Day in the life of ELLA!

Ella has now been at home for 3 days. This is a WAY different experience than bringing home a newborn baby. My normally happy baby has been a little bit sensitive. It is certainly to be expected. While it may still be noisy, the sound is different. We have taken away the sounds of babies crying, monitors beeping, and lots of nurses talking and switched it to a TV and two little boys playing....loudly. Today has been a little bit better, thank goodness!!! Ella is also quite the little spitter. The doctors have tried a few different things and finally diagnosing her as a baby that spits.  I was advised that I would need to get some good stain remover. Fantastic!!! The big thing that they wanted to watch for is that she continues to gain weight, which she has been! In the meantime, Wyatt and I have been doing a lot of laundry!! We also do a lot of bottle and tube washing!! I think we are going to need to see a dermatologist before long!! Otherwise, all is well!!!! I am thinking that I will try to get some pictures on here soon!

Best Black Friday EVER!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Ella is home!!!

I want to thank everyone for their continued support and prayers for Abbey, Wyatt, Haden, Brody, and Ella.  Ella is an amazing little girl who has been through so much in her short 80 days of life!  (not that anyone has counted!!!)  She is doing wonderful and continues to amaze all of us!!

That being said, I know all of you are probably headed to your cars to head on over to Miss Ella’s house!  I know that is what I want to be doing!!  However, hang tight!  Abbey and Wyatt have asked that I pass on to you that Ella is still very fragile as far as her immune system goes.  (Remember, she has been in a very sterile environment for 3 months!)  Because of that, she is extremely susceptible to anything that may be contagious.

Abbey and Wyatt are very excited for all of their family and friends to meet Miss Ella Grace.  However, the doctors at Children’s Mercy have advised that Ella not have any visitors until they feel that her immune system is stable enough to handle even the smallest seasonal illness.  Please remember that this is the doctor’s orders.  Abbey and Wyatt are not trying to single anyone out from visiting Ella. No family member or friend is more important than the other, they are just doing what is best for Ella. PLEASE remember this when you think it might be all right to stop in and say Hi just for a few minutes.  Remember you may be a carrier for a cold or the flu and not exhibit any symptoms yet. Either of those ailments could put Ella back in the hospital.  This is not something that we want to happen!!  Thank you all so much for understanding and respecting this request.

As soon as Ella is strong enough for visitors, Abbey and Wyatt will let you know through this site.  Please keep on praying for Ella and that her transition to her home is a smooth one!  

Here's to hoping that Ella continues to gain weight & get stronger and that winter flies by fast!

Again, thank you so much for everything everyone has done for the Althof's.  I hope you all are having a fabulous Thanksgiving weekend.  I know we are!!

-Heather

Thankful

Wyatt and I have so much to be thankful for this year. We have a fantastic family, great friends and an outstanding community in which we live. We have met top notch doctors, nurse practitioners, nurses, occupational, physical and resipitory therapist. We have two healthy and happy little boys and one tough little girl.
We are getting closer to the day that we can bring our family all under the same roof. That means that the H word has been mentioned and discussed. With that, I have to be the bearer of some yucky news. I will not be able to show her off like I would wish. She is under some strict doctors orders to stay away from big crowds and limit visitors and children. This is a bummer to me as I want nothing more to let her meet everyone that has been cheering her on, but I do what I need to do to keep her healthy. I will certainly do my best to keep pictures updated and even videos!!
In the meantime, I will not say the H word or even spell it out for fear of jinxing it, but hopefully that day will come soon!!!

Happy Girl!

Still truckin!!

