Sunday January 26, 2014
We received a call this morning that Marcello was not his feisty self and they had to re-intubate him. The Dr's looked him over and are thinking he has NEC. Please pray that the antibiotics work and that he won't need another surgery. Please continue prayers for Manuel that his small intestinal hole will heal without surgery.
Sunday, January 26, 2014
Friday, January 24, 2014
UPDATE ON EARLIER PRAYER REQUEST
UPDATE: Friday January 24, 2014 9:00 PM
Manuel received his surgery earlier this morning and had a drain placed into his abdomen to resolve the floating air in his abdomen. He is currently stable and continues to be monitored. Right now we are playing the waiting game to see if the drain that was placed will resolve the floating air from his abdomen. We will update the blog this weekend with last weeks events. Thank you for your continued prayers and we ask to pray for healing and that the small hole will heal on it's own.
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Friday January 24, 2014 5:00 AM
Please Pray for Manuel as we received a call at 4 this morning and he will have to have surgery done. A small hole was found in his intestines. Please pray for healing and a quick recovery.
Manuel received his surgery earlier this morning and had a drain placed into his abdomen to resolve the floating air in his abdomen. He is currently stable and continues to be monitored. Right now we are playing the waiting game to see if the drain that was placed will resolve the floating air from his abdomen. We will update the blog this weekend with last weeks events. Thank you for your continued prayers and we ask to pray for healing and that the small hole will heal on it's own.
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Friday January 24, 2014 5:00 AM
Please Pray for Manuel as we received a call at 4 this morning and he will have to have surgery done. A small hole was found in his intestines. Please pray for healing and a quick recovery.
Wednesday, January 22, 2014
Three Weeks Old
Friday January 17, 2014
Dr.
Wareham stopped by this morning and talked with us about Marcello and Manuel’s
progression. So far the entire medical staff is pleased with how they are
developing and adjusting to their environment. He asked us what we thought their survival rate was now that they are three weeks of age. Daddy thought that they had about 30% survival and Mommy thought that they had more like a 60% chance. Dr. Wareham explained that with them now
having survived to three weeks today that their chances of survival are actually now at
85% to 90%. Mommy and Daddy were surprised at this survival percentage.
Hallelujah! Praise the Lord! God is Good! We just cannot believe how far God has brought them along since their 6% survival rate at birth. God truly has worked miracles in them!
This in now way means that everything is all uphill from here because they are
still considered to be Micro Preemie’s and the worry of contracting Necrotizing Enterocolitis (or NEC) and Bacterial Infection remains high. They will continue to remain hospitalized and will remain in the NICU until at least April 23 (their due date).
As for their updates, Manuel was given a blood transfusion today as his hematocrit level was a little lower than the doctors liked. All his other stats were within normal limits.
Marcello’s heart continues to fluctuate, but his respiratory settings have remained stable. He has been stable with his respiratory long enough that he was removed from the Oscillator Ventilator. He now remains only on the conventional ventilator (like his brother Manuel) and has had a very positive response to the change.
We have recieved and witnessed so much good news today that Mommy and Daddy had to pinch ourselves to make sure it was not a dream. We give thanks to God for all that we have witnessed with them and ask all to continue to keep them in your prayers. We pray for continued healing and growth for both Marcello and Manuel.
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| Marcello Waiving Hello |
Hallelujah! Praise the Lord! God is Good! We just cannot believe how far God has brought them along since their 6% survival rate at birth. God truly has worked miracles in them!
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| Marcello Tucked in for the Night |
As for their updates, Manuel was given a blood transfusion today as his hematocrit level was a little lower than the doctors liked. All his other stats were within normal limits.
Marcello’s heart continues to fluctuate, but his respiratory settings have remained stable. He has been stable with his respiratory long enough that he was removed from the Oscillator Ventilator. He now remains only on the conventional ventilator (like his brother Manuel) and has had a very positive response to the change.
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| Manuel Tucked in for the Night |
Monday, January 20, 2014
Tummy Time
Thursday January 16, 2014
There
were fluctuations in Marcello’s heart rate today and this could be due to the
medications that he is currently on. A slight murmur was also heard in his
heart by Dr. Wareham, but this was not too concerning to him at the moment. The
process of weaning him from fentanyl also began today and they will continue to
monitor him over night to ensure that he does not require additional pain
medication.
Nancy (his Ostomy Nurse) stopped by this afternoon to change his dressing and ostomy bag. While she was here, Dr. Kokoska stopped by to inspect this incision. Dr. Kokoska was pleased with how the incision was looking, although it has opened a little it is not infected and appears to now have some muscle growth.
This evening Marcello did seem a bit agitated so Mommy was only allowed to do his temperature. The nurses took care of his weighing (of which he was 1 lb 8 oz) and his linen change. Later in the evening he was given a dose of morphine as he still appeared agitated to the nursing staff and this did help to steady his heart fluctuations and calm him down.
Manuel
was removed from Jet ventilation this morning and placed on conventional
ventilation. He will continue to be monitored to ensure that his lungs do not
over-inflate because of the negative air pressure provided by the use of the
conventional. However, after a few adjustments to the conventional settings,
Manuel settled down this afternoon and is doing remarkably well on the
conventional ventilator. Manuel's x-ray readings also came back this afternoon and they showed that
everything was still looking good with him.
This evening when we returned to the NICU we were surprised to see Manuel on his tummy. We were told that because he is now on the conventional ventilator and he has not had to have any surgery, then he could now be placed on his tummy to give the back of his little head a break from being laid on.
We continue to give thanks to God for having placed his healing hands on Marcello and Manuel. There is still a long road ahead of us, but we know that with God, anything is possible. We will continue to place our faith in God and pray that he continues to give health to Marcello and Manuel.
