January 16, 2015 "Graduating to Pod G"

Today Rayden graduated to Pod G!! This is the step down pod. The nurses say the G stands for 'going home!' I was super excited to find him all snuggled up in his new pod. Dr. Elton came and said he was pleased with Rayden's alertness. Although I think his front plates are separating, Dr. Elton says that's where they are suppose to be. He says the top plates are still overlapping just a little though. He adjusted the shunt to 2.0.


The new Pod G doctor said she heard the heart murmur and wanted to do an echocardiogram. I told her that issue had already been resolved but she wouldn't budge. Results showed his heart is just fine!!

The only issue for the day came when the speech pathologist came to feed Rayden. He started having desats (low blood oxygen) and bradys (low heart rate) quite a bit so she changed him back to rice cereal. Instead of making it 'honey thick' she did decrease the amount of cereal to 'nectar thick'. He is now getting fortified breast milk (2.5 oz breast milk and 1 tsp. Enfamil) mixed with 12.5ml of rice cereal X2. Feeding is starting to be more of a science experiment to me...

The best part of the day was DADDY IS BACK!! Michael came busting into Pod G looking for Rayden. He was so excited to see him and Rayden seemed happy to see his Daddy too.

January 14-15, 2015 "Field Trip"

Jan. 14- Rayden's head circumference is stable at 37.5cm. He continues to gain weight. Today he weighs 6 lbs. 9 oz. We got lots of good news from the doctors today. Newborn screening came back normal and CSF culture is still negative. Speech pathology came to feed Rayden breast milk mixed with rice cereal. It had to be mixed three times during the feed so Rayden got impatient and angry. They are going to do another swallow study tomorrow to see if he has improved.

I have been taking lots of pictures of Rayden to send to Michael while he's away. This is a selfie of the two of us. He remains awake and alert for an hour after his bottles. Everyone is amazed at how well he is doing. He's more alert than any other baby in our Pod and he's the youngest!

Jan. 15- Rayden's incisions from the last shunt surgery are actually scabbing over. That never happened after the first surgery. The only problem now is his stitches are starting to come out. Look closely at the bottom scar and you can see what looks like fishing line hanging from his head.




Natasha, Rayden's primary nurse, took him on a 'field trip' today to another swallow study. They are trying to see if we can take the rice cereal out of his milk. The study showed little to no reflux/aspiration. He is now allowed to drink just breast milk fortified with Enfamil but will need to use a preemie nipple. I'm fine with that. I am hoping we can eventually drop the Enfamil, but I am VERY relieved that we can stop the rice cereal. I was so concerned that it was going to make him over weight.

January 12-13, 2015 "Bright Eyes"

Jan. 12- It felt strange coming to the hospital alone this morning to see our sweet Baby Rayden. I took several pictures throughout the day and sent them to Michael so he could feel as close as possible. As I talked to Rayden about his Daddy he gave me these big bright eyes. It's my favorite picture of the day. It also shows how AMAZING his head looks. The new shunt must be working.

The doctors decided Rayden could take more bottles by mouth. He has been alternating between tube feeding and bottle feeding. I fed him a back to back bottle today for the first time. He drank every drop and then lay in my lap wide awake for an hour afterwards. He's always been a good baby but I have never seen him this alert. Even the doctors and nurses were amazed. Dr. Elton stated that since Rayden is doing so wonderful today that he must've had some head pressure causing him to feel bad before and not eat.

A new doctor came today and heard Rayden's heart murmur. Then Dr. Sigal Peter-Wohl listened and said it was fine. She said she was not really concerned about it because most preemie babies have them and they just go away in time. I just want to praise God because he knew Rayden didn't need anything else to overcome.

Nanny Linda came this afternoon to spend the week with me. Michael did not want me to be here alone.