Ella had a bit of a blurp in the healing world. She developed an infection. She was a crank pot on Saturday and on Sunday morning her nurse really just did not think Ella was herself and thought something was up. Her nurse is Ella's primary nurse and whenever she is at work, Ella is one of her two patients. This is great because she is really aware of how Ella is because she works with her a lot! Anyways, they ran some labs on Ella and she had a slightly elevated white blood cell count, indicating an infection so they promptly started her on some antibiotics. We were pretty certain that it had something to do with her angry looking g tube site. The cultures started coming back showing that she actually has a UTI. Poor girl!!! They actually caught this infection very early on and by Sunday evening she was perking up a bit and she looked and acted like her happy little self today. She will continue with the antibiotics tomorrow and it will be decided what we are going to do next. They are also going to draw some labs on her thyroid as those levels on her Missouri newborn screening came back a bit high. If they are, they will start her on some thyroid meds and continue to monitor on an out patient basis. They reassured me that this is actually very common with their NICU babies. On a good note, she did take 30 mLs out of her bottle today. That is a big deal!!! AND she did not really drool a lot of it. Her OT was shocked and VERY excited about it!!! I was as well!!! This is her personal best. Now she just needs to keep it up. She is swallowing a lot better with that tube out of her throat so I am sure that helps with the drooling, and we have to trick her into putting her tongue down, but it is a GINORMOUS improvement from last week. Today they started her back on LASIX as she is just not quite ready to be rid of that drug. It is helping her to more effectively deal with the extra fluid. She still has a tendency to breath quickly but not hard. They would like for her to be more consistently below 60, which she is slowly working on. She is not in the 70's anymore so this is great! By her being on this particular medication, it does qualify her to get the RSV shot. I am relieved about since we are going into the season. I hope that will be a helpful preventative in addition to her bubble to keep her from getting sick! That is right....she is officially bubble baby....some of which are actually doctors orders!!!
Her next big step is to do her car seat test. She has to make sure that her heart rate does not dip down below 80 and her breathing stays within a decent rate. I am sure she will be fine with this test.

Saturday

All continues to be well here at Children's Mercy! I chose not to come home this weekend and stay with Ella. I figured that I would try to stay with her as much as possible right now so that I can learn how to take care of the G-tube. Ella is doing great. Today she was grumpy, which we contribute to having a sore tummy from the site. Hopefully she will be able to get in some good rest and feel a bit better tomorrow. As for this G-tube business, it seems like it is going to be pretty easy. We have tried to do a few bottles yesterday, but kind of gave her a break today. She still has what her nurse and I call, the crazy tongue syndrome. She has never really had to use her tongue much and now she has to use it to eat. It is funny and frustrating all at the same time. It is almost like she can fold the darn thing in half! We will just keep working on it at each feed and eventually she will get there. The good thing is, she really wants to take a bottle, she is just perplexed by her crazy tongue!!

For the Stormont Vail nurses....I had a small world moment that I would let you all in on!! Ella's next door neighbor came from Stormont and was there when we were there. I think he is a week older than Ella and came to CMH about 3 weeks ago. His mom and I got to talking the other day as we were holding babies! I just thought it was wild that we ended up next to each other. It is great to see her little man doing well! He is pretty sweet!

It's a GREAT day!

I talked to Abbey just a little bit ago and they were getting ready to start Ella back on her feeds.  She handled her surgery yesterday like a champ.  She had a few pain issues but, that seems to be getting better.  Abbey was going to try feeding her a bottle once we finished on the phone.  Everything is heading in the right direction!  I don't have a whole lot more than that to report.  Just keep praying that Ella continues to make such great strides and that she is home soon!!  I will update as I hear more!

-Heather

All Finished!

I heard from Abbey around 5 p.m.  Ella was in recovery and should be heading back to the NICU now.  Thanks for keeping Ella in your thoughts and prayers today!!

-Heather

It's time!

Wyatt and I are waiting in the Ronald McDonald waiting room in the hospital for Ella to get out of surgery. They took her back about 20 minutes ago. She was originally scheduled to go in at 11 or 12 but that did not happen. The case before her was changed and Ella could not go because she had a 5:30am feeding so they slid someone else in. I am guessing it took a little longer than the original case since we did not get to go until 4:15. She was quite the calm little waiter this morning! She slept all day and never really got fussy. She would wake up long enough to try to suck the life out of her fingers and paci and then would drift back to sleep.
We were told that this surgery should not take very long. To actually insert the g-tube will take around 15 minutes. The rest of the time will be getting her to sleep and waking her back up. Roughly around an hour. Once she is out of surgery it is possible that she may start using her g-tube tomorrow! I have been reassured, by what feels like the entire Children's Mercy staff that this is the best decision for Ella. It will get her home quicker and will allow her to still get all the nutrients she needs to grow and work on learning how to feed. I will try to update when she is out of surgery and how she is doing!

No Surgery Yet

Just a quick update to let you know that as of 3:00 p.m., Ella was still waiting for her turn!  Abbey says she is sleeping and isn't fussy.  I am guessing that if they don't hurry up that isn't going to be the case any longer!  I will post an update as soon as I hear more!

A Big Morning Ahead

·        "Please say a little prayer for Ella tonight and tomorrow!! She will be going to surgery to have a g-tube put in to help with her feeds. This will help us to get her home more quickly but also to make sure she is able to get all the nutrients that she can as she continues to learn to oral feed."

