Natalie Continues to Drink More from Bottle

Quick update:

1. Amy tried to feed Natalie from herself today.  She latched on but got frustrated and cried.  She drank most of her milk from the bottle.  Amy was very disappointed Natalie would not drink from her.
2. Natalie seems to recovering from the surgery well.  The surgical doctors told Amy do not need to check on her very often anymore. 
3. Natalie is making good progress on drinking from a bottle.  Previously they were planning on increasing the amount of milk she is drinking by 3cc every 12 hours, but they have decreased this to 9 hours.  However she is still retrieving nutrients intravenously, and has a feeding tube down her nose. 
4. The NICU nurse told her she does not need to get up in the middle of the night to feed any longer. 
5. Amy talked for a long time with a nurse from our insurance provider.  She gave a lot of helpful advice and good information.  It is possible that Medicaid will pay a portion of the medical expenses since she is disabled.    
6. We are starting to learn about how to keep a preemie baby safe from germs, especially in flu season.  The kids will both have to get flu shots, and she cannot be in crowds (including church) until flu season is over.  A friend of ours is just starting to organize a shower for Amy, but if Natalie is out of the hospital, she will not be able to be there.

Amy took a picture of Natalie with her feeding tube in.

More Milk

Natalie started on my milk at 2:00 on Friday.  The good news is she’s not had any stomach issues with it so looks like the repair is healing!  Because her stomach has tolerated the milk, they have decided to start increasing her amount 3 ccs every 12 hours until she gets to 55 cc.  As they increase the milk, they are decreasing her IV nutrition, TPN.  At that rate, she will be off the TPN feeding in her foot in 7 days.  The doctor said it’s possible she could go faster or slower but that was an average.  Once she is no longer taking anything through her IV, she can move to the Newborn Progressive Care Nursery (NPCN) to continue to learn how to eat.

When we got to the NICU today, she had the feeding tube in.  Though it was a little disappointing, the nurse explained that they will continue to feed her by bottle until she’s working too hard and feed her the rest by the tube.  The tube is attached to a syringe that hangs upside down on the slats of her crib.  The milk drips down into her stomach by gravity.  We got there too late for her 2:00 feeding and had to leave before the 5:00 but I should be able to feed her at least once a day while I’m there in the mornings.  If eating ever ‘clicks’ and she takes her full feeding for 3 times in a row, they will take out the tube.  We’ve had some doctors say it’s a preemie issue and some doctors say it’s a Down’s issue.  It is possible for Down’s babies to eat from bottles and even from Mommy, though, so we covet your prayers that Natalie would be able to learn how to eat.

David was rocking Natalie today when she started to cry.  He was letting her cry for a little bit just because she rarely does.  I got up to check if there was a cause and smelt it right away.  We got to change our first poopy diaper and our baby even told us about it too!

Yesterday, I brought in a bow just to see and, yes, she did have enough hair to hold one in!  I started talking to her about how pretty she looked and she smiled.  She is having gas now and I know they say that babies smile this early because of gas but she also was smiling at us when she was not able to do that.  Her nurses all seem to love her and we’ve had a couple say they are taking her home with them.  Today when I got there, one of her nurses was just about to pick Natalie up because she’d been fussing.  The nurse was so disappointed when she saw me coming in!

My sister, Jill, just called after visiting Natalie this evening.  She said Natalie weighed 6 lbs 10 oz!  She has passed her birth weight of 6 lbs 6 oz.  Jill also said Natalie took the whole 13 ccs from her in less than 20 minutes.  They’ve told us longer than 30 minutes is burning too many calories.  So, sounds like she might be picking up how to eat slowly.

Prayer Requests:

• That Natalie would learn how to eat and continue tolerating my milk
• Strength for me (Amy).  I’m getting pretty tired with the middle of the night pumping.  I did get to go to church today but the ‘excessive sleepiness’ that I was taking medicine for before we knew of Natalie really hit me hard.  I know it’s very important for Natalie to drink my milk so I need to be able to continue to stay off the medicine that helps me stay awake for as long as I can.
• For the recovery of my mom from shingles.  She’s having a lot of pain from the shingles and is really struggling with not being able to be here.
• Praise- Thank you so much for all your prayers, food, rides to the hospital.  We have felt so cared for and loved by each of you.  We pray that God blesses each of you for the part you have had in the arrival of our Natalie Grace.

