Today has been an incredibly difficult day. I walked in the NICU this
morning to see her sitting at 100% oxygen again and her saturation level
still dropping. It was reminiscent of Saturday all over again only she
has not recovered as well today. Saturday was a "bump" according to
the doctor but he described today as a "hill" possibly turning into a
mountain. On Saturday, we knew that her ductus was open and causing
issues, but today it is closed and they are unsure as to what is wrong.
She could be fighting infection or she could be struggling with renal
issues. They checked her abdomen for abcesses and NEC but those do not
seem to be the issue. They do think she may have pulmonary hypertension
but it still is not certain. As of an hour ago, the doctor said the
next 24 hours are "touch and go" and they have given us a room here at
the hospital to stay the night so we can be nearby. Tom took the day
off of work after they called us early this morning that things were not
going well and has been at the hospital all day as well. Noelle has had
different procedures, x-rays, ultrasounds, etc...going on since 11:00
last night when things first started going downhill, and she has been
awake for a good part of this even through most of today. It's
encouraging to see her alert and active and still fighting the nurses
when they do a procedure--that is a good sign, and yet she needs to
rest. My heart broke today as I talked to her and she looked at me with
eyes wide open. It hurts to see her lying there with multiple things
poked into her and tubes and wires all over the place and machines
beeping; and yet as I poured my heart out to my heavenly Father tonight,
I was reminded that He understands my heart beyond measure. Not only
did He watch His Son die, but He watched Him in agony leading up to His
death as His Son begged Him to "let this cup pass from me." What parent
would not give in to their child's earnest pleading like that? And yet
God did not. He loved us so much that He still gave His only Son so
that I might have eternal life. My hurt and pain right now can't even
begin to compare to His. And so we leave our hearts in His hands
because just as He saw the "bigger picture" with His own Son and carried
His plan through for His glory, so He will do with us. This does not
mean that everything will be okay in human terms, but it does mean that
everything is okay because His plan will be accomplished, and He will be
glorified. Does that make our hearts hurt less as we travel this
road? No, but it does bring peace to know our Savior is in control and
is with us each step of the way. Thank you for continuing in prayer
with us.
Showing posts with label NEC. Show all posts
Showing posts with label NEC. Show all posts
Monday, February 6, 2012
NICU Day 21 (December 28th)
***Written by Chris McDowell, Jill's Mother***
Your prayers were felt greatly on Tuesday and Wednesday. Noelle has stayed stable for the most part. She developed a sizable gas bubble in her intestines and the abdomen was distended. The staff immediately began assessing her for NEC (necrotizing enterocoloitis) and prepared her for transfer to Baptist, if it becomes necessary . If the intestines perforate and the gas goes into the abdomen it is immediate emergency surgery(which would have to be done at Baptist). They started her on antibiotics and inserted a tube to draw the gas out. Her xrays looked better Wednesday evening at 10 PM, while her abdomen was still discolored.
The jet ventilator has improved her blood gasses which, Lord willing, will help the PDA (opening in her heart) to reduce, but that won't be known for a few days. She is more agitated when on the jet ventilator because it "wiggles" her whole body so she is on a very low dose of sedative.
Her chest xray looked a bit "hazy" Wednesday morning which suggested fluid in the lungs from the PDA. She was started on diuretics which hopefully will help her body drain the fluid for now.
Noelle did reach the 500 gram mark on Wednesday morning which is a praise as far as her being the size the surgeons would want to see to perform the heart surgery to close the PDA if needed, but we are hoping and praying that is not needed at least for now. She is so small and it would have to be the last resort. She received her second dose of ibuprofen around 6 PM Wednesday.
They did take her off the hydrocortisone for her blood pressure. They had gradually weaned her down hoping her own adrenal glands would kick in. So far her blood pressure was staying stable.
Your love and prayers truly helped us navigate the ups and downs of Tuesday and Wednesday. We can't thank you enough for all of your care and support at this time. God bless you all.
Your prayers were felt greatly on Tuesday and Wednesday. Noelle has stayed stable for the most part. She developed a sizable gas bubble in her intestines and the abdomen was distended. The staff immediately began assessing her for NEC (necrotizing enterocoloitis) and prepared her for transfer to Baptist, if it becomes necessary . If the intestines perforate and the gas goes into the abdomen it is immediate emergency surgery(which would have to be done at Baptist). They started her on antibiotics and inserted a tube to draw the gas out. Her xrays looked better Wednesday evening at 10 PM, while her abdomen was still discolored.
