Emma is 10 months old!

Our sweet Emma girl turned 10 months old yesterday! She has 3 teeth on the bottom and one tooth that just poked through on the top! She is pulling herself to stand in her crib, she says da-da and ma-ma (usually only when she’s upset), she says hi and then she mimics things that we say. She is such a happy baby and always has us laughing at the adorable and goody facial expressions she makes. She has always loved music, but lately, she has really come to enjoy it more. Anytime she’s fussy, especially during her echos at her cardiology appointments, all you have to do is sing. She doesn’t care what you’re singing (usually it’s Jesus Loves Me) but she calms down almost instantly.

I apologize for not keeping up on this blog as much as I’d like, but her facebook page is usually where I post all updates about Emma. www.facebook.com/emmasjourney14

Here are some pictures I took yesterday. Enjoy! 🙂

What we’ve been up to

Hello all! So very sorry I haven’t kept you all up do date with Emma through this blog as much as I would have liked. Facebook is quicker and an easier way to make updates so if I’m not posting on here, I’m most likely on Facebook. 

Emma as been doing extremely well considering her condition. We’ve battled two viral infections. One was the metonumovirus, which she was airlifted to children’s mercy for the first week of April. She was having extremely low oxygen levels and children’s mercy did not feel comfortable with us being at Salina regional. She spent two nights in the hospital and then we were sent back home. Two weeks later, she was hospitalized again, this time in the ICU, for low oxygen levels and bloody stool. She was hospitalized for a week and they decided that Emma was struggling with a milk protein allergy. They put her on an expensive formula (and by expensive, I mean $42 for a 14 oz. can of formula! Yikes!) and wait until two weeks after I was on a dairy free diet before starting up breast milk again. She’s been back on breast milk now and seems to be doing better. Thank goodness, because she went through four cans in two weeks which was crazy! 

She’s still gaining weight but at a slower pace which is normal for a baby with a heart difference. Our goal weight is 13 lbs by her Glenn surgery which is in August. She has a heart cath on the 12th of June and we are praying all goes well with that. The cath will determine if she needs her next open heart surgery before August. Due to her lower oxygen levels, they think she is outgrowing her BT shunt quicker than expected since she was so small (only 5 lbs) at her first surgery. 

We have been so blessed to feel like we have a “normal” healthy baby on most days. She’s developing right on schedule and is the sweetest thing you’ll ever meet. She’s such a happy little girl.

Emma rolled over from tummy to back for the first “official” time today! Daddy was home to see it too. We also believe she is working on ozone teeth. She’s constantly chewing and sucking on anything she can get her hands on and likes her gums massaged 🙂 

 

Prayer Requests for our family:

Nick is currently working two jobs, so he is gone almost every day from 6:20am-11 pm. He’s working over a 70 hour week so the kiddos do t get much daddy time. Pray that we adjust, even though it’s been 4 weeks we are still trying to get used to it. 

The finances of our family could always use prayer 🙂 we are making ends meet but are still trying to adjust since I am no longer able to bring in any income. I am currently looking into making some hand made things such as scarves, baby hair bows and some other things to bring in some income to help with some of Emma’s medical expenses. What do you all think? I was thinking of using it as a fundraiser for Emma’s next surgery since Nick will be needing to take a few weeks off of work during that time. Let me know what you all think.

and last, but certainly not least. Pray for Emma’s health. Pray that she can stay well for the next eleven days leading up to her heart cath so we won’t need to reschedule. And of course we want her to be healthy all the time, but especially this next week and a half.

 

i want to say thank you again to everyone who has supported us, prayed for us and helped us out by randomly bringing meals and even just saying they’re praying for us. Words can’t express how thankful we are for YOU. God has been gracious to Emma and has a plan for her 🙂

 

Katelyn

 

Quick little updates on miss Emma Faith :)

These are status updates and texts I’ve sent to family members to keep everyone updated.