Natalie drinks her first milk.

I am rather tired today, we had a production issue at work that lasted all day.  Allow me to summarize the day’s events:

1. Natalie had her first taste of milk today.  She drank 5 CCs, about one teaspoon.  She was very hungry, and had been sucking the pacifier very hard.  Both Amy today and Jill last night said she had gas, another sign that her GI track was working. 
2. Amy feed her by bottle at 2, and the nurse feed her at 5.  It took only about 5 minutes to eat.
3. They are not counting the 5 CCs toward her nutrition for the day, but are still giving her TPN intravenously.  They will not stop feeding her intravenously until she is drinking more milk.
4. Her feeding schedule has been set to 2, 5, 8, 11 (repeat am and pm).
5. Her weight was 5# 13 oz yesterday, but today was 6 lbs.
6. The resident doctor came by at 10 am.  She was very positive about her progress. 
7. Jill spent most of the day driving Amy and the kids around.  She drove Amy with Julia downtown, dropped Amy off, and went back to our house (after stopping at HT).  She then picked up Zach (with Julia), picked up Amy, took her to her office, dropped Amy off again, took the kids to Chick-Fil-A, and came back to the Hospital.  Finally she took the everyone home, where she made gluten free peanut blossom cookies.  Phew! 
8. We have had a number of meals this week.  Todays came from Amy’s office, and includes among other good food some very good chocolate cake.  Thanks everyone!

I think today was a very hard day for Amy and I.  Although Amy was excited earlier that Natalie was eating, it made her wonder how quickly Natalie is progressing, and how much Down’s will slow her progress.  We both find ourselves wondering what our child will be like in the future.  How quickly will Natalie develop?  Will it take longer for her to walk, talk, become potty trained?  I want my children to be happy, healthy, strong and successful at whatever they do.  Will I need to adjust my dreams for Natalie, or will I be able to have similar dreams for her?  What does this mean for my future?  What does it mean for our finances?  Selfishly, I saw my kids as becoming more self-sufficient, and was hoping I would have more freedom as they grow up.  I am afraid I will loose some of the freedom I was anticipating.  Some of these seem to be very selfish thoughts.

We have a lot of unanswered questions, but we are trying to take this one day at a time.  For now I have to trust in the Lord that he will provide answers to these questions, although it may take a lifetime. 

Amy has been painting the nursery for Natalie and put the following verse on her wall. Right now I am holding on to this verse. 

For I know the plans I have for you, declares the Lord, plans for welfare2 and not for evil, to give you a future and a hope. (Jeremiah 29:11)

A Great Day in the NICU

After the frustration waiting 45 minutes for the NICU nursery to open, I came to Natalie’s bed with the greeting, “Mom, what’s missing?” from the nurse.  First I thought- No photo lights-Yeah!  Then I saw the stomach suction tube was missing!  Wow, two great things in one visit but Natalie wasn’t done yet.  She’s sucking on her pacifier as if she’ll never let it go!  Sounds small but that’s a good sign that eating from a bottle or even me might be possible.  They said they might start on milk tomorrow!  I just sat there saying How wonderful over and over again when the song that I’ve been memorizing for her came to mind- “I Stand in Awe of the Presence.”  I just kept signing it over and over for her- “How wonderful, how marvelous, is my savior’s love for me.”  I waited until the last minute to leave and just held her the rest of the time.  She still has her PCVC line in feeding her the TPN solution as well as a heart rate monitor but someone that one less tube made her seem so much less fragile.

Natalie’s Billiruben count was cut in half and is now down to 9.  The nurse said it wouldn’t be unusual for it to come back up since they tried to take it down so fast.  I changed her diaper and the urine was a little brown.  She said that was a good sign that the jaundice was coming out.

Prayer Requests

• That her stomach repair would continue to work.
• That she would be able to tolerate milk.  The nurse told me her stomach is like one that has had a bad flu and is just getting back to eating.  After a bad flu, who wants to eat a steak dinner?  You have to start slow.
• That she would learn to eat from a bottle and from me.
• That we would get the help we need for her.  Already feel like we’ve got a good start and so many people willing to talk to us about their experiences.  I’m getting close to being able to talk about it with all of you- I’ve just needed time to adjust to things.

