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

Zach Has a Cold, Natalie’s Weight Plateaued

Just a quick update:

1. Zach is coming down with a cold/cough.  Please pray this subsides and that it does not spread to Natalie when she comes home.
2. Natalie has plateaued, and has not gained weight over the last few days.  She is only 6 oz more than her birth weight.  The doctors are not too concerned, but are adding a supplement to the breast milk to try to get her to gain weight.

Bottles 8 times a Day

Natalie has had quite a weekend.  She’s increased from being fed by bottle 4 times a day to now 8 times a day.  They have also increased her amount of milk to 60 ccs.  She’s been loosing a little weight so they are trying to increase her calories.  It’s hard to believe that just a week ago she could barely get 10 ccs down in a half and hour with a ‘weak suck.’  The nurse today kept telling me Natalie has such a strong suck and that she’s doing very well- sometimes taking her bottle in 15 minutes.  I keep trying to nurse her but only once a day.  They told me today that once we are home that might get better but right now, getting her to eat and gain weight is the goal.

We watched two discharge videos today- Safe sleep and the Purple Crying Video.  Both gave scary statistics about problems with babies.  After the videos, we got trained in infant CPR.  All of that was a little much in one day.  We’ve been told that Natalie’s head strength is low.  David was holding her today and her heart rate dropped and alarms started going off.  Turns out that if we hold her where her chin touches her chest, her airway gets constricted.  The nurse said it would get better as her head strength increased but it made us very nervous.  Natalie had a ‘car seat test’ this morning and apparently did great.  They put the baby in the car seat and monitor her oxygen levels to see if lack of head and neck strength restricts breathing.  The nurse practitioner told me today if Natalie keeps tolerating her feedings so well, she might come home as soon as a few more days.  They are going to monitor her oxygen levels tonight to make sure she’s still getting enough air and that todays alarms were just from position.

Prayer Requests:

• that Natalie would continue to learn to eat
• that Natalie would gain weight
• that Natalie would learn to nurse
• that my dad would recover from falling off a later and hurting his shoulder.
• that Zach and Julia would love their baby sister

First Day in Progressive Care

Natalie’s new cubby is very nice.  There are two other babies in her pod of 4 but since they are both very small and in incubators, it was very quiet.  There are windows visible and the walls are painted yellow- both very helpful to keep a person from feeling like they are underground.

When I got there today, the occupational therapist was evaluating Natalie.  If I’m understanding correctly, she gave me quite of bit of good news.  Natalie’s eyes were normal for a term baby.  She’s able to make eye contact for a short time then her eyes look all around.  Her arms and legs were normal.  I asked for clarification on that several times because we’ve been told she had low tone in her upper body at birth.  She said the legs and arms were now the same.  The therapist said it was good that Natalie was able to bring her fist to her mouth for self soothing.  She tested her using a pacifier and said Natalie’s suck was very strong.  The only thing that was a little under-developed was her neck and head.  She has very little control of her head.  All of these things the therapist checked were challenges for all preemies and can just be a little bit harder for babies with Down’s.  The therapist said that she expected that Natalie would develop very close to normal milestones but could be slightly behind.  She gave me a few things I could do now to help strengthen her neck, arms and legs.  OT and PT will come work with her 3 times a week.  I’m not sure if it’s both or separate, though.  She also told me that Down’s babies sometimes have low sensory input so they like firm touch because it makes them more aware of there surroundings.  So, the ‘love pats’ that we gave Julia and Zach to help them back to sleep will need to be slightly heavier.

I nursed Natalie again today and she continues to improve.  She still took the bottle after.  The progressive care nurse said Natalie did very well with me feeding her.  She mentioned that Natalie’s current orders are 4 feeds by mouth per day but if Natalie continues to improve, they would change it to more times per day by mouth.  Once Natalie is able to drink as much as she wants for all 8 feedings a day, she will be able to come home.  On our first day in the NICU someone told me that when they ask for the car seat, discharge is close.  I still have no idea what that means but the nurse did ask me to bring in the car seat next time.  They want to test Natalie in it to see how floppy her head is in the seat.  She also said we had to watch 2 videos before discharge so we might as well do that now.  I don’t think that we are that close to leaving yet but it feels hopeful that they are starting to prepare us for that.  Also, she’s wearing the hat in today’s pictures cause her temperature was slightly cold.  Didn’t realize how used I’d gotten to seeing the hair!.

