April 28th- 7 weeks old!

Feeding, feeding, feeding.. that is our focus now. Before we had Sadie, I would have never been able to convert millileters to ounces but now I am a pro. And now, it is the dreaded ml that I face every three hours. To you, forty five ml may sound ambigious, you may have no clue if that is a large or small number. Well from my point of view, it is the smallest and the biggest. It is small in comparison to any grown person, an ounce and a half of liquid. But, for Sadie it is a very large number. And up until today, it was our goal to reach that number every three hours. We have been doing pretty good reaching it, but it is always scary as it approaches time for me to feed her. I am always plagued with worry.. Is she going to latch or be crazy? Is she going to allow me to pace her or suck in extra air? Is she going to stay awake long enough to finish her feed or fall asleep half way through? And the worst worry of all.. is she going to keep this down or throw it all up? Each time we eat, I ask God to provide her with the coordination, endurance, strength, desire and tolerance she needs for her food. Over the last few days, she has been doing great, but her needs are always increasing.


According to the scale I weigh her on every morning, she has been slowly gaining weight. So, when I headed to the pediatrician's office this morning, my hopes were high! We had a great weekend, she was eating well, had stopped throwing up most of her food and had gained approximately two ounces. Well, according to their scale, she had lost two ounces so they said we needed to up her feeds. I immediately felt defeated, it was hard enough reaching the 45 ml, but upping to 60 ml or eating every two hours just seemed impossible. But, I know that they just want what is best for Sadie. After her pediatrician appointment, we headed to the cardiologist. They did an echo and an EKG and Dr. Lacey said both looked beautiful. In fact, she said that her left ventricle has been steadily growing compared to both her fetal echo and newborn echo! That is great news. Then came the dreaded food talk. I had recently stopped fortifying the breast milk with formula because I thought that was what was making her sick. Well, Dr. Lacey said we needed the extra calories so we should try to fortify with less formula to see if she could tolerate it. She told me if she could not, we would try other things. Well, so far, she has only spit up a tiny bit, so we are doing good. Pray things continue to trend in that direction as we need her to get bigger and stronger! Just look at the size of her "wubbanub" (the giraffe pacifier) compared to her!


In other news, we have seen the hematologist and they will be ordering an ultrasound of her leg for sometime in the middle of May. IF her blood clot is gone, we will be able to stop the Lovenox injections! Pray for that to happen as we (well mainly Zachary) hate having to give her shots. We have also seen speech therapy once and that appointment went great. Of course, she eats great when they are around! But, we will be seeing them twice a week for some time, so hopefully that will continue to go well.  I have also scheduled appointments with urology, nephrology, ENT, physical therapy and I am waiting to hear back from genetics! It has been a crazy ride already, but we are enjoying each day. 

Finally, I have not said much about Sadie and Kinsley. Well, Kinsley is an amazing big sister already. She loves Sadie! If we ask where she is, she almost always knows and will lead us to her. She is also doing a great job being gentle with her. And here is one cute story. The other day, I was coming home from an appointment and had both girls by myself. I parked the car and got Kinsley out before I grabbed Sadie. Well as I pulled Kins out of the car, she looked and saw that Sadie was still in the car. I shut the car door to go around to get Sadie and Kinsley immediately started crying! She thought we were leaving her baby behind! I rushed to the other side and grabbed Sadie and she was all better. Look at that sisterly love already! I am so proud!

Verse of the Day:
"When my heart is overwhelmed, lead me to the Rock that is higher than I." Psalm 61:2

Everyone said over and over again that feeding would be the hard part. I listened and believed, but did not realize the extent to which this was true. First of all, I knew it would be hard but figured it would be solved while we were in the hospital. I thought, we are going home that means we have it all under control.. boy was I wrong! Feeding is the constant struggle that I face. I remember the first time Sadie was allowed to eat from a bottle. The speech therapist came in the room and sat down ready to feed her. I was so jealous, I wanted to be able to feed her. Well now, I enjoy feeding her but often times I am terrified. I am truly overwhelmed by her need for nutrition. I hate that at times, I can not help her get it. I am terrified that we may have to put the tube back in if she can not eat enough. Yet, I know that it is all for her good. I know the each doctor who is giving me instructions loves Sadie and wants what is best for her. So, I must not be overwhelmed. The Lord put each of them in our lives for a reason, so I must try that they are making the right decisions and I must lean on the fact that the Lord will not give me more than I can handle with Him! He is my Rock, He is higher than I am. So, when I am discouraged or fearful, I just think of how lucky I am that He entrusted me with sweet Sadie Grace. So, I will lean on the Lord, my God and trust in Him in spite of my fears!

