Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Wednesday, July 18, 2012

2 days old

July 18, 2012

My little Warrior Prince Ameir

Finally mommy got some sleep.  Still not a nights rest, but enough to say it happened.  After Ameir was put back on the vent last night I was a little worried about him, I did call after every assessment to see how he was doing and if he was resting. 

This morning I went upstairs to visit and found Ameir sunbathing.  Well not really sunbathing but close to it.  Ameir's bilirubin was slightly elevated so he was put on photo-therapy lighting today before he actually got jaundice.  They have to protect his eyes form the light so he has sunglasses on :)   

Also I noticed the little tube in the air behind him.  Guess what that is?  Formula!  They started feeding my baby via the oral feeding tube.  Now I really need my milk to come in for Ameir.  I am so proud of my little man getting stronger and being able to tolerate new things.  His first feed was 2ml's of formula which is about half a teaspoon. 


He has some big feet for such a little guy.  His feet are as long as my pinkie finger.


On my way out his nurse told me that she was going to be taking out his umbilical artery line in an hour or two.  Yay, another step forward. 

This is his blood pressure cuff.  I can't believe how small it is.



He's HERE!!!!

July 16 2012

Ameir Lawrence Reed
(yeah, we changed the spelling to make it as original as our little man)
Born July 16, 2012 at 1:04pm
weighing in at 3 pounds 15 ounces and 17 inches long.

This is his very first picture.


Here is how my little man arrived:

Sunday night July 15, 2012 - Kitchen tile down.  One item off my to do list before baby Ameir was born.  I admit I probably shouldn't have helped move the cabinets and stuff, but I didn't lift a thing, mostly pushed while Andrew lifted.  We finally made it to bed around midnight.  Very shortly after I laid down I began having a few contractions so I took a tylenol and moved to my other side and tried to sleep them off.  Well, 3am rolls around and I could barely take the pain so I decided to grab a notebook and pen to see how frequently the contractions were coming.  There I lay writing down times and after about 40 minutes of contractions I realize they are coming every 3 minutes, so I decided to try a hot shower.  It's not working!!!  I call my doctor at 4am and he instructs me to come into the hospital.  I had packed Ameir's bag weeks ago but hadn't packed mine so here goes grab what you can in case you aren't coming home.  Today marked 36 weeks pregnant.  I had 8 more days before my scheduled c-section and was lucky to have done the laundry earlier in the week.  I tried not to wake Adrianna it has been so hot these past few weeks our electricity bill is going to break us!  Adrianna was sleeping in the lounge chair in our bedroom so we only had to run one air conditioner upstairs and as soon as I turned the light on she pops up "what is going on?"  I tell her I am coming in to have the baby checked out and have her go back to sleep.  I hadn't even woke Andrew up yet so I wake him up to tell him I am just coming in to be checked out and see what is up.  I never experienced labor with my daughter so I had no idea if this was real or not so no point in dragging him up to the hospital if it was not for real.  I drove myself into the hospital.  I get here around 5am and called my mom just to have her on reserve in case I was staying.  My doctor was paged and a resident doctor came in to examine me.  After about 45 minutes of regular contractions every 2-3 minutes I was checked and I was not dilated so she called my doctor and they were going to send me home after watching Ameir on the monitor for a full 20 minutes (he was moving a lot and we didn't have a full 20 minutes of his heart rate).  Well that 20 minutes roll past rather quickly and a nurse comes in and says they are going to start an IV and told me nothing else.  The resident OB comes back in to say that my doctor will be up in a little bit because Ameir seemed a little flat on the monitor.  During contractions a baby's heart rate is supposed to accelerate and Ameir's was just staying the same around 125.  I called my mom to get up here thinking something was not quite right.  My mom arrives and shortly after so does my OB.  He offered me medication to stop my contractions but said that they would likely continue due to the fact of my fundal height being over 40cm's for so long my body was saying that my baby was "ready" to come out (Ameir was not really ready but my body had no way of recognizing that the measurement was from the extra fluid).  I was also offered a c-section at noon today.  He explained that the difference of 8 days is not significant enough to aggressively stop labor.  I panicked and declined the c-section at the moment.  After he leaves the room and I talk it over with my mom I decided that having contractions like this for the next 8 days may do more harm to Ameir's heart and body so I called the nurse to let her know that I would take the c-section this afternoon.  I would have never forgave myself if something bad happened to Ameir had I went home.  She called my OB back and let him know what I decided.  I still got the medication to stop my contractions but it did not work after 2 hours so I am glad I made the decision to go ahead with surgery today. 


