So many blessings amidst this crazy life…

What I can truly say from the last few days is how many blessings I have seen…Andrew would agree with me that we are just so blessed despite the craziness of life…despite not knowing what the future holds…we are blessed! We have met so many amazing people the last few weeks…people that have been a real inspiration to us…people who have children who are going through such hard sad stuff right now…and they too hold onto their faith and that alone is getting them through these horrible times.

CHOP had a snowflake shop where the parents of patients got to “shop” for Christmas gifts that were donated from all over…it was such an amazing thing and it was very humbling to be on the receiving end of it. The encouragement and kindness shown by these volunteers was so nice.  It was a very special moment and I really enjoyed it….kinda helped me get into the spirit of Christmas a little more….feeling the love from these volunteers and the staff at CHOP….and of course meeting other parents going through similar situations.

We got to spend the day together as a family of 4 in Noah’s NICU room.  It was actually a lot of fun and not as stressful as I thought it would be.  Ethan did a great job and he was an awesome big brother to Noah.  It helped to have Noah in the swing and out of bed so Ethan could actually see him and kinda interact with him.  Ethan would put the binky in Noah’s mouth when he would start crying and then give me a high five.  It was so cute. Ethan also loves playing with Noah’s hair.  Noah was very bright eyed and seemed to enjoy watching his older brother.  It was a very special time with them and I would say a very nice Christmas gift to us…just being able to spend time together…being able to take Noah out of his bed and have the two of them interact…made my heart very happy! Ethan is an expert hand washer..there are tons of antibacterial soaps all over the hospital and every time we pass one, Ethan points to it and I let him take some and he rubs it all over his hands…we may be creating a very OCD child…but that is a good thing when it comes to what is best for Noah! 🙂

Noah is doing very well…he no longer needs oxygen when he is awake. CHOP recently did a sleep study on Noah to see what his airways does when he is sleeping…the test results came back that he does sometimes have drops in his heart rate and oxygen level when he is in a very deep sleep…they said it is because all his muscles are so relaxed and that lymphangioma “falls” or pushes his tongue which closes his airways for a split second…so he will need to have oxygen when he is sleeping…doctors said maybe for 2 months and then he should be fine without it.  They said he may not even need it at all but its best to be on the safe side…which we agree with! It was so nice to go today to see him and actually see his cute little nose without anything in it.  Noah is also back on the medicine…they had to stop the medicine for a few days until he was back in normal range.  He had his first dose again today…they will take blood on Friday to check the level again and see if he has too much or too little.  They tried to explain to us how they measure the medicine and this is what I got from it: They take his blood and then measure the actually medicine in his blood.  The number they like to see has to be between 4 and 12.  Noah’s first test came back that he was at 26 which is too high…they waited two days and then took his blood again…the level was at 18…still too high…they took his blood yesterday and it was in range.  Hope that all makes sense.  It took me a little while to understand how they do these measurements.  Please pray that this is right dose for Noah and that it won’t come back that it is too high…we want it to be in range so that the medicine can start working and work effectively. Please pray that Noah handles the medicine well and that he won’t have any side effects.  Please pray for the doctors and nurses that watch over Noah everyday 24/7.  Noah is a strong little guy!

We want to wish everyone a very Merry Christmas! Thank you for all the love, support, encouragement and prayers!  We truly feel God working and we feel His peace as we go through this very crazy time! We are very blessed with our two boys! GOD IS SO GOOD!

 

 

 

 

Two posts in one day!

I don’t usually post two blog posts in one day but I just wanted to ask for prayer for Noah.  He is doing fine but they checked his blood (which they told us they were going to do after a week) to see if the dose of medicine he is getting is too high or too low.  I am not 100% sure what they look for in the blood to know if its too high or too low…(Thankfully I am not the doctor/ when I am at the hospital tomorrow, I will ask how they measure it.) but Noah’s blood level came back too high which means he is getting too much of the medicine.  The doctor had told us that they would be checking his blood levels for the next few weeks or months until they have the perfect dose for what they need this medicine to do in his body.  They stopped him on the medicine until they meet with the expert doctor and come up with another dose. They were saying he would maybe start the medicine again on Monday.  The doctor had told us that they would probably have to adjust the dose a few times before they get it just right….and that is why they check his blood levels weekly.

