I knew time flies, but I had not realized that it has been 4 months since I last posted!!! Where has that time gone! I am laying here thinking about Miss Ella and decided that I need to update everyone on her progress. There is a lot so I will do my best to keep it short. I will also add some pictures when my camera is charged (lost the charger, had to order a new one, so I am patiently waiting).
Ella is 10 months old and getting longer everyday. Unfortunately she is not getting heavier. She weighed in at a whopping 12 pounds 10 ounces. Much smaller than we want. That earned us a trip back to CMH to see the nutritionist. I really liked Amy and she gave me some fantastic ideas and is really not overly worried. In the meantime, Ella still has the Mic-Key button (gtube). I have finally come to terms that I have a love/hate relationship with Mic-Key. I hate that she has to have it. To me, it feels like that one last thing keeping us from getting off this horrible medical ride. It is yet another daily reminder that she was so sick and that she is still having some struggles that I can not fix. BUT on the other hand, she does need to gain weight so instead of worrying about how I am going to get her to eat with out forcing it into her mouth, I can just hook her up. For example, she really was not in the mood to eat today, so she is sound asleep, hooked up to her feeding pump getting in some much needed calories. Easy as pie........until I have to unhook her. I am PETRIFIED that she is going to pull out her Mic-Key button so I have all of her tubing taped to her body. I mean TAPED!! I figured for the rest of the night, I will unhook her from the bag tubing and tuck the small tube into her pj's. (I might have to post a pic of what feeds entail for those that don't know!) In the morning I will just hope and pray the tape comes off smoothly.........
Ella continues to have Jen, the occupational therapist, come about every two weeks. We really like Jen! She has helped us with so many things. Her main focus is Ella's ability to eat. We are working on solids but she has this nasty gag reflex so we are teaching her to work through that. She has also learned how to sit up which was actually very difficult for her. Just in the last week she is finally able to do it without supporting herself by leaning. This has less to do with her muscle control and more to do with a small bottom and very thin torso. She has very little to balance herself on! I cannot hardly wait to show Jen in the morning how she can crawl on her knees and pull herself up!! There are some things that I have noticed that Ella is somewhat delayed on, but for the most part, she is right on target!!! The doctors have really been impressed that she is really not 2 months behind!
Ella really is a little miracle baby!! Not a day goes by that I am so thankful and proud of her and her big brothers. I am so honored that God choose me to be the mother of such amazing children!!
Her pump is beeping which means she is done eating, so I am going to go get her unhooked, figure out what to do with her tubing, and go to bed. The best part of the going to bed.....it's not 2am! She went to daycare today so she is POOPED!! Thank you Karen!!!
Wednesday, July 24, 2013
Friday, March 29, 2013
Appointment
Ella had her last scheduled appointment at Children's Mercy. This appointment was with genetics. I just hate the word genetics. Whenever I hear it, it makes my palms sweat! This was something I just never felt comfortable discussing. I feel like I have been fairly open when discussing everything else, but this area. When she was at Stormont, she had some signs and symptoms that made the doctors concerned. When she was transferred, Stormont had requested that the genetics doctors visit with Ella. Come to find out, whenever a child has a congenital heart defect, it is standard to have genetics take a look anyways. Of COURSE, they ran some tests. We had already had a chromosome test and micro array chromosome test completed while in Stormont. Both came back normal! That made us a bit ahead of the game at Children's so they went ahead and ran a few more tests and scans. The first full day in Children's, they gave us a complete list of tests and so on and so forth. Then my mom and I (Wyatt was with the boys) tried to process this info and then went to the Ronald McDonald house where I tried to shut my mind off. We were at the smaller RMH and they had a LOT of memorials on the wall which caused an extreme emotional breakdown. My mom and I PROMPTLY left the room and frantically found a plan b. We wasted several hours at Target and IHOP and talked about what we thought the findings of the genetic testing would be. We then headed back as it was now VERY late, went to bed, got up, packed up our stuff and checked out!
A few days went by and the first test came back. NEGATIVE! WHEW!! This was a relief. Days went by and more tests came back and more negatives. Then they thought that we should test for something else. By this time all the neonatalogists felt that the genetics doctors were just digging for something else. I agreed!! I told them that I felt like they were a pest I could not get rid of! By the time it came for discharge, the genetic counselor came up to talked to me. She basically said that at this point, there was nothing else that they think that they need to do. YAY!!! THEN she said that she wanted to take some pictures and would put it in our file so that the doctors can track her growth and development for our next appointment........WHAT!!!! I thought I was wrapping this up!!!
Lets fast forward to March 26th. Wyatt and I loaded up and went to our appointment, which was called a "follow up." I completely analyzed this. We get there, the nurse asks us questions and leaves. Then Caitlin the genetics counselor asks us the same questions, plus a few more. She talked about how she remembers Ella, then says that she is going to get Dr. Saphina and will discuss with her then Dr. Saphina will come and look at Ella. It took FOREVER for the doctor to come back. I just knew that they were on the Internet trying to google something else to test because they ran out of other ideas.
