Beau did awesome overnight without his air cannula and only had one brady event at 0130! Nurse Leah was back with us this morning after a few days off - we love nurse Leah best!! The new NICU resident that will be following Beau for the next few months came to introduce herself - Helen. She mentioned how awesome Beau was doing and that in the coming day they were thinking of moving him out of the NICU and to Peds to continue to feed and grow. Andrew, myself AND our nurse were slightly taken back by this. Lead said most babies have to be 5 days without a brady and do a "car seat" breathing test before leaving. But we figured the doctors know best so we'll wait and see what happens. I'll be honest, I was nervous...
They began adding Vitamin D and iron supplements to his milk and began fortifying it again but with formula this time so it can be continued when he does to home. They are giving him 1/2 tsp to each feed (increased today to 45mL) so he gets 24 calories per feed.
At noon, Andrew did Beau's bottle feed and he took all 20mL. The remaining milk (25mL) is then inserted into his NG tube in his nose and goes directly to his tummy. They are doing the remainder of this feed over 30 minutes as before.
Dr Valotka (not sure how to spell it), the attending neonatologist came over and told us they wanted to move Beau today. WHAT?!?!? She said they were going to put the discharge papers through and as soon as Peds was ready they would move him us. I started to panic as questions raised in my mind. Is he ready? Aren't we moving to fast? He has only been on his air less than a day. He hasn't been 5 days without a brady... oh my. Leah told us the transition to Peds is usually hard and I felt it already... little did I know what was to come.
Andrew and I had to drive home together so he could get to work so I quickly threw an overnight bag together as I can now be by Beau's bedside 24 hours a day if I'd like. I headed back over to the hospital for the discharge from the NICU. :( Once the transfer papers were through we rolled all Beau's belongings and baby crib over to his new room in 20B. We share a room with another little girl so was also a NICU grad. It is the same size room as my post-delivery room but there were two VERY LARGE cribs in it and very little walking space. Beau and Mommy said "bye" to nurse Leah. :(
They immediately checked beau's vital signs and took his weight but Beau was not hooked to any monitors as he was in the NICU. I REALLY began to panic but kept myself together. I asked two different nurses if he should be hooked up to any monitors and they both checked and assured me that it was not written in his orders. Thank goodness I was staying the night! He weighed 2625g = 5 pounds, 12 ounces.
I had to head home from after his 9pm feed to let the dogs out since Andrew and I have to figured out a schedule that best fits with his work and the dogs. I'll be honest, I cried all the way home on the phone with Andrew totally worried about Beau. I could not believe that he was not being put on ANY monitors at all. Did someone forget our baby had two major heart defects and isn't symptom free? Andrew assured me that we would call Dr. Alderson, our pediatric cardiologist in the morning and follow up on that.
I had a terrible night of sleep. My roommate cries often, and I mean often, and her mother stays there until 3am watching TV. I think Andrew and I might have to find a different schedule where I go home to sleep for at least a few hours each night.
Beau's fresh, nasal cannula free, face. He pulled out his NG tube again!
Our family photo with Leah, the nurse who admitted Beau after delivery
and now brought us over to the Pediatric ward.
She said we might be one of the only babies she's ever had who
she was there the birthday and discharge day!
Friday, October 25, 2013
When I "woke" up the next morning, I met all the doctors, residents and nurses taking care of Beau. I found out right away how Dr. Mattingly, another pediatric cardiologist, told the doctors he needed to be hooked back up to his Pulse/Oxygen monitor! PRAISE GOD!!! It wasn't all the monitors but at least two of them and then the nurse comes in and check's Beau's vitals (respiration, blood pressure, heart rate, and temperature) every 4 hours.
His feeds were increased to 50mL and still being fortified with 1/2tsp of formula. He took all 20mL at both of his bottle feeds with me today at 9am and 3pm! They are now weighing him every Monday, Wednesday, Friday (starting Monday).
Our friend Sofia got to meet Beau for the first time today. Sofia also has Tetrology of Fallot (TOF) and was just born two weeks ago. Beau and Sofia are already buddies! Now that we are in our new room we can have unlimited visitors and kids as long as they're healthy.
NEW FAVORITE!!! I took a screen shot of an awesome video of
Beau that he happened to give me a big WINK in!!!
(This was after Mama accidentally pulled out his NG tube!)
Bethany and baby Sofia with Beau and I.
This was such a special visit because our church has been praying for
Baby Beau and Baby Sofia every Wednesday night for months!
Saturday, October 26, 2013
No major changes today. Beau is still having de-sats but that is typical behavior for him right now and nothing too concerning. Again today he took both of his feeds for me at 9am and 3pm so doctors have ordered that he increases his frequency of PO (by bottle) feeds to four times a day!
