Adjusting to life at home with two boys

Well we are on our second week at home…and it has been crazy.  Crazy fun, crazy tiring, crazy happy and just plain crazy. Trying to take one day at a time and not plan too much ahead.  I think the hardest part for me is just learning how to juggle two babies at once…to enjoy this time…to not wish this time away because as I am constantly reminded by older and wiser women: I will miss this time…I will want this time back! Hard to believe at times but I am constantly trying to remind myself.  I am also trying to embrace the crazy…that is our new motto in our home…to be thankful for our everyday crazy life! I remember being in the hospital with Noah and just missing Ethan and wanting so badly to be home again…and God is good and we are home so I remind myself daily to just be thankful…and that it is okay to feel crazy at times…its okay if the house is a mess because it shows that people live in it…and makes it a home.

Noah is doing very well…he seems to have adjusted to his new home very nicely.  He loves to watch Ethan run around and act crazy. Noah also loves tummy time and being held.  He is gaining the right amount of weight and his pediatrician is very pleased with how he is doing so far. We got Noah’s blood drawn Tuesday morning and now are waiting on results to make sure the medicine is in the proper range.  We should know by tomorrow.  Please pray that it is and we don’t have to stop the medicine and figure out a new dose.  We head back to Philly in February for lots of follow up visits.

Here are some pictures of our sweet boys 🙂 Please continue to pray for Noah’s healing…Pray that the medicine is working and that the lymphangiomas won’t get bigger. It seems that they are not growing larger which is a praise! Please continue to pray for Ethan as he learns to adjust to having a brother and being back at home.  Pray that Andrew and I will have patience as we take care of both boys.  Please pray that I won’t live in fear or worry that Noah is not doing well…Pray that I will have peace and not be fearful…and Please pray for our NICU families and their babies!!! THANK YOU!!!

Victory Discharge DAY!

We are home in Virginia! We got discharged from CHOP on Friday Jan. 15th at 2:40 pm.  It was such a special, amazing, exciting, scary, bittersweet day.  It was like a dream come true…we finally were able to take our baby home after 2 months of being in the NICU. GOD IS SO GOOD! I cried a lot as we took off his leads and wires and put him in the carseat to bring him home.  I cried as we walked down the long NICU hallway carrying our baby with us. That hallway had lots of memories of both happiness and sadness.  GOD IS SO GOOD! It was bittersweet because we had made so many friends/relationships with the NICU nurses and also the NICU parents.  I was sad to leave a few of my friends who are still in the NICU. I was also sad to say goodbye to the nurses who had become my friends…the people we cried and rejoiced with as we watched Noah grow and develop. The nurses who made me feel like a real mom and not just a visitor to my son. The nurses who made going to the NICU fun because they were good company.  The nurses who let me go home to sleep at night because I knew my son was in very good hands.  It was a very crazy emotional roller coaster but the Lord had seen us through….we still have a long road ahead of us with lots of unknowns which scare me but then I try to remember all the blessings we have right now…I remember all that God has done to get us to this point with Noah.  There was a time a few months ago when I was in a very dark place, a place of fear, anger, sadness and a feeling of wanting to give up but Andrew and I wrote a list of all the blessings God has given us and slowly I started to come out of the dark place.  That list is still a reminder to me today as I look to the future with fear and hope.  No matter what happens, God is in control and he loves Noah so much!

Our trip from Philly to Virginia went really well. Noah seemed to love the car…he stayed awake for awhile just looking around and taking it all in.  It was very cute to watch his wide eyes taking everything in for the first time. He then fell asleep and slept for most of the way home. It felt so good to be home…it felt so good! We were greeted by tons of balloons, signs, food and flowers from friends.  It was such a nice welcome home.  My parents brought Ethan separately and in the morning we were all reunited! It was so much fun to see the excitement on Ethan’s face when he saw Noah for the first time outside the hospital.  We had a busy weekend getting settled back in. It was such a help to have my parents there to help us with the boys and also help us unpack everything.  We had a ton of stuff from living  in Philly for 3 and a half months.

Noah seems to really be enjoying his new life…he loves to watch Ethan run around the house.  Ethan seems to be enjoying being a big brother. Whenever he sees Noah he runs over to him and give him a big kiss on the head.  He likes to bring Noah toys when he is crying and loves to pat Noah’s head.  It is so sweet to watch and just melts my heart.  Finally my family of 4 reunited under one roof! GOD IS SO GOOD! He got us through some tough uncertain days and never left our side.  He took care of all our needs!