Along comes Dr. Saphina. (She was very awkward, but doubt very good at her job.) She asks THE SAME questions and then checked Ella out. She kept commenting on things that she remembered about Ella, mainly how much better she looks and that she is no longer purple! I took this as, "your kid was very memorable due to all her symptoms and being so sick." I got this from the guy that did our Echo a few weeks ago and told me that he really remembers those patients that are really sick. Then proceeded to tell me how he remembered Ella. Not what every parent wants to hear!
I thought it was really interesting the things that Dr. Saphina remembered. i am sure they were in her file, but they were very minor things that she remembered!
After more chatting, Dr. Saphina told us what she thought. She said that there would be no more testing as Ella is doing great and looks great and there is nothing that makes her think she needs to continue, unless I felt that something has come up that concerns me. She said that she could see her in a year, but will leave it open ended, meaning if there are no concerns, then we do not have to worry about it. She felt Ella's issues are a genetic anomaly, meaning, there is an unknown reason as to why Ella had the issues she had, or why she had a Single Umbilical Artery. It could have been something like not enough blood flow to help her develop appropriately in the womb. Bottom line....Ella is PERFECT!!!
We have FINALLY succeeded in not having to deal with genetics ANY MORE.....until Ella is ready to have her own babies, then it is suggested she see a genetic counselor. But that is 40 years down the road......right!
A few days went by and the first test came back. NEGATIVE! WHEW!! This was a relief. Days went by and more tests came back and more negatives. Then they thought that we should test for something else. By this time all the neonatalogists felt that the genetics doctors were just digging for something else. I agreed!! I told them that I felt like they were a pest I could not get rid of! By the time it came for discharge, the genetic counselor came up to talked to me. She basically said that at this point, there was nothing else that they think that they need to do. YAY!!! THEN she said that she wanted to take some pictures and would put it in our file so that the doctors can track her growth and development for our next appointment........WHAT!!!! I thought I was wrapping this up!!!
Lets fast forward to March 26th. Wyatt and I loaded up and went to our appointment, which was called a "follow up." I completely analyzed this. We get there, the nurse asks us questions and leaves. Then Caitlin the genetics counselor asks us the same questions, plus a few more. She talked about how she remembers Ella, then says that she is going to get Dr. Saphina and will discuss with her then Dr. Saphina will come and look at Ella. It took FOREVER for the doctor to come back. I just knew that they were on the Internet trying to google something else to test because they ran out of other ideas.
Along comes Dr. Saphina. (She was very awkward, but doubt very good at her job.) She asks THE SAME questions and then checked Ella out. She kept commenting on things that she remembered about Ella, mainly how much better she looks and that she is no longer purple! I took this as, "your kid was very memorable due to all her symptoms and being so sick." I got this from the guy that did our Echo a few weeks ago and told me that he really remembers those patients that are really sick. Then proceeded to tell me how he remembered Ella. Not what every parent wants to hear!
I thought it was really interesting the things that Dr. Saphina remembered. i am sure they were in her file, but they were very minor things that she remembered!
After more chatting, Dr. Saphina told us what she thought. She said that there would be no more testing as Ella is doing great and looks great and there is nothing that makes her think she needs to continue, unless I felt that something has come up that concerns me. She said that she could see her in a year, but will leave it open ended, meaning if there are no concerns, then we do not have to worry about it. She felt Ella's issues are a genetic anomaly, meaning, there is an unknown reason as to why Ella had the issues she had, or why she had a Single Umbilical Artery. It could have been something like not enough blood flow to help her develop appropriately in the womb. Bottom line....Ella is PERFECT!!!
We have FINALLY succeeded in not having to deal with genetics ANY MORE.....until Ella is ready to have her own babies, then it is suggested she see a genetic counselor. But that is 40 years down the road......right!
Saturday, March 16, 2013
Funny Little Things
Those of you that know me, know that I worry about EVERYTHING!! So my newest worry stems from facebook. All of my friends with babies kept posting these adorable videos of their kiddos giggling. I think it is fantastic, but I am slowly developing this fear that Ella should be laughing more. This results in massive internet research and fear that there is something wrong with her. I sometimes forget that the doctors have told me that Ella could be 2 months behind her developmental age due to her tough start. Up to this point Ella has been doing everything on target, except the belly giggles that I think she needs to be doing. This post leads me up to the following video.
Tuesday, March 12, 2013
OH MY.....
Has it really been 2 months since I put anything on this blog??? We have been very busy! Ella is at daycare with her big brother and I am back to work. It is actually very nice to have a routine!