Praises for the Day:
1. Emerie's heart has grown!!!!! Sweet Emerie, Sadie's best friend and the other little girl with the same heart condition as Sadie, had her cath done last week and the results were amazing. Her heart has grown so much that she should be able to have a two ventricle heart!
2. Sadie has been able to keep her food down.
3. Sadie's echo and EKG looked great!

Prayer Requests for the Day:
1. Pray that her blood clot will be gone by the time we do her ultrasound.
2. Pray for her cystic hygroma to dissolve on it's own! It has been growing slightly and we are not sure why. (We go to the ENT on Thursday, so hopefully we will be able to get some answers)
3. Pray for her to have the coordination, endurance, strength, desire and tolerance she needs when eating!
4. Pray for her to gain weight (not too fast though)!

April 17th- Home Sweet Home

Sorry I have been MIA. It has been a crazy week... to start with, we moved. Last Tuesday, we toured a new place, put in an application on Wednesday, were approved on Thursday and moved in on Saturday. CRAZY! Second....

We finally got to bring Sadie home! And we have made it through a full day and night. It is beyond wonderful to have our sweet Sadie home with us.. and shockingly it has not been as scary as I would have imagined. We are definitely tired, but it is worth every lost minute of sleep!

Now, we begin the process of settling into our new life as a family. I kept telling everyone that I did not feel like I had two kids yet because I never really had them at the same time. Well, now I know that feeling. When we left the hospital, we did not have Kinsley with us. She was with my aunts, cousins and mom. Soon after they dropped her off, we showed her Sadie and then Zach fed Kinsley while I fed Sadie. After I finished feeding Sadie, I went into the kitchen and Zach asked me to feed Kins for a minute. So, there I was holding Sadie and feeding Kinsley. I also felt like the mother of two when Kinsley ran in and tried to pat Sadie. I am so thankful for the challenges that await us though! I am also ready for the changes.

From now on, my posts will not focus on white blood cell counts, platelets, ultrasounds or x-rays. We have new things to focus on.. like counting the number of poos and pees. We also have to check her pulse ox levels twice a day and weight once a day. In addition, we have to give her all of her meds. She is actually not on that many, but it is a lot of work keeping track of them. I did feel very accomplished after we made it through our first set. In addition, we are really focusing on her feeding. Her current goal is 45 ml every three hours. Whatever she does not take by mouth, has to go in the tube. Well.. I am happy to report that since we have left the hospital we have had seven feeds and I have only had to give her the milk through the tube two times! She has taken the full amount by mouth every other time!! Praise the Lord! In addition, she has not had any trouble latching!

I also have to make sure I keep all of her appointments straight.. we have the following people to see for Sadie: Pediatrician (Dr. Mary), Cardiologist (Dr. Lacey), Hematology, Urology, Nephrology, Speech Therapy and ENT! Tomorrow is our first appointment with Dr. Mary so we are very excited for that!

Well I am exhausted, so that is all for now!

Verse of the Day:
The Lord is my strength and my shield; my heart trusts in Him, and I am helped. My heart leaps for joy and I will give thanks to Him in song. Psalm 28:7

It has been amazing to see how well Sadie has done through everything she has faced. As I have had the opportunity to spend time with her outside of the hospital, I have seen even more of her sweet personality. She spent so much time awake and happy today and it was beautiful to see. Her big eyes were just curiously staring at me and the things around me and she was so content! It is so wonderful to see her happy and just able to be a baby. I do give thanks to the Lord for that and to the incredible doctors, nurses and everyone else involved in her current status. I know that the Lord had a plan with her and that He was Sadie's strength when she needed it- that he shielded her from danger! I know that every single person who took care of her at Wolfson's was part of God's plan for Sadie too and I am so thankful for them all! I also know that not only was he Sadie's strength and shield but He was that for me and so many other people too. The Lord has given me an incredible sense of peace and strength throughout this entire situation. That is not to say that I have not had moments of weakness, but to say that He has given me the strength to make it through those moments of weakness! My heart is leaping for joy-- my God is good!!!!

Praises for the Day:
1. We are home!!!!!
2. Sadie has been doing an amazing job eating.
3. Sadie is up to 5 pounds, 10.5 ounces

Prayer Requests for the Day:
1. Supernatural rest for Zach and I as we are already exhausted.
2. Pray for Sadie's left ventricle and aorta to grow so that she can have a full functioning heart.
3. Wisdom for Zach and I as we take care of Sadie.
4. Pray for peace and comfort for Kinsley as she adjusts to being a big sister.

April 9th- Almost one month old

The last few days have been a roller coaster ride..

