WARNING: Very Long Post!
James was born full term at 12:30 am on August 29, 2009. The pregnancy was uneventful without any complications or surprises like our previous pregnancy. (Please refer to The First Pregnancy section of Our Story to learn more about the previous pregnancy). We went to all the prenatal doctor appointments and everything about this baby, who we would later name James, appeared to be normal. We thought we were having a normal, healthy baby boy. With the pain and heartbreak of losing Jackson, this was such a relief. It wasn’t until Stacy’s water broke on August 28th that we knew something wasn’t right.
After her water broke, Stacy quickly ran to the bathroom to clean up while I started to get things ready to go to the hospital. As Stacy was cleaning herself up, she noticed what appeared to me meconium in the amniotic fluid. Meconium is a babies first stool and contains materials ingested by the fetus within the womb. It is usually passed in the first few hours or days after birth. When meconium is passed prior to birth, it can make it harder for the baby to breathe because it can clog the airways, irritate the airways and injure the lung tissue, and block surfactant, which is a fatty substance that helps open the lungs after birth. (The preceding information about meconium was taken from https://kidshealth.org/.)
We rushed to the hospital (which was a 30-minute drive) as fast as we could. When we got to the hospital, we were taken to labor and delivery and the nurses started the routine pre-delivery prep work. There was some concern that James wasn’t moving. One of the nurses reached up inside of Stacy to try to attach some probes or something and when she lightly scratched his head, he still didn’t move. She feared that he was in distress and called for an emergency C-section. I can’t explain what we were feeling at that moment. We were in utter disbelief. How did we go from the Jackson pregnancy where we knew something was wrong early on, to this pregnancy where everything seemed normal, only to be thrown this curveball? “Was James okay?” “Please be okay!” “God, please don’t do this!”
When our OBGYN on-call arrived, Stacy was wheeled into delivery to get James out as quickly as possible. At 12:30 am on August 29th, James was brought into the world. I had seen enough movies and hospital shows to know that a baby cries shortly after birth, but James didn’t cry. As we held our breathes waiting for him to cry, we were told that he was alive, but they weren’t sure what was wrong, so they were going to take him to the NICU for further observation and testing. The NICU, or Neonatal Intensive Care Unit, is similar to an Intensive Care Unit (ICU) for adults, but the NICU is for babies. Babies that are born premature, who have had a difficult birth, or who have health problems are sent to the NICU. There they receive around the clock care by a team of nurses, doctors, and specialists. We were fortunate enough that James was born in a hospital with one of the best NICUs in the area. If you want to read more about what a NICU is, please visit this page: https://kidshealth.org/.
Before I continue with our experience in the NICU, I thought I would take a moment to explain what a NICU is, for those of you who don’t know what it is, have never been in one, or happened to stumble across this page because your little one was recently admitted to the NICU and are Googling for information.
What is a NICU?
NICU stands for Neonatal Intensive Care Unit, or sometimes called Newborn Intensive Care Unit. Similar to an Intensive Care Unit (ICU) for adults, a NICU is a special unit a hospital for babies that are born premature or are born with serious medical issues. A NICU has advanced technology and is staffed by highly trained healthcare professionals to give special care to the tiniest of patients.
Do All Hospitals Have NICUs?
Unfortunately, not all hospitals have NICUs. We were lucky that James was born in a hospital with a Level III NICU. If the hospital didn’t have a NICU, he would more than likely have been transferred to a hospital that did, either by ambulance or helicopter. Babies who need intensive care after birth do better if they are born in a hospital with an NICU than if they are moved after birth (https://www.stanfordchildrens.org). For this reason, if you know that your baby has a medical condition before birth, it is recommended to give birth in a hospital that has a NICU, if possible. Of course, medical conditions may not be known prior to birth. We had no idea that James had so many medical issues before he was born.
Are All NICUs the Same?
Before James was born, I had very little knowledge of what a NICU was. We did a Labor and Delivery tour at the hospital during the pregnancy, but the NICU was not included on that tour. About all I knew about a NICU was that preemies went there and were placed in incubators to keep them warm. It wasn’t until after James was admitted to the NICU that I learned more about them and that there are different levels of NICUs. According to the March of Dimes, there are 4 levels of medical care for babies. They also note that babies can move from one level of care to another—to a higher level if they need more care or to a lower level as they get better and are ready to go home.
