Wednesday, October 31, 2012

1600 hours (4 pm)

I am finally awake after working last night. Keli has been with Aubrey at the hospital most of the afternoon.

Aubrey has been having breathing episodes all day. They took her off the ventilator and she is breathing on her own (mostly) with 25 sigh breaths from the cpap machine. That's a lot of sigh breaths, but still normal considering everything. The good thing is that she is off the oxygen machine. Her one eye is slightly beginning the process of opening. Her weight is at 1 lb 7 oz. Her feeding was upped to 3 ml and she had her first diaper blowout! Her tummy is a little swollen, so they gotta watch that because if it becomes too swollen they have to pump her stomach, let it rest, then reset the feeding. It's normal they say. They put a foot warmer on her, to draw the blood to the surface, then poked her foot to draw some blood to test, and then stated her levels were correct.

She is trending in the correct direction. We just have to bring her sigh breaths down, have less breathing episodes, and continue feeding.

Her new shades are laying beside her. A little big, but what isn't these days. The nurse wrapped her head, and gave her a couple of bunny ears with the corners of the fabric to dress her up for Halloween.

Dear God,
Help me to be brave while I am in this machine to help me grow.
Aubrey.

Tuesday, October 30

7a.m.
The whole breathing, or not breathing, rather, episode last night scared me a little. This morning, the nurse said she was doing ok and they were about to start weaning her off of the vent.  She started feedings again at 1a.m. and is doing well on those.

Every time I go into the NICU, I just sit and stare in awe at Aubrey.  She's so beautiful and perfect...and tiny.  And hooked up to a hundred machines.  And then I cry.  Lucky me, I get to experience all the normal postpartum hormone swings along with the stress and worry of my baby not being ok.  Everyone keeps telling me I look so strong and am handling this so well.  In actuality I feel like a quivering, gelatinous, hormonal puddle of cow puke.  Not pleasant, I know.  I've never been more afraid in my life; I guess maybe I'm a better actress than I thought.  I'm afraid for Aubrey and all the things she will have to go through in the next few months (and possibly years).  I'm afraid of the toll it will take on Adam and I, trying to work and then live out of the hospital when we aren't at work, trying to have a "normal" life when we feel absolutely anything but normal.

On top of all that, for me, is the guilt and the grief.  Guilt because I didn't carry Aubrey the entire 9 months and have a peaceful, full-term birth.  I am her mama...I had sole responsibility for her care in the womb, and here she is already out in the scary world, 16 weeks too soon.  Somehow, I failed her. I thought I was doing everything I could--eating healthy, exercising, taking my vitamins and going to all my doctor's appointments...I know that's not logical--the doctors said there was no way to predict this, no indicators that this would happen, and no particular cause.  It just happened.  That doesn't make it easier for me to accept.  I hurt because she hurts.  I can't fix it.  I feel like I need her forgiveness. 

I also think I'm grieving the loss of the rest of my pregnancy.  I loved being pregnant.  I reveled in every kick I felt, every jab to the bladder, every inch of my expanding waistline.  I wanted to waddle and not be able to reach my toes and look like a snail when I laid on my back and have Adam have to help me get out of bed.  I wanted to tell people to put their hand in a certain spot on my belly to feel Aubrey give them a right hook. There is so much I didn't get to experience with Aubrey.  A friend of mine who has been in the same situation said it best: "You feel gypped, don't you?"  Yes, yes I do.  Please don't misunderstand--I'm so thankful that my sweet baby is here and alive and I get to see her and touch her and watch her grow...I just really wanted her to do some more of that growing on the inside for a while.  I wanted to take her home with us after she was born and spend weeks just getting to know her and being a family of three.

Ok, now that I've been a total Debbie Downer this morning, I'll end this on an upswing: thank you all so very much for all the love and prayers.  Thanks to everyone who has visited, brought food, sent gift cards and presents.  We feel all of this support so deeply, and, quite honestly, we need it.  This is going to be a long journey, and Adam and I feel blessed to have all of you walking beside us.