We started out at the gates, excited for what lay in store Monday morning. We had a great weekend and were ready to up her feeds. All of our doctors agreed that things looked great, so they upped her feeds and after some convincing, Dr. Shillingford even said she could remove her NG tube! Sadie was obviously listening and promptly removed it herself. She is just so helpful! Monday continued to be a string of ups, as she ate great every time I fed her. Our biggest up was that we were going to be able to go home in the next day or two and hopefully it would be without her NG tube.

Getting ready for her nuclear medicine study

Tuesday is when things started going down.... I arrived at the hospital and drove around for 30 minutes looking for parking. I knew I was going to miss rounds because of this and was so frustrated. Luckily, I ran into Dr. Shillingford in the stairwell and he gave me a short update. I already knew that she had not eaten that well throughout the night, so he said we would need her to improve or the tube was going back in. During the day, she ate great for me. So, we planned for me to stay the night to see if she just liked eating from me. Well, that night I got my first taste of Sadie not wanting to eat. She was so tired and frustrated that she only ate half of what she normally eats. 

Visiting with Krissie!

Today, we had our ups, our downs and some flips. We started with being told she would definitely have her NG tube in and that we would not be going home until Monday. I of course was okay with this because if they are not comfortable sending her home, there is no way I am comfortable with it. Well, later they re-evaluated and determined we would try ad lib feeding (feeding her any time she was hungry) to see if that would work better. I thought she was doing great, but apparently the doctor's disagreed because we had to put the tube back in. And, when I say "we" I mean "me." I put the tube in! It was actually not as horrible as I imagined but it still something I would rather not have to do. Today, I also got to go with her for a nuclear medicine study of her kidneys. This will tell us how bad her hydronephrosis actually is (We are still awaiting results at this point.) After that, Krissie came up to visit! And I got to spend time with my usual visitors too, Fred and Brittany! Tonight, Zach gave Sadie her Lovenox shot for the first time and did great. It looks like we are both growing up very quickly!

Verse of the Day:

"When times are good, be happy; but when times are bad, consider this: God has made the one as well as the other. Therefore, no one can discover anything about their future." Ecclesiastes 7:14

On this roller coaster ride of life we are currently on, it is crazy how many "good" times and "bad" times we have. One minute, Sadie is thriving and amazing the doctors and everyone around her- she is a living example of a miracle! The next, we are facing a new setback.. a lost line, a new discovery, the regrowth of her hygroma, an infection.. the list could go on. But, just because times seem "bad" does not mean that I should give up, pout or doubt God. Rather, I must realize He is in control. I do not get to see the whole story yet. One day, I will look back and see it.. But, I can tell you this. This journey we have been on has been the hardest journey of my life, but it has brought so much good already. We have seen God's grace in new and unfathomable ways. We have grown closer to God and learned to truly depend on Him. We have realized just how lucky we are for each minute we have with each other and our families. We have been able to share in others burdens. We have seen God's love poured out through countless individuals. We have been given the amazing gift of Sadie Grace!!!! The list could go on and on.. and that is what we must keep looking at. That is what we must constantly see and remember!

Her leg all nice and wrapped up \while they are working on her PICC line

Praises:

1. Sadie's vital signs have continued to remain stable

2. Sadie has been transferred from the cardiovascular surgical team to the cardiologists (meaning she is completely recovered from her surgery)

3. We are going home sometime soon!!!

Prayer Requests:

1. Pray for Sadie to continue to eat and to gain weight. She has lost some and is down to 5 pounds, 3 ounces.

2. Pray for the results of her nuclear medicine study.

3. Pray for wisdom for the doctors as they continue to make plans.

4. Pray for Sadie's hygroma to resolve.

5. Pray for the occlusion in her PICC line to clear or that they take it out!

Zach feeding Sadie

This puts in to perspective just how little our Peanut is!

Kinsley at lunch.. enjoying pickles and oranges.. She did not enjoy the orange zest though

Cuddling with her friends!

Cuddling with Brittany!

Kinsley helping walk Brittany's "baby" at the heart walk

Look at those eyes!

April 3rd, 4th and 5th: 24, 25 and 26 days old

Welcome back! We have had some great progress in the last couple of days! I will cover each of our major concerns (cystic hygroma, kidneys, heart and feeding) in detail.

Cystic hygroma- Praise the Lord, her hygroma has not grown in the last couple of days.. and as of today we think it may be shrinking. They have decided that they want to do an MRI when she is 3 months old to make sure it is not connected to her brain, but they are waiting to do that due to the stent in her heart. We have to wait because we do not want the heavy magnets to possibly cause the stent to migrate. The makers say that it will not, but we just want to be on the safe side.

