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.
Friday, January 24, 2014
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.
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
|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!
|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.
|Manuel Tucked in for the Night|
Monday, January 20, 2014
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'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.
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
|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.
|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.
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
|Macario and Mateo with Manuel|
|Macario with Marcello|
|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.
|A Few Get Well Wishes for the Twins|
|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
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.
|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
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).
|Daddy holding Marcello|
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/
Friday, January 10, 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.
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.
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.
Monday, January 6, 2014
|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.
Sunday, January 5, 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.
Saturday, January 4, 2014
DISCLAIMER: You will need a box of tissues to read today's post.
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 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.
|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
|Mommy Kissing Marcello|
|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.
|Mommy kissing Manuel|
|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.