- Level I – Well Newborn Nursery
- This kind of nursery has a clinical team of health care providers who take care of:
- Babies born on time (at about 40 weeks) who are stable (for example, they can breathe on their own and can maintain their body temperature)
- Babies born at 35 to 37 weeks who are stable
- Babies who are sick or born before 35 weeks, but only until they can be moved to a nursery with a higher level of care
- This kind of nursery has a clinical team of health care providers who take care of:
- Level II—Special Care Nursery
- This kind of nursery has a clinical team who takes care of:
- Babies born at or after 32 weeks who weigh more than 1,500 grams (3.3 pounds). These babies may have some health problems, but they’re not so serious that they need a higher level of care.
- Babies born before 32 weeks or less than 1,500 grams, but only before being moved to a higher level of care.
- Babies who have just gotten out of a newborn intensive care unit (also called NICU) and are growing and doing well before being able to go home.
- Babies who need equipment to help them breathe. These babies should stay in this kind of nursery only for about 24 hours or less; if they need breathing help longer, they should be moved to a higher level of care.
- Level III, NICU
- This kind of nursery has a clinical team who takes care of:
- Babies born before 32 weeks who weigh less than 1,500 grams.
- Babies of any age or weight who are critically ill.
- Babies who need equipment to help them breathe to stay alive.
- This kind of nursery has a clinical team who takes care of:
- This kind of nursery has a clinical team who takes care of:
- Level IV, Regional NICU
- This is the highest level of care for babies. This kind of nursery has a clinical team who takes care of babies who need special surgery for birth defects and other disorders. This nursery has a full range of health care providers, including pediatric subspecialists, specialized nurses and equipment to care for very sick babies.
What’s It Like in the NICU?
Now that I have explained a little bit about what a NICU is, I’ll continue with our experience. The first time we went to see James in the NICU, we were scared and nervous. We didn’t know what to expect. All we knew about James at that point was that he had some issues that were a bit concerning, but didn’t know to what extent. I saw him only for a few seconds after the delivery; Stacy didn’t see him at all. He was quickly tended to by the nurses and whisked away to the NICU, so this would be our first time officially meeting our son. We were escorted down to the NICU from our room on the Labor and Delivery floor by a nurse. When we got to the NICU, we had to sign in and had to be buzzed into the unit. We would have to do this each time we went to visit. Once inside the unit, we were escorted to Pod D. Easy to remember, because it sounds like “potty”. Anyway, the NICU at our hospital had several rooms that they called pods. I’m not sure if each room (or pod) was set up the same way, but Pod D had 10 tiny beds in it, five on each side, with an open walkway down the middle. James’ bed was the first one on the right-hand side of the room.
Once we were in James’ pod, we were greeted by a nurse who was on shift in the pod. She went over the preliminary findings, what the concerns were, which doctors and specialists had seen him already, and which ones they were still waiting for. James would spend the first two months of his life in this room. By the time we were able to take him home, we had a lot of answers as to what was wrong with him. One of the things that Stacy started doing pretty much right away was taking notes in a notebook…doctors names, nurses names, any tests that were ordered, any questions we had, etc. These notes were eventually typed up into a Word document and became the start of what is now James’ medical binder. We refer to as the James Bible. I encourage anyone who has a medically compromised child to start a binder of their own. You can’t remember everything and it will become an invaluable reference. To learn more about James medical binder, click here.
As I mentioned previously, James spent his first two months in the NICU. As a matter of fact, it was exactly two months. He was born on August 29th, and went home on October 29th. As you will see below, a lot happened over those two months, which is why it it a good idea to get a notebook and take notes. I have included all of Stacy’s notes here. Please note that although our documents include doctor’s and nurse’s names, I have removed them here and just use their specialty, for privacy reasons. I don’t expect you to read all of the notes. You can skim through them if you wish. There is a pic of James on his way home, a few final thoughts, and a synopsis of all of the medical issues that were found while James was in the NICU at the bottom of this post, so be sure to scroll all the way to the bottom so you don’t miss anything.
Sunday 8/30/09
- MRI was ordered to do a scan of his brain. They are looking for normal brain function.
- The geneticist came to look at James and she took blood to test for any abnormalities. Test results should be back in a week. In her opinion she doesn’t see T18.
- He is not sucking and is being fed via feeding tube though his nose.
- He was given an EEG of his brain and an ECHO of his heart. Results should be back today or Monday.