      This is a request that Abbey posted on Facebook last night.  Please be thinking of Abbey, Wyatt, and Ella today as Ella goes through, what should be, her final surgery.  This will be happening sometime around 11 a.m. or so.  The surgery is not a difficult surgery and Ella will go right back to the NICU for her recovery.  They have been told that this should not be any more than 1 hour. 

    Prayer Request

      Please pray that Ella does well with her surgery and that her recovery is quick.  Pray that this is the "answer" to getting Ella home and that she continues to show improvement with her feedings. 

      Thank you to everyone who continues to pray for Ella Grace.  I have said it a million times but, I mean it when I say that those prayers mean more to our family than anyone will ever understand.  This has been a rollercoaster ride that no one ever expected to get on.  However, the ride seems to be slowing down.  Hopefully it stops soon and Ella gets to come home.  Keep the prayers coming!  I will update as soon as I have something to update on today's happenings.  Everyone have a great day!!

-    Heather

T

Another Update

Ella is continuing to improve a little each day. She has come across another obstacle in the road to recovery. This is actually something that I have been prepared for. Before she had surgery, she was only allowed to oral feedings if her respiratory rates were below 75. That was not very often. We did work with Occupational Therapy a little bit before surgery to help with her feeds. Now that she is out of surgery and for the most part, recovered, we are now focused on getting her to eat so she can come home. She has just really struggled with pulling the milk out of the bottle. We are not surprised that she is having this problem. She really has not had a chance to learn how to eat. She is able to do all the components of eating, the suck, swallow and breath, but to coordinate them together is a bit tricky but she is getting it! Just on her terms. What does this mean??? What it means is, Wyatt and I can let her continue to practice her eating at the hospital and continue tube feedings there OR do it at home. Well, DUH!!! We want to do it at home. HOWEVER, there are many risks that come with tube feedings using the NG tube (tube in her nose) since it will be a long term use, meaning over a couple of weeks. There are the risks that she may pull it out during a feed or it is placed in correctly, all causing potential harm to her lungs. The other option is to put in a G tube (a tube in her tummy). This has a lot less risks for long term use, however, it does require anther surgery to place the G-tube. Obviously, I would rather her not have surgery, but I don't want to put her at risk for other health issues. The team and I met today to talk about Wyatt and I's concerns about both options, and it was decided that the best option for Ella is to get the G tube. This will get her home faster, is safer, has way less risks, and less scary for Wyatt and I as we will not have to worry about if it is in correctly. Plus she will not have to have anymore things taped to her little face! I am not 100% sure what will happen exactly in surgery, since I have not met with them yet. Hopefully soon! It is a pretty minor surgery (especially compared to what she already had!) It will take about an hour and she will recover in the NICU. No waiting for a PICU bed!!! She will have to go back on the vent, but they say that there is a high probability that she will be back off of it before she gets back to the NICU. During the recovery days, Wyatt and I will learn how to take care of the G tube. Once she has her stitches out and is feeling good we can take her HOME!!! The plan is, at every feed, Ella will start out with an oral feed. When she is tuckered out from that, the rest of her feed will go through the tube. The goal is to get her to take more by mouth, less by tube. Once she gets everything by mouth then we can take the tube out and stitch it up. It will take her a while before she gets to be done with the tube, but she will get there with a lot of dedication. I can be pretty determined! She may only need the tube for a few months. It is all up to her! In the meantime, I predict VERY LONG feedings! Those late night feedings are going to be brutal but we will do anything for Miss Ella!!!

 Just for fun, here is a video I took of Ella. This was from a week ago. She still has her nares on her head! She was enjoying the kissing noise and she was really trying to figure out her tongue. 

How am I?

