Gifts for Grant

Grant's Story ❤️

As I sit here with my sweet boy, I am overwhelmed by the outpouring of love and support for my family. (I am working on responding and thanking everyone individually.) This experience is reminding me how truly wonderful people can be and has taught me so many valuable lessons.

After having time to process I have decided to come on here and share our story in a little more detail. I will try and stick to the facts since recalling this experience is extremely emotional.

On September 28, I had two seizures that were thought to be the result of eclampsia. The cause of these seizures is still unknown. I was hospitalized and Grant was delivered at 26 weeks and 6 days via emergency c-section. I do not remember giving birth and have a very hazy recollection of the first time I saw him. I was put on a 24 hour magnesium drip shortly after I saw him. He was put on a ventilator and we were told he had a defect in his heart.

One of the arteries in his heart, the PDA did not close and they would treat him with medication to try and close it. The function of the PDA in utero is to allow oxygenated blood from the placenta to bypass the lungs. Once a baby begins to breathe on their own this artery closes and blood begins to travel through the lungs to be oxygenated. With the PDA open blood was not being circulated through the lungs properly. Because of this defect Grant was intubated and on a very high amount of oxygen. This can be problematic because it can cause permanent damage to the lungs and eyes, and in some cases lead to permanent intubation (a tracheotomy) and blindness.

I was released from the hospital on October 2nd . I was advised by my OB that I should not drive for six weeks because I was at risk for having another “eclamptic seizure”. Things returned to semi-normal. The only reason I can say this is because I have been able to process some of what has happened. During that time, nothing felt normal. Coming home from the hospital when you are still supposed to be pregnant is a mix of emotions I am still struggling to put into words.

Chris went back to work, friends and family graciously stepped up to help with the kids, and even though I was unable to drive I made it to the hospital every day. I am forever grateful to everyone who brought me back and forth to the hospital, especially my father in law. I will forever cherish this time we got to spend together.

I thought this was going to be the hardest it was going to get. I was so sure that Grant would respond to the medication and that his PDA would close. This would be the worst of it. Then on Tuesday October 17th, we received the call that after two rounds of medication, Grant's PDA was still wide open.

This meant we were heading to New Orleans and he was scheduled to leave on Thursday. This gave us one day, Wednesday, to get things ready to go and take care of some essentials: me holding Grant for the first time, Grant’s baptism, booking a hotel, packing, mobilizing family to help with the big kids, and trying to hold it together.

We headed out on Thursday. The flight team coming to take your premature infant away is another experience I cannot yet talk about. I cannot tell you what time we left but it was daylight. Chris and I saw him off and headed to New Orleans.

Grant was taken by helicopter to Ochsner Baptist. On October 20th a Piccolo device was placed in his heart using a catheter. The procedure was successful and on October 20th, Saturday, Grant took his second helicopter ride and returned to Baton Rouge. This was super exciting because we thought that we would be there until Sunday or Monday!

Once we returned to Baton Rouge we had another period where Chris went back to work. We had help with the kids and I was able to spend more time at the NICU.

Grant recovered from the piccolo procedure quickly. He was extubated on October 27th, and placed on non-invasive ventilation (NIV). At the time he was almost 31 gestational weeks, 4 weeks old, and weighed less than four pounds. This was the first time I was able to see him without any apparatus on his face. I got one picture of him before they put the nasal cannula on.

Halloween was a mix of emotions but the nurses at Baton Rouge General made sure I had plenty of pictures of Grant and I even got to see him in some of his outfits.

On November 1st, Baton Rouge General switched doctor groups. The new group that came in redid all of the initial testing on the babies when they took over. This included a head ultrasound. It was shortly after this we were told that Grant had Periventricular Leukomalacia (PVL). It is a type of brain injury that primarily affects premature infants. The condition involves damage to the white matter of the brain, particularly in the periventricular region, which is near the fluid-filled spaces (ventricles) in the brain.The rug was pulled out from under us again. We were told that on his initial head ultrasound there were no signs of any bleeding or brain abnormalities so to hear he had a brain injury was shocking.

We saw the ultrasound and the damage was mostly on the right side with no midline shifts. A cyst was found on his right frontal lobe as well. We were told that he may have some left sided weakness but the damage was minimal so there was a chance we would see no symptoms of the damage.

On November 9th I was cleared to start driving again. This made life a lot easier and I was able to drive myself to see Grant and on November 10th he was moved from an isolet to a crib! November 12th Grant was able to try the bouncer seat and I was given the clear to hold him every day! Until this day I was only able to hold him if he was having a good day and seemed like he would tolerate it.

Grant turned 7 weeks old on November 16th, and made it into the four pound club! He was 33 gestational weeks and still 7 weeks away from his due date. On November 19th he was taken off the NIV and moved to a CPAP!