- Initial Apgar score was a 6; scored high in heart. His 5 min score was a 9
Tuesday 9/1/09
- MRI showed that James had little in-uterio strokes early in the pregnancy. It doesn’t look like it caused much long term damage but we will have to just wait and see.
- Took more blood to check for clotting.
- EEG results where FINE! ECHO results were FINE!! That means he is not having seizures.
- Genetics ordered more tests to see if it is a metabolic disorder?
NOTES FROM CONVERSATION WITH {Stacy’s Dad’s cousin}
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- They talked about how he did have strokes but they are not 100% sure because they happened long ago.
- Neurologist is going to send the MRI film to Dad’s cousin in Boston so he can look it over and show his colleagues.
- Think about getting a second opinion maybe from Children’s Memorial
- They talked about maybe doing a spinal tap in James to look at the spinal fluid that goes to the brain
- James brain rhythm didn’t look damaged
- Genetics told Neurologist that she didn’t see anything “syndromish”
- Babies brains are like plastic, they can repair themselves.
- Time tells the future!!
Thursday 9/3/09
- 7:30am phone call from NICU Pediatrician:
- James started breathing heavy in the middle of the night so they called for a chest x-ray to see what was going on. They found a little spot on the top of his RT lung that they believe is pneumonia. He was aspirating on his feedings so they stopped feeding and is now being given antibiotics to fight the pneumonia.
- 9:30am phone call from a nurse:
- She called to get permission to insert a PICC line (peripherally inserted central catheter) into his arm that will go into his chest. He will receive IV fluids via line and maybe feedings and antibiotics at a later date. This will be inserted only in the NICU and will be removed once he can tolerate feedings. ** 1:35pm x-ray for PICC placement. It took 3 tries
- Speech did come to see him today we will be awaiting results of that assessment.
- I did speak to NICU to schedule a family meeting with neurology, genetics, and NICU attending. There will be other professionals attending this meeting as well.
- Ophthalmology came to assess him. Eye Doctor dilated his eyes and assessed them. The right eye looks good but the left eye’s optical nerve is not fully developed.
Friday 9/4/09
- Today he was pricked to give blood to test his gases and he flinched and kicked the nurse a bit. He didn’t like that and to us that shows that he has feeling in his limbs and telling us. He was also squeezing Jeff’s finger while getting his blood drawn.
- Gases came back fine.
- He also let out cry today. Jeff, the nurse and I were all in shock!!
Saturday 9/5/09
- Nurse came to talk to us about the spinal tap results. She said the preliminary tests came back fine but the real in dept test is still out. We should have results soon!
- Nurse talked about Factor V and if it is Heterozygous or Homozygous.
Sunday 9/6/09
- Today I got to kangaroo him and he seemed to enjoy the feeling of mom’s touch on his body.
- Got a bath and weighed at night, he is 6lb and 5oz now. Gaining little by little.
- I saw him trying to move his tongue today around 9:50pm. He was also keeping his mouth closed more while he was sleeping. He might be a mouth breather; I know that I would be with all those tubes in his nose!
Monday 9/7/09
- He will receive his CRP tests in the morning. This is used to check for infection. He was high a few days ago that is why he was put on antibiotics, was rechecked on 9/6 and he was low
- Reintroducing breast milk, 10cc over an hour.
- Pediatric Hematologist will talk to us about possibly getting tested for Factor V
Tuesday 9/8/09
- James had a rough night last night. He had 3 or 4 spells where his saturation got low. He was bumped up to 60 in his oxygen to help him get his numbers back down. They ordered an EEG at 9am to see if he was having seizures but no news is good news! Nurse was Sarah.
- SPL came to see him today and worked on his oral motor skills. She told the nurse that they are not going to cut his tongue yet because it might cause his tongue to go backwards into his throat.
- The Occupational Therapist (OT) came in while we were there. She showed us some simple moves to work on when we are there. She was getting him to relaxed he kept letting out little sighs and became very relaxed.
- They are bumping his feeds up to 15cc over a 2 hour span. He is keeping his feeds down and they are coming out into his diaper so we know he is digesting his meals.
- They are looking into maybe reducing his oxygen and maybe trying real air for a bit and see how he does with that.
Wednesday 9/9/09
- He is off the oxygen!!