It is frustrating and of course I wish they could just get the perfect dose but that is not the case…usually never the case…so again I need to remind myself to be patient and wait on the Lord to help the doctors come up with the perfect dose for Noah.  I have to remember that this is going to be a long process and we will hit bumps along the way…but we will get through it only because of the Lord.  (again not so easy to say but I need to constantly remind myself)

It also helps me to write down the blessings from the day and remind myself that God is faithful and is with me…today I am thankful that they discovered that his blood levels were too high and it has only been a week so they can fix it and get him down to a lower level. Andrew reminded me that it would have been so much worse if they didn’t do the weekly checks and they found this out after a month. I am also thankful that I was able to hold and love on Noah today.  So even during hard times, there is still blessings. (AGAIN NOT easy to say but I need to remind myself)

Please pray for Noah. Pray that the doctors will have wisdom to figure out the best dose for him.  Pray that the medicine works well and that it does what it is suppose to do.  Please pray that Noah won’t have any side effects from the medicine.  Pray for myself that I won’t go to a dark negative place and feel like I want to give up…pray that I will have strength to persevere for Noah and my family.

 

 

 

Trying to figure out life…

I haven’t had a chance to write any updates on Noah…it has been a busy few weeks…mostly trying to figure out where to live…what our next steps will be…do we move? do we sell our house or rent it out? where to rent an apartment? how long will Noah be in the hospital? where is Andrew going to work? These are the questions that are going through our heads as we plan out what is best for our family.  The most important this is to be together as a family!  (We all agree on that)

God is slowly opening and closing doors and as much as I wish he could give us a clear sign…we will wait patiently on Him as he guides us.  (TRUST ME THIS IS NOT EASY….in fact it is super frustrating) But I know he will make all things clear to us!  Please continue to pray for us as we figure out where we are going to live and what we need to do with our house in Virginia…also pray for Andrew as he is trying his best to provide for our family with a job and pray for wisdom that he will be able to figure out where he needs to work…whether it be in Roanoke or in the Philly area. Pray that we have patience during this frustrating time of figuring out our lives!

I was reading a devotion last night and this spoke directly to my impatient heart: Lamentations 3:19-26 “The LORD is good to those whose hope is in him…it is good to wait quietly for the salvation of the LORD.”

“We get impatient when things do not move as quickly as we think they should.  We push. We grumble. We complain. We question WHY? We ask God why this is happening to us.  We try to make something happen on our own.  The author of Lamentations was living through the worst experiences anyone could imagine.  Jerusalem had fallen.  Its people had been carried off into exile.  Its rivals were mocking and rejoicing.  Worst of all, God seemed to have abandoned them.  Yet in the midst of his mourning the writer says, “It is good to wait quietly for the salvation of the Lord.” To wait quietly is the opposite of trying to make things happen.  Instead of grumbling, complaining, or shouting, waiting means trusting in God.  To wait quietly is to trust that even when things are as bad as they could be, God is faithful and his mercies are new every morning.  GREAT IS HIS FAITHFULNESS!

GOOD REMINDER!

We are currently staying with Andrew’s aunt and uncle and will have Ethan back with us after Christmas.  We are in the process of renting a duplex which will be available for us to move into mid January.  Again we are reminded how amazing God is with how much our family and friends are helping us out. We really can’t thank you enough!

Noah is doing well…he just finished his first week of being on the medicine.  He seems to be handling it well…they give him Zantac along with his medicine to help with acid reflex but he hasn’t needed any nausea medicine which is such a blessing.  We continue to pray that the medicine is working and that Noah doesn’t get any of the side effects.  It has been so much fun just enjoying our baby.  Noah is so alert now and loves to be held. He enjoys listening to music and watching the people go by.  He really likes to study people faces and figure out who you are.  He loves to eat…he usually starts to fuss 15 minutes before each of his feedings letting everyone know he is hungry and wants food! I am able to give him all breast milk which is also a blessing…so far I have enough milk and pray that I continue to produce enough for him.  We also do paci dips… when he is receiving a feed in his g-tube, we let him suck on a pacifier and dip the end of the pacifier in my breast milk and he loves it.  This way he gets the taste of it and it is an awesome immune protector for his mouth to keep away germs.  SO cool how God has designed everything so perfectly.  GOD IS GOOD!