Keli

9:45 pm

Adam went back to work tonight.  Neither of us was thrilled with it, but it had to be done at some point.  At least it's only 1 night on night shift and then back to days for 2 weeks on Friday.  Mom stayed with me, and we went back to the hospital this evening to check on Aubrey.  She's still on the ventilator, but they are weaning her off of it and hoping to take it out sometime tonight.  The nurse said not to worry if they didn't though...they'd rather leave it in a little longer than take it out too soon and have to put it back in again.  She's handling her feedings well and the amount she's getting each time was upped from 2ml to 3ml.  It's such a small amount, but she's tiny and every little bit of breast milk she gets through that feeding tube is good for her.

Monday, October 29

8:45a.m.

I called the NICU this morning at 6am as I was getting ready for work (yes, work...until 11am, anyway...paychecks will be needed), and Aubrey had a good night.  Her feedings are going well--lots of pee and poo (lots for her, anyway).  The nurse working with her today is going to try and call me before the broviac procedure happens, if she gets enough notice.  She said sometimes they call 15 minutes before they come up to do the surgery.  Dr. Sharpe told us yesterday that with surgery, we are pretty much at the mercy of the surgeon as to when it gets done...he said, "we tell people 11am, give or take 6 hours." *sigh*

Adam was going to try to go back to work tonight, but when we got home from the hospital last night he changed his mind.  He's pretty worried about the procedure, and he just doesn't feel comfortable going back yet...maybe tomorrow night, he says.  That's fine by me; I don't want him so preoccupied with worrying about Aubrey that he doesn't have his mind on his job.  I don't think I can handle worrying about both loves of my life at once.

One of us will update when we hear news about the surgery.  Thanks for all the love and prayers--we need it and appreciate it!

Keli


9a.m.

Just got the call that the surgery is about to start.  She will have to go back on the ventilator since they have to sedate her, so please pray the surgery is successful and that she will go back off the ventilator quickly and easily after the sedation wears off.   My sweet baby...I hate to think of her having to be cut on, even if it is a tiny cut and completely necessary.  *deep breaths*


1243 hours (12:43 pm)

The procedure went well. We were notified at 9 that it was about to happen and by 9:15 the surgeon had cleared. Aubrey was x-rayed to confirm the line was in the correct spot and it was.

 During the night, little miss wiggle pants undid the iv in her leg and it had to be repositioned into her scalp. It sounds worse then it really is. They have to have it in there in case they need to give her blood. It will come out in couple of days and they won't put another one in unless they have to.

The blue light has been turned back on due to skin color, and the breathing tube has been re-installed. She is receiving 21% oxygen, which is the same amount we breathe in the air, so it isn't like she is getting straight oxygen which could damage organs at her age. They will go ahead and keep the breathing machine on her probably throughout the day whether or not she can breathe on her own so that a bruise can heal on her nose bridge. That bruise is from the Cpap machine. Its ok, they are just letting it heal a little.

Keli and I are doing much better now.


-Adam

I was able to take a picture before her eyes were covered and the light turned back on. You can see the neck iv going in, and it is well secured. She is laying there peacefully due to sedation.

The iv in her scalp looks bad, but it isn't. The orange line isn't attached to the iv, in fact, nothing is attached to it at this time, but the orange line is her food line. Her hair is still dark, but her eyebrows are blond like her mother's. You can see a little bruising on her nose bridge, but it is ok. They will either put the cpap on again if it has healed a little, or put another device on her nose that has little plugs going up into her nostrils. First they have to find a device small enough. 