- At night the nurse didn’t clean out his tube to see how much residual came back up. She also ALMOST gave him 50ml instead of 15 because she thought the nurse before her said 50. I caught it before he got too much.
Thursday 9/10/09
- Still getting 15ml of milk but this time over a span of 3 hours. The overnight nurse said that she was suctioning him a little bit more than usual and some of it was milk.
- I did speak with the charge nurse about the incident with milk and she said she will speak to that nurse and not place her with him anymore.
- Our family meeting is Friday @ 8:30am.
- Speech came today, missed her AGAIN! I think I will have to place a call to her and make sure that our paths do cross and I can learn some stuff from her.
- My dad spoke with his cousin tonight and he said to make sure to touch James’ legs, arms, face, body and do that for about 10 minutes about 3-4 times a day. Make sure he knows that these are his body parts and this is how they move.
Friday 9/11/09
- Family meeting notes:
- The 2 vessel cord has nothing to do with his situation, neither is the Factor V Leiden or when I had my fever.
- The lack of movement when he was inside probably means that he might not be able to move on his own later on in life. We will have to wait and see.
- Tone abnormalities: hypertonic legs (tight) and hypotonic trunk (low)
- MRI saw damage on the white matter of the brain, the “wires”. The abnormalities are localized to certain areas of the brain and we don’t know what is affected by those abnormalities.
- They sent blood to test for Lukodystphy; rare by serious disability.
- His chromosomes came back normal.
- Palative care would come in to help us with transitions and whatever we would need from the hospital.
- Speech Language Pathologist came in to work with him. I got to see how so strokes his cheek while he is eating to stimulate the face muscles and associate them with eating. She also strokes his lips and then goes into his mouth the strokes the roof of his mouth. Today when she did that, he closed his lips around her finger and moved his tongue a little bit. WHOO HOO!!
- Physical Therapist came today as well. She showed me some arm and leg movements to open up his limbs and get him lose.
- Night nurse said she was going to try to shorten his feeding time from 3 hours to 2 ½.
Saturday 9/12/09
- They stopped feeding him my milk. He was having difficulty keeping his sats up and food down.
- Geneticist took more blood and sent it off for lysosomal enzyme testing.
- Finished his antibiotics @ 10pm.
- Slept good they said.
Sunday 9/13/09
- Still on the IV for feedings. Hopefully will try again Monday but I don’t see hope that he will keep it down. He is making so many secretions and is getting suctioned every hour sometimes more than once.
- They did a chest x-ray to see about the pneumonia and it came back cloudy so they are giving him antibiotics again. They also took blood to test (CRP) and if they see an infection they will continue the antibiotics, if they don’t then they will stop the antibiotics.
- We spoke with nurse and she was saying that since he has no gag reflex we don’t see bottle feeding happening anytime in the future. His future is looking more towards a g-tube every day.
Monday 9/14/09
- He is on antibiotics: Piperacillin/Zosyn & Vancomycin
- Still on Oxygen, very low
- Started taking Pepcid for his acid reflux
Tuesday 9/15/09
- Stopped taking the antibiotics.
- 8am he was off oxygen but back on very low to get him through the night around 8pm.
- Taking Reglan to help his GI track more quickly and freely.
- Taking 10ml of breast milk again… little by little he will hopefully work up a tolerance for it and keep it down.
Wednesday 9/16/09
- Infectious disease doctor came to look over James and everything looks good.
- 15ml of milk over 3 hours.
Thursday 9/17/09
- OT came to see him and work on his swallowing. She was trying to work his throat muscles to strengthen them.
- 20ml of milk over 3 hours.
Friday 9/18/09
- Long chain fatty acid test came back normal; NO adrenal leukodystrophy.
- Organic acid & amino acid tests came back normal.
- 20ml over 3 hours still.
- Speech Language Pathologist came to work with his oral motor. She created a great deal of secretions and you could tell he was working on clearing them by himself a little bit. He did need to be suctioned but he was trying.
- Physical Therapist came and showed me more PT moves while he is lying on his belly. She will come back with pictures and mini write up on what to do.
- Pepcid – every 12 hours and Reglan- every 6 hours. Keeping 20ml for a while longer don’t want to push him to much.
- Monday they are sending more blood to run a lysosomal enzyme test and the microarray test. These are deeper chromosome tests, non specific. Could take 4 weeks but she is on the team that does the tests so as soon as she knows she will tell us.
