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6-8-08
Our prayer request is that today Grace's balloon in
her feeding tube came out, meaning her feeding tube is ready to come out as
well. We had a trip to the ER where they checked the placement of the tube and
secured it in place until tomorrow. At 9:00 we are to be back for them to go in
to radiology and do surgery to put a new feeding tube in. They will not have to
make any new holes as we caught this quickly and the hole should still be
usable. Please pray that it goes smoothly and that we will be home tomorrow
afternoon. It's a little tricky as we don't know anyone closely yet to call on
for help with the other kids and Rich needs to work. Please pray for Dr.'s
tomorrow and that our search for Dr.'s here in San Antonio would be completed. I
have still had a difficult time finding a pediatrician. Thankfully Gracie has
stayed healthy. |
 Update
1-15-08
Wow! I cannot believe that Grace is now 9 months old! I have a lot of
updates to give from the last 9 months. I will try to hit the highs and lows
so you can see how faithful God has been.
Month 1 - Starting weight was 6lbs. 12oz. Grace had come home after our two
day stay in the hospital. Grace came home on Thursday at 6lbs.2oz. By Friday
she was down to 5lbs.15oz. The nurse kept saying how weak Grace was and that
was why she was sleeping all the time. As she kept saying "weak", I felt
like my crowded house was closing in on me. She said to start supplementing
her with a bottle since my milk wasn't in yet and it was too hard for Grace
to get enough. She spoke of a feeding tube as a next step. I kept thinking
surely God didn't bring Grace home to die in the next days. The nurse left
me that day trying bottles. We tried 3 different bottles that just didn't
seem to be working for Grace. I was getting very frustrated and feeling very
helpless.
Thankfully the Lord brought my sister-in-law from Minneapolis about that
time. She is a speech pathologist, and I had no idea that she would have the
knowledge we needed. She came right in and felt around in Grace's mouth. She
knew the exact kind of bottle Grace needed. She and another sister-in-law
kept looking all evening until about 11:00 in the evening they came home
with the "Haberman" bottle that they had found at a hospital. It was very
similar to the "pigeon" bottle they were looking for. Grace took it
immediately and we all knew that God's hand had taken care of our fears.
Shortly after arriving home the bili-rubin lights came for her jaundice
and she was our little glow worm for over a week. Along with that also came
a hospice team and nurses every day checking her blood levels, weight, head
circumference, and sometimes her oxygen levels. Grace was a dusky blue
around the mouth for a couple months. We had the oxygen on hand but rarely
had to use it. It was a busy month with many family and friends wanting to
spend time with our precious miracle baby, sometimes very hard as the nurses
and others reminded us of her prognosis. May came with her 1 month birthday
party and a very Happy Mothers Day.
Month 2 - Weight - 7lbs.10oz. Grace started smiling in her sleep often. It
was so precious to see. Grace had a fever in the middle of the month and was
not eating very well. She lost some weight, but on the 5th day the fever
broke and she started gaining some back. She was much fussier this month and
we weren't sure why. A chaplain came to make hand molds with each of my kids
holding Grace's hands. They are very precious.
Month 3 - 9lbs at her 2 month check. Grace had her first out of town trip to
a Grandparents farm! She also had her first swim on Father's Day and didn't
like it. She started refluxing this month and also had an ear infection The
reflux was incredibly hard. She didn't spit up, but she sounded like she was
gargling and would not allow any food down her for hours. We started her on
Prevacid, but it didn't seem to be helping. Her weight had been up to 10lbs.
but was going down quickly.
Month 4 - 9lbs 9oz. Grace was not gaining weight back as quickly as she
needed to so on July 16 we had a NG feeding tube put in. She was home for 2
days and started having trouble breathing. She had spit up twice. The
hospice nurses thought maybe she was gaining weight too fast and I wasted
too much time on the phone with them trying to figure it out. Finally the
next day I had them listen to her on the phone and they said "You need to
get her in". So off we went to the Dr.'s office who proceeded to run Grace
and I across the hospital to the proper room where she was intubated. It was
incredibly scary watching them try to get her the oxygen she needed. We took
an ambulance over to the Children's Hospital where she was admitted to the
PICU. She had definitely aspirated. Thankfully in the next couple days when
they took Grace off the respirator she was breathing on her own and doing
better.
The time was very difficult in the hospital. I had a Dr. tell me that she
thought Grace was trying to go, but we needed to be ready to let her go.
While in the hospital they put in a NJ feeding tube and after 7 days we came
home. The NJ worked very well. It bypasses the stomach
and goes directly into the small intestines (jujunem).
Month 5 - 10lbs11oz. Grace was on oxygen still through much of this month
after her pneumonia, but eventually came off. She enjoyed many family
birthdays this month and we worked on getting back in the bedroom. Grace's
nights have always been terrible. She never opened her eyes so does not have
the light/dark stimulus to help her get them straight. We live on very
little sleep. Grace responds to talking, tickling, and kissing.