After leaving Natalie today, I finally made it to the birth certificate office.  It only took about 15 minutes!  I’ve been dreading this errand.  I need the birth certificate to get her put on David’s insurance and also to apply for Medicaid.  The social worker told me I can make an appointment with the social security office so guess I’ll try to figure that errand out next week. 

We found a possibly cool game to do with Zach and Julia today.  It’s called Beginner Dinner Games.  I found it at Brilliant Sky but I see it’s at familydinnergames.com too.  Our version is for 3-6 year olds.  I had decided to try and do a game night tonight so we felt more connected as a family.  This game is a box of cards you can pull out at dinner to make dinner ‘fun.’  Tonight’s card had a game called ‘Oven Mitt.’  We each took turns hiding something in the oven mitt and then the rest of us had to guess what it was.  David loved it as much as the kids.  It was good to see him having fun with them.  The box lists 4 ‘Benefits’ of playing the game.  Number 4 is ‘Encourages kids to eat their veggies and drink their milk.’   Now, how are they going to do that?

Amy

Last Day in the NICU

Natalie moved out of the NICU tonight, and to the Progressive Care Nursery (NPCN) after they took the PCVC line (IV) out of her food.  She has been eating well recently, so she no longer to receive nutrition intravenously. 

1. Natalie is continuing to eat more everyday.  Amy was able to feed her twice today, and at least one times she drank 55 CCs.  55 CCs was the target before she left the NICU.   
2. In addition she ate from Amy twice today, The lactation consultant came by and said that Natalie was sucking very well, but it was going to take practice to get a full feeding. She ate from her for about 15 minutes and before she gave her a bottle.  Natalie seems to drink better when the milk is warm.
3. This morning Amy got to tour the NPCN before the baby came.  It is much more private than the NICU.  The doctors think she will be able to learn to eat better there.  The room has a terrace where we can take her outside when it is not to cold. 
4. Jill went to see Natalie tonight.  She said her weight was up to 7 lbs. 2.3 oz.   
5. Someone anonymously paid for a month of Julia’s Pre-School.  Thanks to who ever generously gave us that gift!  And Praise the Lord for providing for us.    

Please keep praying for us:

1. Pray that Natalie continues to eat better.  We hope in the NPCN she will learn to eat much faster. 
2. Pray for rest for all of us.  I think the last couple of days have been hard on the kids: Julia had a very bad day yesterday.  Today she seemed much better.  No doubt she senses the stress we are feeling, and may be having the typical issues for the next youngest child when a new baby arrives.
3. The nurses talked about the possibility of a feeding tube through her stomach if she needs it.  I think they were preparing us for the worst case scenario, everyone continues to say she is doing very well. 
4. As Natalie gets closer to coming home, I am beginning to be anxious about her future, and what that means for me and the family.  Much more could be said about that, but I am tired and will have to leave that for another post. 

Baby Shower For Amy

A couple of our Friends, Melanie Hempe and Ashleigh Long, want to give Amy a baby shower Saturday, Feb 19th.  They asked me to put the following invitation on my blog.  Please contact Ashleigh Long (ashleigh.long at gmail) for more info or to RSVP. 

NICU Day 15

Today we didn’t see much improvement.  I tried to nurse her again and it didn’t go very well.  I still have not been able to meet with the lactation consultant and I’m hoping they will be able to help.  Tomorrow, the kids will be with Grandma and Grandpa so I’m going to drive and stay later hoping to catch the lactation consultant.  Natalie was up to 7 lbs 1/2 oz today.  The doctor said on rounds that they might try to increase her milk more so that she’d only be on the TPN one more day.  The doctor thought Natalie might do better with learning to eat in the Newborn Progressive Nursery since it was quieter and more private.  Once she’s no longer taking the TPN in her leg PCVC line, she’ll be able to have the line removed and can go to the Progressive Nursery.  They didn’t really know how long she’d be in the Progressive nursery.  The doctor said if she wasn’t able to take all her milk consistently she’d have to have a tube put into her stomach.

