Our sweet angel boy is 2 MONTHS OLD!! He is a great sleeper (especially on mama), he loves his nuk already and he likes when Daddy reads him stories best! Today he is eating 20mL of milk per hour on continuous feeds (through his NG) without any drops in his stats.
November 16, 2013 Saturday
No changes today... so I thought I'd tell you what a typical day looks like for us...
I (Marisa) wake up around 8am to pump and start getting ready for the day and feed the dogs. Andrew will usually sleep until about 9:30 or 10am depending on how late he worked the night before (he usually gets off between midnight and 2am). We have brunch together and pack our lunches for the hospital/work. We drive separately so Andrew can go to work after a short time at the hospital and Marisa can spend the afternoon there. Our time at the hospital is simply just giving Beau snuggles, changing diapers, and we usually read him a story everyday from Marisa's plethora of children's books from the classroom! Andrew will leave the hospital around 12:30 to get home, change and leave the house by 1:30 for work. Marisa will spend the rest of the afternoon and early evening hours at the hospital snuggling Beau, watching TV, reading, playing on FB, and sending a lot of text messages! I head home from the hospital around 6:30 to feed the dogs and let them inside before it's too cold or they've been in the kennel too long. It's hard to say goodbye every night and I pray over Beau and ask the Lord to be his ultimate monitor and protector through the night. The rest of the night I spend doing things around the house like laundry, dishes, grocery shopping, and trying new recipes for my 52 week challenge! http://m52recipes.blogspot.com/ Then it's off to bed to do it all again the next day.
November 17, 2013 Sunday
Beau was taken off his nasal cannula today! He had two short 'episodes' where his oxygen saturation dropped but stimulation was not needed to 'recover'.
November 18, 2013 Monday
Beau's weight today was 6 pounds, 12.8 ounces.... he's getting to 7 pounds slowly but surely. He still has the picc line in his arm incase they were to need it in the future. Now that we're settled back in pediatrics, the next step is for Beau to increase the volume in his feeds and decrease the feeding time so he's not on continuous feeds all day long.
November 19, 2013 Tuesday
Today they began increasing his feeds to 22mL/hour at noon. He is still being fed through his NG tube in his nose. At 7pm they increased them again to 24mL/hour. He had a few desat episodes today that were less than 5 seconds and only down to about 69% and back up into his acceptable range above 75%.
November 20, 2013 Wednesday
They began to bolus feed Beau today. This means that they give him a larger amount of milk at one time and then let his body digest the food for the next 2 hours before feeding again. We also began doing some PO feeding (bottle/by the mouth) today as well. At 2pm we bottle fed and he took 28mL (almost 1 ounce) and again at 4pm he took 16mL. Whatever Beau doesn't take from his allotted feed is then put into his NG tube over 30 minutes. At 6pm tonight they began continuous feeds at 32mL per hour inserted into his tube. His oxygen saturation was hanging down in the 80's... a little lower than normal.
November 21, 2013 Thursday
As mentioned yesterday, Beau's o2 was hanging a little lower than normal and he was having desaturation episodes into the 60's. They did a blood test and his hematocrit was 31 and hemoglobin was 11; he was also looking a little more pale than normal. This means another blood transfusion. He received 45mL of blood (an ounce and a half) over 4 hours this afternoon. They held his feeds from 11am-5pm to give his body a break during the transfusion. He took to the blood very well and there were no issues. At 5pm, he bottle fed 37mL. At 6pm they began continuous feeds for the evening hours at 37mL. At midnight his feeds increased to 40mL an hour and increased again at 6am to 45mL. We started giving Beau some tummy time in his crib on his boppy and he has quite the bobble head! He also rolled over from his tummy to his back two times! Today, Beau weighed 7 POUNDS, 4.4 ounces!!! He has officially DOUBLED his weight since birth!
November 22, 2013 Friday
Today Beau got part 2 of his blood transfusion. The amount of blood he receives total is based on his weight so he is getting another 30mL of blood to make the complete transfusion 75mL. The transfusion went well and he was pretty chill today. We continued to work on PO feeding today. At noon he took 25mL from bottle and the remaining 20mL were inserted into his NG tube. At pm he practiced again and took 45mL... that's an ounce and a half! GO BEAU! They increased his total feeds to 50mL per hour, fed continuously overnight.
