Yellow and Red Faces

We had a silly scare this afternoon.  I should have known when I called the pediatrician and they asked me if I was a first time mom!  I noticed this afternoon that the whites of Natalie’s eyes were yellow and that her poop had starting getting more yellow too.  When I looked at her skin, it looked like she was yellow from head to about waist then started looking pink from waist to toes.  I called the pediatrician and they wanted to see her right away.  Course, it was at 4:00 by the time I talked to them so the kids and I raced over to make it for the last appointment of the day.  Turns out it’s just breastfeeding jaundice and no big deal.  David ended up leaving work early cause we figured it would be serious.  Natalie practically slept through the whole fiasco!

We did ask about her seemingly hard time in passing poop when we were there  at the doctor.  She seems to strain really hard getting red in the face to get anything out but is not constipated.  Last night, she woke up screaming trying to go.  I had started looking up infant massage techniques for gas yesterday afternoon and had begun to wonder if the small amount of iron in the formula supplement was causing her pain.  The doctor seemed to think it was normal for this age but that it was probably harder for Natalie to pass stools because of her low stomach tone.  A friend had told me her son with Down’s had a similar problem.  As her strength increases, it should get better but right now it’s very disheartening to see her struggle so much.  We did get a weight while at the office, though, and, with a dry diaper on, she is now up to 7 lbs 12 oz!  Last Thursday, she was 7 lbs 6 oz naked.

We are continuing to work on breastfeeding.  It’s still hit or miss.  She did actually get a full feeding from me at 5 am this morning but every other time today she cried a lot and stopped and started.  I just get so frustrated with her crying I give up too soon sometimes.  We really crave prayer for this.  With pumping and feeding her a bottle in the middle of the night, sleep is precious.

One sweet thing did happen today.  Zach has been out of school this week and has been wanting more and more to help with Natalie.  One time today, he fed her the bottle while I pumped.  Of course the bottle is much faster than the pump so they got done before me.  I turned away for a minute and then noticed that Zach was picking her up off the floor and putting her in the bouncee seat for ‘play’ time.  He did great!  He held her head and neck very steady like he’d been doing it for ages.  Later on when Natalie was crying from gas pain, I laid down on the floor with her on my stomach.  Zach begged to let him try.  He laid down and I put the  baby on him, tummy down.  She fell asleep instantly.  When I told him what a good job he was doing, he said something about I should have him do it more since she fell asleep faster for him.  If he only knew what he was saying….

Prayer Requests

• easing of Natalie’s gas pain and her ability to go poop
• that Natalie would be able to breastfeed
• that Natalie’s Medicaid application would be approved.  Started the application today and they said it could take 2 to 6 months.
• for our hospital bills.  We’ve been receiving our first couple of ‘this is not a bill’ statements.  Natalie’s bills alone will be more than our house could be sold for.  If Medicaid is approved for her time in the hospital, then her bills will be 100% covered between that and our insurance.  Then we just have to tackle my hospital bill!
• praise that she is eating very well from the bottle and gaining weight since being at home.
• praise that Zach and Julia are loving her so much

Amy

Baby Shower

Natalie and I had a wonderful time at the baby shower.  Thank you to everyone for loving us both.  David and I have been so blessed by all the prayers, encouragement, help and support we’ve received since Natalie’s birth.  It was healing to see Natalie being loved on by so many.  Thank you also to Melanie and Ashleigh for giving the shower.

Natalie was passed around and practically slept through the whole event!  I found a newborn size dress for her to wear so she wouldn’t be coming to the party in her jammies and of course that hair had to have a bow!  Melanie took lots of pictures of her so I’m including just a few.  She woke up a little just after everyone left so we got a few with her eyes open.

I started reading a gross motor skills guide for Down’s Syndrome children Sunday.  Natalie’s still a little young for most of the exercises but we could try a few.  Apparently, she should be working to being able to lay flat on her back and holding her head straight.  Usually, she lays her head to one side.  I figured out how to use a blanket roll to support her neck and have been putting her in the baby gym with it.  She’s been starting to bat at toys!  I’ve also been trying to work on holding her legs in alignment when I hold her.  Without support, they splay out like a frog’s legs.  The books say that could give her hips difficulty later.  I feel like there’s so much to learn!