Jan. 13- I looked forward to feeding Rayden today but things got a little bothersome after his 5pm bottle. He started acting fussy and then threw the entire bottle up. Milk just flowed out of his mouth!! About 7pm he got real uneasy. I held him against my chest to try to calm his belly-ache. He had several brady's (heart beat drops) and even stopped breathing over and over. His blood pressure was elevated too. The doctor was concerned because his head circumference had increased so she called neuro. At 8pm the nurse checked his stomach contents through his tube to find that he still had a stomach FULL. They decided that he must have a terrible tummy ache.

January 11, 2015 "Don't worry about tomorrow"

Jan. 11- We didn't sleep a wink last night worrying about Rayden. I prayed for God to heal him and bring him back to his bright, alert little self. I can't stand to see him like that. We had decided that Michael could go back to work on Monday, but with this set back we are just not so sure. Michael doesn't want to leave him unstable. We arrived this morning to find that Rayden was taken off the oxygen! Praise God! He is alert and ready to eat! My God is AWESOME!!! Now he has two scars on his head instead of one but I'm sure they will look better soon.

He still has an IV and feeding tube but they did let me start feeding him again. It felt so good to hold him again. He seems to be back to his old self, Praise God!

One of the doctors said she heard a small heart murmur this morning. She said she was going to get a second opinion. I don't understand. The ultrasound technicians always said he had a strong heart. Where did this come from, and why hasn't anyone ever said anything about it? God, please don't let this turn into anything. Rayden is already having to overcome so much.

Thanks to my great friend, Adina, we got some Fanny Cream for Rayden's bottom. We started using this today at his care times and his bottom started looking better by the evening.

My heart was so torn this afternoon. Since Rayden is stable Michael needs to go back to work. He has been with me since Dec. 2. We are so thankful that his job is so understanding and his coworkers are so supportive. Although I knew Michael would be back in 5 days, it broke my heart to see him tell Rayden goodbye. I could not contain my tears. I knew he needed to go back to work, but I wanted him to stay here with us. He didn't want to go either. Watching him drive away was extremely hard. I stayed at the Ronald McDonald house the remainder of the evening washing clothes, pumping, and crying. I felt so alone...

January 10, 2015 "Shunt Surgery #2"

Michael and I arrived early this morning to see Rayden off to surgery. He was already prepared when we arrived. Jennica, one of the nurses, could see I was very upset. She came over and hugged me as I began to cry. Michael and I walked down to the OR with Rayden because we wanted to speak with Dr. Elton before the surgery. He informed us that he would do whatever it takes to remedy this situation. I was so overwhelmed with emotion as I kissed Rayden goodbye and told him I loved him. I couldn't stand watching them take my newborn baby BACK into brain surgery. I cried and cried as Michael hugged me and held my hand as we walked back to the waiting room upstairs. Soon Dr. Elton called with the news. He stated that a shunt had 3 components-an inflow catheter, a valve mechanism, and an outflow catheter. He tested the catheters and thought they were draining correctly. 

Although he didn't see anything wrong with the valve, he decided to replace it anyway. The valve regulates differential pressure and controls flow through the shunt tubing. He reprogrammed the drainage to 2.5 and took a CSF sample to culture for infection. Rayden is on IV antibiotics for 48 hours as a precaution. When we went back to see him I couldn't believe how still he was. He was all stretched out. I noticed he was breathing funny too. He was taking short breaths and then stoping all together for a minute. The nurse said it was a side effect of the anesthesia and would wear off shortly. We waited and waited for him to wake up. We returned from dinner to find that Rayden had oxygen in his nose. I was so upset because he had NEVER needed oxygen, why now? What was going on? He would only open his eyes for a second and had his legs all stretched out. The nurses and the doctors told us that he was just having trouble coming off the anesthesia and should be fine after a while. We were not allowed to hold our baby ALL day. I felt like we had started all over again! 

January 9, 2015 "You've got to be kidding me!!"