Ella has been doing well. She finally broke the 7 pounds 10 ounce mark! She has been not gaining or losing weight for a while, and last night I was told she gained 1 ounce! This was a big deal, at least to me!! She has been recovering nicely from surgery. In fact, she has nothing left other than her bandages from the incision and the drain. They were going to remove the stitch that sealed the little incision for the drain this morning. All she has left is to eat. This is actually not going as well as I would like it to. She will get it, I am just inpatient. We are going to give her some time to work on it, but her mommy is a bit impatient and would like her to get it...yesterday! This leads me into the question...How am I doing. I have had so many WONDERFUL people ask me this and I always respond with "ok."Truth be told, I am OK. I am WAY better than I was. I still get very emotional when I talk about Ella. If I am at home and having a hard day, I just do not leave the house. I try to avoid situations that might put me into a position to repeat myself over and over about Ella. Not that I don't want to tell people how she is doing, but because I start to lose my "I got this, I am great!" front. I cannot afford to fall apart. If I fall apart, it takes to much time to get back together. I have grieved the loss of a normal birth and coming home experience.  SO...I am just ok. I am not depressed about the situation and I am obviously not thrilled about it either. I need to do what I need to do and that is to take care of my family. I cry when I need to and laugh when I need to. I spend a lot of time praying and that certainly helps.
I have come to have a love hate relationship with Mondays and Fridays. I come home on the weekends to be with the boys. This means that I have to tell Ella good bye and see you later on Fridays. I hate that this is now part of my routine but I cannot hardly get home fast enough to be with the boys. Then comes Mondays and I have to do the same thing but only this time I am leaving the boys to get to Ella. I have had to come to terms with this just being our life for the moment. There are parts that I have not come to terms with and that is were I struggle. I feel like I am missing out on so much with the boys. They have had field trips, parties, and Halloween activities that I have missed out on.  I know that there will be more, but they are also only 4 and 6 one time. Wyatt and I have discovered the divide and conquer method is what is best for us. He has done a fantastic job taking care of the boys by himself, but I hate that he is having to be by himself and I am missing so much. I have a hard time knowing that while he is at home with the boys, I am by myself with Ella. I have to take on all the information by myself, process it then pass it along.  He has really trusted me with her health care. This is not by choice for either of us, but Wyatt really needs to be at home with our boys. Wyatt really is an amazing dad!  Of course he is here when he can be, and he was certainly with us for the toughest part of all, the surgery. It does make me very sad for him that he is not there for those great moments and I am. I try very hard to get the videos and pictures of Ella showing off her smile or wearing a sassy headband, but it is still not the same. I know that he will get many smiles on his own, but I know that we both wish he could be with Ella.
This truly is a roller coaster ride that just does not seem to end. We are getting closer to being together as a family, and a much tighter one we will be. There has been a lot of tears, maybe a panic attack or two (on my part) and some joyous moments. At the end of this, we will get to bring home a healthier baby girl. She is what gets us through. If Ella can get through everything that she has had to endure, than so can Wyatt and I .
SO, hopefully I have answered the question, "how are you?" Well, I am ok, we are all going to be ok!

All Cleaned Up!!

From Abbey!

"Ella had a good night. She got a new bed, a bath and clothes! This morning when I got here the nurse practicioner from cardiology was here removing her central line that was in her neck. That means that she does not need it and they feel pretty confident that her heart rate is good.  (they were leaving it in just in case they needed to give her medication to increase her heartrate) They just don't want it to dip into the 60's which it has not in a a few days! They also took her nares off her head and back. That was just monitoring the oxygen to the upper and lower parts of her body. She really could have gotten rid of them a couple of days ago, but apparently those little stickers are like $300. The nurse had just replaced them so they wanted to get good use out of them! They wanted to watch to make sure that her oxygen levels do not dip when her heart rate dips, but her heart goes down and back up so fast that nothing is picked up.
All Ella has left as far as wires and tubes go is her monitor and her feeding tube! In my mind that means we are officially down to the feeds! Cardiologist came and checked her out today and said that she looks great and is doing well. I liked listening to him talk to the med student about Ella. He was explaining that the doctors really prefer to do this type of surgery on 6 month old babies but sometimes it can be done earlier, like in Ella's case. We also talked about what to expect after recovery and as she grows.  There is nothing to expect but a normal life. Dr. Obrien said that she will have follow up appointments at first and then as time goes on, the cardiologist will eventually get bored with telling us that she is doing great and he will stop seeing her! I thought that was a funny way to put it. They did tell me that if we were to have more children (which we are not!!) they would need to be scanned for heart defects because there is a probability of another baby being born with a heart defect, but not huge percentage. When Ella grows up and decides to have children she will have the same probability of having a baby with a defect as well, but maybe not the same defect. The percentage of a defect is relatively small.
So, today is looking like it is going to be a bit boring. THANK GOD!!!"

It's always a good day when a girl get's her bath and some new clothes!  Hope you all have a great evening!
-Heather

Wednesday

Good morning everyone!  Sorry there wasn’t a new update posted last night.  The person in charge of that yesterday just didn’t quite get to it!

