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