10 Weeks and 9 pounds

This week has been a lot better for Natalie and I.  Natalie’s gas pain seems to be getting less and less.  I’ve been giving her a massage every night before bed and on bath days in the mornings too.  Quite a life of luxury to have two massages per day!  I haven’t slept on the couch in over a week and she’s been going at least 6 hours between feedings at night.  She still consistently has trouble at dinner time with waking up early from her nap but we’ve started letting her go back to sleep in the sling (if I can get her too) while I scarf down some dinner.  I’m starting to think she just wants to participate in the family meal instead of sleeping through it! :)

Yesterday we had some good news.  I returned the hospital pump to the lactation office at Presbyterian Matthews.  Since we were there anyway, I asked if they could weigh her for me.  She weighed 9 lbs 2 oz stark naked!  That means she gained a pound in 2 weeks.  That’s incredible.  The doctor guessed she’d be 9 lbs at 12 weeks if she continued along the same growth rate so looks like she’s exceeding expectations.  Slow growth and even failure to thrive (no growth) is common with Down’s children so this is a huge praise!

I’ve got all the Medicaid applications ready to mail.  We have one to send in for January 18-31st and one to send in for March 1st on that goes to a different department.  They told me that if insurance doesn’t cover the physical therapy visits over 30 then Medicaid would pick it up.  Her therapist seems to think we won’t have any trouble going with the 30 visit limit this year anyway.

Natalie has her hearing screen on Friday this week and starts physical therapy at home next week.  

Amy

P.S. The pictures are of the huge tutu I made for Natalie to match Julia’s birthday tutu.  Couldn’t get Julia to put hers on for a ‘twins’ picture, though.   Hopefully, she’ll consent someday!

Tummy Troubles

OK, Jill you asked for it.  This ended up being incredibly long and I thought I nothing to write about!  I missed my Tuesday entry because I opted to make Natalie a tutu instead.  Julia really wants to be ‘twins’ with Natalie so I’m trying to grant her request.  Hopefully, I’ll get some pictures of them together later today.

This week was doctor’s appointments for the older kids and none for Natalie!  Just check-ups for Zach and Julia.  They did great and we juggled Natalie’s feeding times pretty well too.  Zach’s got one more month on his thumb crib.  He’s not sucking his thumb anymore but chewing everything he can put in his mouth.  We decided to wait one more month just to be safe. 

Julia had her birthday checkup.  She didn’t have to get shots but had to have her finger pricked for blood to be drawn.  She’s become very anxious going to doctor visits because of her molescum bumps.  The finger prick was not easy but she got shiny silver band-aides so that made it all better.  She only had 6 more bumps to go and we are hoping the medicine we used last night will take them off.  We decided last night to celebrate today the ‘death of the bumps.’  Talking about the bumps ‘dying’ caused Zach to ask us about going to hell because he just wasn’t sure how to ‘ask Jesus into his heart.’  Wow!  We had a long discussion with both of them about how we all deserve punishment but that Jesus took the punishment for us.  Julia got very upset realizing she was always going to do things wrong.  We told her that was true but that God knew that and he sent Jesus to pay for anything we have or ever will do wrong.  When we believe Jesus came to save us, God sees us through Jesus.  We talked about asking for forgiveness when we know we’ve done wrong so we can be reconciled with God and then all prayed together.  The night ended with Zach saying maybe we should start doing family devotions.  Isn’t it amazing that God could use something like warts to start a deep theological discussion!

Natalie’s gas pain was very bad a few days ago.  She had one day of lots of inconsolable crying.  I was out doing errands with her and she started screaming.  I ended up pulling over to figure out what was wrong since it was so out of character for her.  I got her out of the car seat and she passed some gas then the crying stopped.  It happened several times that day.  Just before David came home that night, I started going through an infant massage book I’d gotten that afternoon using their gas pain relief techniques.  Natalie was practically hysterical before I started.  The first thing I tried was a pacifier.  They said the sucking releases endorphins and helps them handle the pain better.  It worked.  We also tried rubbing her back just above her bottom in a clockwise motion.  The book said it was a move to expel gas.  It worked!  I’ve been massaging her every day since then and she’s been much better.  Tuesday night she even went 7 hours between feedings.  I’m hoping to be able to take a class next month to learn more.

