24 Weekers and Other Preemie Babies

CONFERENCE and bad news...then good news (ups and downs again)

2012-02-24T17:27:00.002-08:00

2-18-10

We had a conference about Riley today with the whole family. They told us that she has a level 4 brain bleed on BOTH sides and that if we decide to continue treatment (and not de-escalate care and let her die) that there is no telling what the extent of her disabilities will be until she is much older. They said she might not ever be able to feed herself or walk or talk but we all said WHO CARES!

2-21-10

Both girls are 13 inches long now!

Riley weighs 2 lbs 6 oz

Liz weighs 2 lbs 5 oz

and both girls are eathing 8 cc every 3 hours!

PROGRESS!!!!

2-22-10

Riley's liver is swolen and her liver enzymes are "wierd" (dont you love doctor terms)

2-23-10

Riley pulled her breathing tube out today (guess she was tired of it) so they put her on a CPAP to see how she would do and she did great! no more vent riley!

COME ONE ELIZABETH! get stronger!

2-24-10

6 weeks old! (30 weeks gestation)

Riley is now eating 20 cc!!! Liz is now eating 14 cc!!

2-25-10

Now they think Liz is having siezures :/ they will do an EEG to make sure.

Riley is getting sent back to the hospital by mommy tomorrow!

2-26-10

Riley is back at the original hospital today!

Liz's EEG was normal! they tried to switch her to a conventional vent but she couldn't handle it so they had to switch her right back to the Jet vent :/

2-28-10

Got to hear Riley cry for the first time today!!!!! (which was SO exciting at that point in time)

Liz is still at the other hospital but slowly getting better. They gave her steroid shots to help out.

2012-02-24T16:56:00.003-08:00

2-11-10 WHAT A FREEKING DAY!!

Elizabeth's hospital called me and said she was not stable and doing pretty bad that they would have to do her PDA ligation today (without me there!)

Riley's murmor opened back up and she is doing bad so she will be sent to the same hospital as Liz today to get her murmor fixed too :/

1 pm Liz went to surgery
5 pm Riley was airlifted to charleston

Liz's surgery went well and Riley got there safely. they did a spinal tap on her to make sure she doesn't have meningitis and also upped her fluids because her glucose is low.

2-12-10
GOT TO HOLD RILEY FOR THE FIRST TIME TODAY! (kangaroo care)
Elizabeth still is not stable enough to hold :/

2-13-10
Liz is doing even worse :/ she is HUGE puffy with fluids :/
Riley weighs 2.5 pounds now and is doing great.

2-15-10 found out Riley has an infection resistant to antibiotics so now she is on isolation :/

2-16-10

They did Riley's PDA surgery today and she did great! they said they might even be able to take her off the vent next week.

Riley's Resevoir Liz's grand positive infection

2012-02-24T16:38:00.001-08:00

2-09-11
Riley had her surgery today to have the resevoir put in to drain the spinal fluid from her brain to her stomach.
She did really good and was able to stay on conventional vent after surgery

Liz is very sick (and very far away from mommy :/ )
She has a grand positive infection and has to have antibiotics for 7-10 days before they can do surgery

Elizabeth's journey to a new hospital including compressions, bowel issues, fluid in her chest, and platelet issues all in 1 day

2012-02-24T16:30:00.002-08:00

2-06-10
They decided to air lift Elizabeth to a new hospital today where they are equipped to do her PDA ligation surgery.

WELL...when she got there

they had to change her breathing tube to a bigger one because they said the one she had in was leaking air and that they had to BAG her and do COMPRESSIONS to get her back :/

They also said something was wrong with her stomach that is was blue and swolen and their was low bowel gasses on her x-ray so they quit feeding her

They also said her pic line was leaking fluid into her chest and that her platelet count dropped dramatically in 3 days so they thought she had a funful infection :/

She now has 4 iv's and is too sick for surgery :/

Back at home...Riley is doing good. she is eating 7 ccs now!

phenobarbital, infections, and poopy diapers!

2012-02-24T16:20:00.001-08:00

skipping forward a couple days...

2-02-10
Elizabeth might have pneumonia. she is on 100 percent oxygen and 3 different antibiotics :/

2-03-10
3 WEEKS OLD!
got to change Liz's diaper AND take her temp today!

