here<\/span><\/strong><\/a>.<\/p>\nAs 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.<\/p>\n
Sunday 8\/30\/09<\/strong><\/span><\/p>\n\n- MRI was ordered to do a scan of his brain. They are looking for normal brain function.<\/li>\n
- 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\u2019t see T18.<\/li>\n
- He is not sucking and is being fed via feeding tube though his nose.<\/li>\n
- He was given an EEG of his brain and an ECHO of his heart. Results should be back today or Monday.<\/li>\n
- Initial Apgar score was a 6; scored high in heart.\u00a0 His 5 min score was a 9<\/li>\n<\/ul>\n
Tuesday 9\/1\/09<\/strong><\/span><\/p>\n\n- MRI showed that James had little in-uterio strokes early in the pregnancy. It doesn\u2019t look like it caused much long term damage but we will have to just wait and see.<\/li>\n
- Took more blood to check for clotting.<\/li>\n
- EEG results where FINE!\u00a0 ECHO results were FINE!!\u00a0 That means he is not having seizures.<\/li>\n
- Genetics ordered more tests to see if it is a metabolic disorder?<\/li>\n<\/ul>\n
NOTES FROM CONVERSATION WITH {Stacy’s Dad’s cousin}<\/strong><\/span><\/p>\n\n- \n
\n- They talked about how he did have strokes but they are not 100% sure because they happened long ago.<\/li>\n
- Neurologist is going to send the MRI film to Dad’s cousin in Boston so he can look it over and show his colleagues.<\/li>\n
- Think about getting a second opinion maybe from Children\u2019s Memorial<\/li>\n
- They talked about maybe doing a spinal tap in James to look at the spinal fluid that goes to the brain<\/li>\n
- James brain rhythm didn\u2019t look damaged<\/li>\n
- Genetics told Neurologist that she didn\u2019t see anything \u201csyndromish\u201d<\/li>\n
- Babies brains are like plastic, they can repair themselves.<\/li>\n
- Time tells the future!!<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n
Thursday 9\/3\/09<\/strong><\/span><\/p>\n\n- 7:30am phone call from NICU Pediatrician:\n
\n- 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.<\/li>\n<\/ul>\n<\/li>\n
- 9:30am phone call from a nurse:\n
\n- 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<\/li>\n<\/ul>\n<\/li>\n
- Speech did come to see him today we will be awaiting results of that assessment.<\/li>\n
- 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.<\/li>\n
- 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.<\/li>\n<\/ul>\n
Friday 9\/4\/09<\/strong><\/span><\/p>\n\n- Today he was pricked to give blood to test his gases and he flinched and kicked the nurse a bit. He didn\u2019t like that and to us that shows that he has feeling in his limbs and telling us.\u00a0 He was also squeezing Jeff\u2019s finger while getting his blood drawn.<\/li>\n
- Gases came back fine.<\/li>\n
- He also let out cry today. Jeff, the nurse and I were all in shock!!<\/li>\n<\/ul>\n
Saturday 9\/5\/09<\/strong><\/span><\/p>\n\n- 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!<\/li>\n
- Nurse talked about Factor V and if it is Heterozygous or Homozygous.<\/li>\n<\/ul>\n
Sunday 9\/6\/09<\/strong><\/span><\/p>\n\n- \u00a0<\/strong>Today I got to kangaroo him and he seemed to enjoy the feeling of mom\u2019s touch on his body.<\/li>\n
- Got a bath and weighed at night, he is 6lb and 5oz now. Gaining little by little.<\/li>\n
- 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!<\/li>\n<\/ul>\n
Monday 9\/7\/09<\/strong><\/span><\/p>\n\n- 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<\/li>\n
- Reintroducing breast milk, 10cc over an hour.<\/li>\n
- Pediatric Hematologist will talk to us about possibly getting tested for Factor V<\/li>\n<\/ul>\n
Tuesday 9\/8\/09<\/strong><\/span><\/p>\n\n- 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.\u00a0 They ordered an EEG at 9am to see if he was having seizures but no news is good news!\u00a0 Nurse was Sarah.<\/li>\n
- 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.<\/li>\n
- 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.<\/li>\n
- 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.<\/li>\n
- They are looking into maybe reducing his oxygen and maybe trying real air for a bit and see how he does with that.<\/li>\n<\/ul>\n
Wednesday 9\/9\/09<\/strong><\/span><\/p>\n\n- He is off the oxygen!!<\/li>\n
- At night the nurse didn\u2019t 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.<\/li>\n<\/ul>\n
Thursday 9\/10\/09<\/strong><\/span><\/p>\n\n- 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.<\/li>\n
- 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.<\/li>\n
- Our family meeting is Friday @ 8:30am.<\/li>\n
- 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.<\/li>\n
- My dad spoke with his cousin tonight and he said to make sure to touch James\u2019 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.<\/li>\n<\/ul>\n