The jet ventilator has improved her blood gasses which, Lord willing, will help the PDA (opening in her heart) to reduce, but that won't be known for a few days. She is more agitated when on the jet ventilator because it "wiggles" her whole body so she is on a very low dose of sedative.
Her chest xray looked a bit "hazy" Wednesday morning which suggested fluid in the lungs from the PDA. She was started on diuretics which hopefully will help her body drain the fluid for now.
Noelle did reach the 500 gram mark on Wednesday morning which is a praise as far as her being the size the surgeons would want to see to perform the heart surgery to close the PDA if needed, but we are hoping and praying that is not needed at least for now. She is so small and it would have to be the last resort. She received her second dose of ibuprofen around 6 PM Wednesday.
They did take her off the hydrocortisone for her blood pressure. They had gradually weaned her down hoping her own adrenal glands would kick in. So far her blood pressure was staying stable.
Your love and prayers truly helped us navigate the ups and downs of Tuesday and Wednesday. We can't thank you enough for all of your care and support at this time. God bless you all.
NICU Day 20 (December 27th)
***Written by Chris McDowell, Jill's Mother***
Yesterday the doctors noted a heart murmur which they were hoping was due to low hemoglobin. She received her transfusion yesterday and was pretty stable. pH level in her blood gases were just barely under the norm, but they were consistent with her heel stick which they said was good. This morning they felt the heart murmur was a bit more pronounced and during morning rounds the nurse changed her diaper and there was some blood in the stools. They quickly began ordering different tests to try and determine the cause. The xray revealed that her intestines are fine (so no NEC at this point). The echocardiogram showed that the ductus arteriosis (an opening in the heart that helps shunt blood away from the lungs and to the body when the baby is in the womb and begins to close within a few hours to a few days after birth) was actually more enlarged than it has been. They knew it was open -- this can take a while with the preemies, but because it is more open it is shunting blood away from intestinal circulation (thus the blood in the stools). If this does not improve to a certain level then Noelle is in danger of going into congestive heart failure. One drug that helps with this also restricts blood flow so due to the fact that her intestines are already sensitive they will not use that. She is not a good candidate for surgery at this point -- she weighs 440 grams and they have not done this surgery on a baby less than 500 grams. At this point in time they feel their only option is treatment with ibuprofen (it's specially formulated). It will be given once every 24 hours (over a 30 minute window) and for the next 3 days. They also put her back on the jet ventilator which will help them regulate her blood pH levels which could help with the closing of the PDA (patent ductus arteriosus).
This is life in the NICU. Things can seem to be going along nice and steady and one thing can tip everything upside down.
We truly know that God has given a gift of 20 days thus far and our prayer is if it be His will that He would graciously guide the doctors and through His strength Noelle's body would respond to the treatments.
We appreciate your love and prayers so much.
God Bless.
Yesterday the doctors noted a heart murmur which they were hoping was due to low hemoglobin. She received her transfusion yesterday and was pretty stable. pH level in her blood gases were just barely under the norm, but they were consistent with her heel stick which they said was good. This morning they felt the heart murmur was a bit more pronounced and during morning rounds the nurse changed her diaper and there was some blood in the stools. They quickly began ordering different tests to try and determine the cause. The xray revealed that her intestines are fine (so no NEC at this point). The echocardiogram showed that the ductus arteriosis (an opening in the heart that helps shunt blood away from the lungs and to the body when the baby is in the womb and begins to close within a few hours to a few days after birth) was actually more enlarged than it has been. They knew it was open -- this can take a while with the preemies, but because it is more open it is shunting blood away from intestinal circulation (thus the blood in the stools). If this does not improve to a certain level then Noelle is in danger of going into congestive heart failure. One drug that helps with this also restricts blood flow so due to the fact that her intestines are already sensitive they will not use that. She is not a good candidate for surgery at this point -- she weighs 440 grams and they have not done this surgery on a baby less than 500 grams. At this point in time they feel their only option is treatment with ibuprofen (it's specially formulated). It will be given once every 24 hours (over a 30 minute window) and for the next 3 days. They also put her back on the jet ventilator which will help them regulate her blood pH levels which could help with the closing of the PDA (patent ductus arteriosus).
This is life in the NICU. Things can seem to be going along nice and steady and one thing can tip everything upside down.
We truly know that God has given a gift of 20 days thus far and our prayer is if it be His will that He would graciously guide the doctors and through His strength Noelle's body would respond to the treatments.
We appreciate your love and prayers so much.