1720 hours  (5:20 pm

She is having breathing episodes, or more accurately, lack of breathing episodes. These are normal they say due to her coming off the medications from this morning. She gets all mad about something, wiggling around and using up all her energy and then forgets to breathe. The last episode two nurses were hovering over her and making sure tubes were clear of water and saliva, and probes were all tight. Her party lights were still going off and the nurse turned to Keli and asked her to touch Aubrey. Keli of course obliged and encouraged her to start breathing again. The nurse was steady adjusting the manual breathing and oxygen level and I could see the shallow breaths Aubrey was taking due to the ventilator pushing in the air. Then after a minute, or maybe less, seemed like an eternity, Aubrey was breathing on her own again. Whew.

Oh the ups and downs of a roller coaster.  She will probably have more of these episodes for the next few hours until the medicine wears off.

-Adam




Dear God,
Help me to be brave while I am in this machine to help me grow.
- Aubrey

Sunday October 28

Day 9, 1320 hours. (1:20pm)

We are trying to begin a normal life, well, a new normal life, with some type of routine to it so that things can stabilize for us. I am considering going back to work monday and tuesday night, and since my shift is on nights, i am starting the transition to staying up all night. So I slept in and Keli went to the NICU early before the doctor got there to sit with Aubrey.

Aubrey is wiggling around more now that the medicine is wearing off that she had to take from her minor surgery yesterday. It is good to see her moving around kicking and squirming. This morning the iv going into her umbilical cord had moved to somewhere it shouldn't be so they had to remove it. They were going to remove it when they did the neck surgery anyway, but they still need an iv until then so the nurse was able to get one into her foot. It took several attempts due to her squirming so much, but it's in there. It is firmly taped down but she is still moving the board and gauze around like its nothing. Other than that, she is doing good. Keli got to hold her for about 10 minutes this morning as they weighed her and turned her back around in the condo. They will begin feeding at about 3 this afternoon. 


Tomorrow is the neck surgery. I think I am more worried about it than everyone else combined. What they are doing is putting the IV in from her neck all the way down into her chest to pump medications, nutrition and other stuff. This iv will last about 30 days. A surgeon who does this procedure and others like it about 4 times a day will be assembling a team of people and doing the operation tomorrow morning. It has a 99% success rate. The sedation they have to give her for the surgery will wear off after about 12 hours and she will be given a pain killer. During this time, the muscle relaxer will cause her to forget to breathe, so the ventilator will be reattached and she will have to be weened off of it with in 12 or 24 hours. If after 24 hours she still is not breathing correctly, they can inject another medication that will counter the other medicine that will help her. She will have a tube going into her neck and it will be taped and secured, but there are times she will twist and squirm causing the IV to pinch and alarms and party lights to go off. (We call the alarm lights on all her equipment party lights. Some of them are red, some yellow, some green and others orange.) But there is no concern here, just move her head manually and everything will be fine.

Today is day 9. Please join us in reading Psalms chapter 9.

- Adam

We were given some playdough and Claudia (keli's mom) sculpted this statue of our family.

The light over her has been turned off so pictures will not be blue anymore. The blanket over the top is to keep it dark inside the condo to replicate the womb. Right above the condo you can see a monitor and the party lights are on top of that monitor. More r seen behind Keli's shoulder and one is green in this picture. More are on the other side of the condo in that blue box, and another one is right beside the badge on the condo. Only the green one is on at this time.

Aubrey as she lays, sleeping off the sedation medicine.

The hospital waiting room has become our new living room as we wait to cycle through visits and post info on the blog. They only allow two visitors at a time to see her so the rest of us sit outside waiting our turn. Feel free to come visit and join us in our new living room. It is located just outside the door to the NICU. We are usually here in the afternoon.

1936 hours (7:26pm)

We are home from the hospital. We said goodnight to Aubrey and saw her kick and squirm a little. Had a couple of breathing episodes while we were there but she recovered on her own. The Cpap machine is still at 10 sigh breaths a minute, and she is being fed every three hours. Some additives are mixed in her milk to give her more calories. She is holding steady at 1 lb 5 oz.

Tonight pray for her parents as they are worried (for no reason according to the doctors) about the procedure tomorrow. Also pray for Aubrey as she goes through the procedure and that all goes well. Also pray that there is no infection as a result of the procedure.