The looming diagnosis of PVL and what that could mean was always on my mind, but I knew that whatever obstacles Grant faced we would be able to overcome. A few days later Grant’s head began to look a little larger than normal. Doctors began measuring it and ordered a head ultrasound for the day after Thanksgiving.

Thanksgiving was our last "normal" day. I am so thankful that I was able to spend it with my family and had a wonderful visit with Grant. Chris was able to hold Grant for the first time.

The day after Thanksgiving when I arrived for my visit I was told that Grant's PVL had gotten worse, more tissue loss and a midline shift were now visible and he would need to be transferred to a level 4 NICU. Around 7 pm the flight crew arrived to take Grant to Children's Hospital. They told us we would not be coming back to Baton Rouge until Grant was released because they did not have anyone here equipped to handle Grant's condition.

This flight was different from the first two. We knew Grant would be in New Orleans until his discharge date and we would have to figure out a way for me to be with him. Along the way every practitioner emphasized the importance of babies being with their mothers and encouraged me to stay at the bedside as much as I could.

When Grant arrived at Children's Hospital that Friday he was tucked in and monitored until Monday when he was seen by the neurosurgeon. Being at a level 4 NICU is another experience that I am working up the courage to share about. During this time we were staying with family in New Orleans about ten minutes from the hospital.

Grant was seen by a neurosurgeon on Monday November 27th. We were told that he had hydrocephalus caused by two brain hemorrhages, grades 3 and 4, and he would need a VP shunt. This is a device that has a tube into the ventricle of the brain, connected to a shunt that drains the fluid into another tube that runs from the shunt into the peritoneal cavity of the abdomen. We were told that they needed to do this surgery as soon as possible and he was put on the schedule for the next day.

Tuesday November 28th was a blurry emotional day. Once again I was overwhelmed by the outpouring of love and support for our son. About an hour and a half into the surgery, we received a call from the neurosurgeon. He told us that when he opened up Grant’s brain he found a very severe brain infection in the ventricles. His CSF, which is supposed to be a clear thin liquid, was cloudy and full of debris. They placed a reservoir in his head with a tube into his brain that they could use to drain excess fluid while the infection healed. After this surgery Grant had a very hard time coming out of the anesthesia and remained intubated.

The bacteria that Grant had required 21 days of negative cultures before they would operate again so I thought we were just in for a long wait, then shunt surgery. After 5 days of antibiotics, Grant's cultures were still coming back positive so they decided to operate again. On December 5 a procedure was done to wash out his brain with an antibiotic rinse and replace the reservoir.

Sometime after his first surgeries a decision was made to put a PICC line in since they could no longer find a good vein for his antibiotic and with 21 days of antibiotics they needed permanent access. The first attempt to put the PICC line in failed (they tried 4 times). Then on the second attempt on their fourth try Grant kicked his little leg and the PICC slid into the correct position.

On December 8th Grant made it into the 6 pound club and was extubated! He was placed on bubble CPAP and once again, I thought we were in for some more waiting then shunt surgery.

On December 10th I had another seizure and had to leave New Orleans to go back to Baton Rouge. My wings were clipped again and even though I could not drive, I still managed to make it to New Orleans every day while I was home.

Two days after I “moved back” home, Grant’s PICC line failed and they scheduled him for another surgery to place a central line. During this surgery, they also repaired two inguinal hernias and an umbilical hernia. This surgery happened on December 13th and went very well. The NICU also had a very special visitor that day, and Santa gave gifts to each baby on the unit.

Grant made it to seven pounds on December 18th. It was around this time we were told that Grant would be scheduled for surgery sometime in the middle or end of January.

On December 19th I got a room at the Ronald McDonald house. This allowed me to stay close to Grant and be there to comfort him during his time in the NICU. I had heard about the Ronald McDonald house when Grant had his first procedure in New Orleans.

I cannot tell you what this organization has given me and the place in my heart that it will forever hold. I have met so many amazing people being here and they have given me nothing but strength, hope and knowledge.

It was not long after arriving here that I met a mother who was here from California for hyperbaric treatment for her son. He had a noxious brain injury and they were trying to recover some of his brain activity and motor function. This sparked my interest in hyperbaric oxygen treatment and I began down the rabbit hole. I also began seeing this young boy heal. The progress he has made in such a short amount of time is remarkable. I cannot share anymore details because I have not asked permission to tell their story.

During this time they were weaning Grant off the CPAP machine and he was switched to a nasal cannula. This meant he was no longer receiving pressurized air and was cleared to try taking a bottle and breastfeeding. December 21 Grant turned 12 weeks old and was able to try breastfeeding for the first time. He did so great. He also was cleared by the infectious disease team and all that was left to do was finish the antibiotics and shunt surgery.