Had a scare with bills this week.  We got billed for the early intervention coordinator’s services.  The insurance company said it wasn’t medical so they couldn’t pay for it.  I asked the coordinator and she said it wasn’t supposed to be billed and she would check on it so hopefully that will work out.  The insurance company also said we are only allowed 30 physical therapy visits per year unless medically necessary.  Even if it’s medically necessary as in Natalie’s case, it is the insurance company’s option to pay for it or not.  Natalie will need A LOT more than 30 visits so we’d ask for prayer that it would be paid for.  We also received Medicaid for Natalie last week but only for the month of February.  They told me she could have it to cover the hospital bills.  When I called about it, social security said they awarded Medicaid starting the first full month after a person becomes disabled and that if we needed help before that, it would have to be through NC DSS.  DSS has a constant message saying they are too busy to take phone calls but they did have an e-mail address.  I’ve actually had good luck so far with getting responses over e-mail.  They are sending me an application for Medicaid through them.  So, we’d ask for prayer that we can hold off the bills that we are hoping Medicaid will pay for and that Medicaid will come through for January 18-31st.  I can see how all the money stuff could work out but right now it’s still unknown.  God has been gracious and reminded me not to worry about it again and again so we are just plugging ahead day by day.

Amy

8 weeks and 5 years

Natalie is 8 weeks old today and Julia is 5 years! Both had a pretty good day.  We were supposed to go to another hearing screen today for Natalie but Monday night was rough.  I think she had a slight fever from her shots at the pediatrician’s office.  I rescheduled the hearing screen for a few weeks from now.  Monday was exhausting and I didn’t want to run out of steam for Julia.  So, we slept in and then Natalie, Aunt Mandy and I went to Julia’s school for her birthday treat.  Julia seemed to have a great day.  She was wearing a new dress I made her (a super twirler, no less) and said she had a princess dress on.  We brought her doughnuts with pink icing AND sprinkles and she seemed pleased.  Once home, she got to open Aunt Mandy’s present and then called Nana to skype opening hers.  Julia and Zach played all afternoon with those two presents, forgetting to ask about TV so Mommy is grateful!  I even got a short nap in before dinner.

Monday was another busy day.  First, we saw the pediatrician for Natalie’s 2 month checkup.  She was 8 lbs 2 oz and 21 inches.  We’ll probably go back for a weight check at 3 months and then the next doctor appointment will be at 4 months.  The doctor expects her to be 9 lbs at 3 months and 10 lbs at 4 months if she continues at the same growth rate.  That’s a lot smaller than Zach and Julia but still good for her.

We left the pediatrician, grabbed me some lunch, and made it to the physical therapy evaluation early enough for me to pump a few minutes before.  Natalie got 3 shots at the pediatrician’s office and it didn’t hit me til we saw the physical therapist that the shots would make her irritable.  She cried a little but did ok.  The therapist said Natalie was on track for a one month old (her corrected age) but that her neck and core were a little weak.  She recommended that we start therapy so Natalie won’t fall behind.  We should have a physical therapist come to the house once a week soon.  The therapist that evaluated her also gave me several massage techniques for her stomach and some exercises we can start using to strengthen her neck and core.  Good news is some of the things she suggested I’ve already been doing.   I left the PT appointment and decided to stop to get David some contacts.  When I got back in the car, I couldn’t turn the key to start the ignition.  It’s been getting progressively worse but yesterday I tried 25+ times then called David.  We were just about to figure out how to get it towed to Honda when the ignition started.  I was afraid to turn it off again so Natalie and I sat in the car while David made phone calls to figure out how to get it fixed.  We went to Honda and met David came home for an hour or so then went back to pick it up.  Big chunk of change but can’t really get by without the car starting so it’ll have to work out.  David and I did get to do a short dinner date, though, since Mandy was home with the kids.