Rayden weighs 6 lbs. 1 oz. He is almost back to his birth weight. He passed his hearing screening today! He even drank all 53ml from his new Playtex bottle. All seemed to be going great until 8pm. As Michael and I started his care time I noticed his pillow was covered in CSF AGAIN!!!!! The doctors called the neurosurgeon on call like they always do. As we waited for them to arrive I could hardly contain my tears. I knew this meant surgery again. How could this thing be broken in only 16 days? When the neurosurgeon finally arrived at 10:30pm all the fluid built up under the skin had drained out onto his sheets. He wanted to place another stitch in Rayden's head because he just thought that his incision had opened up. (This is the first time he had seen Rayden) I explained how they have replaced the stitches twice now and how the fluid just continues to pool up under the skin until it pops the stitches out over and over again. I'm no brain surgeon but I'm sure that restitching would not fix the problem. This is the fourth time this week that his incision had leaked. After seeing the pictures of Rayden's pseudomeningocele he agreed. He left to call Dr. Elton. When he returned he stated that Dr. Elton wanted him to adjust the shunt to 1.0 and get consent to perform surgery at 8am. He stated that he was unsure if they would replace, repair, or even have to relocate the shunt all together.

Daddy loves singing silly songs to Rayden. 

January 7, 2015 "Not again, but Praise the Lord!"

We received a a call at 5:30am from Dr. Andrew Heling, the round attending. Rayden's shunt has been leaking terribly. I guess I wasn't overreacting last night. CSF leaked through 2 blankets and several gauze. This is the third time! He told us the neurosurgeon restitched his incision and ordered an MRI to see if the shunt was malfunctioning. They may have to go back to the OR. The nurse started an IV and put him back in an isolet just in case. Michael and I jumped up and flew to the hospital. Although we were just at the Ronald McDonald House 5 minutes away it seemed like an eternity before we could get there to comfort him. They waited for us before they took him down to the MRI. I sat in the room with him while he got the MRI. The technicians were so good with him. They wrapped him in heated blankets that were rolled up all around his body. They gave him his pacifier and some 'toot sweet'. He never even cried. After reading the MRI results, Dr. Elton came to see us. He said the MRI showed that the shunt was functioning well. He decided to adjust the shunt to 1.5 hoping to flush out any protein in the CSF that might be causing a blockage. If it continues to leak fluid he will want to go back in and take the shunt apart to see what's going on. Rayden has a pseudomeningocele, an abnormal collection of CSF contained in a cavity within the soft tissue around the brain. You can see in the picture that fluid is pooling up under the skin where his shunt is located.

Michael and I saw the MRI images of Rayden's brain. We knew it had changed dramatically from what was showing on the ultrasounds when he was in utero. Dr. Elton stated that the minimal brain tissue had now turned into an entire frontal lobe being present and his chiari has shrunk. His brain is filling in as the fluid decreases. A lot of fluid still remains but WOW, Praise the Lord!

January 6, 2015 "Two Weeks Old"

Rayden is continuing to gain weight. He is now 5 lbs. 15 oz. The doctor said when he regains his birthweight we may transition somewhere else. Maybe a private room upstairs. His head circumference remains stable at 35.5cm.

I was feeding Rayden his 8pm bottle when my hand started feeling a little wet again. The round doctors were actually in the room when this happened so they came over and checked. Although they didn't see anything, they decided to call neurology anyway. It really made me wonder if I was just overreacting. Neurology came and said he was fine. This is the second time his shunt has leaked in four days. We don't understand what is going on. Maybe my hand was just sweaty. Maybe I WAS overreacting. He seems to be doing so well. He drank his entire bottle.

Rayden is so loved. Justin and Elizabeth brought him Flick from "A Bugs Life". Justin said Flick's arms were so small that maybe Rayden could hold onto them to do his finger therapy. His brother, Alex, held him today for the first time. It just melted my heart. My baby of 18 years was holding my newborn baby. So weird.

Rayden has to do occupational therapy several times a day on his legs/hips. It is so funny to see him stretch his legs all by himself on the boppy pillow but cries when WE stretch them. He really seems to enjoy sitting on it. Thanks Mrs. Robertson for the pillow.

January 3-5, 2015 "Eating is a problem?"