Saturday, Feb. 22, 2014
I was able to breastfeed Emma this morning and take her out of her bed and put her back without assistance from a nurse! She’s tolerating food well, but in the ICN she was only able to eat 10 ml at a time which is practically nothing. So she still thinks she’s done once she hits 10 ml. We got her up to 20 ml at her last feeding. Pray that she’s able to keep eating more so she won’t need to supplement with a feeding tube.
That way she will be able to move to the cardiac recovery floor sooner! We want to take our baby home soon. 🙂

Nick and Noah had to go back to Salina today so Nick can pick up hours at work. So I’m all by myself missing my boys 😦 I should be able to see them again on Thursday though.

Sunday, Feb. 23, 2014
She ate 20 ml in less than a minute this morning! Yay! She’s been eating every 4 hours so they are trying to get her to 3 hours and if she does that they can hold off putting the feeding tube in.
She has her umbilical line out, they were able to get her IV in this morning (which they have been have been having a horrible time with since she’s so little) and her dressing is off so you can see her chest. She also got her pacer wires out 😀 (which she never had to use. They were just there incase they were needed.)

Thank you for all of the prayers! Keep ’em coming because they’re obviously working! 🙂 everyone here at the hospital cannot believe how well she is doing, especially since she’s so tiny.

Katelyn

Surgery update

Emma’s surgery went great yesterday. It was a little more complex than we had expected. The doctor decided he would also need to do a pulmonary arterial plasty as well. She was finished with surgery at around noon,
But Nick and I were unable to see her until about 4 pm. She got off to a rocky start with her oxygen level extremely low even while on 100% oxygen and her blood pressure low as well. They decided that she would need another blood transfusion (this would be her 3rd).
It was pretty scary while they were trying to stabilize her. Doctors and nurses running everywhere and alarms going off on all of her machines. Nick and I decided to leave her room during that time so we weren’t in the way and they promised to come get us if anything got worse. When we returned an hour later, she had had her blood transfusion and her sats were up into the high 80’s lower 90’s which was wonderful to see! Her color was back to normal and we were excited to see that there was only one nurse in the room at the time 🙂 they told us we could stay the night in her room, but since she wouldn’t be waking up until sometime this morning, we decided to get our sleep and possibly stay the night Friday night when she’s awake. Nick and I were so exhausted yesterday and I kept dozing off anytime I sat down. I was able to go to sleep at 8pm last night! Now I feel ready for what the day throws at us and can’t wait to see our baby girl again 🙂
Thank you for your prayers!
Katelyn

Surgery day tomorrow

Just a really quick update on Emma.
Surgery is tomorrow morning at 8:30am. They are placing the BT shunt and possibly opening her pulmonary arteries since they look blocked on her latest echo. The surgeon won’t know if they need to be opened until he opens her up. We are so thankful that everything has gone so well this far and we are praying that things continue to go smoothly. It will be extremely hard to watching our sweet little 10 day-old baby to be wheeled off to have open heart surgery but we are trusting in God that she will come out of surgery okay and that we will be able to bring her home soon! Thank you all so much for your continued prayers.
Katelyn

Tomorrow is the big day!

Just wanted to give you all a quick update 🙂
Emma is scheduled to be born tomorrow morning via c-section! My surgery is scheduled at 9 am! We are so thankful that I have been able to carry Emma full term. I’ve been having lots of contractions this weekend, but nothing consistent enough to go to the hospital for.
Our families are all in the KC area ready for her birth! Nick and I are calm (almost too calm lol) and are ready for these next busy weeks ahead. We are praying that Emma arrives safely tomorrow with no complications and that we will hear that first big cry 🙂
And just a warning to you all, if you are friends of ours on Facebook, your news feed will probably be full of pictures of our sweet Emma 🙂
Thank you all so much for your prayers, thoughts and encouraging words. We are so blessed to have friends and family like all of you.
Katelyn

We have a delivery date!

