4 Months

Well....we have been a bit busy lately and did not get my update in as soon as I would have liked! There is so much to update!!
Ella is 4 months old.....4 MONTHS OLD!!!! Where, oh where did the time go! Ella has been a busy girl in 4 months. We all know how the first 3 months went, so lets focus on the last month. Ella celebrated her 1st Christmas and New Years. Wyatt and the boys went out to the Etzel ranch to celebrate while Ella and I were going to go to my sisters house. Then the snow came through and so Ella and I decided to stay at home. We watched lifetime tv and snuggled on the couch. My kind of night!
Ella has also started going to daycare. I was very sad and grouchy about having to leave her up until the actual day. I had no time to be sad, plus I was pretty excited to get back to my students and my friends at school. I missed them ALL so much! Haden and I went on our routine and Wyatt took Ella and Brody to our daycare, Karen (whom is the most awesome daycare provider in the world!! She is more than just a provider but a good friend and I consider her a part of my family!) Ella is doing great there! Of course she has her big brother and cousin there with her. I think she enjoys being around other kids.
Ella also had more blood work drawn just to check her thyroid levels. This was not a big deal as we knew we would need to monitor it. It all stems back to her Missouri newborn screening (she had to have a MO screening when she went to Childrens) and her thyroid not being where it was supposed to be. I was told that this is actually very common because most all the babies that are sick will have something up with their thyroid but it corrects itself. All is good since her levels came back looking great! YAY! Here in a few months she will have to have another ultrasound on her kidneys just to check in on the kidney stones that were starting to develop. This is due to all the LASIX that she received.
So here is the run down on our little Ella Grace at 4 months:
-24 inches long
-9 pounds 10 ounces
-still in newborn diapers
-wears some newborn and 0-3 months clothes. Depends on the style. 
-eats 100 mLs (a little more than 3 ounces) every three hours except at night
-sleeps 6 hours at night

How about a prayer request! I ask that you continue to pray for Ella's overall health. I pray that the kidney stones resolve themselves and we don't have to worry about them. I mainly ask for prayers for her and her little body having the strength to fight off all of the illnesses that seem to be flying through the schools and community.

Girls Day

Ella and I had our first girls day! My mom took the boys while Ella and I went out. We started our trip out with a fantastic photographer and friend, Amy of Cyphers Photography. She does FANTASTIC work and I could not imagine anyone else taking pictures of my baby girl. We had a great time hanging out and visiting with Amy. We took a few pictures together and then of just Ella. We even through in a stethescope as a prop. I am so excited to see those pictures. Amy really is going to do a great job at capturing Ella's "story" in a photograph! If you are a friend of mine on Facebook, you will be able to see one of the pictures that Amy took.
After a great morning with Amy, Ella and I loaded up and headed out for Topeka. I finally decided that it was time to visit the great staff at Stormont NICU. I really missed them and I know Ella did as well. Ellen, the nurses, and all other staff have become a huge part of the Althof family. Not a day went by that I did not think of them and how I wanted to visit with them. I really am not sure I can ever express how much appreciation I have for each and every one of them!!! The doctors that seemed to treat her more than as another patient, Ellen looking over her each and every day, the nurses that took care of her like Ella was their own, Terra that came and listened to me bawl, and of course all the additional staff!! I love that some of the nurses are on FB and are able to watch Ella grow through pictures that I post and read some of the random things I post on there, such as how Ella seems to have decided to be a night owl!! I so wonder why that is (night nurses!! :) )
Back on topic, Ella and I went to visit! What a fun visit it was!!! Ella was all smiles and active. Much different than the last time they all saw her! Of course we did not get to see everyone. I am thinking I might have to have a girls night and head up to see the night shift. After all, Ella will be WIDE awake to visit!
I look forward to more and more girl days with Ella. Let's face it....I can hardly wait to take her shopping for the first time! Or maybe mani/pedi's!!!

Amazed

It has been a week since I last posted so I thought I had better do something. I actually wrote this post a while ago but just never knew when or even if I wanted to post it! 

My family is feeling VERY blessed this season! We got the best present ever!! We brought home a healthy little girl! (I am still asking Santa for a jumbo bottle of hand sanitizer!!)