Jan. 3- Rayden has lost weight today. He is now 5 lbs. 9 oz. His head circumference went up to 35.5cm. He is not feeling himself today. I believe his head is hurting from the restitching last night. I held him up on my shoulder against me today for the first time. I think his stomach is hurting some too. He also started spitting up some because of the new feeding regimen of thickened milk with cereal. He threw up all down my shirt! I don't know if this is going to work or not. He's so used to water based breast milk. He only took about 1/2 the bottle each time again and they had to give him the other 1/2 in his tube. But here again, at least they tube breast milk, not Enfamil. I really want him to drink breast milk because I know how good it is for him. I understand why they are not feeding it to him, but I hope we can go back to full feeds of breast milk soon.

*As you can see in the picture below his head looks a little better. We are still concerned about the plates overlapping on top and the sunk in part in the front. They assure me that it will not always

look like that but I am still worried about the possibility of having 

surgery on his skull plates.
Jan. 4- Rayden has gained a little weight today. Now at 5 lbs. 11.3oz. His head circumference has stayed the same. They even mentioned moving Rayden upstairs to a private room soon because he is doing so well. If he could only get the feeding problem under control.

*I'm not too pleased with his bottom though. It has been red but today it is bleeding!! They have already tried everything they can do here at the hospital. 1-Sensi Care Protective Barrier #3, 2-Thick Moisture Barrier Paste, 3-Adapt Stoma Powder, 4-Barrier Film Prep with Stoma Powder AND cream. Nothing is working!!!!

Jan. 5- Rayden continues to gain weight. He is now at 5 lbs. 14 oz. His head circumference is stable at 35.5cm. Michael and I took a Car Seat Safety course and an Infant CPR course today. The hospital offers them free to NCCC parents. They offer so much to long term parents here. They are always bringing parents food, children's blankets, books or booties. These little things have really made a difference in such gloomy days.

*Dr. Sigal Peter-Wohl, the new round attending, believes there must be a way for Rayden to drink the breast milk. She knows how good it is for him and realizes that we want him to have it. I'm glad she is trying to remedy the situation.

 Rayden is so loved!

January 2, 2015 "Roller Coaster Day!"

Jan. 2- We came in today to find that Rayden had graduated from the isolet to an actual crib!! He has gained to 5 lbs. 11 oz. and head circumference is stable at 35cm. He's even gotten taller; now 18.9 in.
*Gretchin, from neurosurgery, came to look at Rayden's skull plates. She says it looks better but they are still watching.
*Occupational Therapy came to stretch his legs. He is showing signs that it is hurting because he seems to be agitated when she pulls his left leg down. It almost looks like his left leg bends inward instead of down. I hope there isn't anything wrong with his hip. They are going to do a hip ultrasound at 4 weeks of life.

*He had a Modified Barium Swallow Study today. That's where they mix his milk with barium to make it show up on a moving x-ray. It is videotaped so the results can be analyzed in slow-motion later. It showed that he had milk going back up into his nose and he was aspirating some. He WAS protecting his airway although they don't want him to HAVE to do that. The speech pathologist decided to thicken his feed. They are putting him on 2 oz. of Enfamil Premature with 25ml of rice cereal. (Honey Thick) Can you believe they are giving a 10 day old baby rice cereal? I was floored!! Why am I trying to pump breast milk if they are just going to give him Enfamil anyway? They said you can't mix breast milk with rice cereal because it breaks down too quickly and just becomes runny again too fast. They also added a multivitamin with iron to his daily regimen as well. I was able to feed him 1/2 a bottle (1 oz.) with cereal then he just passed out asleep. Apparently sucking a bottle is very hard work!! The remaining 1 oz. of his feed was placed through his feeding tube, but at least it was breast milk.