- Friday (5pm) they put in a NG (nasogastric) and NJ (nasojejunal) tubes for his feeding. Took a few attempts.
Saturday 9/19/09
- The NG and NJ tubes are in. He gets his meds via NG and his feeds via NJ. He is getting 25ml of milk over 3 hours.
Sunday 9/20/09
- He is getting 35ml of milk over 3 hours.
- 7lbs and 9 oz.
Monday 9/21/09
- They are going to keep his feeds at 40ml over 3 hours.
- There was talk over rounds about stopping the Raglan for 3 days and perform an upper GI on Friday to see where how much acid is in his stomach and how much is refluxing.
- Once they get the results of the upper GI they will discuss performing a Fundoplication to keep the acid down. Jeff and I are not sure if we want to do this or not. We will have to talk it over with a GI doc.
- They also want to put in a G-tube in. Jeff and I will be trained on how to feed via tube and how to keep it clean and everything.
- When we went back at 7:30 pm and he was crying so loud. It was a “gurgle” cry because of the secretions but he was screaming. I picked him up and he calmed down but it took several minutes of bouncing, whispering to him and rubbing his back.
Tuesday 9/22/09
- He was crying again when I got there with my mother. She heard him making his noises. I picked him up again and he stopped crying.
- They stopped the Reglan and bumped his feeds up to 45ml over 3 hours.
- PT came by and dropped off several exercises for me to do when I am sitting there. He is becoming a lot more limber and allowing me to work his legs and arms. There is some stiffness in his legs but they are becoming loose when I start working with him.
- Going to have a meeting with Geneticist on Thursday about genetic testing that has been done.
- 7lbs 11oz
- Took blood for the WCB storage or lysosomal enzyme test and sent it to Geneticist in Philadelphia.
Wednesday 9/23/09
- Today he had his hearing screened. She came at a bad time when he was eating. There was too much electric interference in the room and it was messing up the hearing machine and his feeding machine. She will come back at 8am when he is not eating and see what she can get from him. They can try up to 5 times when they are in the NICU.
- Up to 50ml over 3 hours and still off the Reglan.
- He was fussy today again. I love when he is making noises and wiggling.
- He has been keeping his saturation levels in the 90’s and when he is on my chest he can sat at 99 or 100 almost always. Something about my chest keeps his levels high.
- Upper GI is scheduled for Friday. I will find out the time on Thursday when they do their rounds.
Thursday 9/24/09
- Don’t know the time of the GI for Friday but I will call in the AM to find out.
- Spoke with Geneticist today. She confirmed that they sent out the blood on Tuesday. She also confirmed that he does not have adrenal leukodystrophy and probably not any kind. She measured his head and length. He is growing and she was pleased to see that.
- He was crying again today. I picked him up and he quieted it down.
- Tried to test hearing in the AM and couldn’t so they came back in the afternoon with a diagnostic one and they still couldn’t. His breathing was unregulated and they couldn’t get a good reading. They will try another day. She did mention to nurse that he might need to be sedated to get it done, who knows!
Friday 9/25/09
- They upped his feeds to 55ml and back on Reglan.
- The upper GI showed no reflux. NICU Pediatrician is going to talk with the NICU team and decide what is the best route to go as far as long term feedings. I am thinking a G tube and no fundo surgery.
- The reason for the upper GI is to see if there is an obstructions or twists in his GI tract; non-stricture- narrowing… he has no obstructions. This will help later on if he learns to mouth feed there will be nothing that would cause food or formula to go into the lungs and aspirate.
- This is not a test to see why he is not swallowing.. This has nothing to do with that function.
- I asked Leah about a swallow study and she mentioned that is up to the SLP and if they think James would be a good candidate for that. Nurse mentioned to me that in order to be part of a swallow study the child usually needs to be actively sucking or trying to suck.
- James is going to be sent to an audiologist when he is released from the NICU.
- Physical Therapist saw him today and worked him out.
- At 10:51pm, he was placed on oxygen again and had ANOTHER x-ray to see about infection, it was clear. His saturations were low according to his night nurse.
- Note: I was searching the internet and came across Moebius Syndrome and it sounds like James.
Saturday 9/26/09
- James’ morning nurse was concerned that his NJ tube was lose because it was measuring at 53 instead of 48 (nose to purple tip). They called for an x-ray and they said it is in place and to continue feeds. (1pm)
- They wanted James to have continuous feeds, which mean 14ml an hour for 4 hours… I think that is the calculation.