Tomorrow I will be with the boys alone for the first time…Andrew needs to go back to work! I am scared but also a bit excited…I have been wanting this for the past 2 months. I know its not going to be easy and I will probably be saying the opposite by the end of the day but my goal tomorrow is to remember the blessings I have…to be thankful for the chaos and really just enjoy my boys together!

I will keep you all updated as we start this next adventure in our lives…we will be traveling too and from CHOP quite a bit the next few months having follow up visits with all the doctors Noah has been seeing at CHOP! We will also be having weekly medicine level checks at the pediatric oncologist in Virginia which thankfully is 10 mins away.  We went to the pediatrician today and got Noah and his doctor familiar with each other. Please continue to pray for our baby boy! Pray that the medicine works and that the lymphangiomas would shrink and stop growing.  They seem to not have gotten any bigger which is a blessing…but we ask for continual prayers. Pray that he continues to react well to the medicine.  Pray that we have safe trips to and from Philly.  Noah will get an MRI again of his whole body on April 1st to see if the medicine is working and shrinking the lymphangiomas…please pray that they are shrunk and that the medicine is working! Please pray for Ethan as he is adjusting to having a brother! Pray for the other babies in the NICU who are still not home.  THANK YOU all for the love and support! We can’t thank you enough!

“Great is Thy faithfulness,” O God my Father, There is no shadow of turning with Thee; Thou changest not, Thy compassions, they fail not As Thou hast been Thou forever wilt be.
	“Great is Thy faithfulness!” “Great is Thy faithfulness!” Morning by morning new mercies I see; All I have needed Thy hand hath provided— “Great is Thy faithfulness,” Lord, unto me!

Sleepover party!

  Just a quick update on Noah’s journey…we are waiting on our discharge date…praying that it’s Friday but as we have learned in the NICU that could change….so we wait….which is okay because we want to make sure we have everything figured out and scheduled before we drive home. Andrew drove to Roanoke last weekend to pick up Noah’s cpap machine and bring it to CHOP so respiratory can use it on him and make sure it works. Apparently in Roanoke there are no infants on a cpap so they have to special order our mask to fit Noah. Noah only needs the cpap at night when he sleeps because he has a little bit of sleep apnea. He hopefully will grow out of this and not need it at all but for now we are happy that he only needs it at night. 

We met with oncology last night and we are all set to have our weekly medicine level checks in Virginia so that’s a blessing.  We will have our regular appointments for Noah at CHOP.  We got some very good information from oncology about what life with Noah would look like on this medicine.  Because this medicine lowers his immune system and he can’t get vaccinated, we will have to wash hands all the time…and keep Noah away from anyone who is sick or has someone sick in their family. We are still able to go out and live life as we normally would but just with some caution.  So don’t mind us as we come home and are crazy OCD about hand washing. Even Ethan loves to wash his hands all the time. 

Tonight we are at the hospital doing our overnight test.  We need to prove to the nurses that we can take care of Noah on our own. We started at 9 pm and will be done around 9am.  We are in a sleep room with Noah who is still hooked up to the monitors so that the nurses can keep an eye on his and make sure he is okay. It is so weird to be in a quiet room with him sleeping next to us in a bassinet.  Starting to feel a little bit like normal life with a newborn. He seems to be enjoying the quiet of the room.  

   
  Please pray that we will be able to leave very soon.  We are so thankful that there is a light at the end of this tunnel and we will be home soon. God is so good!  Please pray that Noah continues to do well and stay healthy so that we won’t have any hold ups.  Thank you all for continue prayers for our sweet baby!!! We will keep you updated about our discharge date!  Again praise God that we are able to talk discharge date! 

Trying to be patient again…

This adventure has really taught us to be patient…patient and waiting on God. Waiting for his timing. We are waiting patiently again…this time for discharge! Which is super exciting…the end is near…at least for having Noah stay in the hospital.  It is so crazy how far we have come…how much we have all grown! GOD IS SO GOOD! It has been a bumpy road and I know this is only the beginning of our adventure with Noah…but all of this has taught me that God is with me…even in the darkest hours and he has and will carry me through this. There has been so many reminders of this and my faith has just grown so much!