NOW Riley is on 100 percent oxygen :/ her head is 24.5 cm today :/

2-04-10
Now Riley is having siezures they started her on phenobarbital today
Got to change my first poopy diaper with elizabeth today! yay!
i also got to change Riley's diaper and take her temp today!

infections, spinal fluid, brain surgery, and lasix :/

2012-02-24T16:09:00.002-08:00

1-29-10
I got to change Elizabeths diaper for the first time today!

Riley...in the pictures you will see how her head shape changes. This is the day we found out she had spinal fluid in her brain.
They said they would have to put a resevoir in her brain to drain the fluid to her stomach :/ brain surgery on a 1 pound 12 oz baby!! her head grew from 21 cm to 22.5 cm in 2 days.

1-30-10
Riley's head is still growing it is 30 cm today :/
her breathing tube came out while "daddy" was in there. he got to see her without anything on her face for a brief second.

Elizabeth today weighs 1 pound 15 oz the nurse said this is BAD because it means she is retaining fluid and she will have to give her lasix to make her pee.

1-31-10
Elizabeth weighs 2 lbs even tonight they still hear her heart murmor

Riley weighs 1 pound 13 oz. her head is 23.5 cm today :/ and they did a CBC on her and found out she has an infection

UPS AND DOWNS IN THE NICU 1-23/ 1-28

2012-02-24T16:00:00.002-08:00

1-23-10
Elizabeth had a lot of residuals with her feeding today (spit it back up) so they had to give her a suppository and decrease her feeding to 1 cc every 4 hours. She got another Echo and her PDA is still there. She weighs 1 pound 9 oz now! and she gets to wear her first dress tomorrow!

Riley started ibuprfoen today for her PDA. They decreased her feedings to 1 cc every 3 hrs.

1-24-10
Riley was put on the oscillator vent today (doctors say its just like the jet but helps with CO2 levels)
Elizabeth was put back on the Jet vent today

Riley is not eating at all anymore and Elizabeth is only eating 1 cc every 6 hours (they said this if from the PDA medication upsetting their tummies)

1-25-10
Really no change in anything today!

1-26-10
Both girls doing good today.
Riley's brain ultrasound still shows L4 bleed on the right side.
Riley was on 67 percent oxygen this morning but by 1130 she went down to 32.
Liz is on 50 % oxygen and now weighs 1 pound 9.8 oz

1-27-10
TWO WEEKS OLD!
Today we found out that Elizabeth was going to need to be airlifted to another hospital soon to get her PDA fixed becuase the medication was not working BUT on the bright side, her brain ultrasound is perfect.

Both girls weigh 1 pnd 11 oz today and Riley came off of her UV lights and is now eating 2 cc of milk again.

1-28-10
Riley had her first of many blood transfusions today.
Both girls having blood pressure issues...they hear Riley's murmor again today :/

Elizabeth's sats keep dropping becuase she is moving so much...they want to sedate her but they can't becuase her BP is so low.
Riley, again. is not eating :/

1-19/1-22 Brain bleeds and D-sats

2012-02-24T10:20:00.002-08:00

1-19-2010
Both girls are under UV lamps again and both of them had one line taken out of their belly buttons becuase the nurses were able to get one iv in their arms.

This is the day we foun dout Riley had a brain bleed. At this point in time they said she had a level 4 brain bleed on the right side. She was also having trouble breathing this day and had to be put back on the jet ventilator :/ bad day for Riley.

1-20-10 ONE WEEK OLD!
Elizabeth's belly button is a little red today they think it is infected so they are putting her on an antibiotic. They are also starting her on Indocin for her heart murmor (yes now they say she DOES have one)

Riley is doing good today. she is only one 30 % oxygen.

Doctor said today is their best day yet!

1-21-10
Elizabeth 2:30 am they called and said she was having quite a few D-Sats. They went up to 50% oxygen but might have to put her on jet vent. they said her carbon dioxide levels are pretty high. They said they will check her blood gasses in a couple hours and decide :/

Riley is now eating 2 cc of milk. (2 millileters)

They both had to end up getting scalp iv's today :(

1-22-10
Elizabeth's blood gasses are decent this morning. No jet for now!! She is also off of her UV lights today.

Riley now weighs 1 pound 7 ounces and is eating 3 cc.