- 4pm back on oxygen and off of food. His saturation levels kept dropping. The docs and nurse think that the NJ tube is in place but not far enough.
- A surgeon came in, Pediatric General Surgeon, to talk to us about a procedure they are going to do on Monday, a PH Probe, it will check for acid reflux over a 24 hour period. They will look over those results, speak with us on Wednesday and he could have his G-tube in place on Friday.
- When we came back at 7 pm, he was off oxygen, the NJ and NG tubes were pulled and Robin was about to try to place the NJ tube again. The process started around 8 pm and we didn’t know if it was in place correctly until 11:30 pm. He had 2 more x-rays!
- He is back on his continuous feeds and will hopefully stay oxygen free.
Sunday 9/27/09
- He is eating 60ml over 3 hours every 9, 5, & 1 again.
- He had a great day today! :0)
Monday 9/28/09
- GI doctor came to speak with me about the PH Probe. He has to be off the Regland and Pepcid in order to place it. Hopefully it will be placed on Wednesday.
Tuesday 9/30/09
- The audiologist called to set up an appointment with me for Monday the 5th @ 2 pm to test him while he is sleeping on my chest.
- He is also going to be looked over by an orthopedic doctor to look at his spine.
- He is eating 75ml over an hour!
Wednesday 9/30/09
- Probe was not placed today. They will place it at the bedside sometime after 11 am. They will look over the results and set up a meeting early next week.
- Orthopedic doctor came to see him when I stepped out. I will call him and get report on Thursday
Thursday 10/1/09
- Probe placed at noon and will be taken out at noon Friday. They will love over results by the end of the day and hopefully have a family meeting on Monday and surgery on Wednesday.
- Orthopedic doctor got a hold of me and went over his observations. He said that James has hemivertebra (T10) also known as congenital scoliosis. He said there is nothing to worry about right now and to have another x-ray sometime between 6-12 months.
- Geneticist came to talk to me about the tests that another Geneticist wanted to run on James. She didn’t inform me on what they were called; she said if something comes up we will inform you otherwise don’t need to worry yourself. They are DNA tests that would be good info for other pregnancies.
Friday 10/2/09
- James was sating in the low 60’s for about ½ hour. He had about 3 spells that they had to use a bit of air flow to wake him back up. He was not taking enough big breaths.
- They took the tube out of his nose; he let out a big sneeze and then began sating back up into the 90’s. I am not sure if there was a correlation between the 2.
- Nurse thinks they will find something refluxing back up but another nurse does not think so. We will just have to wait until Monday to find out. The test was not read on Friday
- PT and SLP saw him today back to back and he was pooped!!
Saturday 10/3/09
- NICU Pediatrician said we should have a meeting Tuesday of next week hopefully surgery shortly after that. He was also telling us that there is no rush on having this surgery that is why it takes time.
- Back on his Pepcid and Regland.
- Nurse feels that an ENT should look at James and that there are things that can help his secretions. There is medicine that can help, or putting in a trach tube to release the fluids. She will mention it to morning nurse when she sees her in the morning and I will mention it as well.
Sunday 10/4/09
- The PH Probe was not read yet. Hopefully it will be read on Monday and we can schedule our meeting later this week.
Monday 10/5/09
- He is up to 80ml
- The ENT came to see James today. He fished a scope down his nose and looked at his nose and throat. He listened at his chest and heard some congestion. Everything structurally is good. Dr. was concerned that James did not cry during the procedure. That has something to do with this neurological impairments and him not being to feel discomfort or pain.
- The blood tests were drawn up today by nurse; the microarray test and the DNA test ( Alcardi-goutieres) genetic testing.
- PH Probe results came back and he has 11% reflux. Average or normal is between 5-7%.
Tuesday 10/6/09
- He is up to 85ml
- He turned his head when I came in to see him earlier. Mom was on one side of the crib and I was on the other and said “hello buddy”.
- Family meeting Wednesday 10/7/09 @ 1 pm with genetics, surgeon, and GI.
- He was awake for most of the day, eyes open and mouth closed.
Wednesday 10/7/09
- Family meeting today:
- She spoke to us about placing a g-tube into his belly along with a fundoplication. This would be a one time surgery and is not reversible. The fundoplication grows with him and will allow him to eat by mouth if he ever does. It will keep the acid from coming up and possibly burning his esophagus and cause more damage. After surgery he will be on a ventilator and pain meds for a few days. They will begin feeding him probably a day or so afterwards.