The NICU team comes down to talk to me and tell me everything that will go on and assure me that they will be in the OR.  The CRNA that will be doing my spinal comes in and talks over with me how that all works.  12:30pm my nurse returns and says it is "go time".  I get back to the operating room and can't believe how many people were in there.  All these people waiting on my little man meant so much to me that they all cared about him as much as I do.  We had a few minutes where I thought I was going to pass out when the CRNA was starting my spinal.  It seemed to be taking forever to get it going.  I NEEDED to be awake no matter what so I sat through the pain of her fishing around in my spine to get the right spot.  I kept telling the nurse in front of me that I was too hot and going to pass out.  So they started fanning me and I got the feeling I was going to sleep not because of anesthesia but due to passing out.  One nurse returns quite quickly with a little white stick and waves it at my nose, I immediately perked up, those "magic sticks" sure do work wonders.  It turns out that the needle was too short and she needed one just a hair longer.  I can't believe it this is it, the day I have been waiting for, my little man was really going to be here today.  My mom comes in and sits at my head and surgery begins.  1:04pm Ameir is born and I don't hear him cry. 

I am ok though my CRNA is standing at my head telling me what she can see with Ameir and my mom is not even able to snap a shot because there were so many people from the NICU around him.  My CRNA was watching Ameir's heart monitor and his heart was remaining stable and her telling me was reassuring enough.  I hear them say bring in the transport isolette and I was told he will be wheeled past me so I can at least look at him.  Then the NICU doctor then says he will carry my baby to me so I could see him.  Cue the tears.  My mom was able to get a few pics of him as they were working on him.  Just moments later the doctor showed me my little miracle.  Seeing him took my breath away. 



My sister Melissa was waiting in the lobby just across from the elevator where Ameir would be riding up to the 5th floor.  She got a picture of him for the 100 plus people "stalking" my facebook page for the news.
My surgery was quickly wrapped up and I was on my way to the recovery room by 1:45pm.   I knew that my mom wouldn't be able to go up to the NICU for at least an hour so she stayed with me to finish surgery and then went back to recovery with me.  That hour passed so the nurse called to see if the NICU was ready for my mom to come up.  They said give them 20 more minutes and she could go up.  Motherly instinct sets in and I worry a little bit.  The time passes rather quickly and she goes up to see Ameir.  She stays up there for a little bit and speaks to the doctors and comes back to my room at 4:30pm where Melissa and I are patiently waiting to see how he is doing.  Ameir was put on a vent to help him breathe and I had to wait until I could move to the wheel chair on my own to go up and see him. 
Around 5:30pm the doctor from the NICU comes down to talk to me.  He said Ameir was not oxygenating his blood very good and his lungs are not fully developed.  We knew he was behind in gestational age by about 3 weeks so this was not a huge surprise.  His lungs are more like an early 30 week baby rather than a 36 week baby.  He explained that he did have one episode where he destatted enough to have to be bagged.  He talked about the vent and the amount of oxygen Ameir was requiring and did say they had one more vent available if this vent was not working and if that vent did not work he needed to go the the University of Michigan.  All I asked was that my daughter be able to see him.  The NICU is under restriction to parents and grandparents only at this time due to RSV outbreak and I was told that she likely may not be able to see him while he is in the NICU.  The doctor did say he would see what he could do to arrange her a visit with him. 
Andrew and Adrianna arrived and I showed them pictures of our newest addition.  Around 7:15pm we got a surprise phone call from the NICU, Dr was going to examine my daughter and if she was well and showing no sign of illness he would let her see Ameir for 5 minutes.  I was not able to go up yet so Daddy got to meet his son at the same time Adrianna got to meet her little brother. 




9:15pm I finally get to go upstairs.  Andrew and I go up to see Ameir together.  I get an update on his status and find out that they gave him a little bit of sedation earlier after the episode and he is doing quite well with the vent and they are giving him minimal amounts of extra oxygen to help him breathe and his vent settings are relatively low so he is not considered vent dependent. 

I call every couple of hours to the NICU to check on him and by my 3:00am phone call he is on room air with a vent setting of 30 and his breaths are around 55.  So only a little over half his breaths are assisted. 

July 17, 2012
1 day old
Ameir had a really good night last night.  This morning he is on room air and the vent is set at 20.  He did have a slight elevation is his CRP so they wanted to get some antibiotics on board to clear out any infection he may have. 

This picture is of me "feeding" him. They have me pumping and soaking the colostrum in q-tips to put into his cheeks and on his tongue. He seems to like it, he rubbed his tongue on the q-tip when I put it in his mouth. 