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| Marcello Cristian |
Nancy (his Ostomy Nurse) stopped by this afternoon to change his dressing and ostomy bag. While she was here, Dr. Kokoska stopped by to inspect this incision. Dr. Kokoska was pleased with how the incision was looking, although it has opened a little it is not infected and appears to now have some muscle growth.
This evening Marcello did seem a bit agitated so Mommy was only allowed to do his temperature. The nurses took care of his weighing (of which he was 1 lb 8 oz) and his linen change. Later in the evening he was given a dose of morphine as he still appeared agitated to the nursing staff and this did help to steady his heart fluctuations and calm him down.
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| Manuel's Tummy Time |
This evening when we returned to the NICU we were surprised to see Manuel on his tummy. We were told that because he is now on the conventional ventilator and he has not had to have any surgery, then he could now be placed on his tummy to give the back of his little head a break from being laid on.
We continue to give thanks to God for having placed his healing hands on Marcello and Manuel. There is still a long road ahead of us, but we know that with God, anything is possible. We will continue to place our faith in God and pray that he continues to give health to Marcello and Manuel.
26 Weeks and Not Out of the Woods Yet
Wednesday January 15, 2014
Today was a stressful day for Mommy and Daddy as Marcello started to drop in his heart rate,desat in his oxygen intake,his white count was elevated, and was not acting like his feisty self this morning. Dr. Wareham (his Neonatologist), Dr. Kokoska (his Pediatric Surgeon), Dr. Belcher (his Infectious Disease doctor) and Amy (his Nurse Practitioner) along with their assistants came by to do a medical analysis of Marcello’s status. They all decided to check a septic workup on him to check for infection.
The decision was made to place him back on an Oscillator Ventilator to assist his with his breathing. Mommy and Daddy were a little concerned seeing all the medical teams around him and seeing the look of worry on their faces. They were all worried because there was no reason that he should be digressing as he had. We are praying that his body will heal of whatever is ailing him and that he gets better to the point that he can come back off the Oscillator.
Marcello was also ordered back on antibiotics and was given a blood transfusion because his blood reading did not come back with acceptable readings. Marcello seems a bit calmer this evening after having received the antibiotics and blood transfusion but still remains on the oscillator and will likely remain on it for a few days, or at least until his blood gasses come back and remain at acceptable readings.
Manuel was re-evaluated today and orders were placed to begin the process to remove him from the Jet Ventilator onto CPAP (only if the nose piece would fit). When he was fitted for the CPAP nose piece, it was discovered to be much too large for his little nostrils to handle. They decided to place orders to have him on the conventional ventilator until he has grown enough to fit the CPAP nose piece.
Pastor Lepley came by this evening to pray for the twins. We pray that God will reach down and help Marcello get past his ailment. We also pray that this is not bacterial as this could be bad for him. We continue to pray that God will allow them to one day come home.
Today was a stressful day for Mommy and Daddy as Marcello started to drop in his heart rate,desat in his oxygen intake,his white count was elevated, and was not acting like his feisty self this morning. Dr. Wareham (his Neonatologist), Dr. Kokoska (his Pediatric Surgeon), Dr. Belcher (his Infectious Disease doctor) and Amy (his Nurse Practitioner) along with their assistants came by to do a medical analysis of Marcello’s status. They all decided to check a septic workup on him to check for infection.
The decision was made to place him back on an Oscillator Ventilator to assist his with his breathing. Mommy and Daddy were a little concerned seeing all the medical teams around him and seeing the look of worry on their faces. They were all worried because there was no reason that he should be digressing as he had. We are praying that his body will heal of whatever is ailing him and that he gets better to the point that he can come back off the Oscillator.
Marcello was also ordered back on antibiotics and was given a blood transfusion because his blood reading did not come back with acceptable readings. Marcello seems a bit calmer this evening after having received the antibiotics and blood transfusion but still remains on the oscillator and will likely remain on it for a few days, or at least until his blood gasses come back and remain at acceptable readings.
Manuel was re-evaluated today and orders were placed to begin the process to remove him from the Jet Ventilator onto CPAP (only if the nose piece would fit). When he was fitted for the CPAP nose piece, it was discovered to be much too large for his little nostrils to handle. They decided to place orders to have him on the conventional ventilator until he has grown enough to fit the CPAP nose piece.
Pastor Lepley came by this evening to pray for the twins. We pray that God will reach down and help Marcello get past his ailment. We also pray that this is not bacterial as this could be bad for him. We continue to pray that God will allow them to one day come home.
Saturday, January 18, 2014
One Eye Open
Tuesday January 14, 2014
Manuel’s
x-ray results came back and his right lung is looking stable. They did find
that he has developed a small hernia and will add that to the items they are
currently monitoring for him. They have started to wean Manuel’s ventilator
settings and are considering taking him off the Jet Ventilator in the next
couple of days.
GOOD NEWS! Manuel received his follow-up echocardiogram this afternoon and it showed that his PDA appeared to be smaller. We will see if it closes on its own. So this means that he might not require the Ligation Surgery – Alleluia! Praise the Lord!
He is doing so well that at 8PM today Mommy was able to assist with his first feeding. Manuel actually is feeding on the colostrum that was saved from Mommy soon after they were born. This will help him get the nourishment that his little body needs and should help him to also start to gain some weight. It was an emotional and exciting moment for Mommy to be able to hold the syringe and tube for his feeding.
Marcello’s respiratory status looked good that the Neonatologists and Nurse Practitioner are considering taking him off ventilation. Dr. Kokoska came by today because Marcello had leaked a little of his ostomy bag and was a little worried about the stool infecting the incision.
He will
continue to monitor Marcello to ensure the incision does not get infected and
that the stool remains in the bag. He has remained stable in all of his other
stats that the Doctors have allowed him to be taken off his antibiotics late
this evening
Marcello surprised Mommy before she left and opened his left eye! Mommy was surprised that he actually had it opened and was checking out his surroundings.
