Joshua's Journey: Home Again

We've settled back in at home after being at the hospital for 5 days. They did a couple of tests on him to try and pinpoint when his aspirations are happening. One test checks to see if could be due to reflux and then we did a repeat swallow study to see if it could be from feeding. The results came back that his reflux was normal and as long as he swallows thickened liquids, he should not aspirate. I find myself getting a bit anxious every time I feed the poor kid. I don't want to feed him wrong to where he may choke or spit up. Last night he threw up the majority of his food and all I could do was pray that he didn't aspirate. There is no quick fix for this. His lungs just has to continue to develop and grow and his little body has to be strong enough to push out all the unwanted liquids when he starts to aspirate. The two things that are truly keeping me sane as we are just waiting for him to grow and mature is that our God is the great Physican. To matter what doctors say or do, God trumps everyone and he has the perfect prescription for Joshua Derek! The second is that y'all are all praying as well. This journey is much more comforting doing it with ya'll. Thank you! God has give us a lot of opportunities to just trust Him and let Him be in control. Because really what is going on with him right now is out of my control and even out of the doctors control. So, it's all Him!

Specifics to pray for:

That Joshua's lungs will continue to develop and mature.

The flap that keeps food from going down the wrong pipe will remain closed as food tries to go down there.

His antibiotics will get rid of all the bacteria on his lungs.

For no anxiuosness and peace as we feed him.

Trusting God's provision financially when we start getting the bills. We do have any opportunity to get some bills paid for because he was so small, we think, but the process is long and hard, so pray for favor in that as we have speak to people.

That he and his sister will come to know The Lord at a young age and will have a heart for Him all the days of their lives!

For the NICU ministry. That God will continue to open doors to minister to families. He will show us the direction he wants us to take with it!

Thank you, thank you, thank you! Praying God's blessing on each of you. Thank you for your countless prayers and for being a light for us during this time.

Joshua's Journey: Stopping the aspirations

Today was a great day. Joshua started a test at 9 this morning to see if him refluxing could be causing his aspirations or if it's him swallowing. They put a tube through his nose and it tests the acidity in his esophagus above his stomach. That way they can tell some stuff about his reflux. Tomorrow, they will repeat the swallow study he did two weeks ago. I'm praying that it will come back where they see no aspiration and he can go back to having breast milk. I would love for y'all to join me in that.
Today was the first day since being at Texas Children's that Derek had to work a full day. Josh and I had some visitors. Much fun!! Two of them will be going off to college next year and I can't tell you the joy I had talking to them! It's easy to find the negative in things, especially when you are stuck in the hospital and want nothing more than to go home, but God brought those girls to help remind me we have much to be thankful for. I'm so thankful that they are leaving our high school ministry with a genuine love for The Lord. I know that when they to have trials, they will be able to lean on Him!

Specifics to pray for:

Wisdom for doctors and staff

They will get the results back from the reflux test and all will be good.

He will not have any aspiration when doing the swallow test. So we can go back to breast milk!

Peace, patience and rest while in the hospital.

Healing from having more aspirations so that we don't frequent the ER.

That God will provide financially for the different bills we will have. We know He have it all under control.

Thanks for the prayers!!!

Joshua's Journey: At it again

There is just something about Friday's. Early Friday morning Joshua started acting like he didn't want to take his bottle and felt rather warm to me. Two things that begin to be a sign that something is going on in his little body. I called the doctor and they take huge precautions with him because of recent history and he's a preemie.  He was given a shot in case he had a bacterial infection and we went back to hang out at Mimi and Papa's for a bit. I noticed after he had been asleep for a while that he began to grunt with every breath. The doctor advised us to take him to the ER because that's a sign of distressed breathing. We packed Josh up and were about to get Maddy all ready to go when his breathing seemed to slow to me. The last thing I wanted was for him to stop breathing on the way to the hospital. So we took the safe route and called our ambulance friends again. He was slowly getting paler and paler as the EMS was checking him out. His heartbeat was at about 225 which I don't know how the little thing can beat that fast. (His normal is about 170, so it's not like ours being that fast)
We went to St Luke's and after assessing him, they said they believe his issue was with aspirating again and they were going to send us down to Texas children's.  So, here we are. They have pretty much ruled everything out as far as virus or other infection is concerned and are treating him for aspirated pneumonia. He was not able to eat until 1 pm yesterday. It was so sad. We just kept giving him his pacifier over and over and over again.  He was one happy camper once he could finally eat. We are still having to thicken it, but they are having us add rice cereal. We pretty much are hanging out here until tomorrow. They are going to do a swallow test and then a reflux test tomorrow to see if his aspirations are from swallowing or reflux. Though we hate being in the hospital and away from Maddy, the nurses here are really good. They are constantly checking on the little guy and try to help any way they can.

Specifics to pray for:

That they will be able to determine what is causing his aspirations and can help us determine what to do to stop it. We are ready to be able to enjoy our time at home as a family:)

For us not to get weary. There are many things still to be thankful for and we need to not lose focus of that. God's got everything under control.

Wisdom and blessing for the staff while dealing with Joshua and the other kids.

God's guidance and provision for the finances.

Thanks for continuing this journey with us! Your prayers are the most important gift your could ever give us. Thank you!!

Joshua's Journey: Back at home and hopefully to stay!