November 23, 2013 Saturday
The doctors took out Beau's PICC line today now that his blood transfusions are complete. Today was simply a feeding day! He increased from 60mL overnight to 75mL today. He took 25mL by bottle at 9am for his nurse. His noon feed was NG only. At 4pm he took 60mL (2 ounces) by bottle for me and at 8pm took 63mL. Woohoo! What a strong little man we have! Overnight they did continuous feeds at 37.5mL per hour. His total ounces a day is about 20 / 600mL to reach his goal calories to gain weight.
November 24, 2013 Sunday
Beau's main goal right now was to work on PO feeding in preparation to come home. His stats have been awesome with minimal desaturations since his blood transfusion yesterday. At 8am he took 38mL, at noon he took 60mL, at 4pm he took 37mL, and at 8pm he took 54mL. Any remaining milk to total 75mL is them inserted into his NG tube. This is what the doctors hope will be our daily feeding schedule and then continuous feeding would run from 10pm-6am.
Our night took a turn around 9:30pm when Andrew and I were about to leave the hospital for the night. The nurse tried three times to get Beau's temp and the thermometer was not reading. Eventually after trying three different ones, she got temps of 96.7 and 96.6. The doctors called for our nurse to get a rectal temp as it's more accurate. Beau's temp registered at 94.1 (hypothermia) and nurses put him under heat right away and called for an abdominal X-ray. They ordered the nurses to hold his feeds, start antibiotics, and begin a full work up of blood, urine, and cerebral spinal fluid to check for infection.
I decided I would stay overnight at the hospital so Andrew and I drove home quick for me to get a few overnight things and my own vehicle and rushed back. He had to work tomorrow morning earlier than usual so we decided to make the transition for cars tonight instead of in the morning. When I got back to the hospital it was terrible watching them poke and prod him... It was probably the hardest day for me to watch yet. He just layed in the Panda warmer under the heat lamp while tears filled his eyes and I couldn't cuddle him or anything. :( was so sad.
The resident radiologist looked at the X-ray and said it was showing dilation of colon and intestines. They see a pocket of air in the intestinal walls which suggests NEC (again) which it caused by decreased blood flow to the intestines (caused by heart defect). So we began a repeat of the other two cycles of tummy issues and began bowel rest. They ordered fluids so he's not completely without any nutrition for the next few days.
We of course were so bummed they just took out the PICC line yesterday because now he has to be poked over and over to get the IV in and they go bad so quickly.
November 25, 2013 Monday
Early this morning around 1:30am they put in a scalp IV and ran all those labs that take 48 hours for results. I slept at the hospital and we both got a few hours of sleep. Beau took a big poop around this time after about 12 hours without - ick! I'm only telling you this because it's important farther down!
It took him about 3 hours under the Panda Warmer to get his temp back up to 99.7. Now it's monitoring that closely with regular every other hour "hands on" where the nurses check his vitals.
At 6am this morning they did another abdominal x-ray and there was only one concerning area that had a lot of air but the dilation of the colon and intestines was decreased- this means no pneumatosis or NEC!
At 3pm another X-ray was done and the air bubble looks like it was moving down, clearing out of his body. He had a lower amount of gas in his bowels as they have been sucking everything out through the replogle tube. He will continue antibiotics through the night and they will hold off on feeding as well.
Laura H and baby Isaac came to visit today and Beau was laying in his next. I am standing on his right side and he's facing me. Laura sits up from the chair on the other side of the crib and says, "Is his head supposed to be bleeding?!?!?" Eeek! I quickly grab our nurse to confirm that his IV came out of his scalp when he was wiggling in his 'nest'. The NICU nurses came to put another one in-his arm this time. Thanks Laura H. For your watchful mommy eye!
Andrew and I are pushing the attending pediatriton to have his thyroid checked again and get a consult done with pediatric GI to get a second opinion as this is his third occurrence of tummy issues. Children with Down Syndrom often have a higher chance of getting diabetes and hpothyroidism which is characterized by a low temperature.
Doctors can't confirm if this is a heart related issue or possibly another challenge related to his Trisomy 21. We are hoping and praying they will change the course of action going forward so we can see different results. Andrew and I are preparing our hearts that Beau might stay in the hospital until heart surgery at the end of January. Giving Beau continuous feeds through an NG tube might be the only option to get him to the weight he needs for surgery. The doctor believes that being on an NG tube continuously at home could present a possibility for infection or Beau could asperate on the tube if it were to get pulled out during a feed. The other option would be to get a G-tube which is inserted right into the stomach. The hard part about that is Beau would have to be put under anesthesia and that presents risk with his heart issue. Ultimately, we just have told the doctors we will go ahead with whatever plan keeps Beau gaining weight whether it be in the hospital or at home.