Ella has had 2 appointments just in this month that were kind of important. We had to go back to the cardiologist last week. Ella is showing that she does have two small holes still. He was really not concerned. We did talk about why these two holes had such a major impact on Ella. It was weird to hear everyone tell me how common the holes were but still see that she was in congestive heart failure and having such a difficult time. I would be sitting in the lobby with other parents and listen to their stories about how their child's heart needed to be reconstructed and so forth. I am more than positive that why this happened to Ella was explained to me before, but I was also not really in the frame of mind to register the why. I could tell you so many other things but the answer to this question. I also have people keep referring to Ella as a preemie, even though she was a 39 weeker. I finally understood why!
Ella had a 2 vessel umbilical cord which did cause some growth restriction. When she was born she had similarities of a 32 week baby, hence the premature. This also caused her little system to not handle the heart defect as well as bigger, stronger babies. When babies are born, the pressure in their lungs slowly open up allowing them to start working and allowing blood flow. This is usually a slow process, but for Ella, her body was not strong enough and her pressures tanked. He compared it to a dam breaking allowing the blood to rush to her lungs. When we say that her lungs were filled with fluid, it was not fluid like a cold, but blood in her veins.
As a result of all the blood being shunted to her lungs, her heart had to work extra hard to get blood to go everywhere it needed. This caused her body to go into self preservation and focus on getting blood to the main organs and not so much to her limbs and skin. This gave her a dusky appearance and actually made her fingers and toes white, like a weird not normal white!
NOW our little Ella Grace has a normal body color, except her fingers and toes turn purple when she is cold, but I was told not to worry about it, but it is still WEIRD!!! She is no longer considered to be in congestive heart failure and the holes that she does still have could possibly heal, but will not cause any issues!
This brings me up to today. We had our pediatrician appointment. She weighs 10 pounds 12 ounces and is 26 inches long. We are not going to remove the feeding tube because Ella did not gain as much weight as we would have liked. She did not make the curve on her growth chart like she should have/ He would like her to gain more, but he knows that she is growing because her height is still making the curve, unlike her weight. He said that this just means that she needs more calories. She needs to get 600 calories a day so I had to break all of that down. Basically she needs to get her tummy to take more frequent feeds or 5 ounces at a feed. In order to make sure she gets this, we MAY have to put what she does not get through her tube. Not a big deal, but I am not to pumped about having to change the Mic-Key! That is where Nurse Grandma is going to come in! :) Otherwise, Dr. Cooley thought Ella was doing remarkably well from where she started! I must say, I am pretty darn proud of that girl!
Ella has had 2 appointments just in this month that were kind of important. We had to go back to the cardiologist last week. Ella is showing that she does have two small holes still. He was really not concerned. We did talk about why these two holes had such a major impact on Ella. It was weird to hear everyone tell me how common the holes were but still see that she was in congestive heart failure and having such a difficult time. I would be sitting in the lobby with other parents and listen to their stories about how their child's heart needed to be reconstructed and so forth. I am more than positive that why this happened to Ella was explained to me before, but I was also not really in the frame of mind to register the why. I could tell you so many other things but the answer to this question. I also have people keep referring to Ella as a preemie, even though she was a 39 weeker. I finally understood why!
Ella had a 2 vessel umbilical cord which did cause some growth restriction. When she was born she had similarities of a 32 week baby, hence the premature. This also caused her little system to not handle the heart defect as well as bigger, stronger babies. When babies are born, the pressure in their lungs slowly open up allowing them to start working and allowing blood flow. This is usually a slow process, but for Ella, her body was not strong enough and her pressures tanked. He compared it to a dam breaking allowing the blood to rush to her lungs. When we say that her lungs were filled with fluid, it was not fluid like a cold, but blood in her veins.
As a result of all the blood being shunted to her lungs, her heart had to work extra hard to get blood to go everywhere it needed. This caused her body to go into self preservation and focus on getting blood to the main organs and not so much to her limbs and skin. This gave her a dusky appearance and actually made her fingers and toes white, like a weird not normal white!
NOW our little Ella Grace has a normal body color, except her fingers and toes turn purple when she is cold, but I was told not to worry about it, but it is still WEIRD!!! She is no longer considered to be in congestive heart failure and the holes that she does still have could possibly heal, but will not cause any issues!
This brings me up to today. We had our pediatrician appointment. She weighs 10 pounds 12 ounces and is 26 inches long. We are not going to remove the feeding tube because Ella did not gain as much weight as we would have liked. She did not make the curve on her growth chart like she should have/ He would like her to gain more, but he knows that she is growing because her height is still making the curve, unlike her weight. He said that this just means that she needs more calories. She needs to get 600 calories a day so I had to break all of that down. Basically she needs to get her tummy to take more frequent feeds or 5 ounces at a feed. In order to make sure she gets this, we MAY have to put what she does not get through her tube. Not a big deal, but I am not to pumped about having to change the Mic-Key! That is where Nurse Grandma is going to come in! :) Otherwise, Dr. Cooley thought Ella was doing remarkably well from where she started! I must say, I am pretty darn proud of that girl!
Monday, January 14, 2013
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.
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.
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