Month 6 - 12 lbs. Grace had her first surgery this month. We put in a GJ
feeding tube. She did great and went home the next day. About a week later
she started spitting up formula and they had to redo the procedure. The
balloon had slipped out. Home again for 3 days and back to the ER for a
clogged tube.
Month 7 - 12 lbs. 2oz. With that ER visit they checked her blood levels and
found that all of her counts were off. I had been giving her Tylenol and
pain medication since her surgery that was masking a high temp. Her white
blood cell count was high, along with her electrolyte count. They found her
sodium, potassium, and hemoglobin counts were all off. We finally got things
under control while trying to find the source. They sent us home and found
out later that she had mono.
Apparently my older daughter had mono a few weeks before and we didn't
know it. I realized that you tell the Dr. everything, because that is how
she figured out that she needed to test for mono. Again I was amazed that
God had put us in the hospital right where we needed to be with that clogged
tube at the perfect time. He continues to take care of Grace. About a week
after that Grace's tube clogged again, always with Tylenol. I took her in to
the ER after not being able to get it unclogged for 4 hours. While the ER
Dr. was trying to get it out we heard a pop. All of a sudden her tube was
out further than it had been. I told them I thought it wasn't right, so they
x-rayed it. The placement looked fine and we were sent home. Of course by
the next morning her tube was coming all the way out. I taped it down and
drove her to the Dr. We were quickly admitted and she went in for surgery
again to redo it. Yes, the balloon had broke. I was thankful in the end as
they put in another kind of GJ tube that is actually wider. We have not had
any clogging issues since.
Month 8 - 12lbs.8oz. This month turned out to be a much better month than
the last. Grace is gaining weight again. We had an MRI done to see what was
there in her eyes and also to see how her Dandy-Walker brain malformation
was progressing. Right before Thanksgiving we found out that yes her globes
were very small (Micro-opthalmia), but were amazed to hear that her brain
malformation was no longer there. Her brain looked normal!!!! We praised God
for yet another miracle. The neurologist later told me that Dandy-Walker
just does not go away. We saw it on that ultrasound and know that it was
there. God is so incredibly good! A Dr. looked into Grace's eyes this month
(very hard for a mom). He has no doubt that she has no possibility for
vision, which is fine with me. God has always given me a peace about that.
Fun highlights of this month is that Grace will turn her head now to give
a kiss when we ask for one. She also kicks when we say kick.
She loves her toy piano by her feet to kick and make the music start.
She also will put her head up when I say "head up". Blind children are
really slow to put their heads up since they don't have the visual, so I
feel she is doing really well!
Grace also started myoclonic jerks this month (a form of seizures).
I was hoping we could bypass those with her brain being better. The depocote
seemed to work great at the beginning.
Month 9 - 14lbs.2oz. Grace had diarrhea for 2 weeks this month. They could
not figure out the cause and she was losing weight, over a lb.
Thankfully on the day we had her dedicated in church it stopped. I believe
we should have her in front of the church weekly for everyone to pray for
her! Wouldn't that be great. In trying to figure out the diarrhea, they took
her off the depocote. She is back on it, but it is not controlling her
seizures as it had before. We are also presently getting ready to have some
shells put in her eye sockets (no surgery) to see if that will spur on the
growth of her facial bones.
We appreciate the prayers of so many of you and have been so blessed by
the support and encouragement of so many. God has been incredibly faithful
to carry us through the last 9 months and even the pregnancy before Grace's
birth. We treasure these precious days with Grace and are so very thankful
for every one we have had. God has her days numbered and we are doing are
best to give Him the praise and glory He deserves.
A favorite quote we think of often is: "Worry does not rid us of
tomorrows sorrow, it just robs us of today's joy."
Cami Ann Lundt
clundt@satx.rr.com
- - -
4-15-07
I wanted you to meet our little miracle baby. God is so good! Grace is 4
days old! She was born on April 10. She has not been on any machines or
tubes except for some bili lights for jaundice. She is home with our family
getting lots of love and attention. She is nursing and bottle feeding now.
She had an echocardiogram at the hospital and her heart looked really good.
We don't know how long we will have her, but everything looks good right now
and we are so very thankful. Cami Lundt
4-12-07
Cami and Grace are going home today ... and would appreciate your continued
prayers.
Grace's diagnosis remains the same and unsure. They are thankful for each
day with her. She is in God's hands.
Prayer requests:
* for Ethan, Eric & Megan - her loving siblings
* for Cami's blood pressure to be lowered and stabilized.
- - - -
We have known the diagnosis since right before Christmas 2006. God has been
very faithful to carry us through these last few months. I am married with 3
children ages 10,8, and 5. Grace is a very special part of our family.
Please pray for some time with her alive.
Due to my high blood pressure, we have to induce on Wed. April 11. I was
hoping for more time with Grace, so we're having a hard time realizing that
the day is coming so soon. I just keep reminding myself that this is not a
surprise to God. It is all part of His perfect plan. Cami
Cami Ann Lundt clundt@satx.rr.com
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Translation
Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
to help update the medical literature and to improve the quality and
availability of medical care. Tracking Rare
Incidence Syndromes (TRIS)