Natalie having difficulty breathing

I went to see Natalie last night.  I don’t think she liked the lights on her, she looked pretty sad.  Two lights were on her overhead, and she was resting on a blanket.  She was put on her side, and was unable to move.  The thing I was most concerned about though was her breathing.  It seemed irregular at times, almost as if she was gasping for air, or at least she was struggling. The Nurse said it was something to keep to an eye in, but did not seemed too concerned.  She did say however that they may need to put an oxygen tube down her nose if she did not improve.  The do not to intubate her, just to give her ‘a liter’ of oxygen to help her breath better.

Baby Steps

I’ve been fortunate to be at Natalie’s bed when the residents make their rounds.  They all told me yesterday she was doing good but to think of it as baby steps.  She had another poopy diaper- apparently a large one- and the stomach collection was very small.  Good news.  The surgical team want to keep her stomach on suction still for now.

I talked to a Child and Family development specialist yesterday.  She got the paperwork started for Mecklenburg county’s early intervention program.  She said we might have an appointment with someone as early as next week.  They will come to Natalie’s bed in the NICU and then to our house for therapy when she’s home.  I’m so grateful that God in his wisdom knew that we needed to stay in this house.  We had thought of moving to Union County and they do not come to the hospital for services.

Started this blog before going to the hospital today.  When I got there today, Natalie was under the phototherapy lights.  Her billi count went from 15 to 18.  The doctor said on rounds that they put 2 lights and a billi blanket on her to knock it out fast.  Natalie was not very happy about it.  She’s been liking to be swaddled but has to be left in the open for the lights to help the jaundice.  I held her hands down by her tummy and tried to keep the pacifier in to get her to go back to sleep.  I felt very helpless to comfort her since I’m not allow to pick her up when the lights are on her.  The good news is that on her first day after birth, her arms were limp when left in an open bassinet.  Today, they were flailing when left in the open.  I asked the nurse and she said her arms were getting stronger.  Praise the Lord!

 

The residents did say today that she was close to have the suction turned off on her stomach.  They would leave the tube a little while after the suction is turned off in just in case the stomach would need to bring anything up on it’s own.  After that, they will start teaching her how to eat.

Prayer Requests

• Natalie’s stomach would continue to heal
• Natalie’s jaundice would go away quickly.  I want to hold her again!
• Natalie would be able to eat.  They tell me that Down’s babies have trouble coordinating sucking, breathing, and swallowing.  Our prayer would be that she will be able to do that and not have to have a feeding tube.

Natalie Poops!

When we came in to the NICU this morning we had great news. Natalie had pooped!  Sounds funny, but that means her stomach is starting to process food (not that she is eating anything).  In addition the liquid being pumped out of her stomach have gone from dark green to yellow.  This indicates that bile from her gal bladder is starting to go down through the intestines rather than staying in the stomach, hence the poop (Ok, I just like saying poop).  When only clear fluid comes out of her stomach, she should be ready to start eating.  This seems to be going ahead of schedule: we were told it may be a week before she is able to eat.  It may still be that long, but it seems a little earlier than we expected.

This morning she pulled her stomach tube out of her mouth for the second time, she did so last night as well when Jill visited her.  This is not a big deal so long as it is put back,  however it is encouraging that she is strong enough to fight a little bit.

While we were there, the team of doctors came around for their daily status meeting.  The went over the following:

1. The diaper and stomach contents.
2. Her bilirubin count had increased from 13.2 a couple of days ago to15.2.  I believe the ‘TPG’ that is going into her blood stream can cause a higer bilirubin count.  They did not seem to concerned about this, but they want to keep an eye on this and test in a couple of days.  Amy noticed that she does look a little more yellow than previous.  She has gained a little weight, up to 6.0 oz, which was a little higher than a couple of days ago.   
3. The nurse mentioned a speech therapist will come by to evaluate Natalie.  Not for speech but for her ability to swallow food. 
4. It is possible that because she is a pre-me, she will likely take smaller volumes of milk when she does start to eat.  She will likely have difficulty adjusting to eating as she is currently not eating, but is nourishing 

Amy is starting to get a good amount of milk, but she will has to get up a couple times a night.  (Can’t help her there!)  She is planning on going to the NICU everyday as possible.  Thanks to Christ Covenant and Elana Shannon who put a schedule together, people are signing up quickly to take her. 