- Adam



Dear God,
Help me to be brave while I am in this machine to help me grow.
- Aubrey

Saturday October 27

1100 hours

Aubrey had a good night. The midnight conversation with the nurse was short, so that means that there was little to report, which is good.

The Dr is in the pod working on Aubrey now. They are doing the procedure to install the picc line into her arm. They put the screen up so all we can see is the Dr with magnifying glasses hovering over her bed. We will notify when we hear any news....

Aubrey is 1 week old today. Yay! Please join us in reading Psalms 8.

And feel free to leave comments or questions on this blog, however as far as we can tell you have to have a google account to do that. So if you don't, you can facebook keli or text me. or if you know a way around it, let us know. 

Adam

This is the door to the nursery. Right now they have the white in color screen blocking the view from the hallway, (which is where i am standing to take the picture). If you look through the top of the left door, above the screen in the center, zoom in, squint, you can see the top of the Doctor's head looking into Aubrey's bed. When the screen is not in place, this is where Aubrey's entourage gathers to gaze at her Eminence. You can normally see a corner of her bed through the doorway, and every once in a while she will raise a foot or arm in the air, and all her entourage squeals in delight.

1230 hours

Dr stated this morning that the picc line failed all 4 times. So the next step was to do the incision on her arm. That failed too. The Dr tried but was unable to thread it past her shoulder. So the next step is to do the surgery into her neck. It will be done tomorrow or by tuesday. Meanwhile they may have to do small iv's into her arm or other places available. He also said that he wanted to take the Cpap off her nose but is unable due to the surgery. So there is good news.

The best news is pictured below. 

1900 hours  (7pm)

We are home now. Aubrey is still sedated a little bit due to the medicine from earlier but still ok. Had a couple of breathing episodes while we were there, but she recovered on her own. But the nurse still suctioned out her mouth and moistened her lips a little because some times saliva builds up in her throat and mouth. The light has been turned off so she is resting in semi darkness to replicate the womb.

We have over 1000 page views on this blog sofar. Thanks so much for the support and prayers from the 3 of us!

- Adam

 

 

 

Friday afternoon October 26

We only got to talk to the doctor for second this morning (a set of twins was born this morning and came into our NICU room, so he was busy). He did say that he was going to do a cut-in sometime this afternoon--that means he will make a little cut in her arm to get a PICC line in. This of course makes Adam and I a little nervous since she will have to be slightly sedated, not to mention cut on. :( pray that it goes smoothly and is successful.

--Keli (Mom) 

The Dr was unable to perform the procedure before he left for the day. Something about not getting all the sterile equipment together. So, it will be done tomorrow. 

She was given another bath and rolled to her side. Her sigh breaths were also lowered from one every 4 seconds, to one every 6 seconds. She gets only 10 per minute unlike yesterday she was getting 15 per minute. Improvement all the time. She wiggles and squirms all day long and pulls and tugs at all the wires. Every once in a while the nurse has to get up and plug something back in and adjust this or that. 

Keli is busy making cookies for the nurses. This should keep them motivated. 

Tomorrow she will be a week old. Yay!

I also have a disagreement with the Obgyn Dr regarding the age of Aubrey. I believe she is a couple weeks older than the Dr says. Yes, I am disagreeing with a highly educated man who has thousands of babies of experience, but Daddy's sometimes know best. I told Keli last Saturday that Aubrey was 26 weeks old, not 24 weeks. It was confirmed by two other people, one an EMT, the other who has the experience of knowing a Doctor. They confirmed this theory by reading in a book that Aubrey is closer to the 26 week mark due to her having beautiful eye lashes and her birth weight. Thank you Jeremy and Jim.