*As I was feeding Rayden his 8:30pm bottle I started feeling something wet on my hand. I called the nurse, Rena, over to see. Rayden's hair was wet around his neck line. She said he must have been sweating. It wasn't a minute later I felt something wet running down my hand again. I asked Michael to come look and he saw clear liquid dripping from his shunt incision! He quickly asked Rena to come back. She looked with the flashlight, put a gauze over his incision, and ran out the door. A nurse practitioner came in and examined Rayden's head. She said it wasn't CSF, Cerebral Spinal Fluid, but she would call neurosurgery down to see. By the time they arrived Rayden's scar was puffy with fluid underneath. It was pouring yellowish/clear fluid. He said it WAS CSF and that his stitches had popped out. He needed to go back to the OR to get some supplies and then restitch his head. Michael and I waited in the family room. We were so frightened. After the doctor finished the procedure and inclined his crib, Rayden went to sleep. He came in to tell us Rayden was ok and that they were going to keep a closer eye on him. He also said the stitches got loose because when they did the original shunt surgery at birth his head was so large and skin was tight. Now, with his head circumference going down, the skin is not as tight so the stitches are just getting loose. I pray that's all it is. I still don't understand why he has CSF leaking outside of his skull (between the skull and his skin).

 

January 1, 2015 "Happy New Year!"

Jan. 1- Rayden's weight has gone up to 5 lbs. 10 oz. His head circumference is stable at 35cm. After testing his bilirubin one last time they decided he does not have jaundice. I am so glad. He doesn't need one more thing to deal with. The speech lady came today to feed him again. She requested a swallow study for tomorrow to see if he is putting milk in his lungs. Michael and I have a routine. 1-Daddy gets the whipes ready. 2-Mommy changes the diaper. 3-Daddy does Rayden's stretches. 4-Mommy feeds Rayden his bottle.

Photo time!!

  

December 31, 2014 "TAKE THAT SPINA BIFIDA!"

Dec. 31- What a roller coaster! Today Rayden LOST weight! He is at 5 lbs. 8.4 oz. As you can see in the picture his skull plates are still overlapping on the top. The front is coming together but still looks pretty bad. His head circumference is still going down. Today it was 35cm. We are so afraid it is going down too fast causing his plates to overlap. I wish there was something we could do. The last thing we want is for him to have a skull plate surgery!

Rayden's eye exam showed that his optic nerves are swollen but at least all parts are there! No, this doesn't mean his vision is 20/20 but it does show that he has the opportunity to see. The doctor didn't even think he HAD optic nerves much less all the other components! TAKE THAT SPINA BIFIDA!

The nurse catheterized him two more times throughout the night but it showed that he was emptying his bladder just fine so urology said no more cathing!! TAKE THAT SPINA BIFIDA!!

Dr. Alexander, the SB specialist, came to examine Rayden. He said we will not need a special car seat because we had the fetal surgery and his back is healed up nicely. He wants an ortho consult but believes Rayden has feeling down to his knees but maybe not so much in his ankles and feet. He thinks his thigh muscles are strong enough to support braces for walking in the future. That all sounds wonderful until he made the comment "That is if he has the cognitive ability to walk." What do you mean? Rayden WILL have the cognitive ability. His brain WILL fill in his skull and he will show all of you!! God is working miracles and I can't wait for Rayden to prove all of them wrong.

Michael held Rayden for the first time today. He has waited 8 days. He was so afraid of all the chords, monitors, IV's, and his skull plates. He thought he was going to hurt him. Michael started singing to him and rocking back and forth. It was the most precious sight. When I married that wonderful husband of mine, there were some things I knew from the start. He was gentle, thoughtful and wise. I knew he had a big heart. He has always been a wonderful father. I knew he was already in love with Rayden, but watching him hold his new born child left no doubt. It was the most precious sight.  I love seeing Rayden in his Daddy's arms.

Nanny Linda held Rayden for the first time today as well. Rayden is loved by so many.

December 30, 2014 "One Week Old!"