Yesterday, January 15th, was our final appointment before re-locating to Kansas City. Like usual, we left Tuesday evening and stayed in the Kansas City area the night before. Fortunately we did, because I received an email asking me to come in at 8:30 am the next morning instead of our original time of 10 o’clock.
Once we arrived, I filled out tons of paper work to get everything set and ready for the big day. We filled out papers for the Ronald McDonald house as well.
Our first “appointment” was at 10 for the fetal echo. Normally these appointments have been taking near two hours because Emma is so active. But this time, it only took about 28 minutes and right as we got started, Emma flipped into the perfect position! The doctor and nurses were so excited and said they were able to get beautiful pictures of her heart. Nothing new was found other than a small leak in her aorta, but the cardiologist said that since it was so small, she wasn’t too concerned with it at this point. Everything else remained the same as our previous appointments and Emma’s heart has continued to grow with Emma which is wonderful!
We then took a tour of the PICU (pediatric intensive care unit) where Emma will stay after her first surgery. I had originally thought/assumed she wouldn’t be in the NICU her entire stay at the hospital. But the nurse who we spoke with said that she is only in the NICU before surgery and then will move to the PICU after surgery. The PICU was more like you’re traditional hospital rooms, only with a lot of extra monitors and equipment. I was pleased that the rooms were actually separated by walls and doors rather than curtains like in the NICU. They said that we can bring things to decorate the room and there are wooden shelves that we can decorate with picture frames and such to make it feel as much like home as possible.
We then toured another floor which they call the “boring floor” (which is a good thing I’m told). They said she will move there once she’s off of the breathing tubes and it eating well and that will be the final step before she is able to come home.
Our last stop was to tour the Ronald McDonald room for families of children who are being treated at the hospital. They have sleeping rooms, quiet rooms and unlimited food which is FREE. It’s an area to kind of escape from the hospital atmosphere and it’s a little bit more relaxing.
After our tour we met with what they call a PACT team. This group of woman are there for the parents and are there to listen to our needs. We met with a woman named Vivian for nearly an hour. I always find these meetings somewhat awkward. They ask a lot of personal questions to get to know us better and then we are asked what our hopes and dreams are for Emma, what our fears are and so on. I understand this is something they have to do to provide emotional support for families who don’t have a family and church family supporting them. But this woman was nice and I was glad when it was over haha.
After our PACT meeting we headed to the crazy busy cafeteria. Nick and I have decided that when we are actually staying there, we are NEVER going to eat there between noon and one. It’s a crazy madhouse. I also could not fit in ANY of the booths or tables because of my large stomach. A few people chuckled at me as I was trying to wedge my stomach in between the table and chair which was impossible. So I ate my lunch sitting sideways 🙂
My next appointment was with my OB. I had another sonogram done and we were able to get a face shot in 3D. It’s somewhat creepy looking since the umbilical cord was over her face and the placenta was crammed in there, but it’s still sweet 🙂 I forgot to mention in my last blog post that there was some concern with me having too much amniotic fluid which would put me at risk for pre-term labor. This time, my amniotic fluid was back to normal! As far as Emma’s growth, at our last appointment she weighed 3 lbs. This time, she was weighing 4 lbs. 11 oz. She was in the 28th percentile at her last check up and this time she is only in the 17th percentile. They aren’t too concerned unless she drops to the 10th percentile. The doctor said if she continues to grow steadily at this pace, they are predicting she will be 5 lbs. 14 oz. At 39 weeks when we deliver. Noah was 8 lbs. At 39 weeks so she is going to be so tiny compared to him. We just need to pray that she continues to grow and doesn’t drop any lower on the percentile charts. I will be going to my OB here in town weekly for BPP testing and sonograms to make sure that she is growing properly until I re-locate to KC.
We then set up the delivery date for February 10th! I’m not sure what time yet which is driving me crazy. But I do know for sure (unless Emma has other plans) that she will be here on the 10th! They are also setting me up to move to KC on February 2nd. They want to keep me there a week before just to make sure I don’t go into labor early, and if I do, I will be close by so I won’t need to be air lifted.
After the OB appointment we met with the two heart surgeons who will perform Emma’s first surgery. They explained in great detail what all is involved with the surgery and told us that it will take 1 1/2-2 hours. They both seemed very knowledgeable and we feel very comfortable with them performing her surgery.
Once we left the hospital, we toured the two Ronald McDonald houses. I was not expecting them to be as nice as they were. Meals are provided to families staying in the house, free laundry facilities including free laundry detergent, different items in the pantry that are also free. We were also informed that I will get two free meal vouchers a day so long as I’m breastfeeding and Emma is in the hospital. This was so good to hear since Nick will be back in Salina a lot of the time working, I will have food provided at no cost 🙂

It was a long day and we were so happy to be home. We feel good about the care Emma and myself will be receiving at Children’s Mercy and believe we are ready to welcome Emma into the world.