God Bless.
NICU Day 14 (December 21st)
Noelle had a good day overall today. They still have her on the new
ventilator and have not put her back onto the jet ventilator as of yet
so we're hoping this will stick with her and she can graduate to the CPAP machine in another 10 days or so. Her white blood count was lower
today and no news has come back regarding an infection as of yet, so
we're thankful for that. Her blood sugar has been stable, and they are
trying to adjust her different fats/nutrition that she receives to help
her start putting on weight and growing. We did find out today that she
had what they consider to be a level 2 brain bleed. They re-evaluated
her last cranial ultrasound with a neurologist and believe they saw a
small blood clot; however, this level is not usually anything that has
long term effects, and she does not seem to have any side effects
currently from it. They will continue to do ultrasounds every week or
two to monitor it just to be safe, but they believe we are past the
worst danger point for her to develop anything further with it. There
still is a concern for her to develop NEC, and this will be the most
crucial for the next month or so. Currently, she is tolerating her
feeds very well, and they bumped her to .6 today so we are thankful for
that too. Overall, a good day and another day down. She will be two
weeks old in just a few more hours!! Thanking God for each day...
NICU Day 5 (December 12th)
***Written by Chris McDowell, Jill's Mother***
The roller coaster ride continues. Noelle was stable today, but the Dr.'s are carefully monitoring a couple of things. One is her glucose levels. She will have a couple of normal range levels and then it will drop. Right now they are attributing it to her size, but if it continues they will have to consider and endocrine problem. Also, today her tiny abdomen was a bit distended. An x-ray was ordered and revealed she had gas in her intestines. They stopped the feeding tube and ordered another x-ray for this evening to see if the gas is moving thru her intestines. The gas had moved tonight and they will check again in the morning. There is a serious concern for NEC--Necrotizing Enterocolitis. This is a disease to which especially preterm infants are susceptible. NEC involves inflammation and infection that destroys the bowel. It usually occurs after milk feedings begin because the infant's intestinal tract is so immature. If an infant gets this it requires emergency surgery to save them, but at this point surviving the surgery is questionable.
They were happy with the x-ray results this evening and we are praying that the x-ray in the morning will show continued movement in the intestines.
Another battle is how fragile Noelle is. Her skin is so thin and not fully developed. She bruises easily and is so very fragile.
On a good note she is responding to light and opens her eyes. It has been noted that she really responds to Jill and Tom talking to her. They continue to use a very low dose of Fentanyl to calm her just enough so she does not fight the ventilator.
Jill is home now and beginning a daily schedule of going to the hospital early in the mornings for grand rounds then going home for a while to rest in the afternoon and then she and Tom will go up in the evenings after he gets home from work. My sister is there this week helping and their church family is also helping tremendously.
Pray as they wade through all the paperwork that has to be done for such a birth and hospital care.
God Bless All Our Family and Friends
The roller coaster ride continues. Noelle was stable today, but the Dr.'s are carefully monitoring a couple of things. One is her glucose levels. She will have a couple of normal range levels and then it will drop. Right now they are attributing it to her size, but if it continues they will have to consider and endocrine problem. Also, today her tiny abdomen was a bit distended. An x-ray was ordered and revealed she had gas in her intestines. They stopped the feeding tube and ordered another x-ray for this evening to see if the gas is moving thru her intestines. The gas had moved tonight and they will check again in the morning. There is a serious concern for NEC--Necrotizing Enterocolitis. This is a disease to which especially preterm infants are susceptible. NEC involves inflammation and infection that destroys the bowel. It usually occurs after milk feedings begin because the infant's intestinal tract is so immature. If an infant gets this it requires emergency surgery to save them, but at this point surviving the surgery is questionable.
They were happy with the x-ray results this evening and we are praying that the x-ray in the morning will show continued movement in the intestines.
Another battle is how fragile Noelle is. Her skin is so thin and not fully developed. She bruises easily and is so very fragile.
On a good note she is responding to light and opens her eyes. It has been noted that she really responds to Jill and Tom talking to her. They continue to use a very low dose of Fentanyl to calm her just enough so she does not fight the ventilator.
Jill is home now and beginning a daily schedule of going to the hospital early in the mornings for grand rounds then going home for a while to rest in the afternoon and then she and Tom will go up in the evenings after he gets home from work. My sister is there this week helping and their church family is also helping tremendously.
Pray as they wade through all the paperwork that has to be done for such a birth and hospital care.
God Bless All Our Family and Friends
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