1-15-10 through 1-18-10 PDA, Echo

2012-02-24T09:31:00.003-08:00

1-15-10
Doctors think that both girls have heart murmors **PDA'S, which is why they are having blood pressure issues. they will do an *Echo of their hearts tomorrow
Elizabeth weighs 1 pouns 3 oz and Riley is 1 pound 3.5 oz. Elizabth is still not eating but both girls are doing good considering...

1-16-10
The *Echo showed both girls DO have **PDA'S but the doctors said not to worry that it is usually fixable without surgery.

1-17-2010
NOW THEY ARE SAYING THEY DO NOT HAVE HEART MURMORS.....

and Riley is off of her UV lamp so we can finally see her face...no more plastic!...no more face mask!

1-18-10
Riley is off of the jet ventilator and on a conventional ventialator like her sister!!
They both weigh 1 pound 5 oz now! Growing girls :)
AND no one is on Dopamine!!................Overall BEST DAY OF THEIR LIVES SO FAR!

Echocardiogram (“Echo”)

Ultrasound picture of the heart. This is a painless, non-invasive procedure that takes accurate pictures of almost all parts of the heart. Many preemies have a cardiac ultrasound if the doctor is looking for evidence of a patent ductus arteriosus.

Patent Ductus Arteriosus (PDA)

The ductus arteriosus is a blood vessel connecting the pulmonary artery and the aorta. Before birth, this vessel allows the baby's blood to bypass the lungs because oxygen is supplied by the mother through the placenta. The ductus arteriosus should close soon after birth. If it does not, it is called a patent (open) ductus arteriosus, or PDA. A PDA may be treated either with medication or surgery.

http://www.ttmf.org/glossary_p-t.html

1-14-10 DAY TWO IN THE NICU

2012-02-24T09:12:00.001-08:00

Riley was taken off dopamine becuase she was keeping her blood pressure up all by herself :) good thing. She also got to start eating! (GET THIS) she gets to eat 1/5 tsp every 4 hours of mommy's milk!!
She is also improving breathing wise. She might be put on a conventional ventilator. They said she gained an ounce but it was probably jsut fluids.

Elizabeth....not much change. She is on and off Dopamine but not keeping her blood pressure up as much as they would hope. She is still not able to eat BUT :) she was put on *room air today.

*The air we normally breathe, which contains 21% oxygen. When supplemental oxygen is given for respiratory problems, it is in concentrations higher than 21%. http://www.ttmf.org/glossary_p-t.html

Day One Dopamine, UV lights, Ventilators

2012-02-24T09:01:00.002-08:00

I did not get to see my girls for 4 hours.
that's how long it took the nurses to work on them.

Riley "baby A" was put on a Jet ventilator at 100 percent oxygen becuase she was not breathing on her own at all. She was also put on Dopamine to increase her blood pressure. They also had to put her under plastic for humidity to help with her body temp on top of being in a heated bed. They also began to give her lipds.

Elizabeth "baby B" was put on a conventional ventitalor. She was taking a couple breaths every once in awhile on her own. She also needed Dopamine to up her blood pressure and she also began to get lipids.

Both girls were put under UV lamps today as well to help with Jaundice.

Baby A , Riley under her plastic...

pictures. day 1.....1 pound 4 oz each

2012-02-24T08:51:00.000-08:00

Baby B Elizabeth Lee Atkinson 1 pound 4 oz

Baby A Riley Ann Atkinson 1 pound 4 oz

placenta previa, c-section, nicu

2012-02-24T08:37:00.001-08:00

I managed to hold on until i was 24 weeks and 2 days pregnant. January 13, 2010.

That morning i was having contractions but before the doctors could do anything or get me back on any medicine i THOUGHT my water broke. I called the nurse back in...she pulled back the sheets....BLOOD, LOTS OF BLOOD

Placenta Previa...what was happening? what did this mean? was i going to die? were they going to be okay?

They told me they had to do an emergency c-section or all 3 of us would die. the Nicu doctors came up and talked to me again about not getting my hopes up that the chance of them surving this was slim to none.

They rushed me off to surgery and at 1:54 pm baby A was born and at 1:55 baby B was born....

I heard no cries....heard a bunch of people talking throwing aroung all of these words that i had no idea what they meant...i am asking if they are okay and no one is answering me...

i didn't get to see my babies before they rushed them off to the NICU.

3 cm dialated....Nicu Doctors very unhelpfull talk

2012-02-24T08:31:00.003-08:00

My contractions were back under control but i was now dialted 3 cm.