- Adam (the dad)

Friday morning October 26

She had a good night with only 2 funny hitches in her breathing, which she straightened out on her own. She is down to 1lb, 4oz, but it's normal for newborn babies to lose weight (the doctor says they are drying out after being waterlogged in the womb). We'll talk to the doctor around 11:30 or 12, and I'm assuming he'll tell us what they plan to do to get a long-term IV into her since the PICC line didn't work. Pray for the right decision to be made.

--Keli (Mom) 


Below are some pictures. As things calm down, we will be able to post more information and pictures. They are not in order, but i wanted to take some time to post pics of my beautiful daughter. Today is one week from when it all started.
 --Adam (Dad)

The CPAP machine that supplies extra air to her lungs is small. The smallest adapter is too big. At this time, she is receiving a sigh breath, (one a little larger than normal breath) every 4 seconds. This is the same air we breath, not straight oxygen which is good. These sigh breaths just keep her stimulated to breathe so she doesn't forget. Being only every 4 seconds is good. The tube going into her mouth is taped down, and at times she gets her fingers on it and pulls it off. Tadaa!

I raise my foot!

The red light on her foot is a sensor that is moved around on different limbs so its not in one place at all times. This picture was taken before the breathing tube was taken out.

Great grandmother (who was a premature baby) looking on. (Nana)

Great grandfather (pop) looking at Aubrey.

Mom and dad.

We went in to say good morning to Aubrey. We only had a minute with her due to a set of twins coming into the pod. They pulled the tube out of her mouth, (the belly sucker) and will be doing a cut procedure to install the PICC line later this afternoon.

--Adam (Dad)

This is the hand washing station we use before we go into the NICU. We have to wash our hands for 3 minutes every time anytime we go to see Aubrey. Three minutes is a long time. Dorktastic Keli can wash her hands, then use her forehead to initiate the little sensor for the paper towel dispenser to dispense a section of paper. Oh the fun we have....

You can see a little tape residue around her mouth. She is blue due to the light above her. It should be turned off soon.

Thursday October 25

Found out that she had an ok night...a few apnea episodes like she has had before, but she steadied herself back out. Her vitals were all still good. The dr will be doing a test to check the amount of fluid around her heart sometime today

Conference with the dr went well. he's pleased with how she's breathing (apnea has been better today); the fluid around her heart has decreased; her PDA (tube that diverts fluid from getting in to the lungs in utero and is supposed to close on its own after a full-term birth) has closed on its own; the neuroradiologist gave official word that her brain scan was perfect. thank you ... God! Prayer request for the day: they need to get a picc line (deep, central IV line) into her since the lines through her umbilical cord need to come out in the next day or two--they have tried once before but her veins are just so small they had trouble. They will try again today or tonight, so we need it to be a success this time!

Well, they tried to get the picc line in, but no luck. Her little veins just wouldn't cooperate. We'll have to wait to talk to the Dr tomorrow to find out what he wants to do next. She had a wonderful day other than that, and Adam and I both got to touch her and say goodnight tonight.

--Keli (Mom)

Wednesday October 24

She had a good night overall. Her vital signs look good and she is still breathing the same air we breathe. She did have to have some blood given to her, but this happens frequently with ones this tiny--they don't have much blood and their bodies haven't learned to make new blood yet (she was supposed to do that down the road on the inside, the little stinker).

We all can't wait to get our finger in that hand and feel the pressure of her grasp.

She is doing well today...glucose still a little high, but in the "ok" zone. Cranial ultrasound was done this morning, and, while we are waiting on the "official" results from the neuroradiologist, Aubrey's dr said that he looked at the scan and thought everything looked fine. She thoroughly objected to having her temperature taken and her little foot stuck for a glucose reading and let the nurse know by crying and kicking like a mule.

My entire day was just made worth it: got to touch my sweet baby (with gloves, but I'm not picky at this point) and let her hear my voice with no incubator in between. Her heart rate was just as steady as could be the whole time.