Amy

Doctors Appointments

This week starts a barrage of doctors appointments for Natalie.  We started with the pediatrician for her Monday, the OBGYN for me Tuesday, the surgeon tomorrow and the lactation consultant on Thursday.  Next month, we’ll see the cardiologist and audiologist and then the geneticist when she’s six months old. 

The pediatrician’s visit went well.  Natalie had gained 3 ounces since being home and was up to 7 lbs 4 oz!.  She’s been eating more than required almost every feeding and seems hungry most every feeding.  Our concern about her big belly turned out to be fine.  She is just growing and the doctor said her scar looked good.  Dr. Musgrave said she could hardly hear the holes in her heart so they must be very small.  The doctor said she was very pleased with Natalie’s progress and said we were doing great.  She mentioned that they would test Natalie for thyroid, blood counts and celiac disease because of the Down’s.  I’ve since looked that up on the internet.  We knew about the thyroid and she tested fine in the hospital.  The blood counts can test high for white blood cells and look like leukemia in newborns with Down’s.  I think they said it was called transient leukemia but usually went away within a few weeks.  I think her blood work was fine in the hospital but they will test again at her 2 month appointment.  Apparently, leukemia can be more common for Down’s kids also.  Celiac disease is serious gluten intolerance.  It looks like that seems to be low percentages but it is higher for Down’s kids so they test for it.  More things to worry about but as David reminded me to night, just look at how well she’s doing right now and don’t worry about all the possibilities of what might go wrong.

My OBGYN visit was fairly routine- the c-section seems to be healing fine.  Natalie and I had a very rough night on Monday.  We think she’s picked up Zach’s nasal congestion.  I couldn’t seem to get her back to bed in the wee hours on Monday night/Tuesday morning.  David had a midnight release at work so was just as tired as I was.  After I finally got Natalie to sleep at 6, I got back in bed and Julia came in with a bad dream.  We slept for about a half hour and then got up to get ready for school.  When they left for school, I got in bed for about 15 minutes before Natalie was up again.  We were supposed to see the lactation consultant early Tuesday but I had to postpone cause I was too tired.  David was able to get up a little bit after Natalie’s 8 o’clock feeding so I could get some sleep.  We called the pediatrician about the nasal congestion and ended up letting Natalie sleep in her bouncee seat the rest of the day with great success.  Hopefully, that will help her tonight as well.

We met with our Early intervention coordinator, Nia, in the late afternoon Tuesday to develop Natalie’s IFSP (something Family Service Plan).  It took a really long time (2 hours!) but we got it all on paper.  Nia is going to talk to a physical therapist to come out to our house soon.  Zach and Julia did a great job playing outside the whole time Nia was here.  David took the rest of the day off so was able to be here too to help fill in the paper work.  We got done so close to dinner that we took the whole family out to McAllister’s for kids eat free night.  Natalie did great with all of the commotion at the restaurant.  She was bundled up into her infant seat and stayed awake for a little longer but fell asleep on our table while we all ate. 

Missed playing our dinner game but thought I’d mention a new one we played the night before to those of you who might like to try.  This one was called “what’s missing?”  We took turns having each of us close eyes while everyone else took something off the table.  The person closing their eyes had to guess what was gone.  The kids are really liking the dinner games.  We’ve started eating with Natalie on top of the dinner table so she gets to be part of it too.  She’s usually asleep before dinner’s over but the kids enjoy having her with us.  Here’s to something normal!

Better sign off.  Praying for more sleep tonight and good visits with the surgeon tomorrow and lactation Thursday.  Hopefully pictures tomorrow.

Amy

Natalie gets lots of Love

I was once worried that my daughter would be born on Valentine’s Day and that it would be a terrible birthday for a girl.  As I’ve been shown many times with Natalie’s birth, God’s plans are not always the same as our own. 