Kidneys- We finally had our VCUG yesterday, and I got to watch them perform it. It was not fun to have to hold her head still during the exam but it was very cool to watch the process. We are pretty confident that there was not much reflux during the exam but we are still waiting on official results. We do still have to do one more procedure to check the kidneys and it will be done later this week at some point.

Heart- From a heart standpoint, she is doing great! All of her oxygen levels and vital signs look great which means that her heart is doing what is supposed to at this point. Her stent does seem to be applying some pressure to her right pulmonary artery, but we do not think that is a big deal at this point.

Feeding- Over the last few days, we have progressed a great deal in the area of feeding. First, they moved her to a bolus feeding schedule. This means that instead of having a continuous flow of food to her stomach, they have a larger amount flow over a shorter period and then stop it for an hour. They do this to help her get used to the feelings of being full and hungry. This also allows her stomach to get used to stretching. Our goal for her is to be able to consume 40 ml ( a little over 3 ounces) in a three hour period. We started with 10 ml by mouth and 36 ml over a 2 hour period. She did well with this, so now we are feeding her as much as she will eat in a 15 minute period, and then putting the rest of the 40 ml into the tube for the next hour and 45 minutes. Then she gets an hour break and we start all over. She has been doing pretty good with this, although she is still somewhat disorganized so we still need some help from speech.

Sadie also had visitors this weekend. Papa, Grandma, Aunt Donna and Tanner came to visit! It was so fun to have them all up and they even went to the heart walk with us today. It is very eye opening to see so many families who are affected by congenital heart disease. We were honored to be able to meet other families who have been where we are and are still in the fight!

Verse of the Day:
"Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?" Matthew 6:26

I like to plan. I like to be in control. I like to have everything in order. These last few months, these things have not been possible. I have to let others plan, and be in control and I have definitely not had everything "in order." I have realized that I have to "let go and let God" yet I still forget that so often. After everything He has done for us in these past few months I still find myself trying to take the reigns back and I start worrying again. I start to think "what if." Then I stumble upon a verse like Matthew 6:26 and I am reminded of how God designed us and why He designed us. He loves us- we are His most valuable possession. He designed the birds with the skills they needed and provides for them, of course He will do the same for me. So instead of worrying and trusting in myself, I must trust in Him. I must depend on Him alone. Thanks Lord for the beautiful reminder you give us through your nature!

Praises for the Day:
1. Sadie's lungs continue to appear clear!
2. Sadie's hygroma has not grown.
3. Sadie's kidneys seem to be much better than expected.
4. My Aunt Linda's cancer has not grown and has slightly decreased.

Prayer Requests for the Day:
1. Pray that she continues to progress with her feeding and that we can go home without an NG tube.
2. Pray that her hygroma is not connected to her brain!
3. Pray that the extra blood flow through her arch and left ventricle allow them both to grow!

April 1st- 22 days old and April 2nd - 23 days old

 I would like to start by recognizing a young boy close to my heart, Quinnie Hancock. Today is World Autism Day and it is just one of the days we get to celebrate how wonderful he is! Since I was young, Quinn has always been making us laugh and smile. It has been such an inspiration to see Summer taking care of him and to see the love he brings everyone around him. Pray for all families that are special enough to have an autistic child today!


So obviously I missed a night, because I was sleeping at the hospital. We do have a lot of updates though, so I will quickly fill you in on both days.

April 1st:

I met with a lot of doctor's on this day. And found out a lot of new information, that we will have to deal with in the future.

First, I met with the hematologist to discuss our family history of blood clots and to discuss Sadie's blood clot. She informed me that they would have her on Lovenox shots twice a day for at least six weeks and probably more like three months. This means that once we get released, we will be responsible for giving her the shots. That is a hard pill to swallow, as you never want to see your child get a shot.. let alone give them one. However, we will just have to put our big kid pants on and do what is best for her.

Second, I met with the nephrologist to discuss her double collecting system and hydronephrosis. He said that we would do a VCUG (a test where they inject a contrast agent through her bladder to determine if the urine is refluxing back into the kidney) to determine how severe her hydronephrosis was and to see if their was a cyst at the top of her ureter. If there is a cyst, it would require a "procedure" to remove it. Depending on the severity of the hydronephrosis, we may possibly need surgery. However, he explained that sometimes the body heals itself (or God steps in and provides healing) and it can correct over time. Either way, he wanted to do the test tomorrow (which is today) and go from there.