--Keli (Mom)

Tuesday October 23

Overnight update is that over all she had a good night--a couple of breathing hiccups, but she started back up on her own, so she's still off the breathing tube. They are still feeding her every 3 hours, so that's good. They are doing an ultrasound on her brain today to check for bleeding (normal procedure with preemies), so pray that comes back ok (we'll find out results probably Thursday).

On a side note, I'm in love with Aubrey's doctors. The one we're seeing this week said he tells all of his parents to read a chapter from the book of Psalms each day the baby is in the NICU. Today is Aubrey's 4th day, so we should read psalm 4. If anyone wants to join us, please do.

This Afternoon we received this news Aubrey's glucose level was too high and her belly was a little too round and grayish...all that together means they have to back off on the feedings. Too much food was sitting in her tummy at once, though some was being processed. They'll give her belly a day or two to rest and try again.

--Keli (Mom)

Monday October 22

Good news overnight she is still off of the breathing tube and doing well on her own for now. They are going to try to feed her for the first time around 3pm (eastern) today...this is a big deal.

Her first feeding went wonderfully! The nurse said they would try feeding her again at 6pm and every 3 hours after that.

This evening was hard as half our heart was left in the hospital as we had to come home. We must remember that there are people taking good care of our little girl and that we must also take good care of ourselves. We need to be strong, rested and of good health if we are to be there for our daughter in the months to come. We need to remember we serve an awesome God and that he can work miracles as he has already shown us with our Aubrey.

--Keli (Mom) 

Sunday October 21

Today started off with a good report from nurses calling our little Aubrey "feisty." We wouldn't expect anything else considering how feisty her Mommy can be. We've decided that since since Aubrey came into the world at 3:57 a.m. and is a fighter, she is our little .357 magnum. Not a surprise considering who her Daddy is.

The afternoon brought on tears of joy from all of us. Mommy and Daddy got to put on gloves and touch their sweet Aubrey.

Daddy and Aubrey's foot.

Mommy and Aubrey's foot.

To prove how awesome our God is and strong our Aubrey is she was able to come off the breathing tube this afternoon. This is what her Uncle heard today from her NICU nurse:

"How in the world a one pound baby doesn't need oxygen, I don't know... Thank you Lord."

This little girl is amazing everyone.

NICU nurse to us tonight: "I don't think we've ever heard a 24-weeker cry...they usually have breathing tubes in at that time and can't cry. I'm pretty sure this is the first one i've heard." That's my baby. Thank you, God.

After that first touch Mommy and Daddy were pretty much in awe and beside themselves. I think we all would be if we were in their shoes.

 

--Keli (Mom)

My Arrival - Saturday October 20

At 3:57am on October 20, 2012 our little Ticket would decide she no longer wanted to stay inside her Mommy and just kickbox in her comfortable yet temporary room. Hence she made her entrance into this world at only 24 weeks. This is how we came to meet our Aubrey Claudia Stubbs. Just to make sure we knew she was here she let out a little cry. For one so small it was a sweet sound to behold by her Mommy and Daddy I'm sure. At only 1lb and 9oz and just only 13in long she has taken hold of all our hearts.

Our Aubrey is one that has taken this world by storm. She is our little trooper and a feisty one at that.

With one born this early you barely get a glimpse of them before they are taken away to get medical help. For anyone who has had a child whether you carried full term or not you know the first thing you want to do is hold your child and love them, stare at them and kiss all over them. All are hard do when you child is whisked away from you. As Aubrey's Aunt I can't imagine what my sister-in-law Keli is going through. I carried both my boys to full term and got to hold them after they were born. To have part of my heart taken immediately away from me would be gut wrenchingly painful.

Aubrey's first day with us has been rather amazing. To see her with so much vigor, strength, and feistiness just breaks your heart and makes you love her so much more. She is a fighter.

A friend of the family works in the NICU where Aubrey will be for the next few months. She says there are 3 specific things to pray for her every day: 1. infection free days 2. good growth and 3. no problems with IV attachments.

                                                     She is her father's child all bundled up.

--Keli (Mom)