I am planning on going back to work on Tuesday, God willing.  I have been out for a week and a day, but I think I am ready to return. 

I am not speaking for Amy, but it feels to me like thing have started to get  back into a rhythm.  No doubt over the next month I’ll have a lot of days where I cry a lot, however somehow everything feels a little better now.  In part it may the somewhat consistent schedule we are starting to fall into.  It may be the distance we have between us and the Hospital.  Or it may be the encouragement I have received from others.  Part of this is no doubt the peace I feel in relationship to God:  I feel that somehow God has given us Natalie so that He may be glorified by Greatly Blessing us through her.  I don’t know what the future holds, but for the moment I am able to say “it will be all-right.”  I believe saying this may be my coping method.  I guess I am either in denial, or am just coping in my own way.  Time will tell.  Either way at the moment I feel I am ready to trust His plan for us and her.  No doubt I will waver in this feeling as the days go forward.

Thanks again for your thoughts and prayers.

Sunday Afternoon at the NICU

This afternoon I went with Amy to see Natalie in the NICU, where I was able to hold Natalie for about a half hour.  Last night they took the oxygen sensor off of her leg, as they are no longer concerned about her breathing.  When we got there the NICU south wing closed for about a half hour, preventing us from seeing her for a while.  Occasionally it will close unexpectedly for a number of reasons including when a new baby arrives. 

I was able to go to church, where I talked to several friends about Natalie.  A lot of people ask about Natalie and mention to us that they are praying.  I don’t think I could count the number of people who have said they are praying for or have friends that are praying for Natalie.

Other developments:

1. I think Amy had a really rough morning.  She stayed home to recover, and I think several things combined to make her very depressed. 
2. Zach and Julia spent the afternoon with Andrew and Evan Hempe, two of Zach’s close friends.  When we picked them up we had a good time talking with Chris and Melanie about Natalie and other stuff. 
3. I feel like we are beginning to catch up from a very hard week.  Today we were able to read through Zach’s school papers (he had a report card and a ‘reading meeting’ we missed).  Zach’s teachers sent two folders of papers home with him, one labeled ‘important-please read’ and another labeled ‘secondary importance.’
4. Amy is planning to go downtown everyday next week, and I will join her on Monday, Saturday and Sunday.  We have had several people offer to give us rides and/or watch the kids.  This is very helpful as Amy will not be able to drive for the next week and a half. 

Amy is home but Natalie is not

I came home yesterday.  It was very hard to leave my baby at the hospital.  David and I got to hold her again after the surgery.  She’s holding her body temp fine so was in a crib and swaddled again.  I had bought one preemie outfit before she was born and she was wearing the hat that went with it.  It was barely fitting but they said it was doing the job for her.

She was very alert for David and her eyes kept searching for our faces.  I am bringing my pump to her crib in hopes that it will go better when I can see her while pumping.  The milk has come in so that is a praise.  It was very strange and not without tears to get up in the middle of the night to ‘feed’ a baby that is not here.  I’m home from church this morning to keep recovering.  My feet are swelling so much I can’t be up for long but I did manage to get some laundry done of things we want to take back for Natalie.  She can wear hats and t-shirts that open in the front and socks.  We stopped by Babies R Us on the way home from the hospital to pick up a pump so I rolled around in the store wheel chair and found some pink preemie t-shirts.

David will take me back this afternoon while the kids have a play date, I think.  Zach has been very cuddly but Julia has seemed fine.  This morning, David was having a hard time getting her to wake up and get dressed.  She just seemed that she could not stop crying.  She is not a morning person so it’s not too unusual for her.  I ended up sitting down and rocking her for awhile, though, to try and calm her down.  I think it did us both good.  My lap is getting bigger as the belly shrinks but sill not enough room for both kids with out pain for me so Zach was sad he didn’t get any ‘Mommy time’ before they left for church.

David’s going to take one more day off so he’ll be able to bring Zach to the orthodontist Monday.  He’s going to try and go back Tuesday.  He said he thought he could do it but might have to take some breaks in the car every once in awhile if things get hard.  I think David’s spoken to people at church to help create an on-line signup sheet for rides for me starting Tuesday.  My OBGYN also wants to see me Friday (1/28) to see how I’m emotionally handling everything.