- This is a big decision and we can make it now or wait a week but I think we are leaning towards during this surgery Friday.
Thursday 10/8/09
- Stopped Reglan & Pepcid
Friday 10/9/09
- He had his surgery today. It was scheduled for 11:45 am but he didn’t go down until 1:45 pm and they said it was a 2 hour surgery but he didn’t get back upstairs until 5 pm!
- Pediatric General Surgeon said everything went great! They can start to use the tube probably Sunday or Monday.
- He also had his hearing checked when he came back because he was “under” and it didn’t really work. They got a preliminary test done and it shows that there is a loss but the more intense test that can show how much loss, he was moving. They said they would try again but we might just have to get him tested when he leaves the hospital.
- I called nurse at night and she said that he is doing great. He has calmed down and finally fell asleep. He will be on morphine for 48 hours and on a ventilator for 24 hours.
Saturday 10/10/09
- We got there around 3:30 pm to find him with nothing on at all!! No more tubes or ventilator!! He is still using his PICC line for fluids.
- His circumcision looks good. We just have to keep ointment on it when we change his diaper. We are hoping that it just heals while he is in the hospital and we don’t have to deal with it at home.
- He got his bed back when we went back at night. Nurse got him all settled in and I got to hold him in my arms while she was setting up his bed. He is getting to be a heavy one! My arm was starting to fall asleep a little bit.
Sunday 10/11/09
- The resident called us this morning around 10 am to tell us that they are going to start to use his g-tube to feed him Pedialyte. If everything goes in smooth they will start milk later today or Monday.
- He has taken 20-30ml of Pedialyte and for his 35ml he will be on breast milk…Woo Hoo!! They will increase by 5 with every feeding (every 4 hours) until he reaches 85ml.
Monday 10/12/09
- He should be at full feeds by 5 pm Tuesday!
- IV lipids and vitamins are done; he is on clear fluids, hyperol for a day or so. Once liquids are done he can get his PICC line out.
- They are going to try Robinul to decrease secretions later this week. His secretions are a lot less!
- Lysomal Enzyme were NORMAL!
Tuesday 10/13/09
- I got to the NICU and nurse was telling me that she had to give him a ½ a dose of morphine because he was very tense. He loosened up after that.
- Physical Therapists came by to work him. We worked on his neck and shoulders. After she was finished she wanted us to put him on his left side.
- I left James around 3:15 for break… around 4:30 I went to change him and I noticed his pillow was wet. I just assumed that he urinated on his bed but when I was changing him I noticed he had milk coming out of his g-tube site. We called the surgeon to come down. I waited until 5:15 and then left. When we came back around 7:45 the surgeon still didn’t arrive and James has not eaten since 1 pm. I was looking at his g-tube site and there was some old blood. I spoke with his nurse and she called the doc again to look at it. The surgical residents came and said the g-tube looks good and just decrease feeds. He is on 20ml overnight and we will see what happens in the morning. We need his g-tube to heal before we put to much milk on his belly.
Wednesday 10/14/09
- We received a phone call at 2:30 am (NICU Pediatrician) that they think James had seizures. He was given an EEG and seizure meds, which knocked him out. The doctors say that he will spring back once his body is use to the meds. He was given Ativan at 2:30 am and then Phenobarbital, every 12 hours.
- I will hopefully speak to Neurologist Thursday about what she saw and why didn’t any of the other EEG’s show seizures. I did speak with Dad’s cousin and he told me that it is a snap shot of his brain at that time and he might have been having these all along but we just didn’t catch them before. The meds will help him he said and this is the least of the worries with this kiddo.
Thursday 10/15/09
- Neurologist came by to speak with me about what she saw on the EEG from Wednesday morning. She said that she is 95% sure it was a seizure because of his movements and how the Ativan helped instantly. I did ask her a few questions:
- How long would he be on the Phenobarbital? As along as we think he needs to be. He will come in for a check up in a few months and we will check his levels and give him another EEG.
- Side effects of medication? Drowsy and maybe slow learning as he gets older.
