Tuesday, September 29, 2009
Grief is a strange thing. The days go by and appear from the outside to be normal. Taking the kids to the park, getting groceries, taking care of Ellie. But from the inside they are different. They will never be the same.
I was pregnant for nine months and gave birth to a beautiful baby girl. I had dreams for her, dreams that were not realized when she was born severely disabled. But our dreams changed, molded to the new reality. We set up her crib next to Ellie and had medical equipment delivered. We adapted. We planned.
But that all ended when Hannah had a tracheal bleed that proved to be fatal. We said goodbye to our precious baby girl, to the plans we had for her.
It is hard to come to grips with dreams lost. Our house will not be full of the many children we had hoped and longed for. It has been hard to get used to the "new normal."
We struggle with questions throughout the day: What is God's plan for us? Why wouldn't he give us the good things we are asking for?
But our good is not always God's good. Our plans are not always his plans. We may have had dreams and goals, but our ultimate goal is God's GLORY. And that is what is happening. God is being glorified. He is glorified through Hannah's life, through the suffering of our family.
We mourn, we suffer, but not in vain. We suffer for the sake of Christ, comforted by a savior who has suffered much more. He has already given us everything we need, more than we could even ask for. He has given us eternity with God. That is where Hannah is already. She was created for eternity with her God.
Our prayer is that you know this comfort and that if you don't, that you would turn to God today. We will stand as witnesses that God is faithful and that Jesus Christ is worth suffering for.
For God's Glory--
Thursday, September 17, 2009
Please consider making a donation in Hannah's name to the Helen DeVos NICU. The people who work there have touched our lives in so many ways and were there for us in our darkest time. Donations can be coordinated through Stroo Funeral Home.
Wednesday, September 16, 2009
Visitation will be this Friday evening, Sept. 18, from 7-9 pm. at
Stroo Funeral Home
1095 68th St. SE (between Eastern and Kalamazoo Ave.)
The funeral service will be on Saturday, Sept. 19, at 11 am. at
930 52nd Street (off 52nd near Clyde Park)
Tuesday, September 15, 2009
The Lord in His unsearchable wisdom has taken our little Hannah home to be with Him. We are devastated by our loss, but are comforted that she does not have to suffer any longer and she is now safe in the arms of her heavenly Father.
We will let you know more as arrangements are made.
Monday, September 14, 2009
trying birthday cake frosting :)
We had a great day celebrating Ellie's birthday on Saturday. She is such a miracle, strong and healthy. It was bittersweet though, with a member of our family missing.
We are hoping to hear more about the plan for Hannah and her homecoming today. At this point we don't know when she will be coming home. She has been stable since her last incident, meeting all of her goals. We will keep you updated.
Wednesday, September 9, 2009
Hannah is slowly but surely getting back to "normal." She has not been scoped, so we do not know the status of her trachea tissue, but there have been no new bleeding events.
She is not sedated right now, but resting comfortably and hopefully doing a lot of healing. She is on full feedings and breathing with pressure from CPAP. We hope they will consider doing trials off of the CPAP soon.
We don't know how much longer she will be in the NICU. I guess there will just come a point where we are all comfortable with her coming home, but that is not now.
Thank you for lifting us up in prayer this weekend. Our Hope endures even in these trials.
Monday, September 7, 2009
The call came again last night. "Hannah is having another bleeding episode. You need to hurry in." Grab Ellie. Grab our stuff. Run a few red lights. Run to the NICU.
This time I was certain she would be gone when I got there. Why else would God let this happen again? Why all this needless suffering?
When we got there she was stable again. The bleeding had stopped on its own. They had given her another transfusion.
She had wild eyes, squirming and looking around. Why is this happening?
There is more granulation tissue. They are not sure if more has formed since Saturday or if it had gone unnoticed since there was so much blood when she was scoped last time.
There is not a lot they can do. The tissue needs to heal. They are giving her some steroid drops down her trach to help shrink the tissue. She is sedated, in the hope that if she does not move she will not irritate the area. Please pray for healing. Only time will tell.
I stare at the phone, waiting for it to ring.
Saturday, September 5, 2009
One thing you never want to get when your child is in the hospital is a phone call in the middle of the night. That is what we got last night. I was up pumping and the phone rang. My heart sank because I knew what it had to be. "Emily, Hannah is not doing well at all. We think you should come in right away. Hannah is losing a lot of blood and we are doing chest compressions."
Adam and I scurried to get Ellie in the van and sped off to the hospital. Thankfully, his parents were in town and could stay with the boys.
When we got to her bedside, Hannah was already stable and the worst was over. She had been bleeding from her trach, mouth, and nose. She had lost so much blood that they were giving her blood from the blood bank. The bleeding had stopped though and they were now trying to find out from where it was coming.
The ENT came in and scoped her and found a "granuloma" inside her trach. It is a collection of tissue caused by irritation from a foreign object being in her body. They suspect the trach tube was rubbing against her trachea and caused this growth of tissue. Granulation tissue can bleed profusely-in this case they compared the amount of bleeding to that of an arterial wound.
The ENT was able to remove the granuloma and the bleeding is under control. Hannah is on the vent resting. Thankfully, she did not get a lot of blood in her lungs and we are optimistic that her breathing will get back to where it was before this incident.
We are so thankful that Hannah was not home when this bleeding occurred. It would have been very difficult for us to manage it at home. The outcome may not have been so good. We are also thankful that we have found a probable cause for the bleeding and that it seems to be under control.
Ultimately, we know the life of Hannah is in God's hands. As we were driving to the hospital we were preparing to say goodbye to our daughter-but again God had a different plan. We continue to rest in His loving and comforting arms.
Thursday, September 3, 2009
We have completed our trach "training" (ha ha) and have proved to the hospital that we can take care of a baby with a trach. We have filled out pages of paperwork and talked to countless people, lining things up so that we can go home.
Hannah has been doing great, eating well, breathing well. She is now tolerating an HME (the sponge nose on her trach) during the day. Next step: trying the PMV (speaking valve).
We are working around the house, getting things organized and set up for Hannah's homecoming. We are organizing the girls' closet to hold all of their medical supplies. Tomorrow all of Hannah's equipment and supplies are delivered so that I can get them all put away before she comes home.
At this point, it looks like she will be cleared to go home the middle to end of next week. She is stable enough to go home today, but there is red tape that needs to be taken care of before she can come home. We are working to get some daytime nursing shifts scheduled so that I will be able to get out to take one or both girls to the doctor, get groceries, or just do something special with the boys. We will see how it goes, taking one day at a time. Most of you will remember that we were not huge fans of nursing care in our home, but we recognize that having two medically fragile children will present new challenges.
Thank you so much for your support and prayers. We have received many gifts and cards and yummy meals that mean so much to us. We thank you for your faithfulness in supporting and praying for us.
We praise God that things have moved forward as planned and that Hannah will God-willing be home very soon!