On the way home, Mommy heard a song on Klove written by Hillsong United entitled Oceans (Where my feet may fail) that just spoke to her heart. She shared this with Daddy and when Daddy listened to it, he felt that the song had so fittingly put in lyric the feelings that we have had along this journey with Marcello and Manuel.
We continue to thank God for all the Miracles that we are allowed to witness through Manuel and Marcello. Each day we have with them is a gift from God and we cherish our time with them.
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| Manuel's first feeding |
GOOD NEWS! Manuel received his follow-up echocardiogram this afternoon and it showed that his PDA appeared to be smaller. We will see if it closes on its own. So this means that he might not require the Ligation Surgery – Alleluia! Praise the Lord!
He is doing so well that at 8PM today Mommy was able to assist with his first feeding. Manuel actually is feeding on the colostrum that was saved from Mommy soon after they were born. This will help him get the nourishment that his little body needs and should help him to also start to gain some weight. It was an emotional and exciting moment for Mommy to be able to hold the syringe and tube for his feeding.
Marcello’s respiratory status looked good that the Neonatologists and Nurse Practitioner are considering taking him off ventilation. Dr. Kokoska came by today because Marcello had leaked a little of his ostomy bag and was a little worried about the stool infecting the incision.
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| Marcello with his left eye open |
Marcello surprised Mommy before she left and opened his left eye! Mommy was surprised that he actually had it opened and was checking out his surroundings.
On the way home, Mommy heard a song on Klove written by Hillsong United entitled Oceans (Where my feet may fail) that just spoke to her heart. She shared this with Daddy and when Daddy listened to it, he felt that the song had so fittingly put in lyric the feelings that we have had along this journey with Marcello and Manuel.
We continue to thank God for all the Miracles that we are allowed to witness through Manuel and Marcello. Each day we have with them is a gift from God and we cherish our time with them.
Waiting on Surgery
Monday January 13, 2014
Today Manuel has remained relatively stable. Dr. Belcher, the Infection doctor, is going to continue to monitor him an additional day before he will be comfortable clearing Manuel for surgery. He is scheduled to receive an additional echocardiogram of his heart in the morning to check the current state of his PDA. The results from the chest x-ray he had yesterday also came back today and it showed that his right lung looked a bit better.
Marcello received a visit from Nancy (his ostomy nurse) this morning. She cleaned him up a bit and changed his dressing and ostomy bag. Dr. Kokoska also stopped by in the afternoon to look over the his incision. Dr. Kokoska was pleased with how the incision was looking.
Pastor Daniel Lepley came by today to visit the twins. Pastor informed us that he had written another letter about the inspiration that he has received from Marcello and Manuel and provided us with a copy of the letter. A link to the letter can be found by clicking here or copying and pasting the following link into an Internet browser http://onourorigins.wordpress.com/2014/01/13/knowing-the-comfort-of-a-god-who-knows/
We are touched that Marcello and Manuel have impacted so many lives and helped many with their relationship with God. We lift God in praise for the healing and comfort that He has provided to not only Marcello and Manuel but to us as his parents. We pray that Marcello and Manuel continue to improve so that one day they can come home.
Today Manuel has remained relatively stable. Dr. Belcher, the Infection doctor, is going to continue to monitor him an additional day before he will be comfortable clearing Manuel for surgery. He is scheduled to receive an additional echocardiogram of his heart in the morning to check the current state of his PDA. The results from the chest x-ray he had yesterday also came back today and it showed that his right lung looked a bit better.
Marcello received a visit from Nancy (his ostomy nurse) this morning. She cleaned him up a bit and changed his dressing and ostomy bag. Dr. Kokoska also stopped by in the afternoon to look over the his incision. Dr. Kokoska was pleased with how the incision was looking.
Pastor Daniel Lepley came by today to visit the twins. Pastor informed us that he had written another letter about the inspiration that he has received from Marcello and Manuel and provided us with a copy of the letter. A link to the letter can be found by clicking here or copying and pasting the following link into an Internet browser http://onourorigins.wordpress.com/2014/01/13/knowing-the-comfort-of-a-god-who-knows/
We are touched that Marcello and Manuel have impacted so many lives and helped many with their relationship with God. We lift God in praise for the healing and comfort that He has provided to not only Marcello and Manuel but to us as his parents. We pray that Marcello and Manuel continue to improve so that one day they can come home.
Wednesday, January 15, 2014
A Good Weekend for the Twins
Saturday January 11, 2014 and Sunday January 12, 2014
Saturday
On Saturday, Manuel had a follow-up chest x-ray and his right lung continues to improve. Infectious disease came by and still did not feel comfortable enough to clear Manuel for surgery because his white blood cell count remains elevated. Ideally they want his white blood cell count to come down and remain down for at least 48 hours before they will clear him. If they were to go into surgery with a high white blood cell count, he could run a high risk of infection around the site of the surgery and understandably this is what we want to avoid especially around the heart.
Manuel received a blood transfusion today and continues to remain stable with his vitals that are being monitored and has improved with his weight, weighing 1 lb 4 oz today. We thank the Lord that his right lung has continued to improve and pray that his white blood cell count comes down so that he can have the PDA Ligation that he desperately needs.
Marcello remains stable and appears to be doing good in color after his PDA Ligation. He was given a blood transfusion today because his hematocrit was a little low. His incision is healing remarkably and we could see some meconium poop in his ostomy bag. Yea his stoma is working!
The twins got a special visit today by their big brothers. Mateo and Macario were excited to gown up and visit them. They first stopped by Marcello and visited for a while. Marcello lifted his little hand as if he was waiving hello to his brothers. Manuel was sleeping and would wiggle his toes every so often at his brothers. Mateo and Macario enjoyed their time that they have with their brothers.