THANK YOU ALL FOR THE PRAYERS! Please continue to pray for our sweet baby boy and also for the future as we figure out what we need to do!

 

 

 

 

Woohoo! Noah is one month old (day late)

  
Noah is one month old!! Woohoooo God is good! It went so fast and yet I feel like it’s been forever…if that makes sense.  Noah is doing well…they upped his feeds and he usually wakes up right before the 3 hours and makes it known he is hungry!! He kinda sounds like a bear when he is hungry…gaining lots of weight too which is awesome! We are just so thankful for these little blessings.  

We met with the dr today and it went very well!  Noah will start “chemo” meds (dr said its chemo but it’s not chemo bc we are using it for a different reason) tomorrow.  I was worried about the side effects but nothing was surprising or alarming to me. Noah may not even need to be on them his whole life.  The doctors and nurses will monitor him very closely to make sure he doesn’t have too much meds or too little.  They are also starting him on an antibiotic to help boost his immune system. I was reminded again today that we are in the best place for Noah and his doctors and nurses care about him so much and are giving him the best care!  So thankful to God for bringing us here!! He knew exactly what our sweet little boy would need!

Pray for Noah as he starts the meds…pray all goes well and that the healing will happen faster then slower…pray that he stays healthy. Pray that we also stay healthy! 

Pray for us as we look to rent an apartment in the philly area so that we can be all together as a family and close to Noah.  

   
   

Enjoying our sweet boys!

   

We got a brothers picture which I wanted so badly…never thought it would be such a long process to get it…but we did 😀

  

 
Noah is doing well…praise the Lord!   After a few crazy weeks we enjoyed a very nice week with both Noah and Ethan.  Being with Ethan reminded me that I am still a mom and I have a life outside of the hospital.  It has also been a great week of snuggling and loving on my sweet baby Noah after weeks of not being able to really hold him.  

I am trying so hard to just enjoy these moments right now and be thankful but sometimes I am scared that the good will go to bad and I’ll be pulled down into that dark place I entered a few weeks ago.  This fear is from the devil and every time I fear these thoughts I need to remind myself of God’s promises to us!  He might let us bend but he won’t let us break!  So for now I will enjoy these good moments!

   
Noah is one month old today!!! What a celebration!!! What an adventure it has been!!! Thanking God for this milestone…God is so good!!! Happy one month buddy!!!

 We are meeting tomorrow with the Drs to figure out what medicine to give Noah.  Please pray for us as we may hear some stinky side effects for these medicines…pray for Strenth and wisdom…pray for the Drs as they make these decisions for Noah…pray especially for Noah as he starts the medicine either this weekend or the beginning of next week.  

   
   
Noah is so much more alert now!  He loves to be held and cuddled…when you hold him he likes to just look up and stare at you…he likes to suck on a pacifier especially when he is having a feeding in his g tube…which is great for him to associate the feeding with sucking.  He enjoys swinging in his new swing and loves listening to music on his mobile. 

   
 

Praise God!

We made it through our first surgery day…we learned a few things from it…first of all hospital time is very different from normal time.  Noah was scheduled for his procedures at 1:15pm….he didn’t go into the operating room till 5:30pm.    We also got to feel first hand how hard it is to bring your baby to the operating room and leave him at the doors and give a kiss goodbye. I didn’t want to bring him up….I wanted Andrew to do it by himself but I knew I needed to do this because with Noah we may be facing more surgeries or procedures in his future (Lord willing not) but I needed to overcome this initial fear…the fear will never go away or get easier but doing it once will help me be able to be the mom Noah needs me to be.

The day itself was okay…we enjoyed time with Noah and because it took so long for them to get him into the operating room we were ready for it to happen and wanted it to just be done.  We waiting in the surgery room waiting room…it was actually a very nice area with really comfy chairs.  The nurse told us she would come in and give us updates.  We waited…so many thoughts went through my mind…would he need a trache? Would they find more things? Would everything go okay with his surgeries? What would he look like afterwards?  I tried to focus on my coloring book which is suppose to help relieve stress…haha I guess not this kind of stress…I tried to focus on the tv…thankfully after about an hour the nurse gave us an update saying that it was going well and they just finished looking down his airways…she said the doctor didn’t think he needed the trache…and that the doctor would be coming out to talk to us very soon.  I got kinda nervous that he didn’t need the trache…were we taking a chance that if he doesn’t need it now he will need it in a month…the doctor came in soon afterwards…he looked very happy and pleased…I breaded A sign of relief.  The doctor said Noah’s airways looked great…they were clear and the lymphangioma was not blocking his airways at all.  There was no need for a trache for now.   He even said we should be able to treat that lymphangioma before it gets worse.  Praise the Lord!!!!! Praise the Lord!!! These were such good words to hear. We saw a glimpse of hope and it was amazing! God has answered our prayer to a clear answer about the trache!!!