Amy

A GREAT Thursday

A friend of my mom’s once said how she liked to look at trials with anticipation of seeing what amazing thing God was going to do next.  I usually find that is SO hard to do when I’m in the middle of a trial but I can say when Natalie was born, that thought came to mind and I hoped I would be able to see how God was glorified through her.  Though I may not every know why He chose to do it this way, I do know that God is working in Natalie’s life.

Natalie had a great day.  So much different than last Thursday!  David drove us to the hearing test downtown at 8 am.  I sat in the back seat trying to keep Natalie awake.  She needed to sleep through the hearing test so we had to make sure to keep her awake as much as possible.  I started off with a squeaker toy in her ear and it quickly escalated to ice cubes on her toes.  Not too much fun.  When we walked in the door to the testing facility, the eyelids were just too heavy.  In spite of snoozing a little early, she did pretty well.  The right ear tested fine and showed no extra fluid.  Natalie was a little more wiggly with the left ear.  Her left ear passed one type of test but failed in another.  The audiologist thinks it still could be fluid but wants to run more tests next week to see if there’s any problems with the organ itself.  I asked at what age hearing loss would effect her ability to learn to speak.  She said kids usually develop the same in the first 6 months in terms of speech with or without hearing loss.  So, we are scheduled for another 2 hour sleeping hearing test next Tuesday.  Tuesday is Julia’s birthday so I’m hoping the test will be on time and Natalie and I can make it to Julia’s class at the end of the day with birthday treats.

After the audiologist we went to the cardiologist with only a few minutes to spare.  I thought I’d have an hour or so to wait in between and even suggested driving David back home!  We waited quite a while at the cardiologist and when I could stand it no more, I finally asked for a room to pump in.  I had already missed a feeding time and was about to come up on another.  We got a room quickly and then they called us back to see the doctor.  Ugh!  I ended up pumping quickly anyway and left David with Natalie.  They did an EKG while I was gone and I got back just before the doctor came in.  He told us that the ‘holes’ we were told about were actually pinholes and that it was fairly typical for premature infants.  It had nothing to do with the Down’s syndrome.  He listened and suspected they were gone but we did and ultrasound just in case.  They are all closed up!  The doctor said we didn’t need to come back and that her heart was perfect!  What a huge praise!  Also, while we were there, the nurse weighed her with her diaper on.  She was 8 lbs!  Last week she was 7 lbs 10 oz at the lactation consultant’s office.  It could be the diaper and it could be the scales are off a little from each other but it looks like she’s gaining and possibly a lot.  We’ll have the official number on Monday when we see the pediatrician.

We’ll be decorating for Julia’s birthday this weekend then back to doctors on Monday and Tuesday.  Tuesday is her real birthday.  This is Julia’s year to not have a big party so I pray that we will still be able to make her feel special and for her to know how happy we are that she was born.

Thank you SO much to Melanie and Elana for picking up Zach and Julia today.  Please forgive me for my gross under-estimation of how long a doctor’s appointment would take!

Amy

Seven Weeks Young

Natalie has been with us 7 weeks today but corrected to 2 weeks since she was 5 weeks early.  For a 2 week old, she’s doing great!  We took pictures of her holding her head up on the Boppy pillow on Saturday and she did amazing!  She’s going 4 to 4 1/2 hours between feedings at night but she’s too small to go much more than that anyway.  Last night she woke up in pain from gas so that still seems to be the thing that keeps her from sleeping.  We got up at 3 am and I didn’t get to sleep back in my bed until after 8.  All three kids have done well sleeping on my stomach when they have gas pain so Natalie and I were on the couch last night.  She seems better this evening so hopefully her stomach is doing better.

Our big doctor appointments this week will be Thursday when we see the audiologist and the cardiologist.  Natalie has to be completely asleep for the hearing test so they want us to keep her awake 3 hours before the test and make sure she doesn’t fall asleep in the car ride downtown.  The car seat seems to have magic sleeping properties so not sure how that will work.  David’s going with me so one of us can sit in the back seat and try to keep her awake.  The cardiology appointment is to check on her 3 holes.  When we saw the pediatrician a month ago, she said they sounded very small by stethescope so hopefully they are already closing up.  Natalie will be evaluated by the Early Intervention physical therapist next Monday and then see the pediatrician for her 2 month check up.  So, we are praying that in the upcoming doctor’s appointments she will have improved hearing, holes starting to close, increased head control, and a big weight gain.