Sunday
On Sunday, the boys remained stable and had the quietest day so far. We are thankful that God blessed them with a quiet weekend and allowed that their little bodies can heal. All the prayers that are being lifted up to God for our little Marcello and Manuel are being heard.
We are thankful to all that continue to keep them in prayer and especially to God for allowing us time with our sons. We pray for healing and strength for marcello and Manuel. We also send a special prayer up for Mateo, Macario, and Marquez that God continues to provide for thier needs.
We pray that God will allow Marcello and Manuel to grow into men so that they can continue their witness of how God has touched thier lives and worked miricles in them.
Saturday
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| Macario and Mateo with Manuel |
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| Macario with Marcello |
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| Mateo with Marcello |
Marcello remains stable and appears to be doing good in color after his PDA Ligation. He was given a blood transfusion today because his hematocrit was a little low. His incision is healing remarkably and we could see some meconium poop in his ostomy bag. Yea his stoma is working!
The twins got a special visit today by their big brothers. Mateo and Macario were excited to gown up and visit them. They first stopped by Marcello and visited for a while. Marcello lifted his little hand as if he was waiving hello to his brothers. Manuel was sleeping and would wiggle his toes every so often at his brothers. Mateo and Macario enjoyed their time that they have with their brothers.
Sunday
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| A Few Get Well Wishes for the Twins |
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| A Few Get Well Wishes for the Twins |
We pray that God will allow Marcello and Manuel to grow into men so that they can continue their witness of how God has touched thier lives and worked miricles in them.
Monday, January 13, 2014
Two Weeks Old and In God's Hands
Friday January 10, 2014
When we arrived to the NICU, Dr. Akinola (the Neonatologist), the Nurse Practitioner and the Nurse were at Manuel’s bedside. They had done a chest x-ray last night and found that his right lung was extremely hyper-inflated and that it was entering into his left lung’s cavity and putting additional pressure on his heart. They also saw what appeared to be air cysts in his right lung. They told us that there was nothing medically that could be done to his lung if indeed the air pockets were cysts. They moved him to his right side and took an additional x-ray before we had arrived and found that this did help bring down the lung a little but that it was still hyper-inflated and still a concern to them.
They started Manuel on another blood transfusion and started him on dopamine again. This seemed to help his heart and his kidneys. This afternoon, the nurses were having a difficult time getting blood for his lab test as he was poked several times. We said a little prayer with Pastor Lepley and left the NICU so that they can work on Manuel.
When we returned to the NICU we were greeted by Dr. Akinola and she was singing praises of Hallelujah. Manuel’s lung had remarkably come down in size and had actually moved back into the right lung cavity alleviating pressure from his heart and his left lung. Dr. Akinola took mommy and daddy back into the Physician's Lounge and showed us the chest xray of before and after. It was amazing to see the visible change that has occurred over the past few hours.
The nurses continue to monitor Marcello's stoma for improvement. The
wound ostomy nurse came by today and cleaned his incision and placed a new
ostomy bag on him. Dr. Kokoska also
stopped by and was pleased at how well Marcello has been healing. He also
validated that his stoma has been functioning as he has seen what appears to be meconium poop in the
ostomy bag. Marcello continues to remain stable and his body has accepted the PDA ligation and improvement of blood flow remarkably well.
Today we witnessed the miracle of God’s touch on Manuel and God continues to heal Marcello from his surgeries. Marcello and Manuel are a living testament that God does indeed hear our prayers and even watches over the littlest ones. We praise God that he has allowed both Marcello and Manuel to remain with us and pray for many more day's with them.
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| Manuel Gabriel |
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| Manuel Gabriel |
When we arrived to the NICU, Dr. Akinola (the Neonatologist), the Nurse Practitioner and the Nurse were at Manuel’s bedside. They had done a chest x-ray last night and found that his right lung was extremely hyper-inflated and that it was entering into his left lung’s cavity and putting additional pressure on his heart. They also saw what appeared to be air cysts in his right lung. They told us that there was nothing medically that could be done to his lung if indeed the air pockets were cysts. They moved him to his right side and took an additional x-ray before we had arrived and found that this did help bring down the lung a little but that it was still hyper-inflated and still a concern to them.
They started Manuel on another blood transfusion and started him on dopamine again. This seemed to help his heart and his kidneys. This afternoon, the nurses were having a difficult time getting blood for his lab test as he was poked several times. We said a little prayer with Pastor Lepley and left the NICU so that they can work on Manuel.
When we returned to the NICU we were greeted by Dr. Akinola and she was singing praises of Hallelujah. Manuel’s lung had remarkably come down in size and had actually moved back into the right lung cavity alleviating pressure from his heart and his left lung. Dr. Akinola took mommy and daddy back into the Physician's Lounge and showed us the chest xray of before and after. It was amazing to see the visible change that has occurred over the past few hours.
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| Marcello holding Mommy's Finger's |
Today we witnessed the miracle of God’s touch on Manuel and God continues to heal Marcello from his surgeries. Marcello and Manuel are a living testament that God does indeed hear our prayers and even watches over the littlest ones. We praise God that he has allowed both Marcello and Manuel to remain with us and pray for many more day's with them.
Saturday, January 11, 2014
Marcello's Surgery Day
Thursday January 9, 2014
Today, Manuel’s ventilator began to have problems reading the oxygen levels. The respiratory therapists called for a new O2 cell for the machine. The ventilator technitian changed out the cell, but this did not fix the problem. Therefore, a new ventilator was brought in and he was placed on the new machine. This was hard to watch as he had to be placed on a manual pump and there were two respiratory therapists working on keeping him breathing and changing out the equipment. This time the ventilator worked and he was placed back on the ventilator. The remainder of the day Manuel remained stable and Mommy was able to help with Manuel’s hands on tonight (temperature, diaper change, and holding).