At this point i was 23 weeks and 4 days.

My doctor(s) had the Nicu doctors come up and talk to me.....

They told me that if i did not hold on to them until Monday (which was 3 days away making me 24 weeks) they would not even try to save the babies and that even if i did make it to 24 weeks they would TRY to save the babies but they would both most likely have absolutley no quality of life. They would both be severely disabled probably have sever brain damage and would most likey die from breathing issues, infection, or other complications.

JUST THE NEWS I WANTED....NOT!!!

A little hope....back to no hope and more Mag

2012-02-24T08:28:00.001-08:00

So things started to get a little better at this point..... I was taken off the Mag, the catheter came out and i was allowed to use the bed pan. (was not allowed to get out of bed for any reason and still could not sit up at all to eat which i found very difficult with my huge stomach in the way)

I ahd no contractions for a couple days but my water bag was still bulging and i was not allowed to leave the hospital until i delivered. The doctor thought for sure he could get to me 30 weeks but JUST INCASE he gave me steroid shots for the babies lungs (who were at this point only 1 pound each).

The nurses all came in to my room everyday to try to keep my hopes up and we all got pretty close after 2 weeks. (One nurse even snuck me ice cream from the cafeteria which was the best part of each day at this point).

Just as i thought everything was looking up and i was going to hang on to these babies the contractions started again.

All i could do was cry. I was doing everything i could to hang on to these babies. I was not getting out of bed or even sitting up all the way. I was taking my Procardia and my Ibuprofen and doing everything the doctors said would save my babies.

They put me back on the Magnesium :/ (which this time made my blood pressure almost bottom out but i hung in there and the contractions once again came to a stop).

Brethine, Cerclage, Magnesium Sulfate....MISERY

2012-02-24T08:20:00.002-08:00

After finding out this news and being terrified i was then sent to the hospital to get a shot of Brethine to stop any possible contractions and to be monitored for contractions. After they gave me the Brethine shot (which by the way made me feel like i was having a heart attack) they looked at my monitor results and sais everything looked fine i was not having any contractions and sent me home WHICH THEY SHOULD NEVER HAVE DONE! They told me to go to my local hospital the next day to be monitored again (instead of this hospital which was 30 minutes away with specialists in preterm labor and a nicu)....

Upon getting to the hospital the next day they again hooked me up to a contraction monitor and put an i.v. in incase they needed to start me on Magnesium Sulfate. I was not having any contractions but when the doctor came in to check me to see if i had dialeted or if my cervix had thinned out anymore she said that she could not do a cerclage on me because my cervix was too thin and that my water bag was bulging and that she COULD PHYSICALLY SEE BABY A (at this point i thought for sure that none of this was real and that i was in a terribly horrifying nightmare that just kept getting worse and worse)

The doctor proceeded to tell me that she thought for sure the babies would be delivered that day and they would not make it. She proceeded to put me in the Trendelenburg position and said she would do everything she could to keep the babies in until they were viable but that there was basicly a 0 percent chance of them making it.

She had me transported by ambulance back to the other hospital (which i should have been at all along) where they started me on Mag Sulfate THE WORST FEELING IN THE WORLD (besides not knowing if your babies are going to make it or not)

I don't remember much about that night besides yelling at the nurse to take my catheter out because it was hurting so bad and arguing with her about turning the air conditioner on becuase i literally felt like my body was on fire from the Mag. It was miserabbbllleeeee!!

21 weeks and news that changed my life forever

2012-02-24T08:06:00.003-08:00

When I was just 21 weeks pregnant with my identical twin girls, I went to the doctor for a routine checkup. I had an ultrasound done to make sure my girls were developing properly and everything looked great to begin with. The ultrasound tech said she was done and she left the room so i could get dressed. Before i was finished getting dressed she came back in to the room and said, "let me check one more thing". The thing she decided to check was my cervix. Well.....come to find out i really didnt have a cervix...it was only 7mm thick.

I had no idea what this meant but i knew it was a bad thing...just had no idea how bad.
She brought me into another room to talk to the doctor (who by the way was out of town and appeared on a computer screen to talk to me).
The doctor (on the computer screen) told me that what this meant was that my girls would be delivered in the next 4 to 5 weeks and that there was no way i would make it full term.

THIS IS WHERE THE LONG JOURNEY BEGAN