Prayer requests:
that the Ronald McDonald house has an opening the day I’m expected to be there. They said there is a chance there will not be a room available and I could have to wait. So we are hoping they have a spot open for us immediately!
Finances. I hate to bring this up in every blog post, but finances are a huge burden right now. We don’t want our family to be separated during the time Emma is in the hospital, but Nick needs to work because we can’t afford him not to.
Pray that Emma continues to grow and gain weight!
These next 17 days we have at home as a “normal” family. We are trying our best to enjoy this time with just Noah before life becomes crazier.

Thank you all so much for your prayers and support! It has meant so much to our family!

Katelyn

Update on our last appointment in Kansas City

I will apologize in advance for any typos. I’m typing this on my phone and auto correct is my worst enemy haha.
So it’s been a month since our last appointment in Kansas City. I failed to update you all due to a house full of daycare kiddos and all of the holidays. So I will give a quick update on how that appointment went.

Our appointment was December 11th. We stayed the night before in Kansas City so we wouldn’t have to drive the full trip before our 10am appointment. Our first appointment was for the fetal echo. We spent about an hour in that appointment and nothing new was found. Miss Emma was as squirmy as ever 🙂 we then went from our echo straight into a conference room to meet with the doctors, surgeons, specialists, nurses and a bunch of other people. It was extremely intimidating and “scary” to say the least. We were
seated and then asked to tell them what all we know is wrong with our baby. I know this stuff like the back of my hand. I’ve researched for hours and hours and know this subject very well. But when they asked me, my mind went blank. Next time I will come prepared with notecards with what exactly I’d like to say :). I believe they do this to see how well we are handling all of this and to see if we really know all of Emma’s health problems. Once we got through my “speech” we then were told again what all is medically wrong with our baby and we were shown different pictures. We spoke with the surgeon who will be performing her surgery and they told us what we were to expect as far as healing time and how long she will be in the hospital and so on.
We were told to expect Emma to be hospitalized for at least 6 weeks in the NICU considering everything goes as planned. There’s still some concern with malrotation of her intestines and there could be some eating issues. These are things we won’t know for sure until she’s born. She will have her first heart surgery within the first week of her life. The doctors said that they like to get to know the baby a little bit before they jump right into a surgery. When she’s born, if she’s breathing well and stabilized, we should be able to spend the whole day with her. They plan on placing her IV through her umbilical cord (instead of her head) to give her the medicine she will need immediately after birth. She will be on a feeding tube for a few weeks since babies with Heterotaxy tend to have difficulty with sucking and wear out quicker than a healthy baby.
Later that day I had a normal sonogram and then a 3D sonogram which I’ve never had before! Miss little stinker hid her face the entire time when we turned on the 3D camera. She has super cute ears and fingers though 🙂 it was nice to be able to see her fingers and toes and her little nose for once instead of only seeing her heart. She was playing with the umbilical cord on a lot of the pictures we saw :).
We then met with the OB who will be performing the c-section on me. I’m not sure I like him but I don’t really have a choice lol. He said that I will need to move to KC at 38 weeks (I’m 35 now) and then at 39 weeks we will plan on delivering the baby.

I go back to Kansas City on Wednesday, January 15th. This will be our last appointment before miss Emma arrives! I’m so excited to meet her and see her sweet face. The love that I have for this child already is indescribable and I haven’t even met her yet. I feel like I love her all the more for having all of these medical problems she will be living with. We know this is going to be a stressful and crazy ride but we fell like we are ready to love and care for this little one and to handle what God has given to us. Of course we are nervous and anxious and somewhat stressed. But we also know that all things work together for good to them that love God. This little girl has grandmas and grandpas, aunts and uncles, a mommy and daddy and a big brother who already love her so much!
We are ready to meet you sweet girl.