After I tried to nurse her, I gave her the bottle.  She did take it all but very slow- just making it in the time limit.  I found out that they only try the bottle a few times a day and if she appears to be very sleepy, they just put the milk down the tube.  Not sure if that means all her night time feeds or not.  I saw yesterday’s nurse and she said that she gave Natalie the tube at 5 because she’d used the bottle at 8, 11, and 2 and the nurse thought she needed a break.

We also had a visit from the occupational therapist.  She’s going to come back tomorrow too to evaluate Natalie.  Not quite sure what they will do but OT (occupational therapy) and PT (physical therapy) will both work on her in the hospital.

Prayer Requests

• Continue to pray that she will learn to eat.  I keep thinking she’s improving but then hear from some that she’s doing well and some that she’s not.
• Pray for Julia.  I cried a lot in front of her yesterday and this morning. Sounds like she had a very rough day at school.  Don’t know if her behavior is related to that because she seems very tired too.  I ended up rocking her this afternoon to talk about what happened and we both fell asleep for well over an hour.
• There is a couple in the NICU that seem to have broken up over the birth of their sick child.  We’ve been told not to talk to other parents because of privacy issues.  It breaks my heart to see them come in to see their child in shifts.  I’d ask for prayer for opportunity to maybe talk to them (and courage!) and healing of both their hearts.

Two Weeks Old

Natalie is two weeks old today.  Seems like she’s come a long way.  She’s up to eating 25 ccs of milk and still increasing every 9 hours.  The nurse told me she woke up at 8 am crying from hunger and gulped it all down.  If she stays at the same rate of increase, I think that means she will be off the TPN in her PCVC line by Friday or Saturday.  Once the PCVC line comes out, they will move her to the Newborn Progressive Care Nursery and continue to help her learn to eat.  She’s had major improvement since she first started on the bottle, though, so hopefully that wouldn’t be too long. 

I tried to nurse her yesterday.  She latched on for a short time then would get frustrated and cry.  I was suppose to have help from lactation today but they weren’t able to come until tomorrow.  So, it was just me and my girl.  She latched on and figured it out!  She wasn’t able to get a full feeding from me but she lasted a good 12 minutes and didn’t even cry.  Can’t describe how hopeful that made me feel.  I gave her the bottle afterwards and she drank almost all of that too.  So, for at least 8 am and 11 am feedings, she didn’t need to use the tube.  Need to call later to see if the afternoon feedings went as well.  Her weight was also up again to 6 lbs 12 oz so guess the milk is filling her up. 

Between nursing and bottle feeding, I tried to burp her sitting up and never seemed to get one.  I’ve been told she’s a ‘quiet’ burper.  I tried with her up on my shoulder and she didn’t seem to like that position.  It felt like she was moving her head to try to get back to laying down to eat.  That’s kindof exciting to me because she is supposed to have low upper body muscle tone and head control would be the first thing she’d probably need help with. 

So, for at least 8 am and 11 am feedings, she didn’t need to use the tube.  Need to call later to see if the afternoon feedings went as well.  Her weight was also up again to 6 lbs 12 oz so guess the milk is filling her up. 

Other stuff:  We’ve got a meeting with the county next Monday to discuss what we want them to work on while she’s in the hospital.  Usually, they work on whatever she needs to be able to go home.  In Natalie’s case, it’s just feeding.  I was also told that the hospital’s physical therapist should be coming by soon to work with her.  If I’m not there when they are, they will leave notes on her crib indicating what they are working on.

Prayer Requests:

• for Zach and Julia to still feel loved by us.  The kids caught me crying today.  Julia’s response was “Zach, come quick, Mommy’s crying.”   I try not to let them see me cry but God sent my babies to find me as I was alone in Natalie’s room. 
• for Natalie’s continued improvement in eating.
• for us to remember Natalie is an individual and only God knows and has plans for what she will be able to do.  It’s so easy to get trapped  by the limitations that everyone tells us about and to hear what she ‘might not’ be able to do as ‘never.’
• my biggest worry has been about her future. I would ask that God would show me and David daily the ‘plans for welfare’ he has for her and that they would ‘give us a future and a hope.’  David talked about Jeremiah 29:11 the other day in his post and it is written on the wall above Natalie’s crib.  Although, I would never have chosen this path for myself, I’m begging God to show me to trust Him that His way is best.

Amy