This evening, we found out that Pastor Lepley had written a letter on his blog about our experience. We were humbled by his words, and wanted to share with you his letter. To see his letter click here or copy the following URL into a new Internet window: http://onourorigins.wordpress.com/2014/01/09/born-premature-and-patiently-waiting-on-the-lord/
We continue to be amazed at God's healing power and are so grateful that He has afforded us yet another day with them. Continued prayers that God will continue to bestow His healing hands over Marcello and Manuel.
Today, Manuel’s ventilator began to have problems reading the oxygen levels. The respiratory therapists called for a new O2 cell for the machine. The ventilator technitian changed out the cell, but this did not fix the problem. Therefore, a new ventilator was brought in and he was placed on the new machine. This was hard to watch as he had to be placed on a manual pump and there were two respiratory therapists working on keeping him breathing and changing out the equipment. This time the ventilator worked and he was placed back on the ventilator. The remainder of the day Manuel remained stable and Mommy was able to help with Manuel’s hands on tonight (temperature, diaper change, and holding).
We arrived to the NICU a little before 6:30 AM to meet with
Dr. Abraham and his surgical team. Pastor Lepley arrived and we were able to pray over Marcello and Manuel before the
surgical team’s arrival. Once Dr. Abraham arrived, he informed us of the details of the surgery and that the entire procedure was expected to take less than 20
minutes. We signed the consent after our discussion and then we waited in the
family lounge with Pastor Lepley and shared some scripture and discussion.
After 30 minutes, Dr. Abraham came into the lounge and informed us that the
procedure was complete and that Marcello did wonderful during the surgery. The next 24 hours
will be critical for his survival and that he will be closely monitored to
ensure that his little body is accepting the new flow of blood as it will reach
areas of the body that had not previously received the proper flow of blood.
The other issue we have been monitoring with Marcello has been with his stoma. This afternoon, Marcello’s nurse saw what she thought to be discharge from his
stoma and asked Dr. Kokoska to come look at it. Dr. Kokoska came by and
inspected Marcello’s stoma and was happy to see that indeed Marcello’s stoma
had indeed excreted what looked like meconium (poop). He would continue to monitor to ensure that
the stoma indeed was still functioning, but for now we can accept this as a
small victory (VICTORY DANCE EVERYONE!!!).
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| Daddy holding Marcello |
Daddy was allowed to do his first
hands-on with Marcello today and was able to check Marcello’s temperature,
change his diaper (with the help of the nurse) and Daddy was able to hold
Marcello tonight for the first time.
This was such a touching moment for Daddy as Marcello reached out and
tightly held daddy’s fingers in gesture to say “I’m going to be OK daddy.”
Friday, January 10, 2014
25 Weeks
Wednesday January 8, 2014
Today Marcello and Manuel are 25 weeks gestation. We are privileged to have them with us still. Pastor Currao stopped by today to spend some time with mommy and pray over Marcello and Manuel. Afterwards, the wound ostomy nurse came to change Marcello's incision and was a little concerned about the look of the stoma so she made a call to Dr. Kokoska. Dr. Kokoska arrived to inspect Marcello's stoma and found that indeed the stoma had died. Dr Kokoska made the decision to scrap the dead portion of the stoma. He met with us afterwards and informed us that there was concern that the portion he had left behind might close shut or not function. It will be monitored over the next 24 hours to ensure that it was working properly. If there was no discharge, then there was not anything much more that he could do. Marcello was cleared for the PDA Ligation and is scheduled for it to occur in the morning. It is possible that the blood flow can improve around the stoma after the surgery helping to heal the stoma, but this is also dependant on how his body reacts to the surgery. Mommy and daddy are praying for the stoma to work.
Manuel's white blood cell count continued to be high today, so he was not cleared for the PDA Ligation Surgery. He was started on antibiotics to help fight off the potential infection. He had an additional chest x-ray and the Nurse Practitioner thought that his right lung appeared more inflated than it had been before. The team is trying to lower the ventilator settings in attempt to minimize further damage to his right lung.
We continue to hold Marcello and Manuel in prayer. We know that with God anything is possible. We pray that the surgical team has the insight they need in order to have a positive outcome from the surgery. We also pray that Manuel's lung can be healed by God. We are so fortunate to have had another day with our twins and pray for more time with them.
Today Marcello and Manuel are 25 weeks gestation. We are privileged to have them with us still. Pastor Currao stopped by today to spend some time with mommy and pray over Marcello and Manuel. Afterwards, the wound ostomy nurse came to change Marcello's incision and was a little concerned about the look of the stoma so she made a call to Dr. Kokoska. Dr. Kokoska arrived to inspect Marcello's stoma and found that indeed the stoma had died. Dr Kokoska made the decision to scrap the dead portion of the stoma. He met with us afterwards and informed us that there was concern that the portion he had left behind might close shut or not function. It will be monitored over the next 24 hours to ensure that it was working properly. If there was no discharge, then there was not anything much more that he could do. Marcello was cleared for the PDA Ligation and is scheduled for it to occur in the morning. It is possible that the blood flow can improve around the stoma after the surgery helping to heal the stoma, but this is also dependant on how his body reacts to the surgery. Mommy and daddy are praying for the stoma to work.
Manuel's white blood cell count continued to be high today, so he was not cleared for the PDA Ligation Surgery. He was started on antibiotics to help fight off the potential infection. He had an additional chest x-ray and the Nurse Practitioner thought that his right lung appeared more inflated than it had been before. The team is trying to lower the ventilator settings in attempt to minimize further damage to his right lung.
We continue to hold Marcello and Manuel in prayer. We know that with God anything is possible. We pray that the surgical team has the insight they need in order to have a positive outcome from the surgery. We also pray that Manuel's lung can be healed by God. We are so fortunate to have had another day with our twins and pray for more time with them.