Last week was a rough week for me. I would take the 70 days in the NICU over the 6 days we had downtown any day.  The nurses and doctors were good, but it was so different to me. I was used to carry on conversations with the nurses in the NICU and I was lucky if I saw the nurses for more than a couple minutes a handful of times per shift down there. It was hard. Especially on Monday, Tuesday and Wednesday when Derek went back to work. It was just me and the little guy and he didn't talk back much. It's funny, I don't really consider myself a major talker, but I just like to know that there is someone I can talk to if I wanted to talk. I guess it gave me a glimpse of what it would be like without the support of family, friends and the church. Don't get me wrong, I'm not saying we didn't have the support. We definitely did and it was and is appreciated.  It did allow me to have some empathy for those that don't have that support though. It made me realize I need to be more aware of needs around me and jump at every opportunity God gives me to help someone out.

Joshua is doing good. He's gaining weight pretty fast, partly due to the fact he is taking formula with a thickener in it for the majority of his feeds. They ended up doing a swallow test Tuesday afternoon, on the day we were thinking we were going home. The test revealed he aspirated trace amounts of liquid when it was just formula. That means some of the formula went to his lungs when he swallowed. I sat there and watched the test as they were doing it and the speech therapist said she saw something go in. I was staring at the screen and was convinced it was a conspiracy against me. They wanted me to stay in the hospital forever! I mean I wear contacts, but I thought my eyes were pretty good and I never saw what she saw. He got no second chance. They tested him on formula with thickener and said he did fine with that, but that ended up buying us one more day to make sure he did okay with thickened feeds.  I definitely wanted him to be monitored and to do well, but I was ready to be out of there. At first she told me she wanted to monitor him a few days and told me the thickener could cause NEC.  Not being a nurse, i had no clue what that was and asked for an explanation. Basically it is when your stomach rots out. I then knew it was a conspiracy and was completely freaked out. I asked if we could be transferred back to the woodlands. The resident that was in charge of Joshua and the occupational therapist came back to our room a bit after the study and told me it would only be one more day and the thickener that caused that is now not allowed in hospitals. That made me feel better:)

We finally got to go home on the 3rd and spent the 4th of July at home relaxing as a family again. He's been doing well since. He went to the eye doctor today to make sure his eyes are fully developed. They still weren't quite there. The doctor said that he probably switched over to survival mode while he was in the hospital and so his body focuses on that instead of growing his eyes. We will go back in foir weeks and hopefully they will be fully developed then!

Thanks for continuing to pray for us during this time. God has continued to be faithful and has taught us a lot since March 25th!

Specifics to pray for:

That he will do fine swallowing regular liquids on his swallow test either this week or next week so he can go back to breast milk!

That Joshua's eyes will be fully developed when we go back in four weeks. They have to use this horrible device to keep his eyes open and he has the most heart breaking screams when he is looking at them. I prefer not to have to do that more than one more time.

That he can remain healthy along with the rest of our family! The doctor said he can go to childcare starting next week. Pray that we will have wisdom on when the best time to send him will be. I don't want to go back to the hospital!

I start back to work next Monday. That I will balance work and home well and will be the best wife and mom I can be!

For continued direction with the nicu ministry. That God will lead is and we will follow.

Thanks!!!!

Joshua's Journey: the view of the city is great

As I sit in Joshua's room with just he and I, the quietness began to get to me. I like noise and going. Two things that are both on halt at the moment. Out our window we can see the entire downtown, and I begin to think, how do we win this city for Christ?!? That's lots of people. Then God showed me a way. It wasn't through going to church, though that is great and much needed. It was through LOVE. Loving people where they are, in whatever situation that may be. God placed a woman on my heart yesterday that I overheard talking in the elevator. I then saw her again 20 minutes later and once again this morning. I asked her a bit about her story and learned that she has a 6 year old son, named Joelann, that is 31 lbs.  I really feel that if for nothing else, Joshua was sick enough to come down here so that I could come in contact with her. Please pray for her, pray for me that God will use me to show her the hope she has. God is giving me opportunities with my NICU/PICU and whoever else He wants, ministry. I pray for y'all. Find that one person that God lays on your heart and be the hands and feet of Jesus to them! I am praying for boldness and for the Holy Spirit to be our guide. I think God has great things in store.

Joshua is doing great. He will do a swallow study to make sure he isn't aspirating while he eats and then if all is well with that, we are out the door. Thank you for your prayers. Each of you are truly a blessing to me. Those near and far, ones I know and don't. Thank you!!!

Joshua's Journey: out of the PICU

We have a lot to be thankful for today!! After much crying last night, the nurse pleaded that Josh could have something to satisfy his hunger. They allowed him to have pedialyte and he finished each feed in record time. They allowed him to go to full feeds and he has had almost every feed without even stopping to catch up on breaths, which is not normal for him. I just fed him 3 oz and he acted like he was still hungry. I think he's trying to stock up! Full feeds are definitely something to be thankful for!  He also moved out of the PICU to the regular floor. It's like a regular adult hospital room. Something else to be thankful for. Because he's not in PICU anymore, we don't get the Ronald McDonald House, therefore we all get to spend the night together in Joshua's room:)
They are supposed to run a swallow test on him some time tomorrow. My hope is that they will do it in the morning. Everything will come back alright and then we can go home in the afternoon. They haven't really said if that is a possibility but there is really nothing else keeping us here. So, y'all are welcome to pray the same:)

Specifics to pray for:

That if there is something they are supposed to find with Joshua, let them find it so that we don't end up back here.

If he's here just because of prematurity, that his lungs have grown and strengthened enough that he won't have apnea.

He won't aspirate when eating, refluxing or throwing up!

For peace for the finances. It's nothing to God, and we just need constant peace that He's got it and we don't need to try and help him figure it out.

For blessing and wisdom for the staff working with our little man.

We can be a light for Christ in every situation.