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