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| Manuel Gabriel |
A Quiet Day
Tuesday January 7, 2014
Today Marcello received a visit from Nancy, his wound specialist. She was able to look over his incision and clean it up a bit. She applied some specialized wound gel that will allow the incision to remain moist and aid in the healing process of the wound. She provided insight on the best way to care for Marcello's ostomy bag. The neonatologist was a bit worried about the look of the stoma, so he requested Dr. Kokoska to come inspect the stoma.
Manuel had a relatively stable day today, however his white blood cell count was up a little so they will monitor to see if he will need antibiotics. He continues to remain on both the conventional and the Jet ventilators.
This was our quiet day with both Marcello and Manuel. When we named them we were looking for names that significant meaning to them. When we came across Marcello Cristian we thought it was quite fitting because it actually means "Little Warrior of Christ". Manuel Gabriel's name means "God with us" and "Strong Man of God". So far they have each proven their names to us several times and continue to fight to stay with us.
We are grateful to God that we have them in our lives, even with all the challenges they provide us. Our love for them is so great we continue to lift them up to God in prayer that God can continue to bless them with health and well-being.
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| Marcello Cristian |
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| Manuel Gabriel |
This was our quiet day with both Marcello and Manuel. When we named them we were looking for names that significant meaning to them. When we came across Marcello Cristian we thought it was quite fitting because it actually means "Little Warrior of Christ". Manuel Gabriel's name means "God with us" and "Strong Man of God". So far they have each proven their names to us several times and continue to fight to stay with us.
We are grateful to God that we have them in our lives, even with all the challenges they provide us. Our love for them is so great we continue to lift them up to God in prayer that God can continue to bless them with health and well-being.
A Good Day
Monday January 6, 2014
We entered into the NICU this morning to great news. Marcello had been doing so well with his oxygen levels that they removed the Jet Ventilator from him and now is only on the conventional ventilator.
Manuel had a chest X-ray and it came back with no change to the right lung. He also peed this morning and the nurses were happy to see that. Manuel received his PICC line today and the remaining umbilical lines were removed today.
Today both Marcello and Manuel had cranial ultrasounds done today to ensure that there was no cranial hemorrhaging. We met with the Neoonatologist about the results and she explained that they have what is considered to be a grade 2 hemorrhage. This level of hemorrhage is considered to be acceptable (1-2 grade infants can grow out of it with little to no harm to them. 3-4 grade is more concerning and potentially fatal).
They also had echocardiograms done on their hearts and this confirmed that they each had large PDA's. They looking to have surgery some time this week to correct the PDA's.
Overall the neonatologists and nurse practitioners are happy with their progression and are just going to continue to monitor Manuel's lung.
Today daddy took Manuel's temperature, changed his diaper, and held him for the first time.It was a touching moment for daddy as he could feel just how fragile Manuel's little body is. This was as much enjoyable as it was emotional for daddy as he was able to bond with Manuel. Mommy was able to get the moment on video and we have it down below to share the moment.
We continue to be thankful to God that we have been afforded another day with them and continue to pray that He affords us many many more days.
We entered into the NICU this morning to great news. Marcello had been doing so well with his oxygen levels that they removed the Jet Ventilator from him and now is only on the conventional ventilator.
Manuel had a chest X-ray and it came back with no change to the right lung. He also peed this morning and the nurses were happy to see that. Manuel received his PICC line today and the remaining umbilical lines were removed today.
Today both Marcello and Manuel had cranial ultrasounds done today to ensure that there was no cranial hemorrhaging. We met with the Neoonatologist about the results and she explained that they have what is considered to be a grade 2 hemorrhage. This level of hemorrhage is considered to be acceptable (1-2 grade infants can grow out of it with little to no harm to them. 3-4 grade is more concerning and potentially fatal).
They also had echocardiograms done on their hearts and this confirmed that they each had large PDA's. They looking to have surgery some time this week to correct the PDA's.
Overall the neonatologists and nurse practitioners are happy with their progression and are just going to continue to monitor Manuel's lung.
Today daddy took Manuel's temperature, changed his diaper, and held him for the first time.It was a touching moment for daddy as he could feel just how fragile Manuel's little body is. This was as much enjoyable as it was emotional for daddy as he was able to bond with Manuel. Mommy was able to get the moment on video and we have it down below to share the moment.
We continue to be thankful to God that we have been afforded another day with them and continue to pray that He affords us many many more days.
Daddy holding Manuel
Monday, January 6, 2014
A Nice Surprise
Sunday January 5, 2013
Today when mommy and daddy arrived at the hospital, there was a surprise awaiting us. Nurse Karrie and Nurse Lauren had surprised us with decorating their little cubicles. They made cards with little heart shaped footprints and snowflakes, and had put their footprints and their birth dates in their little bibles.
Manuel continues to have a high urine output and he had an
additional chest x-ray today. The results came back that his right lung was still
hyper-expanded but that it was not worse than it had been. Not the best news, but we
will accept this as a small victory that he is not getting worse. Tomorrow he has an additional head ultrasound and heart echo, so we pray that these come back with improving results.
While mommy and daddy were with Manuel, Marcello was getting checked by his nurse and his oxygen levels began to come down. Mommy walked over and began talking to him. As soon as mommy started talking to Marcello, his oxygen level began to go up and he stabilized. It's amazing how the sound of mommy's voice is so calming to them. They definitely know mommy and love it when mommy talks to them. Marcello had his umbilical line removed and was given a PICC line. He was so cute afterwards laying there holding the PICC in his hand.
Daddy finally felt comfortable enough to check Manuel's temperature. So nurse Lesli let daddy check his temperature tonight. Mommy did the diaper changes and held them tonight because daddy still is not comfortable enough to do it. Daddy might try to help with Manuel's diaper change and holding tomorrow, but is still not comfortable to touch Marcello yet because of his surgery.