Ella is settling in nicely in her NICU home.  This is familiar to Ella and her mommy so, life is good again!  Yesterday was a better day.  Ella is showing fewer signs of withdrawal.  She had a bit of a rough day yesterday as they removed her drain, her pacemaker wires, and some other wires.  (Abbey had the technical names but, I won’t even try to remember those!)  At this point, all she has left is her PICC line and her feeding tube.

At this point in time, the only thing keeping Ella in the hospital is her eating.  So, let’s pray that she gets that “figured out” soon so she can be home with her family!!!

Thank you to everyone for keeping Ella close in prayer.  Have a great day!  It is almost the weekend!!

-Heather

Moving On

Philippians 4:6-7

“Don’t worry about anything; instead pray about everything. Tell God what you need and thank him for all he has done. Then you will experience God’s peace.”

 

I just talked to Abbey.  It sounds like Ella and Abbey have had a rough day.  I don't know who had it rougher.  Ella who isn't feeling too well or Mommy who wanted to put the smack down on some nurse.  Either way, no blood was shed in the PICU and the evening ended on a good note!

 

Ella was a little crankster all day.  Abbey said that nothing she did would calm her down.  She said that she kept asking her nurse if she thought Ella was having withdrawals from her pain medications and the nurse kept telling her "no".  Then, to make things even worse, I guess she was really late with Ella's feeds so, that made things even worse.  Finally, around 7:00 p.m. tonight, Life got a whole lot better.  Ella got to go back to the NICU where they know babies!

 

Abbey said that the nurse that Ella has tonight is positive that Ella is having withdrawals.  She said that Ella is her only patient tonight and she will do nothing but focus on keeping Ella as comfortable as she can.  The NICU has swaddled Ella for the night and the doctors ordered some tylenol.  When Abbey left, Ella was sleeping comfortably.  The nurse reassurred Abbey that they would be fine tonight.  What a relief to have her back to the NICU.

 

Ella still has the wires for her pacemaker but, the pacemaker is not attached to her.  They have it close by if she should need it but she hasn't needed it all evening.  She was moved out of the PICU because she had met all of the goals that she needed to meet to be a PICU patient.  What is left, the PICU does not specialize in.  So, the decision was made to move her to the NICU so that they can concentrate on getting Ella the help she needs to eat from a bottle.

 

So, what started out as a rough day, ended on a good note.  Tomorrow will be even better!

 

Prayer Request

Please pray that Abbey and Ella are able to get some much needed rest tonight.  Pray that Ella begins to feel more relaxed and gets her eating figured out.  Pray also that she begins to gain weight and starts knocking out her goals so she can come home.

 

Goodnight All-

Heather

Ella has a different plan!

I talked to Abbey on the phone last night and Ella was doing great.  The only things left were for the doctors to disconnect her pacemaker and for Ella to eat and grow.  Last night, Abbey's hope was that Ella would be moved to a private room by the end of the week.

HOWEVER, Abbey got a call last night that they turned the pacemaker back on.  While Ella was sleeping, her heartrate dropped into the 70's.  Her rate did go back up but, the decision was made that Ella is just not quite ready to be off of the pacemaker yet.  She is getting close though, so this isn't something to get too discouraged about yet!!

Prayer Request
Pray that Ella's heart continues to heal and that she is able to be rid of her pacemaker soon.  Pray that she wow's the occupational therapist today with her eating and that she gets that figured out.  Finally, just pray that she and her mommy have a good day and that she continues to heal.

Everyone have a great Tuesday!
-Heather

Monday Evening- No News???

When I got home from work tonight, I checked my facebook account.  Here is what I saw:

"They just turned off Ella's pacemaker because the doctor thought she did not need it since it really has not been firing much today since her heart has been doing it all on its own. Pretty sure my heart stopped beating when he reached over and flipped it off!!!"

Of course, dearest Sister, I couldn't believe that this is how I found out this great news.  However, keeping my cool, I decided to check my email.  So, I will give you a break since you did try to find me.  Just at the wrong place at the wrong time!

So, there's your update!  Ella appears to be off of the pacemaker!!!  As soon as I know the specifics, I will let you know!

Prayer Request
Please pray for a good nights rest for Ella tonight.  She has been one busy girl these past few days.  Pray that she is able to begin eating from her bottle and that she makes great strides with her eating.  Also, tonight, please say a special prayer for Madison who received her new lungs today.  Lots of prayers are being answered!!!

-Heather

11/4/2012 Evening Update

Good evening everyone!  Abbey just called with the latest Ella update.  I hope I repeat everything correctly!  There is A LOT to report tonight!  So, here it goes!