Dec. 30- Rayden is now 1 week old! He has picked up a little weight. He is now at 5 lbs. 10.8 oz. His head circumference came down a little today as well, 35.5cm. We got the MRI results back today. It showed "massive ventriculomegaly." In other words his ventricles have not decompressed but his head size is down. The doctor reported that there was not a lot of brain tissue to see and he was concerned about his mid-line structure (pituitary gland, hypothalamus, dorsal thalamus, optic nerves, etc.). He stated that some things are suggested to be working fine because he is holding his own body temperature, electrolytes are fine, and his sugar looks good. He is concerned that he may need hormone supplements. He scheduled an eye exam for today because he really doesn't think Rayden has any optic nerves.

Urology ordered a voiding cystourethrogram (VCUG), an x-ray of his bladder and lower urinary tract that uses a special form of x-ray called a fluoroscopy and a contrast material. Fluoroscopy makes it possible to see internal organs in motion. When the bladder is filled with and then emptied of a water-soluble contrast material, the radiologist is able to view and assess the anatomy and function of the bladder and lower urinary tract. A valve mechanism prevents urine from backing up into the kidneys as the bladder gets full. In some children, an abnormality in the valve or the ureters allows urine to flow backwards, a condition called VU reflux. In mild cases urine backs up into the lower ureter. In severe cases it can back up into the kidney. If this happens we will have to catheterize Rayden. The urologist ordered Rayden to be catheterized after he voided one time just to see if he was completely emptying his bladder. I held his legs for the nurse to cath him. She only got a little bit of urine, not even enough to note. I pray I don't have to do this to him. It looks so painful and very hard! When the results from his VCUG came back this afternoon we were all relieved. It showed very little back flow. They do want the nurse to cath him 2 more times through the night just to be doubly sure. 

December 29, 2014 "Checking the shunt"

Dec. 29- Rayden weighs 5 lbs. 7 oz. He continues to lose weight but we don't know how much of that is from losing cerebral spinal fluid (CSF). His head circumference continues to go down. It is now 35.5cm. Michael and I are concerned because his plates are starting to overlap. The top of his head looks like mountain peaks, and I can place two fingers int the indention in the front. We asked if the neurosurgeon could come down and talk to us about it. Gretchen Delametter, CPNP-AC, Dr. Elton's Nurse Practitioner, came. She said he was sick and didn't want to bring anything to the baby. He asked her to check the shunt to make sure it

was on the lowest setting. She brought a metal box

with three circular things in it. (See photo of shunt and programmable tools) She placed the clear plastic piece with the oval hole in it over his scalp where the shunt is placed. Then she inserted the piece with all the numbers on it inside that circular piece. The little triangle started turning. It stopped on 2.5. She stated that it was set on the lowest setting. I didn't understand. If it was already on the lowest setting allowing the fluid to drain slowly, then why are his skull plates overlapping? I told Gretchen it must be draining too fast so just turn it off for a while. She said it didn't work that way. There's no off switch! I don't want him to have to have plate surgery later on. She stated they were concerned about it, but were hopeful that his brain will start to fill up the skull and push his plates back out. The last ultrasound we had of Rayden's head in utero showed he had minimal brain tissue and way too much fluid. They scheduled an MRI of his brain at 9:30 tonight. Please God, allow Rayden to form more brain that will fill up the empty space as the CSF is draining and push his skull plates back out.

I was able to bottle feed Rayden 2 times today. It is such a difficult thing because he hasn't really got all the components down pat yet. He will suck and swallow and then forget to breathe. Today he has gotten a little better. He is pacing himself and remembering to stop and breathe. I am concerned though because I hear congestion sounds about half way through the feed. I hope he is not swallowing the milk into his lungs. The speech therapist suggested he continue to try a bottle 2 times a day.

The occupational therapist came today. She stated that one of his feet is better than the other one. She even stated she might get away with splinting that one instead of casting. That sounds good. Rayden also holds one of his thumbs in a lot so his therapy is to hold Mom and Dad's finger to make it push back out.

We came back to the RMH for the evening to find a sweet surprise from Michael's company. A balloon and beautiful flowers. They sure make our room smell fresh.