- He had a spell last night with nurse. He dipped down into the 60’s and she couldn’t get him out of hit with gentle shaking and repositioning. She also wrote that she suctioned him and it was not working. They gave him Ativan thinking it was a seizure but that didn’t work so she bagged him. He had to be on oxygen form 5 am till 10 am. He was gasping for breath, they were thinking it was an obstruction in his throat from secretions.
Friday 10/16/09
- Off Oxygen as of 10 am
- Eating 80-90ml of milk over 2 hours, he seems to be handling it with no leakage. Pediatric General Surgeon came by to look at his g-tube and she said it looks great.
- Spoke with Social Worker about getting the ball rolling as far as setting up home health care and discharging him. We will have to do “care by parent” for a night or two before he comes home.
- ENT came by and looked him over. He has some fluid in his ears, I was not sure of what we are going to do about that. I asked and didn’t really get a straight answer. He is too young for tubes in his ears but it could have something to do with why he didn’t pass his hearing exams. He also said that James needs to be spell free for a few weeks before we can safely send him home. If he keeps having spells, we will have to discuss a trach or medication, but the medication might dry up the secretions but it might also dry him out. Not sure if we want to try that just yet.
Saturday 10/17/09
- He is on his maintenance dose of Phenobarbital and will be given this medication at 9 am and 9 pm at night via g-tube.
Sunday 10/18/09
- He is starting a smaller dose of Robinul to dry out the secretions…1.5ml every 8 hours.
- Still on 90ml over 2 hours.
Wednesday 10/21/09
- 100ml over 2 hours; his weight should have given him 110 but we decided on 100.
- Note: no Ferrell bag was used today.
- Home health came by to inform me that we will be getting our equipment on Monday to get trained on. She will show me how to use his feeding pump on Friday.
Thursday 10/22/09
- 110ml over 2 hours
- 2 leaks today. He was laying on me while eating and it leaked. There is nothing to be concerned about because the tube is still in place.
- Great SLP and PT sessions today!!!
Friday 10/23/09
- PICC line was taken out.
Wednesday 10/28/09
- G-tube sprung a leak, Pediatric General Surgeon put in his button.
- EEG again so see how his brain looks before heading home Thursday. She saw some spikes and upped his dose a little. He is taking 2.6 now.
Thursday 10/29/09
- He came home!!
- Phenobarbital: 20MG/5ML
- Robinul: .1MG/ML
Final Thoughts
The nurses in the NICU were fantastic. Many of his regular nurses follow him on Facebook to keep up to date on how he’s doing. That’s how much they care about their patients.
If you didn’t read all of the notes above, which I’m sure most of you didn’t, one thing we had to do prior to being discharged from the NICU was to do what they call “Care by Parent”. This is where you spend 1 or 2 nights in more of a private room within the NICU with your child. It’s kind of setup like a bedroom at home and includes any equipment you would have at home to care for your child. This experience gives the parents an opportunity to care for the child overnight without nurses, but also have nurses available for any questions or problems. Stacy was with James pretty much every day so she knew everything that was involved with taking care of James, but I found it helpful. After two months, I was ready to get my family home, but I was nervous at the same time. In the NICU, James was cared for around-the-clock by nurses, and now Stacy and I were going to be his sole caregivers. “Hope we don’t screw this up!” The “Care by Parent” helped ease some of that nervousness and show that we got this. At least we think we do. Bringing a “normal” baby home for the first time is an adjustment, but bringing a baby home with medical challenges is going to be an even bigger adjustment. By the time we finally got to take him home on October 29th, 2009, this is what we knew about James:
- He had an in utero stroke during the 1st trimester of pregnancy.
- He has no suck/swallow reflex so he was unable to take breast milk or formula from a bottle or clear his own secretions from his nose or throat.
- They originally inserted a feeding tube through his nose to his stomach as a way to feed him. He later had a surgery to insert a g-tube directly into his stomach.
- Because he was unable to clear his own secretions, James required frequent suctioning to clear his airways.
- James has Factor V Leiden blood clotting disorder.
- The optic nerve in his left eye never fully developed so he has vision issues.
- He doesn’t blink.
- He has a chromosome disorder called 22q11.2 duplication which means he has an extra copy of a small piece of chromosome 22.
- He had reflux and had Fundoplication surgery while in the NICU to prevent this reflux.
- He has quadriplegic cerebral palsy, which affects all 4 limbs.
- He has scoliosis, which is a sideways curvature of the spine.
- He has a seizure disorder.