On December 22, Grant was given his first bottle and mama had her first breakdown. Due to a miscommunication, I was not there when the speech therapist gave Grant his first bottle. Every first is so much different in the NICU. For example, Grant got his first “haircut” during his first surgery. The surgeon saved some of his hair for me in a biohazard bag.

On December 24th I hitched a ride back to Baton Rouge for Christmas Eve. Chris and the big kids had to stay in Baton Rouge when I moved into the Ronald McDonald house because Elise was fighting a cold. This trip home was by far the hardest, even though I knew we would all be loading up and heading down the next day.

Santa came and we did Christmas, then after stopping by my mom’s house we all headed to New Orleans and be together as a family again. That afternoon, Grant finished his first full bottle, it was only his fifth attempt. When babies first are transitioned to bottles in the NICU they start with one a day then move up from there. The rest of the feedings are still given through a feeding tube.

December 27th was Grant’s original due date and then on December 28th he turned three months old. He progressed quicker than anyone expected and moved up to two bottles a day. He was also placed on a diuretic to help heal his lungs and take him off respiratory support.

New Year's Eve was a quiet one for us. We climbed to the top of the hospital parking garage with the kids to see if we could see some fireworks. There were a few we could see but the kids were not very interested. Elise was also allowed to see Grant for the second time. She saw him once when we dropped off milk in Baton Rouge. Most NICU’s have pretty strict visitation policies when it comes to kids.

On January 2nd they moved Grant to 6 feeds a day by mouth. This meant he was only getting two feedings through his feeding tube! The next day, when I went to the NICU, Grant was breathing room air. They also moved him to all feedings by bottle or breast and were able to take the nasal cannula and G-tube out. His poor little cheeks were so red and inflamed where the nasal cannula stickers were on his face.

We had our first appointment with Dr. Harch on January 5th. He runs Harch Hyperbarics and is one of the leading researchers in the field of hyperbaric oxygen therapy (HBOT). I cannot say enough good things about this man. He gave us a lot of clarity and information about the brain injuries Grant sustained, his prognosis, and the healing possibilities of hyperbaric treatment.

On January 6th, Grant turned 100 days old. He quickly became a favorite in the NICU. He is such an easy baby and is content as long as he is fed, dry and tucked in. I guess you could say he is the typical male. It was also around this time he began to associate me with food. I always timed my morning stretch to be there at bottle time. Each time I would pick him up he would start looking around and smacking his lips.

As his little personality developed, leaving and being away got harder and harder. Luckily Chris was holding it down with the big kids, and they were getting used to me coming and going throughout the day. During the early days, leaving would cause huge tantrums with lots of tears.The hospital is walking distance from the Ronald McDonald house so I could come and go multiple times a day.

During this entire period the only true moments of peace I got were when I was interacting with my other children. I could not imagine doing this as a first time parent. The nights I spent alone were the hardest. I am so grateful to everyone who was there for me during that time. I tried to use my downtime to connect with friends and family and had some very great, meaningful conversations.

On Tuesday, January 9th we met with the neurosurgeon and were told that Grant would be ready for surgery on Thursday January 11th. We were still expecting him to have surgery closer to the end of January and had been told January 28th as a tentative surgery date.

Thursday, January 11th was a blur. The surgery time got moved three times. I was able to carry him down to the OR this time. I did not think they would let me do this but felt the urge to ask and surprisingly they did not have any objections, only a few eye rolls. Luckily, I did not see this. I was tuned into Grant.

On Friday, I was told that Grant would be able to go home over the weekend. We had none of our baby supplies and thought he would be in the hospital through Tuesday or Wednesday. Dr. Harch moved Grant’s intake appointment from Friday January 19th, to Tuesday the 16th so he could begin HBOT right away. The plan was made for him to come “home” on Sunday. We were able to get a referral from Dr. Harch to stay at the Ronald McDonald House through Grant’s treatment.

Staying close is important because it is very taxing on the person going into the tank with the patient. Because of my seizures and the possible benefit HBOT could have for me, Chris and I decided that I would be going in with Grant.

Saturday, Chris went to get supplies from Baton Rouge and I enjoyed some time with the big kids. Once Chris got back I went back to stay with Grant and he got everything ready for the littlest Matheny to join us at the RMH. Grant passed his carseat test with flying colors and we were given the official all clear to leave on Sunday..

Sunday was the first time my family was all together, in the waiting room of a NICU. Chris carried the carseat, I carried Grant, and we all walked back to the RMH as a family. This is where I will leave the story as I have completely run out of time to finish right now. It has taken me much longer to document this than expected. I will be updating more about his HBOT treatment as it progresses but we have already seen amazing results.

If you have stuck with the story this long I appreciate you taking the time to read our story. If you are a religious person please say a prayer tonight for all the little NICU babies. They are the hardest little fighters I have ever seen.

This is an image of Grant's brain. As you can see there is a tremendous amount of white matter missing. The large black areas are where the brain tissue is missing.