Noah is doing great…he is very smiley these days! All the NICU nurses are in love with him because he is such a sweet dude. He has started to become very alert and active. He no longer is just content to lay in his crib and sleep.  He likes to be up and held…which we don’t mind at all.  We have lots of snuggles to catch up on. The doctors tested Noah’s medicine level on Tuesday and it came back at 10.4…which means it has gone down from 11.9…which is awesome…but they wanted to recheck it again this Friday at a different time of day just to make sure it is at the same level and not up or down.  They really want to make sure that they have the dose right before sending us home…which I am thankful for but boy oh boy is it hard to wait…when it seems like we are so close to bringing our sweet boy home! We are also figuring out the logistics of our trip back to Virginia with Noah…making sure we have all the doctor visits set up and that our home health care is ready to help us when we get there.  I am excited to be able to return back home and start to educate and further the research of this rare genetic disorder in Virginia…so that other families with similar situations may not have to up and leave their home for months!

Please pray for us as we wait for our discharge date! God has been so good to us…Pray that Noah continues to do so well…pray that his medicine level is stable and within range so that we can take him home! Pray that we get all the logistics of going home in place and that discharge will come soon but within God’s timing! 🙂 THANK YOU FOR PRAYING! KEEP the PRAYERS COMING!!!

 

Woohoo!

Noah is so alert and loves to look around…he enjoys sitting in his swing and batting at his toys like a little kitten.  He is such a sweet little guy. We got his medicine level back yesterday and it was at 11.9 which means it is in range! WOOHOO! The range it needs to be in is 4-12…so just barely made it BUT it made it.  Because it is on the higher side, the doctors want to test it again on Tuessday to make sure it does’t go up….before letting us go home.  I am so encouraged by this because it was at 12.6 a week ago and now its at 11.9….so it did go down.  Please pray that it either stays the same number or goes down so that we are able to go home!

Noah is now able to take a bottle or breastfeed 3 times a day.  He had a swallow test to make sure he can swallow correctly when eating and he did great! Our goal this weekend is to keep practicing breastfeeding and bottle feeding so that we can maybe do mouth feedings for all his meals instead of using his g tube.  It is so cool that I am able to breastfeed him again after thinking that I would never be able to do it again. GOD IS GOOD!  He loves his food and does great!

That is about the only updates I have today.  Please continue to pray that we will know next week when we are able to go home…pray that we figure out all the logistics for going home…and that Noah will continue to heal! THANK YOU!!! 🙂

 

Reflecting on this past year…

This has been a very interesting year…a year of both pain and happiness…a year of fear and excitement…a year of joy! I can honestly say that this year as really changed me…changed me for the better.  I just feel so blessed because through this year I have seen how much God has lead me through both the good and the bad…He got me through some of the hardest moments I have ever faced in my life.  He held me close when I cried and felt like He wasn’t there…He gave me joy when I got to hold Noah for the first time a day after he was born.  He was and is my rock and strong place.  I would never have made it through this year without Him. So yes this has been a very hard year but this year also comes with so many blessing and joys like meeting Noah and watching Ethan grow each day. Meeting so many new people here in Philly both at the hospital and at the church we are currently attending.  We have been able to spend more time with family and Ethan has been able to really get to know his grandparents, aunt and uncles. We have seen how powerful prayer is as you all have been praying for Noah…and we have felt so much love and support from familiar faces and also complete strangers.  GOD IS GOOD! I am excited to see what the new year brings but I am also thankful for this past year. (Despite all the trials and hardships we faced)

 

This year has also taught me to count my blessings,and to really appreciate the little things in life  like being able to hold my baby and also be able to take a family photo with all 4 of us in it (I had to be very patient with that one…crazy I know ) This year has made me stronger, it has made my relationship with Andrew stronger and most importantly my relationship with God stronger and for that I am so thankful!

We got some very exciting news this past week that Noah is close to discharge…he is doing great and is ready to go home.  We found out that we are able to go back to Virginia and that they have everything for Noah there.  What an amazing blessing from God! We don’t have to sell our house and move. Andrew can keep the job he has and we will be able to raise both of our boys in our home! We don’t know the exact date of discharge but they were saying the earliest it will be is next week.  The big thing that we are waiting on right now is his medicine levels.  When they took it a few days ago, he was just a little higher then the range he needs to be in…which is great because that means they are so close to finding the right dose.  They will check his level again tomorrow morning and if it is still at an okay range, we will be good to go….if not then we will have to wait another week to check the levels again.  PLEASE PRAY! Pray that the level has stayed the same and that we will be able to leave the hospital next week! Also pray that if the level is not okay and we need to stay longer that we will not be upset and that we will take that time to practice more of Noah’s care that we will need to do when we are home with him.  Pray for Andrew and I as we learn how to take care of Noah on our own.

We thank you all again for your love and support to us! We are seeing how awesome the power of prayer is and we are just so excited to be able to see the light at the end of the tunnel! THANK YOU and HAPPY NEW YEAR!!!!