Can you imagine my surprise when I go upstairs and see this this afternoon?  Yep, that would be my baby barely 24 hours old breathing on his own!!!

I got the official update from the NICU doctor his chest x-ray from today is better than it was yesterday and the ECHO of his heart only shows a PDA.  Every baby has this and with a full term baby it closes within hours of birth.  Ameir's is starting to close but it has not closed yet, he assured me that this is the case with all preemies and it is not specific to Ameir.  He also had an ultrasound of his brain which is completely normal.  I LOVE GOOD NEWS!!!

I completed Ameir's birth certificate today.  Andrew and I talked last night and decided to spell his name a little different (baby name books show Amir).  Ameir Lawrence Reed it is official and on paper.  We think it fits him perfectly.  My initials before we got married were AME and having his dad's middle and last name he has both a part of me and him in his name. 

Here is the crib card the nurses made for him.

Late this afternoon I go back up and visit my little warrior.  Ameir is back on the vent.  I was crushed but ok with the decision because I don't want him struggling to breathe on his own.  He does not like his assessments very much and after watching what it involves I don't either.  He lost a couple ounces and today's weight is 3 pounds 11 ounces, his nurse said this is not too bad.  I got to take his temperature.  His nurse asked if I wanted to change his diaper, I declined because he was he was already upset with the assessment and touching him makes his breathing worse so I let her do it quickly.  I  had to watch him cry but you don't hear anything because of the vent.  Not being able to hold my baby when he cried was the worst feeling in the world and I cried today for the first time.  I just put my hand on his head until he stopped crying.  I want so much to hold my baby and have done well with not holding him until I had to watch him cry.

I sat with him for over an hour.  His vent setting remains pretty low between 20 and 30 so it is just supporting his own breaths.  They have had to add a little oxygen at times but mostly when they do his assessments or suction his mouth and throat.

I called to check on him every couple hours through the night and he remains stable.  I asked about removing the vent again and was told maybe, but probably not because it was too soon.  I would rather the vent remain in so he is not working so hard to breathe and gets to rest.  Plus I don't want him to have a sore throat. 

Tuesday, July 3, 2012

34 weeks....steady growing

7/3/2012

34 weeks 1 day

Today I had a growth scan.  I love it when I get good news.  I prayed for Amir to weigh 3 pounds 12 ounces, and after measuring twice he came in at 4 pounds 1 ounce.  4 weeks ago he weighed 2 pounds 12 ounces so we were hoping for at least a pound.  If Amir was not growing it would mean that my placenta was not functioning as it should and I would have had to deliver earlier than my scheduled date.  My amniotic fluid level continues to remain stable at 34cm, while it is above "normal" it is less than the 41cm it was last month.  My belly measured 41cm today which is 1cm bigger than the last 4 weeks which means that Amir is taking up the space that was previously occupied by fluid.

It is hard to see Amir close up on the 3d ultrasounds because of all the extra fluid, but we did get a nice couple shots of his face.




Thank you to everyone that is praying for us it surely is helping.


Saturday, June 30, 2012

Remaining positive....or attempting to

6/30/2012

33 weeks 5 days

This week has been really hard for me.  Five little angels grew their wings much too soon.  Our special friend Dawn had to say good bye to baby Zavier before she got to say hello.  While they did not get to meet on earth he will be watching over her and his two big brothers and playing with the other angels while he waits to greet them at Heaven's door.  Both our little guys were due the same week and we had big plans watch our boys hit all the milestones we were told they would never achieve.  Sometimes God has plans for us and our lives and we don't know why or fully understand at the time, but we can only hope that we learn the answer as we are forced to continue life here on earth.  I am never one to say that life is not fair, but in this situation it truly is not fair.


As much as you think you can mentally prepare for something saying you have done so is much different than actually doing so.  I knew the odds from day one, 10% survival rate and although we all hope to be one of that 10% it is just not possible.

I am desperately trying to remain positive.  24 more days to Amir's scheduled Birthday 7/24/2012.  We have been listening to Amir's heartbeat ten times a day for reassurance.



Rest in Peace baby Zavier, DaLove, Emma, Hope, Aliyah.  Please watch over your families and know that you are truly missed.

Wednesday, June 27, 2012

33 Weeks 2 Days

June 27, 2012

Not a whole lot has happened since I updated last.  I saw my regular OB last week and my fluid level has came down significantly.  My fluid level was at 41cm on June 6th and on June 20th it was at 33cm.  More good news my uterus measurement is still at 40cm so Amir seems to be growing into the space that was taken up by amniotic fluid previously.  I will have a growth scan on July 3rd and as long as Amir continues to grow my placenta is functioning and I will be able to continue to our planned c-section on July 24th.....that is only 27 more days away.  The closer I get the more excited and nervous I get.