So how can you be praying for our family?

#1- Finances. Nick will be taking a lot of time off of work here and there so he can be with us in Kansas City during Emma’s first few critical weeks. He doesn’t have many vacation hours saved up so pretty much all of his time off will be unpaid. I also will not be able to work during this time so money is a huge concern right now.

#2- Noah. One of my huge concerns is that Noah will still feel loved and important through all of this. Since he won’t be allowed to see me while I’m hospitalized (due to flu season) he won’t be able to see mommy for at least 3 days. This will probably be harder on me than him. I just don’t want him to be pushed aside and all of our attention is only on the new baby.

#3- Strength. Neither Nick or I know just exactly how we are going to handle watching our baby go through open heart surgery so young. Just pray that we will continue to have peace and strength through all of the upcoming events.

Thank you all so much for your prayers and support this far. We have been blessed to have EVERY trips gas paid for in full by anonymous people. We have also been blessed in so many other ways by different people and we just want to say THANK YOU!

First Appointment at Children’s Mercy Hospital 11.20.13

So Wednesday was the first of many long appointments in Kansas City. We were able to head down Tuesday evening and stay in a hotel so we didn’t have to get up too terribly early for our 9 o’clock appointment. The schedule of our day looked like this:

 

9am- Fetal ECHO

11am- Cardiology Consulation

12pm- Tour for FHC, NICU and PICU

12-1pm- Lunch

1-2 PAT

2-3pm- Genetics/ Social Worker

 

After our 2 hour ECHO, we sat around a table with a cardiologist, and three of the nurses who will be taking care of Emma when she arrives. The doctor explained how a normal heart works and then explained what makes Emma’s heart different. Fortunately, she had plenty of pictures she could draw all over to help us understand better because the heart is very complex. Some of what we were told we already knew, and then there were some new things found. So what it comes down to is this:

 

 1. Emma has a rare birth defect called Heterotaxy Syndrome.Heterotaxy syndrome which involves the heart and other organs. The beginning of the word (hetero-) means “different” and the end (–taxy) means “arrangement.” There are different forms of heterotaxy. All usually involve heart defects, of varying type and severity.

 

More easily stated, heterotaxy is comprised of 4 defining characteristics:

1. Deranged abdominal organ asymmetry: stomach, spleen and liver are commonly misplaced.

2. Major heart defects: almost always including the absence or poor formation of major vessels.

3. Rotation errors: such as the heart rotated so the side normally facing the chest is facing the back.

4. Organ malformations: commonly the spleen is absent or deformed.

Emma’s type of Heterotaxy is called Asplenia. Meaning she’s missing her spleen. This will make it extremely hard for Emma to fight off infection down the road which means she will be on several different types of antibiotics over the first year during all of her surgeries. She will also be born right in the middle of flu and viral season which doesn’t help.

We were also informed that her stomach is on the opposite side that it should be (which we already knew) and her liver in more centered in her body. Her heart is slightly off to the center of her body as well but isn’t rotated at all which is good. With the stomach being on the wrong side, they are worried about malrotation of her intestines which can be extremely dangerous. But we won’t know until she’s born if that’s the case. If her intestines are rotated, she will have a hard time eating and keeping food down and will need abdominal surgery also.

2. Emma has Complete Unbalanced AV Canal Defect. More blood is being pumped into one side of the heart causing the smaller side not to grow and mature like it should.

3. Emma has a Hypoplastic left ventricle. Hypoplastic left heart syndrome affects a number of structures on the left side of the heart that do not fully develop, for example:

• The left ventricle is underdeveloped and too small.

• The mitral valve is not formed or is very small.

• The aortic valve is not formed or is very small.

• The ascending portion of the aorta is underdeveloped or is too small.

