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! 🙂

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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

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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

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