Belly shot taken today.



I learned how to loom knit baby hats and have made several hats for Amir.  I also made him a fleece tie blanket.  I am not the most crafty person so it is at least something special for Amir that I made.  Adrianna picked out the fabric and yarn.


Today the hospital nurse called me to give me directions for my c-section.  I cried like a baby through the phone call.  No real reason so I blame it on pregnancy hormones. I also finally typed my birth plan and sent it to a couple Trisomy 18 moms to review and make sure that I didn't forget anything.

Next thing I need to finish is packing our hospital bags.....

Saturday, June 16, 2012

31 Weeks

30 Weeks 2 days
6/6/2012
Seen my OB today.  I still have polyhydramnios and my measurement has hit 40cm. Today my c-section was scheduled for July 24th ~ 37 weeks.  I am kind of sad because I want to have Amir on August 8th.  If July 24th is better for my body and for Amir though we will do it.  I am hopeful that he drops and my measurement goes down so I can carry him a little longer.  I am still carrying quite high but doing well enough to skip an appointment next week :)  Amir is head down facing my back so we didn't get one good picture, but that's ok since I had an ultrasound Monday with the specialist and got some nice face shots. 


31 Weeks

6/15/12

Finally a week with no appointments.  Well, no appointments with my OB.  I had to find a new primary care doctor because of insurance and picked a clinic that was recommended by my sister (a nurse at the local hospital).  It just so happens that my favorite doctor from an old job is one of the doctors there.  So we caught up a little bit and I explained what we are going through right now and she actually knows a lot about Trisomy 18.  She was explaining to the resident and I that the degree of a baby being affected has to do with when the extra chromosome appeared in the creation of the zygote.  Well above my head here, but this was the first time I had actually had the how explained to me. 
HELLO heartburn.  I have not had heartburn in 2 years (since I had lap band surgery) but this week has been horrible.  I hope it means Amir will have a head full of hair like his sister did.


I found this picture frame at Burlington and had to have it.  It is so fitting for us.  I also got lucky and found some preemie pajamas that aren't yellow and some preemie onesies.  I am going to pack our hospital bag next week and put the car seat in my car.  

Back the first week I found out I was pregnant I joined an August Birth Club.  I have done pretty well with seeing everyone's purchases and ultrasound pics, but this week some have started having their baby showers and it makes me really sad.  I should be celebrating too, but it hurts too bad right now so I will save the celebration until I bring my baby home.  I took my name off the secret sister list so I won't be participating in the gift exchange.  I have hovered over the leave group 100 times or more but still remain for now as they can share some of the pregnancy moments and feelings with me.

Monday, June 4, 2012

30 weeks and counting

6/4/2012  

30 weeks 0 days

Maternal Fetal Specialist appointment went well today.  Amir is catching up in size and while measuring exactly on target with everything else his abdomen is measuring about 3 weeks behind.  This one figure being low drops estimates to the 6th percentile.  But with all the figures entered his adjusted fetal age is 29 weeks 5 days ~only 2 days behind.  Today's estimated weight 2 pounds 12 ounces.  She was still not able to identify any heart defects, so we continue to have faith that we will be one in the 10% of Trisomy 18 babies born with a normal heart <3  Amir will have an Echo at birth just to be sure on his heart. 

More good news ~ Amir had choroid plexus cysts in his brain that have completely resolved.  He has 2 functioning kidneys.  My placenta is functioning normally.  My blood pressure remains completely normal, even with all the extra amniotic fluid. 

I also learned that I am not a candidate for taking Indocin as previously thought to reduce the amniotic fluid level.  Not really because of the Trisomy 18, but because it can cause premature closure of an important cardiac artery in Amir's heart, and it is generally not indicated after 29 weeks along.  Plus we don't want to give Amir any additional hurdles to have to jump.

Really the only not so good news (can't really even consider it bad) is that she feels his forearms are missing or underdeveloped, but I know we see at least a partial forearm in the ultrasounds, so we will have to wait until birth to see what exactly what is wrong.  Plus this is not new news, as they have been telling us all along there was something wrong with his arms.  Again I would take the arm deformity before a heart defect any day. 

As of today I would like to carry him to 39 weeks, I am not sure how much longer I can work but I plan on being pregnant until August 8th as of now, which is only 5 days before my actual due date of August 13, 2012.







Thank you to everyone praying for us. 


Especially my 6 year old niece Jessica Whaley :)