Prayer Requests:

• David’s first day back at work would not be too stressful.
• That David would remain seizure free.  He’s doing great with his medicine but stress and tiredness can also contribute to seizures for him.
• That Zach and Julia will still feel loved by their parents in the midst of all the shuffling around we are having to do with them.
• That Natalie’s stomach pump would turn clear and the repair would work.
• That Natalie would be able to learn to eat quickly so she can come home.
• That I can accept this precious gift God as given us in a form we did not expect.
• That God will sustain both David and I with the many trips to the hospital and having to leave Natalie there as well as in the managing of many details of her upcoming care.

Breathing Tube Out

My first time to enter stuff into the blog so we’ll see how it goes…

Went to the NICU after Zach and Julia left with David for bedtime.  Lack of sleep caught up with me once we knew the surgery was over so I finally got a nap most like in mid-sentence to David!  Slept a lot today thinking they were going to call us down to the NICU when she was ready. 

Zach and Julia came for dinner and a movie.  They were so excited to see me and, of course, hormonal me cried when I saw them.  They had pizza a friend had brought us and we found some ice cream in the Maternity Ward freezer that the nurses let us have.  We watched the ‘Princess Bride’ for what seems the 100th time since last month.  I ended up falling asleep right away and they watched the whole thing.  I wheeled out with them and then went to the NICU.

I have expected twice the amount of equipment hooked up to her as this morning so wasn’t sure she was our baby or not.  The breathing tube had been removed and she’s naked again under a temperature lamp so they can observer her stomach.  She seemed smaller to me but they hadn’t weighed for the night yet.  She was down to 5 lbs 12 oz yesterday but since her neighbor is only 2 lbs she’s still weighing in as one of the ‘big’ girls in the south wing.

I couldn’t pick her up yet but I was able to get my face close enough to hers that her hand was brushing my chin a bit.  I sang to her and she opened her eyes in what seemed to be her telling me an opinion of my voice.  Still looking for a special song for her.  I’ve used hymns before for the other kids but wanted a song that fit her life and name so far.  Hope to find some inspiration at home.

I was only there about 1/2 hour and came back up to pump.  My milk is very close to coming in so I think each day it will get a little better.  They think she’ll start with a teaspoon of what I’ve been able to pump in about 5 or so days once the intestine is working and she starts delivering us dirty diapers.  Can’t wait to change that one!

I’m set to go home tomorrow afternoon and we’ll start the challenge of getting me back here.  Still in a bit of pain and stiff from the C-section but getting better all the time.  Thank you so much for all the offers of help.  Right now, we’ve able to stay on top of things only 1 day a head of time so hopefully, we’ll start figuring out next week soon.

Amy

Natalie’s stomach surgery went well

Natalie had her surgery this morning at 9:30 to fix the her duodenal atresia.  We were able to see her in the NICU before they took her into the operating room.  I was able to hold her for the first time she was born, I feel like that has helped me to bond with her a little bit.  The nurses then put her in an incubator and carefully rolled her down the hall to the OR, where we were met by the anesthesiologist and several OR nurses.  They took Natalie to the OR after we  said goodbye. 

After she went to the OR, we went up to the room to wait and catch some sleep.  I have been feeling very tired and nauseous at times, but I am beginning to think it is just because of the stress.  The sleep really helped me to feel better. 

At about 11:00, they called us and asked us to come down to the OR waiting room.  After about a half hour, the surgeon, Dr. Morton, came and told us everything went well.  He said there were ‘no surprises.’    

Natalie was taken back to the NICU where she will be in recovery for the next couple of days.  She is being intubated for the time being until they think she is no longer in pain.  She is in a lot of pain right now.  The medicine they give her to take away her pain could cause her to stop breathing if she was not intubated. 