During the day today they held his medications, except antibiotics, and he was put back on the Total Parenteral Nutrition (TPN). Unfortunately one of the antibiotics could not mix with his TPN so they had to put a SECOND IV in his other arm. :(
November 26, 2013 Tuesday
Doctors ordered another KUB (abdominal x-ray) this morning at 4:30am. And there was no evidence of anything wrong! So the doctors have no evidence that this issue was in any related to feeding. If anything, they believe he got "backed up" or there was a blockage of some type which caused all the gas/air in his bowels but then was moved out after his poo blowout early early Monday morning! The Pediatric radiologist also agree with this conclusion. It's WONDERFUL on one hand that nothing was definitively wrong but bad on the other hand that we have no idea why his temp would drop so low so quickly.
Dr. Olson the attending pediatrition, went to talk to the pediatric GI docs today to get a second opinion about Beau's tummy issues. He asked if there were any tests or other indicators but he agreed that the correct course of action is being taken. One thing he did say is that Beau COULD be sent home on continuous feeds and that he has seen it be very effective to get children to surgery. Hmmm.....
They drew some blood for a basic metabolic panel today. They want to restate feeds tomorrow after the 48 hour window has passed. This evening they took blood to test his antibiotics (vancomycin) to make sure they are at therapeutic levels and also took labs for the thyroid panel.
Dr. Alderson (Beau's pediatric cardiologist) said she does NOT want Beau to go home on continuous feeds. The reason being is that it does not teach him what it feels like to be full and his digestive responses are always up and working without every getting a break like a typical person does between meals. She would like to work out a schedule where he get some type of bolus feed but maybe not to the quantity he was receiving before. Dr. Olson said we could work a schedule where he has bolus feeds with 2 hours on and an hour of rest between them. When feeding begins tomorrow they will start at continuous feeds and work their way to full feeds before even trying to bolus feed again. It is crucial that Beau does some type of bottle feeding between now and surgery to continue his sucking skills and muscle movements.
November 27, 2013 Wednesday
All of the 48 hour labs done on Monday morning at 2:00am came back early this morning as normal so that is awesome! Overnight the IV in his left arm went bad and was red and swollen. They called the NICU and allowed them 4 tries to get a new one in and were unsuccessful. :( They discontinued the antibiotics at 4am. His oxygen saturation has been steady in the high 80% and low 90%.
At 5:30am they began feeding Beau again with 5mL an hour and he continues to be on TPN and IV fluids. Essentially every 4 hours they increased another 5ml so at 11am they increased the feed to 10mL/hour, at 3pm to 15mL/hour and at 9pm to 20mL. Today along he worked his way back up to almost full feeds. He had no desats today and is seeming to be handling his feeds well.
The thyroid panel which tested his TSH and free T4 came back with normal limits. His only IV went back again so he had to get a fresh one in his left arm.
They resumed his medications today as well so he is receiving Zantac at 8am and 8pm (antacid), Prilosec at 8am (antacid) and propranalol at 11am (for increased heart function). Beau weighs 3605g = 7 pounds, 15 ounces - almost 8 pounds!!
The Gumperts came to visit us today and Preston got to hold Beau and practice for his baby brother who is coming in January!
November 28, 2013 Thursday Happy Thanksgiving!!
Andrew and I stayed at home this morning and cooked to prepare for a great feast with friends. I headed to the hospital later in the evening to spend a few hours with Beau while Andrew was at home sleeping to go to work at midnight. His feeds are now up to 25mL/hour which is or should be very close to his full feed. He had one desat today but is his o2-sat is steady in the high 80-low 90 range! Beau's weight today was 3455g = 7 pounds, 9.8 ounces - I'm not sure how he lost weight overnight when he started feeding again!
During this season in our lives, I couldn't be more thankful for our Almighty God who continues to have a constant, watchful, protective, healing hand on our sweet boy. Though some days are more challenging and stressful than others, I continue to say thanks to The Lord for blessing us with our little miracle and for the opportunity to build my perseverance, endurance and ultimately my character through this trial....... 2Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, 3because you know that the testing of your faith produces perseverance. 4Let perseverance finish its work so that you may be mature and complete, not lacking anything. James 1. 2-4
Give thanks in all circumstances,
for this is God's will for you.
1 Thessalonians 5.18
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