Beau is dancing Gangnam style!!
<3 Eskimo Kisses <3
Sunday, October 27, 2013
During the day Beau was doing great. He took is PO bottle feeds, was very alert and awake, no de-sats or concerns. At 6 weeks old Beau's weight was 2780g = 6 POUNDS, 2 ounces!!! Getting big!!!
Overnight however, Beau was having desats into the 50's and looking pale...
Monday, October 28, 2013
When I arrived to the hospital around 8:15am, I found out the doctors were going to give Beau another blood transfusion. This time he would receive 30mL of blood over 4 hours. His hematocrit level (packed red blood cells) was 36.9 and a goal for Beau is 40. His hemaglobin was 12.4. Nurse Lead and another nurse came to put an IV into Beau and after four unsuccessful attempts, got another nurse who I call the "IV whisperer" who got it on the 5th try! Whew.. that was a lot of tears!
He received his 9am feed through his NG tube and then the blood transfusion ran from 11:30am-3:30pm.
Beau then missed his noon feed and got a full tummy again at 4pm. They held off on doing any PO feeds today to let his body rest. Beau took the transfusion well and Dr. Mattingly did an echo on his heart after just to check it all out. He saw nothing concerning and assured me that drops in his O2 might be typical behavior for Beau until he has heart surgery. Beau did not received lasix or any diuretic this time as they do not believe fluid retention is a problem.
I found out that babies typically have a drop in their red blood cells around 6 weeks of age but then their bone marrow kicks into gear! But with Beau, because he is being given transfuctions, it is telling the bone marrow it doesn't necessarily need to do it's job.
I found out that babies typically have a drop in their red blood cells around 6 weeks of age but then their bone marrow kicks into gear! But with Beau, because he is being given transfuctions, it is telling the bone marrow it doesn't necessarily need to do it's job.
Today's weight: 2790g = 6 pounds, 2.4 ounces.
The IV was placed in his right foot.
Pulse-Ox monitor and "Baby Lo-Jack" in his left.
Tuesday, October 29, 2013
Oxygen stats were good today and Beau received his second dose of the Synagis Vaccine because it's RSV and flu season. He took 15mL at his 9am PO feed and 20mL at his noon PO feed. At his 9pm feed he only took 5mL. Mama gave Beau a sponge bath for the first time - the nurses had been doing it on overnight shifts up until now. I brought in some decorative pumpkins to take a mini photo shoot for Beau since he might not get newborn photos. The pictures are for Thursday's blog! Overnight his stats stayed stable in the mid 80's and his weight was: 2995 = 6 pounds, 9.6 ounces.
Wakey, Wakey! Sleepy, Sleepy!
Wednesday, October 30, 2013
I got to the hospital this morning to find out the night nurse "forgot" to PO feed him at his 3am. How does this happen? No clue! That's your job! Nobody knew what happened so moving on I guess....
The corpsman (military enlisted medical specialist) did all of Beau's hands on today and I saw no sign of the nurse. This was a little unsettling as the corpsman had almost no clue what he was doing! He tried to hook Beau's feed straight from the syringe pump into his nose tube without the connecting tube that it needs to run through. He also brought me the wrong nipple for Beau's PO feeding two different times. His nurse did come into the room once to help him but did not introduce herself at all and returned to her computer at the desk. Well after being on my soapbox to my mom and sister I decided to talk to the charge nurse who happened to have watched Beau a few days back. I told her what had happened that day starting with his missed PO feed and how I was displeased that his nurse had not introduced herself or supervised the corpsman well. She followed up with my nurse who then came in to introduce herself at 1:30pm - 5 hours after I got to the hospital today. Ugh... no bueno.
Beau's feeds were increased to five times by PO today. He took 12mL by bottle at 9am, 10mL at noon, 10mL at 3pm, and 8ml at 9pm. He seemed very dissatisfied feeding today and very sleepy; we believed that the Synagis shot yesterday took his energy out of him.
He has saturation drops into the 70's today but would get back up without any stimulation.
Today was my due date - Beau is officially 40 weeks gestation!!
Bethany and Sofia came to visit again today.
Thursday, October 31, 2013 Happy Halloween!!!
Beau had a great day taking his feeds!! He took all 20mL by bottle at the 9am, noon, 3pm and 9pm feeding times. Way to go Beau!!