I can do all things through him who strengthens me

Philippians 4:13 

This verse has a lot more meaning to me than ever. I do not take it to mean that with God I can make all my dreams come true. Only I can do that! But what it means to me is that with Him, I was able to dig down in my heart and soul to stand strong and be there for my family when I really wanted to curl up and cry and ask "why us? why Ella?" I was able to find the strength to take everything that was thrown at us and charge through all of the scary times. Now, I am not saying that I did not start out this journey being angry and confused. I did everything right. I went back through my entire pregnancy to see where I went wrong, but I found nothing. I just could not except why I could do everything that I did and still have a baby that was so sick. After a while I realized that Wyatt and I did not get the raw end of the deal with a sick baby. In fact we got the best end of the deal....we got Ella. She is not just any little girl, she is Ella. She is PERFECT! She has the most amazing imperfections that make her to be perfect. She has the most beautiful scars that will forever be apart of her. But most importantly she taught me/us that we can do all things through Him. There is no defeat in this story. We were able to find the strength to be strong.

What Ella went through was horrible to us as this was something not routine to our family. Luckily, her heart defect can and was easily fixed through open heart surgery. What made it much more tricky was her size. They really prefer to do this particular surgery on babies that are over 6 months and more than 9 pounds. Unfortunately, Ella was not healthy enough to go home and wait until she was 6 months or more than 9 pounds.

The following picture is when Ella was a day out of her surgery.  She did not have nearly as many pumps as other babies, but to me this is WAY to many!!! They included all her sedation drugs, antibiotics, extra platelets and heart meds. Hanging off of her bed is her pacemaker. She had an IV in her right arm and foot, an arterial line in her left arm, and a central line in her neck. She also had four pacer wires coming out of her incision. Underneath her incision was the drain tube that drained out the fluids from around her heart. This was all in addition to her ventilator,  typical monitor wires and feeding tube. It was all overwhelming but I knew she would not have them forever. I knew that once she was off the vent, she would slowly lose the pumps and lines...and she did!

This is Ella just shy of 3 months. She went from being a baby with holes in her heart and congestive heart failure and looking like the picture above to being at home smiling and playing just like she should. She is pretty remarkable! AND Yes...she is in a blue bath towel but that is what happens to little girls that have big brothers. They get their old bath towels!!!! 

3 Months

So....this might be a little late, but better late than never!! December 4, Ella was officially 3 months old. I did not take a picture of her at 2 months because she was in the PICU recovering from surgery and waiting to be extubated. Not the best photo op!
Here is what Miss Ella has been up to the last three months:
-8 pounds 7 ounces (less than 3rd percentile)
-23 inches long (27th percentile)
-Eats almost 3 ounces at a feed
-Wears newborn diapers (we tried size 1 and they literally wrap around her waist!!)
-Wears newborn and started to wear size 0-3 month clothes. 
-Sleeps all night even though she is forced awake to eat (to hook her up to her feeding tube)
-Had open heart surgery
-Recovered from congestive heart failure
-Lived in 3 different cities/towns

 
The most important part about Ella at 3 months old is that we were told to expect her to be at least 2 months behind since she spent the first 2 months just trying to survive instead of focusing on development. They said that by the time she is 2 years old she should be pretty well caught up. WELL.....Ella likes to do things on her terms and that was just not acceptable to her. I keep getting reports about how she is comparable to other 3 month old babies!! Way to GO!!!!

One more thing. Ella had a cardiology appointment on Thursday at KU Med. She had a fantastic report! She does still have two little VSD patch leaks and an ASD leak. No biggie they said! The patch leaks will heal right up and they usually like to keep a little tiny ASD as a "pop off". They expect that by 6 months of age, all should be closed on their own and if not, we will just wait and watch. Nothing that will require surgery! It is all a matter of time. It is wonderful to hear good news!!!

12-12-12

What a fun date!!! It is especially fun for my oldest baby, Haden. It is his 7th birthday!!! Where oh where did the time go!!! He has been such a good little guy through out the time I spent with Ella.  In a very strange way, this has been very good for him. It has forced him out of his shell and to do things that he would not normally do!!
Here is a picture of the birthday boy with his baby sister!!!

Eye Doc!