Friday 9\/11\/09<\/strong><\/span><\/p>\n\n- Family meeting notes:\n
\n- The 2 vessel cord has nothing to do with his situation, neither is the Factor V Leiden or when I had my fever.<\/li>\n
- 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.<\/li>\n
- Tone abnormalities: hypertonic legs (tight) and hypotonic trunk (low)<\/li>\n
- MRI saw damage on the white matter of the brain, the \u201cwires\u201d. The abnormalities are localized to certain areas of the brain and we don\u2019t know what is affected by those abnormalities.<\/li>\n
- They sent blood to test for Lukodystphy; rare by serious disability.<\/li>\n
- His chromosomes came back normal.<\/li>\n
- Palative care would come in to help us with transitions and whatever we would need from the hospital.<\/li>\n<\/ul>\n<\/li>\n
- 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!!<\/li>\n
- Physical Therapist came today as well. She showed me some arm and leg movements to open up his limbs and get him lose.<\/li>\n
- Night nurse said she was going to try to shorten his feeding time from 3 hours to 2 \u00bd.<\/li>\n<\/ul>\n
Saturday 9\/12\/09<\/strong><\/span><\/p>\n\n- They stopped feeding him my milk. He was having difficulty keeping his sats up and food down.<\/li>\n
- Geneticist took more blood and sent it off for lysosomal enzyme testing.<\/li>\n
- Finished his antibiotics @ 10pm.<\/li>\n
- Slept good they said.<\/li>\n<\/ul>\n
Sunday 9\/13\/09<\/strong><\/span><\/p>\n\n- Still on the IV for feedings. Hopefully will try again Monday but I don\u2019t see hope that he will keep it down. He is making so many secretions and is getting suctioned every hour sometimes more than once.<\/li>\n
- 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\u2019t then they will stop the antibiotics.<\/li>\n
- We spoke with nurse and she was saying that since he has no gag reflex we don\u2019t see bottle feeding happening anytime in the future. His future is looking more towards a g-tube every day.<\/li>\n<\/ul>\n
Monday 9\/14\/09<\/strong><\/span><\/p>\n\n- He is on antibiotics: Piperacillin\/Zosyn & Vancomycin<\/li>\n
- Still on Oxygen, very low<\/li>\n
- Started taking Pepcid for his acid reflux<\/li>\n<\/ul>\n
Tuesday 9\/15\/09<\/strong><\/span><\/p>\n\n- Stopped taking the antibiotics.<\/li>\n
- 8am he was off oxygen but back on very low to get him through the night around 8pm.<\/li>\n
- Taking Reglan to help his GI track more quickly and freely.<\/li>\n
- Taking 10ml of breast milk again\u2026 little by little he will hopefully work up a tolerance for it and keep it down.<\/li>\n<\/ul>\n
Wednesday 9\/16\/09<\/strong><\/span><\/p>\n\n- Infectious disease doctor came to look over James and everything looks good.<\/li>\n
- 15ml of milk over 3 hours.<\/li>\n<\/ul>\n
Thursday 9\/17\/09<\/strong><\/span><\/p>\n\n- OT came to see him and work on his swallowing. She was trying to work his throat muscles to strengthen them.<\/li>\n
- 20ml of milk over 3 hours.<\/li>\n<\/ul>\n
Friday 9\/18\/09<\/strong><\/span><\/p>\n\n- Long chain fatty acid test came back normal; NO adrenal leukodystrophy.<\/li>\n
- Organic acid & amino acid tests came back normal.<\/li>\n
- 20ml over 3 hours still.<\/li>\n
- 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.<\/li>\n
- 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.<\/li>\n
- Pepcid – every 12 hours and Reglan- every 6 hours. Keeping 20ml for a while longer don’t want to push him to much.<\/li>\n
- 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.<\/li>\n
- Friday (5pm) they put in a NG (nasogastric) and NJ (nasojejunal) tubes for his feeding. Took a few attempts.<\/li>\n<\/ul>\n
Saturday 9\/19\/09<\/strong><\/span><\/p>\n\n- The NG and NJ tubes are in. He gets his meds via NG and his feeds via NJ.\u00a0 He is getting 25ml of milk over 3 hours.<\/li>\n<\/ul>\n
Sunday 9\/20\/09<\/strong><\/span><\/p>\n\n- He is getting 35ml of milk over 3 hours.<\/li>\n
- 7lbs and 9 oz.<\/li>\n<\/ul>\n
Monday 9\/21\/09<\/strong><\/span><\/p>\n\n- They are going to keep his feeds at 40ml over 3 hours.<\/li>\n
- 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.<\/li>\n
- 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.<\/li>\n
- 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.<\/li>\n
- When we went back at 7:30 pm and he was crying so loud. It was a \u201cgurgle\u201d 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.<\/li>\n<\/ul>\n
Tuesday 9\/22\/09<\/strong><\/span><\/p>\n\n- 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.<\/li>\n
- They stopped the Reglan and bumped his feeds up to 45ml over 3 hours.<\/li>\n
- 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.<\/li>\n
- Going to have a meeting with Geneticist on Thursday about genetic testing that has been done.<\/li>\n
- 7lbs 11oz<\/li>\n