God is working miracles with them and we continue to lift them up in prayer to God. Everyday we have with them is a gift from God. We pray that God will heal their little bodies so that they can grow up and be strong men of God. We pray that they can one day tell others of their journey and help others know of God and the power of prayer. We thank everyone for the continued prayers and place Marcello and Manuel in God's hands.
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| Manuel's board |
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| Marcello's board |
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| Daddy checking Manuel's temperature |
While mommy and daddy were with Manuel, Marcello was getting checked by his nurse and his oxygen levels began to come down. Mommy walked over and began talking to him. As soon as mommy started talking to Marcello, his oxygen level began to go up and he stabilized. It's amazing how the sound of mommy's voice is so calming to them. They definitely know mommy and love it when mommy talks to them. Marcello had his umbilical line removed and was given a PICC line. He was so cute afterwards laying there holding the PICC in his hand.
Daddy finally felt comfortable enough to check Manuel's temperature. So nurse Lesli let daddy check his temperature tonight. Mommy did the diaper changes and held them tonight because daddy still is not comfortable enough to do it. Daddy might try to help with Manuel's diaper change and holding tomorrow, but is still not comfortable to touch Marcello yet because of his surgery.
God is working miracles with them and we continue to lift them up in prayer to God. Everyday we have with them is a gift from God. We pray that God will heal their little bodies so that they can grow up and be strong men of God. We pray that they can one day tell others of their journey and help others know of God and the power of prayer. We thank everyone for the continued prayers and place Marcello and Manuel in God's hands.
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| Marcello's Card |
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| Manuel's Card |
Sunday, January 5, 2014
Reality Check
Saturday January 4, 2014
Mommy helped change both Marcello and Manuel's diapers and held them during their linen change. We took video with Mommy and Manuel today as this was the first time that Mommy was able to hold him.
The team meeting was emotional and we are not in the clear with either of them. We actually thought that Manuel was stable and this really caught us off guard. The medical team told us to take and enjoy our time with them as they cannot guarantee life expectancy for either of them. We need to take it hour by hour, day by day, this was hard to hear. Your prayers are being heard and we continue to lift them in prayer that God will heal their little bodies and continue to be with them.
We arrived at the hospital and were told that we would have
a team meeting. We were invited into a small conference room and met with Neonatologist-
Dr. Stutey, Tami (the nurse practitioner) and Marcello and Manuel’s
nurses. We found out that Manuel has
more issues than we had known.
Manuel has a hyper-expansion of the right lung
which means that his right lung is over expanded and he had significant
decreased urine output. If his urine
output doesn’t improve today, then he is at increased risk of kidney failure.
All of these issues are due to his prematurity of 23 weeks. Today he will be
getting an ultrasound of his kidney and echo of his heart to check for
PDA.
We received the results from Manuel's ultrasounds and his renal ultrasound
showed that his kidneys were functioning well. In fact when Mommy helped with his evening diaper change he actually had a full diaper (with lots of urine!). Manuel's echo also came back positive for
a PDA (just like his Brother). So for now all we can do is monitor and pray that it closes on it's own or that the doctors are able to operate to close the hole.
Marcello is still dealing with recovery from surgery. His clotting factors were doing better, and he only received plasma. We are
still closely monitoring him but so far he has remained stable. Dr. Kakaska
came by and looked at him and said that he was slowly improving, not as fast as
he would like, but he was showing signs of improvement. Mommy helped change both Marcello and Manuel's diapers and held them during their linen change. We took video with Mommy and Manuel today as this was the first time that Mommy was able to hold him.
The team meeting was emotional and we are not in the clear with either of them. We actually thought that Manuel was stable and this really caught us off guard. The medical team told us to take and enjoy our time with them as they cannot guarantee life expectancy for either of them. We need to take it hour by hour, day by day, this was hard to hear. Your prayers are being heard and we continue to lift them in prayer that God will heal their little bodies and continue to be with them.
Mommy holding Manuel for the first time
Saturday, January 4, 2014
A Week Old But Many Bumps on the Road
Friday January 3, 2014
DISCLAIMER: You will need a box of tissues to read today's post.
We were awoken today at 3:30 AM by a call from Dr. Stutey (Marcello's Neonatologist). They had been monitoring his stomach and noticed some discoloration that was alarming to them and so they did an x-ray. The x-ray had confirmed that there was air in his stomach. We were called because they were going to discuss with Dr. Kakaska, the Pediatric Surgeon, if surgery would be needed. It was thought that a possible small hole was in the stomach.They would not be certain until Dr Kakaska could read the results and make a determination. Of course, Mommy could not go back to sleep and eventually fell asleep an hour later.
We received the call from Dr Kakaska at 6:30 AM and he felt that our best option was to perform surgery and repair any damage that he might find. We tearily provided our consent for surgery and immediately got dressed and headed out to the hospital to be with him. Dr. Kakaska met with us after the surgery and explained that he had found a hole in Marcello's intestine. He had to remove a small portion of the intestine just above the colon and gave him an ostomy bag. Right now the two critical factors that will be monitored are kidney failure and excessive bleeding. The next few days will continue to be critical to ensure that he is recovering properly from the surgery.
After the surgery was complete and the team was cleaning him up he actually peed. (we will take this as a SMALL victory). Dr. Kakaska was worried about Marcello's clotting factor and that he was not clotting as quickly as he would like to see. Therefore, he is receiving quite a bit of blood and blood products to replace what he had lost in the surgery and his incision site. His respiratory functions are currently stable as well as his blood pressure so those are both good signs.