Ella had her first eye doctor appointment today. She has been followed by an ophthalmologist at both Stormont and at Childrens Mercy. At Stormont Dr. Koederwitz said that she had Optic Nerve Hypoplasia and would most likely have some vision impairments but would not know to what degree until she was older. Needless to say, I was heart broken. I spent HOURS walking around her crib or isolate seeing if she would track and it really seemed like she would. I just kept thinking that she had to have some good vision because she really seemed to look at things and respond. Whenever I called to check on her when I was not there, I would run through my list of questions and one being, what do you think about her vision? The consistent response would be that they think she does a good job with her vision. Then at Childrens, their ophthalmologist also checked her vision, but found a different situation. They thought that she just had smaller optic nerves but more on the side of normal. Yes she could have vision impairments, but she could also have normal vision, and again we would know more the older she got but that this could be the case for everyone, small optic nerves or not. During all of her time in the hospital between all the nurses, doctors, and family, we would walk circles around her crib, all the while saying that she was really tracking us! The doctor and I concluded that half the world could have small optic nerves, but they just don't know it because they did not get the mandatory newborn eye screening like all babies in the NICU.
Fast forward to today. My mom and I took Ella back to Dr. Koederwitz. She worked with Ella on her tracking. I could not see how she was doing since I was holding her. I asked if she was tracking and she told me that actually her tracking was really good for a baby that is only 3 months!!! All of those laps paid off!!! This girl did not lack in visual stimulation! She also reexamined her optic nerves and concluded that yes, they are small, but have been developing. Basically, she is normal. She did tell me that Ella is very far sighted but so is every other baby. She did not feel as though she really needed to see Ella again until she is a year. This is a whole different plan than back in September. We were all prepared for lots of follow ups since that was what we were told. At the end of the appointment, it was said to bring her back at a year just to see how her far sighted vision is developing, but otherwise, she is doing great!! This is such AMAZING news!!! I have been floating around all day!!!!

December 8

We have had a busy week full of Tiny K and home health. Ok...so not really. In fact, by Friday I was getting a little stir crazy!!! Ella is officially 3 months old!!I will make that a post, hopefully tomorrow. I left Wyatt in charge of the crew and went to Hobby Lobby and bought the stickers. Then there was the trip to Target and Kohls. I am getting a little tired of seeing my four walls. I am starting to think about repainting!! Things are going to start picking up as far as activity once Christmas break gets here and the boys are at home all day.

Ok....So Tiny K came on Monday. Physical therapy evaluated Ella to make sure she was on target. There have also been concerns that Ella may be a bit tense. Jenny the PT evaluated her and thought Ella was doing a fantastic job!! She did not think she was tense at all. I would like to thank the big brothers for getting her to relax and helping her with her stretching. I do have to remind Brody that she is not made of rubber. Ella will not qualify for pt services. The occupation therapist also came to evaluate Ella. She was very pleased to see that Ella was very willing to take a bottle and would even ask for it. She felt that her biggest issue with Ella is that she is overwhelmed by the amount fluid and is a little unsure with what she is supposed to do. She is going to keep Ella on her case and have the dietitian come and meet with us on Monday to see about thickening up the liquid until she is able to control it herself. Otherwise, we just talked about the normal this is what you can do at tummy time, and here are some fun ways to keep her head up and here is something you can do to help her practice her eye tracking.

The home health nurse has come four different times to visit Ella since we have been home. I was told that all scales will be different. This has proven to be true. At the doctor's office Ella weighed 8 pounds 7 ounces. At the first home visit Ella weighed 8 pounds 4 ounces. The next visit was 8 pounds 5 ounces and then 8 pounds 7 ounces. She is gaining weight, just slowly. I increase her bottle amounts each week. She will go up to 80 mls a feeding tomorrow. However, I have gotten to the point that if she acts like she needs more to eat, then she gets it. We have pounds to pack on!!! Ella is starting to really act like a baby more and more each day. She interacts with the boys and LOVES her bouncy seat. I personally am not enjoying it as much since it literally plays the SAME THREE songs over and over and over. Poor girl did get a stuffy nose this week. I blame it on the boys...all three of them! No matter how much hand washing and cleaning, Ella and I both ended up with the stuffy nose. It makes it a little hard to eat, but she was a rock star this evening. At 5:45 Ella acted hungry so we gave her a bottle and she ate  45mls in about 10 minutes and then kicked it out. We don't push her and want to create a problem, so we just waited for her to give us hunger cues plus she was a bit early for her feeding. By 6:30pm she was giving us hunger cues again so we gave her the rest of her bottle and she gulped it down plus an additional 30mls! That equaled out to be 105 mls by mouth!! She eats every three hours, so 9pm rolled around and she acted hungry again. She at another 50 mls and then kicked the bottle out and had the "I am so full" look of content on her face. Usually with her 6 and 9pm feedings she should total out to have at least 140 mls. This girl had 160mls by mouth!! Big deal at our house!!