After removing the ventilator, it still wasn't set in stone that Ella would not have to get some kind of oxygen support before the end of the day.  However, Ella continued to amaze everyone and, as of a few hours ago, still had not needed any oxygen support!

Ella was still receiving two medications by IV earlier today.  One of those was her blood pressure medication and the other is a medication that is helping her heart.  (I can't remember the specifics and don't want to butcher that one!)  Abbey said that they had stopped her blood pressure medication earlier and that her blood pressure was beginning to rise again.  They were going to be starting her back on the medication that she was on prior to surgery, tonight.  This is an oral medication.  The doctor's do not seem to be concerned about the blood pressure and have indicated that this may just be something that Ella's body will have to, hopefully, outgrow.  So, as of now, the hope/plan is that she will be IV free tomorrow.

Probably the biggest news of the night is the pacemaker.  Abbey said that Ella got really "ticked" off this evening.  Abbey and the nurse were watching Ella's pacemaker while she was having her little "fit".  They both noticed (I guess the device flashes light on one side when it is doing the work and flashes light on the other side when it is the patients heart doing the work.) that Ella's heart was doing all of the work when she was upset.  This is HUGE as it is a very strong indication that Ella's heart is healing and her heart rate is starting to increase.  When the cardiologist did rounds, the nurse reported this and the cardiologist turned the pacemaker off for a few minutes to see what Ella's heart was doing on its own.  Ella's heart was still beating a little slower than they would like but, it is improving.  Therefore, the cardiologist made the decision to turn the pacemaker down to 80 bmp instead of 114 bmp.  The hope is that POSSIBLY tomorrow they can revisit and MAYBE turn off the pacemaker as well!

Abbey has indicated that once Ella can "kick" the pacemaker, she will be moved to a patient room in the PICU.  From there, she will just need to get her eating figured out. 

Finally, the biggest accomplishment of the afternoon/evening was that Abbey got to hold Ella for 3 hours.  She did say that she was scared to death to move, with all of the wires, etc. but, she did get to hold her!  I guess she even got a few smiles out of her!!!

Tonights Prayer Request
Please pray that Ella is able to be IV free tomorrow and that she is able to maintain a desirable heart rate so that the pacemaker can be turned off.  Please pray that she remembers all that she learned last week about eating from a bottle.  Pray that she heals quickly and is able to come home soon. 

What a HUGE difference just one day makes.  I hope you all had a wonderful weekend and continue to have a great work week.  Thank you for checking in on Ella.  I hope we have more good news to spread tomorrow.
-Heather

What's Missing?

Sorry that the picture isn't very big.  That is what happens when you send pictures through cell phones!  But, WHO CARES?????????????!!!!!!!!!!!

ELLA GRACE HAS LOST HER VENTILATOR!!!!!!!!!!!!!!!!!

Praise GOD.  It is an awesome day.  Ella's Auntie is SO happy.  I can't even imagine what her mommy and daddy are feeling right now!

I just talked to Abbey on the phone.  She said that before they took the vent out, the nurse had told her that most all babies require some oxygen support until their breathing gets regulated.  However, true to Ella fashion, she is breathing just fine without it!  However, knowing all of her antics to try to avoid using the canula before surgery, I am sure she will do whatever she needs to do in order to avoid a nasal canula again!  She is still on her IV's and pacemaker.  Earlier today when they checked her heart rate, it was in the 100's.  So, that means that her heart is healing! 

Ella's goals for today is to continue to breath well on her own.  They wanted Ella to be awake for 1 hour before Abbey was able to hold her.  So, the big happenings today was that mommy gets to hold her baby!!  Yay!

I should get another update tonight.  I will post as soon as I can!

Prayer Request
Please keep praying that Ella continues to improve.  Pray that she is able to start feeds tomorrow (maybe some through a bottle!!!) and that her heartrate continues to improve.

What a GREAT day!  Keep praying!  I hope you all are enjoying the beautiful weather outside. 
-Heather

Happy Birthday Ella Grace!!

Happy 2 Month Birthday Ella Grace!!!  Your Auntie (and Uncle and Cousin) love you soooo much!  Hope you have a great day and that you start feeling a lot better today!  You have taught your auntie more than you will ever know in your short 2 months of life.  You are one special little girl.  Hopefully you are home, all snug in your house, on your 3 month birthday.  We have a lot to talk about.  Olivia will teach you a thing or two about how to handle those brothers of yours!  She is pretty bossy to them and they just follow her orders.  I am pretty sure life will be a breeze for you, as they will do the same for you!  You and mommy have a good day.