Other developments:

1. It could take one to two weeks before they are able to put a feeding tube down her throat.  At the moment she has a tube down her throat into her stomach that is vacuuming bile out.  The liquid is a dark green color.  When the liquid turns clear, she will be able to start eating.  That could take anywhere from one to two weeks. 
2. I think the next couple weeks will be difficult while we try to get back and forth to the Hospital.  Amy will not be able to drive for the next 2 weeks.  I could take her one way to or from the hospital, but I don’t know know what we can do with the kids.
3. Right now, Natalie has a number of tubes in her: ET tube for the venerator, PIC/PCVC line in her foot which runs up to one of main arteries though which she is getting nourishment, and a couple of IVs.  She also has a Replogle tube down her throat to suction the bile out of her stomach.   
4. Amy thinks we are in the worst room on our floor.  It is the smallest, with two storage closets next door, not to mention the Helicopter that lands every so often.  However she thinks the staff have been Great, and I agree.  
5. We have been shuffling the kids to and from school, Grandpa’s house, our house, and to other’s houses over the last few days.  My sister has been a big help in taking care of the kids, and we have had several people offer to pick up the kids for school and play-dates.  We want to give a big THANKS to those that have helped with them.  We may not be able to take advantage of all of the offers, but they all are very appreciated.  Mostly though I think Zach and Julia miss Mom and Dad.  They are coming up to the room tonight to see us, eat pizza and watch a movie.  I will go home with the kids tonight and rest at home. 

We continue to covet your prayers.  At the moment we are just taking things one day at a time, but at some point we will need to think about some of the practical issues of raising a downs child.  We are trying not to worry about that today.  Those who know me know I can be very anxious, however by God’s grace I have not been.  I believe God is giving me peace and has been our “strength in times of trouble.”  It feels like there is many struggles ahead of us that we cannot begin to fathom.  Because the future is so hard to see, right now I can only trust God for the future.

Thanks again to everyone that has been praying for us and helping us!  Thanks to everyone who comments via FB, twitter, and email.  I won’t be able to respond often but we seem them, and they encourage us.   

Natalie Confirmed to Have Down Syndrome

(David) Amy wrote a long post today with a lot of really good information. However I want to first say how much I appreciate everyone’s prayers, encouragement, and offers of help.  We appreciate this very much.  The list of those who have encouraged us and offered help is larger than I can count.  We are overwhelmed right now, so please have patience if we don’t respond right away.  We will likely come back around to everyone when we have the chance.

(Amy) Today the Doctor confirmed that Natalie has Down’s syndrome. They took a sample of 5 cells to study the chromosomal count. Healthy humans have 46 chromosomes grouped into pairs (23). Down’s occurs when the 21st chromosome pair has an extra chromosome. Natalie’s chromosome test confirmed that she has 3 of the 21st chromosome. They tested 5 separate cells from different locations on her body, and in all cases they had 3 of the 21st chromosome. Next week, we’ll get the results of a 20 cell sampling but it’s not expected to be any different.

Tomorrow, we’ll visit with Natalie at 7:30 and prep for surgery at 8:30. The surgery should start at 9:30 and take 1.5 to 2 hours. In the surgery they will connect the separated sections of the duodenum.

Currently she has a suction tube going into her stomach to remove the contents. It collects in a small jar outside of her body.  After the surgery, we expect the contents from here stomach to be green for a period of time. When the contents have gone from greenish color to clear, we will know the stomach has been healed enough to allow her to eat. They will then put a feeding tube into her nose and start giving her breast milk.

So far, I’ve only been able to pump a few drops of milk. I am desperately trying to pump more milk, but the lactation consultant is not worried. With Natalie’s early birth, her not eating on me, it’s not unusual for a slow start. The lactation consultant told me that the initial milk actually has healing enzymes for gastrointestinal issues, so I’m praying I’ll be ready by the time Natalie is able to eat.

Once she’s feeding well we should be able to take her home. Her echo on Wednesday did show 3 small holes in the membrane between the left and right heart ventricles, but they have told us that children usually grow out of those.

The genetics doctor told us today that we should start trying to get in-home physical therapy for her from the county by 2 months and definitely raise a ruckus if we are not set up by 4 months. We will see the genetics doctor at 6 months and a year for checks ups, as well as her regular pediatric visits. There seem to be a lot of support groups for Down syndrome parents in Charlotte, so will start looking into that soon.