Natalie’s first weekend at home has gone well.  My parents came to visit so she not only got to have David, me, Zach and Julia loving on her but Nana, Papa and Aunt Jill too.  It’s hard to believe that just 3 days ago I only saw her for a couple of hours a day.  She has stayed pretty close to the 3 hour schedule the hospital put her on with sometimes giving us an extra hour of sleep at night.  She’s been fairly easy to get back to sleep too and has even been eating more than her minimum amount almost every time.  The hardest thing is feeding her by bottle at 2 am then pumping after.  I’ve still been trying to nurse but so far she latches on and doesn’t go much farther.  I’m hoping to see the lactation consultant (Lita) tomorrow while I’m at the pediatrician’s office for her first visit.  I spoke to Lita last week and she seemed to think it was still possible to nurse but it would take time.

With my parents and sister entertaining Zach and Julia and helping to get some cleaning done, David and I got to concentrate on some paper work.  I’ve got  forms for Early Intervention, forms for social security, patient information for all her doctor appointments coming up and Zach’s re-enrollment forms for school.  I feel like just when we get one item finished another form comes in the mail!  We had to figure out how much I might be able to work this year for some of the forms and it’s possible that it could be a lot less depending on how much extra time Natalie’s care will require.  We are not sure how it will work out but if I’ve started to learn anything from this experience, it is that we should

’…not worry about tomorrow, for tomorrow will worry about itself.   Each day has enough trouble of its own.’   (Matthew 6:34) and ‘the steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning…’ (Lamentations 3:22-23).

Prayer Requests:

• Natalie is having some gas pain and her stomach seems a little large to us.  She still is getting poop through so we would ask for continued prayer for her stomach to be healing.
• that Natalie will be able to nurse soon.
• for David and I to have strength on little sleep.
• for David and I to have patience with Zach and Julia’s energy.
• for the development of Natalie’s eyes and ears.  I’ve read a little of the Charlotte Down’s Society’s handbook and it seems both are a concern in the first year.

Amy

She’s Home!

We passed last night’s test so Natalie came home today.  David and I ‘roomed in’ with Natalie at the hospital last night.  We had a room one nurse described to me as a ‘cheap Days Inn.’  Natalie was in her hospital crib hooked up the monitors and David and I had a queen bed next to her.  We got there a little after 8 once Zach and Julia were settled at Grandma and Grandpa’s.  We learned how to fortify my breast milk with 1/4 teaspoon of formula and how to mix the vitamins in once a day by syringe.  The nurse brought us her milk at 11, 2, 5 am etc. and we tried to sleep in between.  Natalie had a rough time settling down after her 11 o’clock feeding.  It felt like she was up until 1:30 or so.  David took over and ended up feeding her for the 2 am feeding so I could sleep.  I was so tired by then I didn’t get up to pump until the 5 am feeding.  While we went to breakfast, she got her hearing screening and did not pass.  She was able to hear loud noises but not quiet ones.  The audiologist said that extra fluid in the ears was common with Down’s babies and she suspected that was why Natalie couldn’t hear the softer sounds.  We’ll go back in a month to have her hearing screened again.  After going over the paper work and packing up Natalie’s gear from 24 days in the hospital, we set off for home.

She did great in her car seat.  No slumping at all.  I got her from her car seat into her bed without waking her up.  She slept while we unpacked everything.  We woke her up to eat just before Zach and Julia got home.  David was feeding her in her bedroom and I looked up to see Julia running up the driveway with a huge grin on her face.  She came in the door saying, “Where’s Natalie?”  I pointed to the room and followed her in with the camera.  She kept smiling at her in David’s lap.  Zach was a little behind her and seemed to like her too.  We got her wrapped up and brought her to the living room in her bouncee seat from them to see her better.  Zach and Julia started bringing her all her toys to show her.  They fought over who would get the pacifier and then had to be told that shoving it in her mouth was not the best way to go about it.  Julia kept touching Natalie’s hair and saying, “It’s so soft.”  Natalie must not have minded because she stayed awake for a longer time than normal.  When I thought she’d had enough loving, I put her to bed and she went to sleep without a wimper.