I love you!
Aunt Heather

Ella's Afternoon Update

Good evening everyone!  Hope you all had a great day!  I got an Ella update this afternoon and wanted to share with everyone.

They tried to wean Ella of the ventilator today.  The doctor's felt that she was still breathing just a little too fast, which is a sign to them that she is just not quite ready to loose it yet!  Abbey said that she and the doctor got a good laugh because Ella's respiratories were around 80 today.  Before surgery they were MUCH higher than that!  So, yes, Ella was breathing a little fast but, she has shown GREAT improvement in this area.  Please remember that she is barely using the ventilator but, she is using it.  They are going to let her rest tonight and try again tomorrow.

Other than that, Abbey said she really likes Ella's nurse today.  It appears (from the picture above) that Ella has been getting some pampering today!

Prayer Request
Please pray that Ella is able to "kick" her ventilator tomorrow.  Pray for a good nights rest for Ella and her Mommy. 

Thank's for stopping by to check on Ella.  Have a good night!
-Heather

It's Going to be a Good Weekend!!

Update from Abbey!

"Ella is still on the pace maker. Her heart rate is still low. I think that there is some meds that they can try eventually. They are just waiting on her. They do not seem to be worried about this yet. They want to get her off of the ventilator before they worry about her heartrate.  The goal today is to get her extubated. They have started to wean her from her fentanyl and she is pretty close to being weaned off the ventilator. They stopped her feeds until they get her off. That is not a big deal at all. The nurse told me that when they get them off the vent that she likes for the babies to be held. I think it was the first time I was ever told to hold my baby!!! Otherwise she is doing good. Blood pressure is stabilized with the nicardipine. They want to try to wean her from that again as well. She is starting to look like a baby again, and not a huge marshmallow. The puffiness is going down enough that she actually can open her eyes a little bit.

I don't think I left anything out.

 

I think the thing I am most worried about is her heart rate. She needs to get going on that!!!!"

 

Prayer Request

Please continue to pray that Ella continues to show such great improvements.  Pray that she handles getting off of the ventilator well.  Also pray that as her body heals, her heart rate improves.  Also pray for her family as they make the trip to Kansas City today to see her.

 

Thank you to everyone who has been following Ella in her journal.  She is a very special little girl to all of us.  Everyone have a good weekend!

-Heather

Day 2, Post Surgery

Philippians 4:6-7

“Don’t worry about anything; instead pray about everything.  Tell God what you need and thank him for all he has done.  Then you will experience God’s peace.”

Ella Update from Abbey:

"1) Last night I learned that the doctor actually closed 3 holes. The VSD was closed with the Dacron patch, the ASD was closed with the stitch and the PDA was closed with ligation. Basically he tied it off. All babies are born with the PDA and they usually just close shut after a few days, but hers did not! 

2) They have officially started to wean her off of the ventilator. This could take a while as they are going to start weaning her very slowly. She still wants to try breathing over her vent a bit. They just want to go nice and slow since they are still wanting to give her lungs the opportunity to heal.  Her lungs were considered "sick" from all of the extra blood going to them and all the work that they had to do prior to surgery. She is going to continue to stay sedated until they are actually ready to take the tube out. They said that the tube is very irritating and can hurt. Once it is time to take it out, they will let her wake up. They want her to be fully awake and ready to breath on her own instead of all relaxed and chilled out. Her being upset will make her want to breath. 

3)  They turned off her pacemaker again today to see if the part of her heart that was "asleep" yesterday has "woken up." It is the part of her heart right next to the hole that they patched. Yesterday it was beating slower than they liked and irregular so they wanted to keep her on her pacemaker. Today during the cardiologists rounds, they tried again. Her heart is still beating slower than they like on its own, but it was beating regularly. This is good! This means that her heart is "waking up." They went ahead and left it off for a bit, like 5 minutes. The entire time it did have a regular heart beat. She is slowly taking her time, but is healing!

4) They are still doing her breathing treatments every 6 hours. This is to help get the mucus and gunk out of her lungs that is left over from surgery.  She is also not getting the mucus out on her own since she is sedated. She sounds a little better each time they do it. 

5) She has been responding well to her blood pressure med. It is not nearly as sporadic as it was yesterday. Her systolic number was all over the place yesterday. Today it has been more consistent. They are thinking that once she is showing that she is able to tolerate her feeds and is up to 24 mLs they might do an oral blood pressure medication.  