Our immediate needs:

1. Prayer for the surgery Friday.  Her surgery starts at 9:30 am.  Pray that the doctor’s have wisdom, she avoids infection, and the surgery is successful.
2. Rides for me (Amy) to the hospital between 9am and 12am for the next 2 weeks while I’m unable to drive. Possibly afternoon rides if I can find childcare for Zach and Julia.
3. Possible afternoon play dates for Zach and Julia so I can go to the hospital.
4. Continued rides to and from school for Zach and Julia- thank you SO MUCH to all of you who have been helping.
5. Possibly a ride for Zach to the orthodontist on Monday, January 24th. Our orthodontist is Dr. Case at Stonecrest. They need to re-install his thumb crib that we are hoping will cure his thumb sucking.
6. Prayer for my milk to come in.
7. Prayer for finances. We are facing a lot of medical bills and, as I haven’t been able to work much lately.  We are getting concerned how those bills will work out.
8. Prayer for Zach and Julia. Zach is really missing me and upset that he can’t see Natalie. The time I’ll have to be away from them will also be difficult for them.
9. Pray we can get our taxes done so we can turn in our financial aid info to the School.

(David) Also I would like to add that the Elders from Christ Covenant came over to us today and prayed for us. Gabe prayed and read Psalm 46 to us.  Amy talked about what Natalie’s name means to her. Natalie literally means ‘born on Christmas day,’ but she has taken her name to mean ‘a gift from God.’ So Natalie grace is “God’s gift of grace.”

God is our refuge and strength,
    a very present [2] help in trouble.
Therefore we will not fear though the earth gives way,
    though the mountains be moved into the heart of the sea,
though its waters roar and foam,
    though the mountains tremble at its swelling.
        - Psalm 46: 1-3

Wednesday Afternoon Update

Short update:

1. I (David) am feeling a little under the weather.  It may be a just exhaustion, hopefully I am not coming down with something.  Earlier I was very nauseous, but after resting the nausea has gone away.  I think I may have eaten too fast a while ago:  I was very hungry but didn’t get around to eating anything until about 10.  When I did eat, I ate a lot and quickly.  My stomach may have been reacting to that.  I am still tired, hopefully with more rest, I won’t get a fever and will be able to see Amy tomorrow.
2. Amy spoke to the Geneticist today.  She believes, based on how Natalie looks and her stomach issues that she has downs.  The test comes back tomorrow at 1:00 pm, so please be in prayer.  She said she expects to find a small defect in Natalie’s heart, as downs children usually do.
3. We are hoping to get a ‘child life specialist’ to come and speak to Zach and Julia about the baby.  We are not certain what to tell them, but we don’t want to tell them anything until we know for sure.  How do you explain downs to a 4 year old?
4. Amy is still not able to have real food.  Hopefully she will soon.

Update on Amy and Natalie

Here is a quick update:

1. Today may be rough for Amy, the second day of recovery is usually a little rough.
2. Walking is difficult right now
3. Baby is very hungry, but is not able to eat until the ‘duodenal atresia’ is fixed.  She is being nourished via IV. However Amy has begun pumping.  She may need to rent a pump.  We have a used one, but are not certain if it will work well.
4. Amy is on a liquid diet, she hopes to have solid food today.
5. Natalie has great lungs, is able to breath and cry well.
6. Amy visited the baby last night.  We have to create a list of people who can visit her, but only 4 people can be on that list.
7. Natalie has lost 3 oz, but that is expected.

We have been getting lots of offers to help, and FB responses etc. THANK YOU, that is encouraging.  However we may not be able to get back to everyone quickly though.  Please feel free to FB friend me if you would like!  (or even twitter).  My info is above.

Natalie Grace Born, in NICU

Amy gave birth to Natalie Grace today around 3:00.  Amy is doing relatively well and is in recovery.  However Natalie had several issues that were indicators of downs syndrome including ‘sandal feet,’ slanted eyes, and weaker muscles.  In addition, Natalie has ‘duodenal atresia’ meaning her stomach is not connected to her small intestines.  They took her to the NICU, where she was being monitored. 