The rest of his surgery went well…he got the g tube which went in very well.  We had made it through surgery day…but only with God’s help!

The doctors took the breathing tube out yesterday and he is doing well.  We can finally see our baby without all this tape!  He had his first feeding today which he handled very well.

The doctors are hoping to start a  medicine next week to shrink and stop the growth of the lymphangioma.  Please pray that the medicine will work for Noah.  😀 thank you all for the prayers! God is so good!!!!

  
  

Pray for Noah!

You unravel me, with a melody
You surround me with a song
Of deliverance, from my enemies
Till all my fears are gone

I’m no longer a slave to fear
I am a child of God

You split the sea
So I could walk right through it
All my fears were drowned in perfect love
You rescued me
So I could stand and sing
I am child of God…

Andrew and I were having a rough weekend….we finally came face to face with our fear…hearing what Noah has and what is happening and what we are going to do…it hit us so hard…smack in the face! We didn’t know how to handle all our emotions and fears.  I would say this is the first time that I felt a fear that took me to a very negative place…and I felt like I couldn’t get out of it.  This song “No longer Slaves” came on the radio as we were driving on Sunday about 4 times…I got goosebumps because I felt like God was speaking directly to me telling me that I am not a slave to fear. I am a child of God and he will take this fear and drown it! It brought me so much comfort! I can do this…yes we are going to have some rough days ahead of us but I can do this…we can do this! Our little family can do this! Andrew started naming things that God has blessed us with: Noah is here! He was born safely. We caught the blood clot in my umbilical cord before it traveled to Noah…my friend Janina was able to come for 2 1/2 weeks to help us.  Ethan is in good hands with my parents…we caught what was going on with Noah before we went sent home to Roanoke where we wouldn’t have the help we need.  There is medicine that can help shrink the lymphangiomas…God is putting people into our lives to support us and help us get through this time…we are being taken care of by so many generous people that have been helping us along the way…the list goes on and on…(let me just say this was not an easy list to name off when I feel angry and sad with what is going on with Noah) but it is such a good reminder of how God has seen us through thus far.

After this bad weekend things have been a little better.  The doctors and nurses are working together to come up with the best plan for Noah.  Noah has teams and teams of doctors from all over the world helping him fight these lymphangiomas!  Before we figured out what was going on the nurses and doctors were hard to get in touch with…now they come and find us and keep us updated everyday to their plan for Noah.  I have been able to have snuggle sessions with Noah everyday. We have been doing skin to skin (kangaroo-that is what the NICU calls skin to skin) and enjoying snuggles.  At first I was afraid to hold Noah…I felt like he wasn’t the same baby…I was afraid to hurt him…the nurses convinced me that it would be a really good bonding time and they were absolutely 100% correct. Holding Noah reminds me that he is still my baby…the baby I carried for 8 months…the baby who kicked me from the inside all the time! My baby who loves to suck on his breathing tube and thinks it is a pacifier.  My very special sweet baby!

Tomorrow Noah has a big day…he is going to the Operation room to get a  G tube. The G tube will be his new feeding tube.  Then the Ear,nose and throat doctor will look down his airways and see if he needs a tracheotomy.  This is the big deal…because they don’t know what is going on with his airways it is very critical.  If they see that his airways are blocked or getting blocked by the lymphangioma in his throat, he will get the trache…which is pretty serious surgery.  If his airways look clear then we may hold off on the trache and wait till he really needs it.  I just pray that God gives us a clear answer tomorrow so we will know what to do for him.  Please pray for us…we need strength…we need patience and we need faith to trust that God will show us the way.  Pray that Noah will do well and handle the anesthesia well.  Pray that we won’t be slaves to fear!  Noah’s procedures are happening around 1 pm tomorrow!

PRAY FOR NOAH! Psalm 91!!!

Great is thy faithfulness!