Third, I met with the Ear, Nose, Throat Doctor to discuss the growth of her cystic hygroma. Throughout my entire pregnancy, we knew that Sadie had a cystic hygroma (a collection of fluid on the back of her neck.) However, when she was born we thought it had resolved as she had no fluid, just excess skin on the back of her neck. A few days after she was born, they did an MRI of her brain and did see a small pocket of fluid they believed could be left over from the hygroma. Fast forward to a few days after her surgery, the excess skin was no longer empty it was filling with water. So, when I spoke with the doctor, she explained that a lot of times people think they resolve completely and they do not. She said that a lot of times infections can cause them to start growing again. Well, she did have e-coli so we thought that was the problem. She said that the location of the hygroma is a good one though as it should not cause any problems. So, assuming it does not continue to grow or get infected, we will just deal with it at a later point.

As you can see, we still have a long road ahead of us. But, we are trusting completely in God's plan for her life and our lives. We can not wait to see what He has in store for both of our precious girls!

On a positive note, Kinsley and Sadie got to meet for the first time. When Kinsley first walked in the room I was holding Sadie on top of a pillow and Kinsley just kept pulling on the pillow trying to get to me. Later, we let her see Sadie and the crib and she seemed to be more interested in the toys in the crib. It was still cute though and we tried to get a family pic and failed.. Hopefully we will be able to get better ones when we are discharged.


Now, lets move on to today..

April 2nd:

I arrived just in time for rounds, and they started with us so that she could be taken for her VCUG. The first thing we spoke about was her chest X-ray, up until this point they had been coming back clean. Well, today her right side looked a little hazy. One of the doctor's was concerned and another was not- so we would talk about that later in the day. Then we talked about feeding and I got some more crazy news. They told me, that when we went home she would more than likely still be on the NG tube and we would need to learn to insert and remove it. The NG tube is inserted through her nose and takes the food directly to her stomach. This will require some more big kids pants for us for sure. Everything else seemed to be on track, so these were our major thoughts for the day.

Soon after, they rolled Sadie down for her VCUG.  About 30 minutes later they came back saying they could not do the procedure because she still had dye from her barium study, so they would have to do it another day.

As the day went on, I spent a lot of time with Sadie and got to feed her multiple times. She did great each time! She was never short of breath or frustrated and the last time I fed her, she stayed awake until the end and then after. These are great improvements as we can see that her endurance is building.

Before I left, I spoke with my nurse and asked her to have Dr. Sullivan check her hygroma as I thought it was growing. She said she would and I headed out. I had to leave earlier than normal today to take Kinsley to the doctor. Doctor Mary did her 15 month check up and said she was as perfect as could be! She did not like her shots, but got over that quickly when I let her play with the wind chimes in the room.

After taking Kinsley to the doctor, we went home played, ate dinner and then Zach and I left her with my mom and went back to the hopsital. When we arrived at the hospital, I got ready to feed Sadie and we received a call from Dr. Sullivan. He wanted to let us know he was concerned about the hygroma and the lungs and had spoken with the geneticist and the ENT doctor concerning the issues. He thought the fluid on the right lung and the growth of the hygroma could be from a number of things, including the hygroma, a leaky valve (due to Turners) or possibly the fat content in my breast milk. So, he said they were planning to up her dosage of lasix (a medicine that helps her get rid of excess fluid) and continue to watch everything closely. So, we are waiting now to see how this will proceed.

Verses of the Day:
"Some trust in chariots and some in horses, but we trust in the name of the LORD our God." -Psalm 20:7

The last two days have been days where I have started to doubt and have had to call on the Lord's name multiple times. It can be so discouraging when you just feel like you keep getting bad news. However, I have to remember to look back to the good things He has done. For instance, if you study Turner's syndrome you would find that 99% of conceptions end before the baby is born. That means our sweet Sadie is in the 1% who make it! What a miracle. I can also think back to a time when I thought we had heart, spine, brain and kidney problems because of different "findings." Yet, we do not have all of that. So I will choose not to trust in "chariots" or "horses." Rather, I will trust in my God! I will trust that this does not surprise Him and will not surprise Him! I know that fear will continue to creep in, because I am only human- but knowing this verse and having it hidden in my heart, I can use it to throw in the devil's face!

Praises for the Day:
1. Kinsley's 15 month check up was perfect!
2. Sadie's feedings are going great!
3. Sadie's vital signs all look great.

Prayer Requests for the Day:
1. For the "hazy" look of her right lung. Pray that it will clear up, or the doctor's will be able to find the source.
2. For her cystic hygroma. Pray that it does not get infected and that we can figure out why it is growing.
3. For her kidney's- pray that they do not become infected and that we make wise decisions moving forward.