At her next feeding, I let Julia help hold the bottle.  She told me later that feeding Natalie was her favorite thing in the world, even better than Mac and Cheese.  Now, that is some serious favoritism!  We let Zach and Julia take turns holding Natalie on the couch.  Julia went first and unfortunately Natalie cried because she needed to burp.  It scared Julia a little so she gave up holding her quickly.  Zach went after we got the burp out and Natalie really was looking at him a lot, smiling some.  I still helped support Natalie’s head but he was almost able to hold her himself.  Julia tried again and did great.  The only difficulty was they started fighting over who could do what for Natalie and had some near collisions with her.  After her next feeding, I let them try talking to her in the bouncee seat.  I took the baby around the house and let the kids take turns explaining what eat room was and what we did in those rooms.  We were supposed to end in the bunk bed room for prayer time but they were still too excited by then for bed.  Natalie and I got on Julia’s bed to pray and in the midst of Zach and Julia jumping around, Natalie kept smiling and drifted off to sleep again.  I put her back in the crib and she went to sleep easily again. 

Back again after an hour or so.  Looks like Natalie’s having some gas pain or either cold in her room.  She woke up crying like she was in pain so I wrapped her up tighter put a hat on her head and rocked her until we both fell asleep.  She had some gas when I put her back to bed.  Hopefully it’s not the start of a rough night but just in case, I’m signing off for a short nap before our next feeding.

Amy

Thursday’s the big day

Natalie is coming home tomorrow.  David and I will spend the night with her tonight at the hospital for a trial run then come home sometime tomorrow.  The kids and I are going to try and make a quick Babies R Us run then we’ll be ready.  24 days old and she’s finally making it home!

Amy

Almost Home

Natalie had her feeding tube out when I got there.  She’s now taking 55 ccs supplemented with 1/4 teaspoon of formula 8 times a day.  The formula is to help increase her calorie intake so she will gain weight.  Today she was up by 1 oz.  Her nurse said they were thinking about sending her home on Thursday.  David and I have the option of spending the night in a room in the NPCN with Natalie still on monitors before she goes home.  The hospital does that so parents feel more confident about taking the baby home.  We’re trying to decide if we can do that or not.  Zach came down with a slight cough and runny nose this morning.  When I mentioned it to the nurse, she said they might want to keep Natalie a few more days to make sure Zach’s cold doesn’t become anything worse.  I’ll talk to them more tomorrow about it.

I met with Natalie’s OT again today and learned a little bit of infant massage.  We also talked about positions to hold her so her neck doesn’t flop down and cut off her airway again.  I feel better about it but I know David is pretty worried about her.  We’re just not sure what to expect when she comes home.  She seems to be a very tolerant baby so hopefully she’ll be the same way at home.

We also met with the Early Intervention Coordinator yesterday.  We came away from the meeting a little bit apprehensive.  We’d been told before that any therapy would be at no cost to us.  Yesterday, we were told that it would be billed to insurance and at a cost based on our income.  I came away from the meeting fairly confused as to what we’d be paying for so we’ll see.  The coordinator will come to our house next week and develop a plan for Natalie’s therapy.  After the plan is in place, they have 30 days to get help to her.

Prayer Requests:

• Praise- I finally got Social Security on the phone and I got to make a phone appointment to discuss applying for SSI instead of coming to the office!
• Praise- I got the taxes done!
• Pray that the social security/medicaid application will go through the first time
• Pray that Zach will get over his cold quickly and that none of the rest of us will get it.  There is a lot of hand washing and now orange juice drinking going on over here!
• Pray for our first night as a family of 5
• Pray that nursing and eating will improve at home.  I’m not producing quite as much milk as I should but the lactation consultant thinks the stress of the hospital and not having Natalie here is a big part of it.

I should have said this sooner but thank you so much to everyone who drove me to the hospital, have been taking the kids to and from school and for all the food we’ve received.  It’s been such a relief not to have to worry those things!

Amy