Dr. Olson, the attending pediatrition and Dr. Papacostas, the senior resident came in to speak with me in the early afternoon. It was discovered that Beau's milk was being fortified incorrectly; instead of getting 1/2tsp per feed, he was being given an entire scoop (multiple tablespoons) which has given him excessive weight gain. A typical baby should gain between 20-30g per day and he had gained at least 60g overnight. I also explained to them all the instances from yesterday with the nurse and corpsman. They apologized for the "improper care" and said that they would definitely be following up with the proper nursing staff and will "get to the bottom" of the issues.
The nutritionist came by to evaluate Beau and they increased his bottle feeds to six times a day.
Dr. Olson, the attending pediatrition and Dr. Papacostas, the senior resident came in to speak with me in the early afternoon. It was discovered that Beau's milk was being fortified incorrectly; instead of getting 1/2tsp per feed, he was being given an entire scoop (multiple tablespoons) which has given him excessive weight gain. A typical baby should gain between 20-30g per day and he had gained at least 60g overnight. I also explained to them all the instances from yesterday with the nurse and corpsman. They apologized for the "improper care" and said that they would definitely be following up with the proper nursing staff and will "get to the bottom" of the issues.
The nutritionist came by to evaluate Beau and they increased his bottle feeds to six times a day.
Beau got to meet another miracle baby from our church - Baby Isaac!
I arrived to the hospital at the same time in the morning and got a recap from the previous evening. I usually call around midnight to 1am for an update and then get another one when I arrive. Beau was having de-sats into the 60-70's but would self recover right away.
His morning weight was 3030g = 6 pounds 10.8 ounces.
Dr Mattingly, one of the cardiologists stopped by in the morning to check in and said he had no concerns about the desats as they were all self recovered and that dropping into the 70's might be normal behavior from here on out.
Dr. Alderson, our primary cardiologist came up later in the morning and told me she went back through Beau's Pulse-Ox monitoring records overnight and found a de-sat down to 59% for 6 minutes and nobody responded to it. WHAT?!?!? She told me she believes Beau may have reflux caused by heart pressure on the esophagus and vagus nerve. She wants to start him on Zantac and possibly Prilosec to see if that will help with his de-saturations. She said he will stay on these medications until he has heart surgery. She wants him moved to another room that has more monitoring across from the nurses station.
Well shortly thereafter, the doctors came back to go over what Dr. Alderson had told us and informed us they wanted to move Beau down to the Pediatric Intensive Care Unit (PICU). Dr. A wanted to watch his heart rate as well and have him more closely monitored for the next 48 hours at least. Within an hour or so the nurses helped us move down to floor 3 to the PICU.
We did a 3pm feed by bottle and he took all 20mL. His 6pm bottle was more of a struggle. I had just given him a bath to wake him up and he cried through the whole thing. Then I went to feed him and he was still so fussy. :( He de-sated during his feed down to 45% and so we decided to stop the feed and give the remaining milk by NG tube. Overnight he did great - had no desats from 6pm-11pm. He took his 9pm PO feed great.
Today's Length: 49.5 cm. They will weigh him Mondays and Thursdays while we're in the PICU.
Our new - single - room in the PICU.
Little man in a big bed.
Saturday, November 2, 2013
We arrived at the hospital just before noon in time for his next PO feed. We find out that Beau's oxygen saturation has been dropping all night and went as low as the teens. On my goodness - the lowest I've ever seen it was the 45% yesterday. For the first two hours we were there, he continually had de-sats back to back dropping well below the 50%. Some were almost continuous and others were a few minutes apart dropping as low as to 7. We've never seen Beau have such trouble breathing. It seemed that he was bearing down trying to poop and then he would stop breathing, then causing his o2 stats to drop. He was not self recovering most of the very low drops so nurses and the respiratory therapist had to come in and stimulate him. Their response to his monitors was a vast improvement from up in the Peds ward. We are thankful.
They did a chest/abdomen x-ray including a KUB to check the placement of his NG tube. They did a blood gas test to check his hemoglobin and hematocrit levels.
When results came back the doctor decided to take him off feeds until he seems more stable. They gave him an IV with fluids and Lasix to help eliminate any overload of fluids he may have. His hematocrit and hemoglobin levels came back good. They moved his NG tube 4cm farther down so it is no longer in his stomach but in his duodenum; hopefully this will reduce reflux.
To add onto an already crummy day, the blood pressure cuff also gave him a blister on his foot and took a gauge out of his leg. Poor boy.
It is now about 8pm and he is calm and slept for about 3 hours. Starting at 7pm he began receiving continuous feed. Instead of 60mL over 30 minutes every three hours, he is going to get 60mL over 3 hour which will then begin his next feed, making it continuous. He is no longer on the IV fluids.
Thank you for your prayers. We are lucky to have so many people lifting Beau up to the Great Physician. We continue to trust the Lord with Beau's little body and heart.
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