Saturday, February 28, 2009
Here's the latest updates on Jacob's care:
Jacob is getting 5 ounces of milk a day, which by comparison is a small amount, but is part of the process to wake up his stomach and intestines. He is still on a conventional ventilator, but his settings are minimal and the doctors seem pleased. Our next steps are to increase feedings so that his body gets stronger and he can be on less IV fluids for nutrition. We also are going to decrease the amount of nitric Jacob gets in his air, which will allow us to make more improvements with ventilation. It would be one less thing Jacob is dependent on.
There are so many of you praying for us and for Jacob's progress. Here are some specific things that we can petition to God on Jacob's behalf.
1)Please pray that Jacob can get off the ventilator and onto "Vapotherm." This would mean that Jacob is taking control of his own breathing and will not have a tube down his throat.
2) Please pray that Jacob's body will tolerate more milk and that he will get stronger.
3) Please pray for the nurses and doctors that make decisions about Jacob's care; that God will be their hands throughout this journey.
Being here has opened our eyes. There are multiple families in the NICU that are going through similar trials. It is heartbreaking knowing that there are couples just down the hall that are fighting for their child's health, as we are. Sometimes the news is not positive and we are reminded of what God has brought Jacob through and of the miracles that are performed here on a daily basis.
Sunday, February 22, 2009
Here's a picture of the oscillating ventilator leaving the room...
Also, in the last few days Jacob has been spending more time alert and wide-eyed. He can track better with his eyes, and likes looking at the paper cranes that hang just above his head. He finally enjoys being touched and really likes his head being rubbed. Jeff has a calming touch with Jacob and I am able to read and sing him to sleep! What a treat! This has been so special for us! We praise and thank God every day for the moments we are having with our beautiful son and continue to ask for more!
Thursday, February 19, 2009
Overall, we are doing okay and Jacob continues to be on the slow road of recovery. I say slow because that's really what it is...SLOW. It can take weeks for babies to come off the ventilator, and weeks to be weened off medications, and weeks to be feeding properly, etc. We have made it over a huge hurdle with the surgery and there are challenges ahead but we have great hope. There still is the possibility that Jacob may not be able to come home with us, but we are asking God for that miracle. Jeff and I wouldn't be surprised if we are here for at least 3 months more. However, God can do amazing things, as we have witnessed so far, and would love to experience Jacob's homecoming.
A side shot of his cuteness...
Monday, February 16, 2009
Saturday, February 14, 2009
Thursday, February 12, 2009
Here's what we can ask God for:
That Jacob's liver will go ALL the way into his abdomen and that the surgeons will be able to patch his diaphragm in the proper place.
Also, that his right lung will continue to expand with GOOD alveoli and put less pressure on his heart and pulmonary vessels.
Dad changing a diaper...with all the IV lines and cords...it's alot harder than you think!
Jacob and his first baseball. He can play catch with Granpa!
There are so many of you that have shown us support through visits, cards, gifts, prayers, flowers, food, love, etc. It's so humbling that God has allowed us and Jacob to have the opportunity to receive this kind of support. Praise God for little miracles! It is our prayer that we will continue to witness more of these miracles each day with Jacob.
Tuesday, February 10, 2009
Jacob, the nurses, and the doctors spent the rest of the night and all of the next day recruiting the left lung back from the collapse. Jacob had to go up on his vent settings and oxygen in order to get back to where we were...Jacob has bounced back and as of last night (Monday) he is back to where he was before the last episode.
There are a couple of tests to run today on Jacob, an ultrasound and echo. Pray that those tests show the doctors everything they need to see!
Sunday, February 8, 2009
Mom, Dad, Gramma Jo, and Jacob
Saturday, February 7, 2009
This is why we ask...
Wednesday, February 4, 2009
I got to change Jacob's diaper today! For many of you this may seem silly or possibly on the gross side, but it was one more thing that Jeff and I got to do with Jacob that we thought we would not get to do. One thing they have been saying about Jacob is that his kidneys are really working well...he must take after me! ;)
We read a book with him called I Love You Through and Through. It starts out by saying all the things that you love about your child, "I love your top side, your bottom side, your inside, and outside." Jeff and I took turns reading each page to Jacob. I added some things into the story, as most teachers would do. I know Jacob heard us and being able to tell him how much we love him, face to face, was so special. There's nothing like reading a story to your newborn baby!
While these two things were very special, this is not the full picture of what we are going through in the NICU. In fact, today was quite depressing for Jeff and I. Jacob's day was okay and some progress was made with his ventilator and decreasing of some medicines. However, our discussion with one of the surgeons left us feeling like there is long road ahead even before the next surgery. He indicated that the surgeons want Jacob to be off the ventilator completely, or almost completely, before they will move the liver into his abdomen. He also indicated that moving the liver wouldn't solve our problems, that Jacob's lungs would still have to overcome so much in order for him to survive.
Our hearts are heavy today. We had so much hope in the first few days after birth and leading up to the first surgery, Jacob was defying all the odds. We had wanted so much for the first surgery to work and be on the road to recovery. Instead we are in this waiting period, just seeing what progress Jacob can make. In order for us have any hope for recovery and to bring our son home, Jacob needs to work his way off the ventilator. The nurses, doctors, and surgeons don't think that this will be possible for us. If it does happen, it will be a long, slow process.
We know that with God, all things are possible, and we have come this far by the Grace of God...so please pray for our "Glorious Impossible" and that Jacob can come off the ventilator sooner than expected and with far better results than can be explained by modern medicine.
Many Blessings to you all!
Tuesday, February 3, 2009
Jeff helping the nurse move Jacob's head so he is not always laying on the same side.
Here are some of the things we can be specifically praying for:
2) That Jacob continues to grow stronger, not weaker, while we wait for our next surgery.