Manuel remained stable for us today and allowed his Mommy and Daddy to provide their attention to Marcello. He had to get a blood transfusion and his urine output was a little low. It is thought that he also has a PDA, like Marcello, and an ultrasound was ordered to check for the PDA. He also has a renal ultrasound ordered for the morning to ensure that everything else is OK. We had a BIG Milestone today for Manuel, as today he finally pooped (small victories).
Mateo and Macario were allowed to see their brother's today for the first time!!! Marquez was too small to go back to the NICU. They were just amazed at how small they were.and kept saying look how small they are. Both Marcello and Manuel kicked and moved for their brothers as if they were saying hello to them. Mateo and Macario handled the situation pretty well and we hope that one day they will be able to hold them.
Mommy and Daddy are scared. A parent should never receive a call that surgery is needed for your preemie, and today has been such an emotionally draining day for Mommy and Daddy. We are so fortunate to have such a wonderful network of supportive family and friends. The boys received three prayers today from the Hospital Chaplin, Pastor Currao, and Pastor Lepley.
Daddy met a grandfather named Alvin (Moose) who had a grandson also in the NICU and he came up to me this morning out of the blue and said that God placed it in his heart to do something for our boys. He then handed us two children's bibles (one for each of them) and Daddy about lost it in tears. Daddy tries not to show too much emotion but that gester just touched his heart.
We continue to pray for Marcello's recovery and pray that his kidneys continue to function and that his clotting factor's improve. We are so grateful for the prayers that we have received. Right now recovery is in God's hands and we continue to pray for a positive outcome.
DISCLAIMER: You will need a box of tissues to read today's post.
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| Marcello Cristian |
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| Manuel Gabriel |
After the surgery was complete and the team was cleaning him up he actually peed. (we will take this as a SMALL victory). Dr. Kakaska was worried about Marcello's clotting factor and that he was not clotting as quickly as he would like to see. Therefore, he is receiving quite a bit of blood and blood products to replace what he had lost in the surgery and his incision site. His respiratory functions are currently stable as well as his blood pressure so those are both good signs.
Manuel remained stable for us today and allowed his Mommy and Daddy to provide their attention to Marcello. He had to get a blood transfusion and his urine output was a little low. It is thought that he also has a PDA, like Marcello, and an ultrasound was ordered to check for the PDA. He also has a renal ultrasound ordered for the morning to ensure that everything else is OK. We had a BIG Milestone today for Manuel, as today he finally pooped (small victories).
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| Mateo and Macario with Manuel |
Mateo and Macario were allowed to see their brother's today for the first time!!! Marquez was too small to go back to the NICU. They were just amazed at how small they were.and kept saying look how small they are. Both Marcello and Manuel kicked and moved for their brothers as if they were saying hello to them. Mateo and Macario handled the situation pretty well and we hope that one day they will be able to hold them.
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| Macario and Mateo with Marcello |
Daddy met a grandfather named Alvin (Moose) who had a grandson also in the NICU and he came up to me this morning out of the blue and said that God placed it in his heart to do something for our boys. He then handed us two children's bibles (one for each of them) and Daddy about lost it in tears. Daddy tries not to show too much emotion but that gester just touched his heart.
We continue to pray for Marcello's recovery and pray that his kidneys continue to function and that his clotting factor's improve. We are so grateful for the prayers that we have received. Right now recovery is in God's hands and we continue to pray for a positive outcome.
Friday, January 3, 2014
A Mother and Father's Touch
Thursday January 2, 2014
Marcello had to have his vent settings increased a little today and orders for a blood transfusion were made for him. Today he lost a significant amount of fluids and weighed 1 lb 1.5 oz. His evening nurse weighed him three times so we are not really sure if this is an accurate reading for him to lose that much in a day. His bilirubin readings came back today a bit elevated so he was placed back into phototherapy to help bring down his levels.
Manuel's bilirubin readings came back within an acceptable range and so today he was able to come off phototherapy. He also lost a significant amount of weight and weighed in at 1 lb. We are also not sure if this is an accurate reading for his weight because this is a significant weight loss for a single day. He did receive platelets in the evening and continues to be stable in all his vital signs.
Mommy and daddy got a bit of a treat tonight as they were able to open the incubator and allowed us to give them both good night kisses. This was such an emotion experience for both of us to be able to see them from beyond the glass. We continue to lift them in prayer and thank the Lord that we had another day with our twins. We continue to pray that we are allotted many many more days, weeks, moths and even years with them, but also understand that this decision is with the Lord.
We are so thankful for the many prayers that are being said for their health and well-being. We continue our prayers that the Lord will continue to keep watch over them and aid in their progression. This will be a roller coaster and things can change in a heartbeat, so we take the good days and rejoice in them, and prepare ourselves for anything that could come down the road. We praise God that today we were able to give them goodnight kisses.
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| Mommy Kissing Marcello |
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| Daddy kissing Marcello |
Manuel's bilirubin readings came back within an acceptable range and so today he was able to come off phototherapy. He also lost a significant amount of weight and weighed in at 1 lb. We are also not sure if this is an accurate reading for his weight because this is a significant weight loss for a single day. He did receive platelets in the evening and continues to be stable in all his vital signs.
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| Mommy kissing Manuel |
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| Daddy kissing Manuel |
Mommy and daddy got a bit of a treat tonight as they were able to open the incubator and allowed us to give them both good night kisses. This was such an emotion experience for both of us to be able to see them from beyond the glass. We continue to lift them in prayer and thank the Lord that we had another day with our twins. We continue to pray that we are allotted many many more days, weeks, moths and even years with them, but also understand that this decision is with the Lord.
We are so thankful for the many prayers that are being said for their health and well-being. We continue our prayers that the Lord will continue to keep watch over them and aid in their progression. This will be a roller coaster and things can change in a heartbeat, so we take the good days and rejoice in them, and prepare ourselves for anything that could come down the road. We praise God that today we were able to give them goodnight kisses.
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