 In babies with hypoplastic left heart syndrome, the left side of the heart cannot pump oxygen-rich blood to the body properly. During the first few days of life for a baby with hypoplastic left heart syndrome, the oxygen-rich blood bypasses the poorly functioning left side of the heart through the patent ductus arteriosus and the patent foramen ovale. The right side of the heart then pumps blood to both the lungs and the rest of the body. However, among babies with hypoplastic left heart syndrome, when these openings close, it becomes hard for oxygen-rich blood to get to the rest of the body.

4. Emma has Double Outlet Right Ventricle (DORV). In a double outlet right ventricle defect, the pulmonary artery and the aorta—the heart’s two great arteries—both arise from the right ventricle..

5. Emma has pulmonary stenosis which is abnormal narrowing of the opening into the pulmonary artery from the right ventricle or pulmonary atresia Pulmonary atresia is a congenital malformation of the pulmonary valve in which the valve orifice fails to develop. The valve is completely closed thereby obstructing the outflow of blood from the heart to the lungs. As of right now, they are not 100% sure of which condition she has since she wouldn’t sit still long enough. They plan on doing a follow up ECHO at my next appointment.

We were told that Emma will need a series of three surgeries at least. The first surgery they will do is within the first few weeks of her life. She has to have it before leaving the hospital. This surgery they will be placing a modified blalock taussig shunt.

The second surgery will take place between 6-9 months . This surgery they will be placing a bidirectional glenn shunt.

The third surgery (and hopefully the last!) will be the intracardiac fontan. They plan on doing that procedure between 3 and 4 years old.

After our meeting with the doctor, we were given a tour of the area we will be seeing a lot of over the next year. We walked through the NICU where Emma will spend her first weeks. I was also shown where I will be staying while we’re there.

We then met with others who talked about us re-locating a little further in this pregnancy and where we would stay. Then we met with the anesthesiologist and then all of my vitals were checked to make sure that I’m healthy enough to deliver in the children’s hospital.

At the end of the day , we were set up with our next appointment in 3 weeks and I was given a patient pass and told I had been approved to deliver there.

Overall, we were overwhelmed with all of the information that we were given. But I feel so much better now seeing where everything will happen and meeting certain individuals who will be working with us for many many months to come.

Thank you all so much for all of your prayers!

Katelyn

Already a Blessing

Since being told about Emma’s condition, there have been many things to worry about. How much is treatment going to cost? Where will we stay during her time in the hospital? How will we afford to get there? What vehicle will we use? Obviously, worry get’s you nowhere. But prayer does! I posted on Facebook the following day asking for prayers for our little Emma and for finances. We were overwhelmed by all of the people who said they were praying for us. People we haven’t spoken with in years or people we haven’t spoken to at all. It was amazing to me to see all of the support that we have. By the end of the weekend, we were offered several places to stay in KC by different individuals we have crossed paths with throughout the years and we were also given the finances to cover the price of a minivan!!! We will pick up our minivan today at 5 when I get off of work and I cannot wait! See, Emma has already been a blessing to our family and we are already seeing how God will supply ALL of our needs…

UPDATE ON DOCTOR APPOINTMENTS:

I was finally called by Children’s Mercy hospital to set up an appointment! They want to get me in tomorrow, which is a lot faster than I thought it would take to get in. I spoke with a nurse practitioner for over 25 minutes about Emma’s diagnosis and what they planned on doing going forward. So tomorrow is our first of many visits to Kansas City as we make plans for her arrival. I will have a two hour echo of Emma’s heart, meet with the pediatric cardiologist, meet with the surgeon, meet with a genetic counselor and get a hospital tour. I was pleased when I was told that I can deliver at Children’s Mercy! One of my biggest fears was having to deliver Emma in one hospital and then them whisking her away to Children’s Mercy. Since I’m having a C-section, I will most likely not be able to leave the hospital for a few days. The thought of my baby girl being in a completely different hospital than me just had me upset and worried. So this was a HUGE relief!

I will update again tomorrow evening or Thursday on how the appointments went and post pictures of our new (to us) family vehicle!

Again, thank you everyone for your prayers!