt!!

Cooper also had a track meet today but in a different location.  Kindergarten always does they're own meet at the school which is super fun but hard when you have kids in both groups.  Anyway, so Grammy, Great Grandpa, Hazel, and Evie took Cooper to his and cheered him on.



Notice Great Grandpa has a good hold on their hoods.  He's got it all under control! :)






Sadie and Wyatt also got to go fishing with Uncle Robert this afternoon.  Like I said...big day for these kiddos.


We snuck out tonight and grabbed Paddington's pizza between the girls' 5:30 and 8:30 feed.  It was good to get out.  Even I am starting to go a little crazy.  I'm so ready to get out and it was nice to feel like a normal person out eating dinner with my husband even if it was only for an hour.

Almost there sweet girls!


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