6) They are going to put back in her feeding tube today and start feeds and see how she does. She is going to start out at 5 mLs every hour. Every few hours they will reevaluate her feeds and determine if they need to go up or not."

Prayer Request
Continue those prayer's.  THEY ARE WORKING!!!  Pray that today is the day that Ella is able to start heading down the path of great healing.  Pray that she is kept comfortable and that she continues to show signs of breathing on her own.  Pray that she is able to tolerate her feeds today and that she continues to amaze her family, doctor's, and nurse's.  Finally, please pray for her daddy and brothers who are missing their mommy and sister. 

Thank you for checking in on Ella and for continuing to hold her in your prayers.  In this season of Thanksgiving, I am so thankful for all of the wonderful friends and family that we are blessed with.  Thank you so much.
-Heather

Keep Praying!

The latest Ella happenings!  (from Abbey)

"We got here and the docs had already rounded.  (6 am)  All of the little hiccups that Ella is having are VERY normal. She is not urinating the greatest, but they took out her catheter and will give her some lasix. She is puffy but not horrible. She was taken off her two blood pressure medications last night but they replaced those with a new one. She responded very well to the new medication.  They actually turned off the medication when we got here. It has been elevated again, but about where it was yesterday with the drugs. The nurse and I were just talking and I asked her if it was good that her bp is still reading the same even though she is not on the meds and she said that it was because she is making progress!

Another thing is that she is still hooked up to her pacemaker. It is set to have her heart beat 114 bpm and when she is off of it her heart beats 80-90 bpm. They want this number to go up. They say that a part of her heart has not waken up fully, which is also normal.  They are not overly concerned at this point.  

The last issue that she has developed is the most normal. She has developed a build up of gunk on her lungs. They said this happens with the vent and surgery. They are not going to work on taking her off the vent until they can get her all cleared out. The nurse told me that they were going to do a breathing treatment on her through her vent. The resipitory therapist came in and explained it. He is, well…..blunt in a very funny way. He is probably my age and seems very serious. He made the whole process sound very intense but then he throws out "but this is all very normal, so it is ok." Might need to work on his warm and fuzziness! Oh well, did not leave a whole lot for my imagination! 

Otherwise, that is all I know for now!"

Please keep those prayers coming!  We just need to get Ella through today.  I fully believe tomorrow will be a GREAT day for Ella!  Until tomorrow's update.....  Have a great evening!

Tonight's Prayer Request
Pray hard that Ella's heart is beating like the doctors want, that her lungs stay clear, and that her blood pressure remains stable.  Pray that she is able to rest tonight and that she has a great day tomorrow.

It's a New Day!

Philippians 4:6-7

“Don’t worry about anything; instead pray about everything.  Tell God what you need and thank him for all he has done.  Then you will experience God’s peace.”

Sorry that I didn't get an update posted last night.  Things were a little crazy at Aunt Heather and Uncle Troy's!! 

I talked to Abbey last night and things are going great.  Our Mom and Dad came home last night since Ella is doing so well.  The only thing that is really going on right now is that they are just monitoring her and making sure that she is comfortable.  Abbey indicated that she and Wyatt have been told that yesterday, last night, and today will be the worst as far as pain managment.  The good news is that Ella is needing very little oxygen and has already tried to breathe over the ventilator.  The nurse thought that they may get orders today to let Ella slowly wake up and to begin working on breathing on her own.  All in all, Ella is doing amazing and has amazed all of us with how well she is doing!

Thank you to everyone who took time out of their day yesterday to say a prayer for Ella.  You all are wonderful!

Prayer Request:
First of all, thanks that our prayers were answered and that Ella's big day finally came.  Please pray, today, that Ella continues to improve and that she is able to be comfortable today.  Continue to pray for Ella's mom and dad and brothers that they continue to do well with being apart. 

Thank you to everyone for checking in on Ella!
-Heather

Ella-
I had to put this in here for you!  Halloween will NEVER be the same for your family.  You won't remember yesterday but, we all will!  Your aunt and uncle went to your house yesterday to get your brothers ready for Halloween.  Your uncle Troy had some problems.  We all laughed at him when he got stuck in your bathroom.  I think he thought he was never going to get out!!  Then, aunt Heather couldn't find Brody's costume.  We looked everywhere!!  You know what?  Your grandma had taken it to your grandpa's shop!  Oh, you would have thought we were all crazy if you were here!  But, next year you will get your turn.  Keep getting better!!  We love you!!!!