Amy

One Crazy Thursday

So, I haven’t been writing a lot cause it’s mostly been the same old stuff- getting Natalie to eat.  Yesterday, though, had more things going on so thought I’d share.

Thursday  morning, Natalie and I went to see the lactation consultant again.  Good news is, Natalie has learned to eat more efficiently from me- 56 ml in around 10 minutes.  Bad news is she has probably been wearing herself out doing it and burning more calories than she’s taken in.  She was 7 lbs 10 oz this week- only up by 1 oz from last week.  Pretty disheartening but the lactation consultant gave me some ideas to help.  I can only attempt to nurse twice a day instead of 5.  If I nurse her and still have to give her the bottle, it can only take 30 minutes total.  I’m also increasing her bottle amount to 90-100 ccs.  We see the pediatrician a week from Monday so we’ll see how it goes.

The day was pretty restful.  Zach and Julia were at Grandma and Grandpa’s house in the afternoon and my computer decided the day before that I’ve been working it too hard and blue screened when it gets too hot.   I ended up making Julia a princess t-shirt and relaxing.  It was a nice quiet day.  The night got pretty busy, though.  That night was one of the first times I’ve tried to cook since Natalie has been born but of course I didn’t have all the ingredients so dinner was pretty sparse on nutritional value.  David had a problem at work so had to stay late.  The kids were actually loud enough that they woke Natalie up.  Natalie was really hungry so kept wanting more milk while I tried to finish dinner.  The bathroom door got locked from the inside after Julia tried to plunge the clogged toilet.  And the kicker- Zach swallowed a 5/8” x 1/2” Lego Minifigure gun that when I called the doctor, sent me and three kids to the emergency room at 8:00 at night.  Zach was fine but thought he could still feel the gun stuck in his throat so we had to get an x-ray to be sure.  Oh, and in the emergency room waiting room with the choice of the kids watching “Sanford and Son” and basketball, I picked basketball.  Zach decided it was a pretty cool game to watch.  When we got back to triage and they told him that they would have to do an x-ray, he looked at me with excitement and said, “Cool, my first x-ray!”.  It shouldn’t have been funny but what else could I do?  David came a little later so I could get the girls home.  We left with Julia screaming, “I want my Daddy”  all the way out the door.  Natalie slept through the whole ER visit and even past her feeding time.

Fortunately, the late night was not too bad and Natalie gave me 4 hours between feedings.  David’s working late again tonight but hopefully we’ll all get some rest tomorrow.

The Christmas Box

A few years ago, we decided to celebrate Jesus’ birthday on December 21st as a family because it is the darkest day of the year (Winter Solstice) and Jesus is the light of the world.  I’ve always liked that picture.  At the birthday dinner, we each give Jesus something and write it on a piece of paper and put it in the Christmas box.  It’s never anything I’d want for a birthday present but we tell the kids that Jesus wants to bear our burdens so we ‘give’ him something we are struggling with.  We keep the slips of paper in the box and read them again next year as a reminder of how we are doing with giving up a struggle.

Typically, mine have something to do with weight loss or bad eating habits and, I confess, I can never truly say I give that burden to God.  This year, for some reason, I wrote down “worrying about baby Natalie.”  Now, the strange thing is that on December 21st, when we had our birthday party, we thought everything was fine with Natalie.  God knew what was coming, though, and I believe wanted to remind me of how He was taking care of things later.  On December 29th, we had our first indication of the possibility of Down’s Syndrome.

All that to say, today I’m worrying about Natalie’s hearing.  We have the second hearing screen next week and I’m just not sure she’s hearing us much.  I’ve been spiraling into all the problems that could cause her.  I then remember the Christmas box and, in spite of my inability to let go of worrying, God is still there reminding me that letting go is what is best for me and He is in control of Natalie’s life.

Amy