- Took blood for the WCB storage or lysosomal enzyme test and sent it to Geneticist in Philadelphia.<\/li>\n<\/ul>\n
Wednesday 9\/23\/09<\/strong><\/span><\/p>\n\n- 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.<\/li>\n
- Up to 50ml over 3 hours and still off the Reglan.<\/li>\n
- He was fussy today again. I love when he is making noises and wiggling.<\/li>\n
- He has been keeping his saturation levels in the 90\u2019s and when he is on my chest he can sat at 99 or 100 almost always. Something about my chest keeps his levels high.<\/li>\n
- Upper GI is scheduled for Friday. I will find out the time on Thursday when they do their rounds.<\/li>\n<\/ul>\n
Thursday 9\/24\/09<\/strong><\/span><\/p>\n\n- Don\u2019t know the time of the GI for Friday but I will call in the AM to find out.<\/li>\n
- 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.<\/li>\n
- He was crying again today. I picked him up and he quieted it down.<\/li>\n
- Tried to test hearing in the AM and couldn\u2019t so they came back in the afternoon with a diagnostic one and they still couldn\u2019t. His breathing was unregulated and they couldn\u2019t 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!<\/li>\n<\/ul>\n
Friday 9\/25\/09<\/strong><\/span><\/p>\n\n- They upped his feeds to 55ml and back on Reglan.<\/li>\n
- 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.<\/li>\n
- 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.<\/li>\n
- This is not a test to see why he is not swallowing.. This has nothing to do with that function.<\/li>\n
- 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.<\/li>\n
- James is going to be sent to an audiologist when he is released from the NICU.<\/li>\n
- Physical Therapist saw him today and worked him out.<\/li>\n
- At 10:51pm, he was placed on oxygen again and had ANOTHER x-ray to see about infection, it was clear.\u00a0 His saturations were low according to his night nurse.<\/li>\n
- Note:<\/em> I was searching the internet and came across Moebius Syndrome and it sounds like James.<\/li>\n<\/ul>\n
Saturday 9\/26\/09<\/strong><\/span><\/p>\n\n- James\u2019 morning nurse was concerned that his NJ tube was lose because it was measuring at 53 instead of 48 (nose to purple tip).\u00a0 They called for an x-ray and they said it is in place and to continue feeds. (1pm)<\/li>\n
- They wanted James to have continuous feeds, which mean 14ml an hour for 4 hours\u2026 I think that is the calculation.<\/li>\n
- 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.<\/li>\n
- 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.<\/li>\n
- 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.\u00a0 The process started around 8 pm and we didn\u2019t know if it was in place correctly until 11:30 pm.\u00a0 He had 2 more x-rays!<\/li>\n
- He is back on his continuous feeds and will hopefully stay oxygen free.<\/li>\n<\/ul>\n
Sunday 9\/27\/09<\/strong><\/span><\/p>\n\n- He is eating 60ml over 3 hours every 9, 5, & 1 again.<\/li>\n
- He had a great day today! :0)<\/li>\n<\/ul>\n
Monday 9\/28\/09<\/strong><\/span><\/p>\n\n- 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.<\/li>\n<\/ul>\n
Tuesday 9\/30\/09<\/strong><\/span><\/p>\n\n- \u00a0<\/strong>The audiologist called to set up an appointment with me for Monday the 5th<\/sup> @ 2 pm to test him while he is sleeping on my chest.<\/li>\n
- He is also going to be looked over by an orthopedic doctor to look at his spine.<\/li>\n
- He is eating 75ml over an hour!<\/li>\n<\/ul>\n
Wednesday 9\/30\/09<\/strong><\/span><\/p>\n\n- 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.<\/li>\n
- Orthopedic doctor came to see him when I stepped out. I will call him and get report on Thursday<\/li>\n<\/ul>\n
Thursday 10\/1\/09<\/strong><\/span><\/p>\n\n- 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.<\/li>\n
- 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.<\/li>\n
- Geneticist came to talk to me about the tests that another Geneticist wanted to run on James. She didn\u2019t inform me on what they were called; she said if something comes up we will inform you otherwise don\u2019t need to worry yourself. They are DNA tests that would be good info for other pregnancies.<\/li>\n<\/ul>\n
Friday 10\/2\/09<\/strong><\/span><\/p>\n\n- James was sating in the low 60\u2019s for about \u00bd 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.<\/li>\n
- They took the tube out of his nose; he let out a big sneeze and then began sating back up into the 90\u2019s. I am not sure if there was a correlation between the 2.<\/li>\n
- Nurse thinks they will find something refluxing back up but another nurse does not think so.\u00a0 We will just have to wait until Monday to find out. The test was not read on Friday<\/li>\n
- PT and SLP saw him today back to back and he was pooped!!<\/li>\n<\/ul>\n
Saturday 10\/3\/09<\/strong><\/span><\/p>\n