I am rather tired so allow me to summarize what I know:

1. We knew she had an ‘duodenal atresia’ before the C-Section, and knew this could be an indication of downs syndrome. 
2. It is not yet confirmed that she has downs syndrome.  We will know for certain when the blood tests come back in about 48 hours from birth. 
3. The pediatric surgeon Dr. Norton explained duodenal atresia as a separation of the stomach and the small intestine.  He has seen the X-Ray and is planning on performing surgery on Friday.  They expect it may take another week after the surgery before she starts eating. 
4. When asked how long we should expect the baby to be at the Hospital, Dr. Norton said it depends on the patient, but could be 3 weeks.
5. Tomorrow (Wend) she will have an echocardiogram to confirm there are no issues with the heart. 
6. She was 6.6 lbs, 18 inches.
7. In the NICU she has an iv, and is being given sugar water to strengthen her.  She cannot feed until stomach issues are resolved.
8. Amy was not able to eat for a while until she recovered from the C-Section.  I just spoke to her and she is munching on a few gram crackers.  She is very tired, but hopes to see the baby tonight in the NICU
9. Only two people can visit the baby in the NICU at one time, and one of those has to me me or Amy.  Children under 13 (I think) cannot come in the NICU.  Zach and Julia will not be able to see the baby for a while.
10. Natalie has a tube in her mouth to get fluid and air out of her stomach.

Thanks for keeping us in your prayers.  For those who get this on email, I will attempt to keep our blog and twitter up to day.  You can view both at http://davidandamyfamily.blogspot.com/

Amy went in to hospital will have Amniocentesis on Tuesday, may have C-Section

The doctors are planning on performing an Amniocentesis on her tomorrow morning at 9:30 am.  They hope to reduce the amount of embryonic fluid, while determining if the babies lungs are mature enough to be delivered.  If they are, they will likely perform a C-Section around 2:00.  If the not, hopefully she will be comfortable enough to keep the baby for a few more weeks till the scheduled C-Section on the 4th.  She is staying at CMC downtown overnight.  I (David) am at home overnight, and will join her tomorrow morning for the procedure. If God is willing, Natalie may be born tomorrow!

Amy May Have ‘Amniocentesis’ Soon.

Amy has been having a good bit of trouble recently, she is having a little trouble breathing-meaning it seems she is not getting enough air.  She has been getting progressively more tired/less energy over the last few weeks.  She is going to the doctor today for a checkup, and will discuss the possibility of having an ‘ambio centesis’ to reduce the fluid around the baby.  This will hopefully help her to feel much better, but could possibly cause her to go into labor.  It is not certain if/when this will happen, but if it does it will likely happen in the next few days.  This will have to be done in the hospital to be ready if she does go into labor.  If you pray, please pray for her comfort, that we can reduce the fluid without an issue, as well as the health of the baby.  Thanks!

Natalie and Amy Status Summary

We just wanted to take a moment to summarize where Amy is for those that never got a summary. 

Amy is 34 weeks pregnant with our third child (Natalie) and went for a level 2 ultrasound on 12/28 because I have too much amniotic fluid.  The baby’s brain, heart, kidneys looked normal. The ultrasound did show that she has some sort of blockage of the intestines. It could be a structural defect or a genetic defect. They called it a 'soft' marker for Down's Syndrome. When she is born, we will watch to see if she's able to eat anything and, if not, she will need surgery to remove the blockage. As for Amy, the amniotic fluid could continue to build and eventually cause me trouble breathing.  I’m at that point now so, though not on bed rest, I can’t go out much.  They told me yesterday that if I start having chest pain from the fluid pushing on my lungs, they can remove some of the fluid but there is a high risk of breaking the water.  If they remove some of the amniotic fluid, we can have a test done to tell more about Down's syndrome.  The doctor is moving up the C-section to the last week of January but told me yesterday he didn’t think I’d make it that long. 

David’s doctor did tell him he could start driving again on January 30th, but because we aren’t sure how we’d get him home if I had to go to the hospital, he’s started driving to work again. 

Thank you so much for everyone’s prayers and help!!!  We have a lot of people praying for us and offering to help.  We really appreciate it, and plan on taking up those offers.  

Ultrasound of Natalie’s heart looks good.

Amy just got back from a doctor’s appointment where they looked did a sonogram of the baby’s heart.  Every thing looks good as far as they could tell.  The baby was moving a lot, so it was hard to get a detailed view, however the doctor believed there were no issues. 

Amy is still having issues getting around.  The doctor has said she should only go on one errand a day.  Yesterday however a trip down to the mailbox made her tiered.  At times she seems short of breath.  At the moment we are taking this day by day.