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Challenge: NICU Parenting

Graham’s 101 Days in the NICU - A Gram at a Time

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My wife and I were over-the-moon, preparing to be first time parents. We had our baby shower and diaper parties, hosted a gender reveal, and researched like crazy to prepare for our son’s welcoming into our world. Little did we know, Graham would enter on his own time. At 24 weeks, 6 days, and only 1lb 14oz, our beautiful baby boy started his 101-day journey in the NICU.


During his stay, I tried to keep little notes as often as I could. Like many other families, our roller coaster through the NICU was frought with so many ups and downs. Below, I’ll post the majority of my NICU “journal.” I hope it can show some families in need that no matter how bleak and terrifying the day is, your baby is the strongest little fighter you’ll ever meet. Nearly 13 months later, Graham is excelling; he’s a miracle, as are all NICU graduates!


Graham's NICU Journey

Tuesday, October 11, 2016

Yesterday, Monday morning, we had a perfect, routine checkup.

Today, Tuesday morning, Lorretta suddenly developed severe, rhythmic lower abdominal pain. We went to TTWHC to discover Lorretta was fully dilated. The doctor explained that her cervix was thin, and couldn't support the mounting pressure in her uterus. This is natural, nothing we/she could have done without knowing.

After a rapid transfer to AOMC L&D, Graham Mather Slater joined us at 0845. Lorretta has been recovering well, performed like a rockstar at natural delivery with no meds. Made it look easy, just like she does everything else.

Graham has a long road ahead. He's on a special ventilator, due to his preemie status. He's been responding well overall, and has been weening down the settings. The first couple days haven't been without challenges, however. There have been so many highs and lows, with a long road ahead.

Gruver's gave us Willow Tree angel.

Wednesday 10/12

Good. Little tired, got up every 2-3 hours for feeding and vitals and labs, but we're okay. Graham had one period where his pco2 rose, but was quickly remedied. He's good right now. Today will just be a big day. Maybe another dose of surfactant. They put him under a lamp to help with bilirubin levels.

Was a pretty drastic afternoon. Graham developed a pneumothorax, due to his rigid, premature lungs. They tried a decompression, didn't work, so they put in a chest tube.

Chest tube is good, reduced the pneumo. He's "stable" again. Literally just taking it minute at a time. Moving around, grabbing our fingers and playing with the wires. Other lung looks okay. Because he was so little, his lungs weren't fully developed and compliant, so they're a little rigid. They gave surfactant to help, but that caused the pneumo.

Thursday 10/13

We got some sleep. Lorretta went down for a report. She's feeling okay, just achey and crampy. They said Graham had a good night, oxygen levels were weened, down to 22%. Skin color is better. He will need a blood transfusion soon, due to the blood he's lost from the chest tube procedures and lab draws.

Oscillator ventilator on lowest setting, receiving room air (oxygen at 21%, what we breathe). Sats and perfusion are good. Hoping to go on regular ventilator soon. Heart rate has been fine. Had one poor blood gas, fixed with altered settings. He's getting a new set of 3 antibiotics for different things, and potentially another medicine to boost his WBC. He'll start a blood transfusion in a bit, to replenish blood lost during the chest tube debacle and from labs. The chest tube is clamped to see if the pneumo repeats; if no air accumulates and everything heals properly, tube may come out in a couple days. So hoping the pneumothorax is fixed, no reactions to meds and blood transfusion, and no brain bleeds. 🙏🏼

They just switched Graham off of the oscillator to a regular ventilator and he remained stable. Pneumo looks to have closed per the last X-ray. Chest tube will most likely be out by tmrw. Antibiotics went okay, blood transfusion is about 1/2 done, no reaction noted. Had one drop in SpO2 for a minute, but corrected itself.

AOMC Nursing students donated lunch to us today.

Melissa and church gave us shawl.

Friday 10/14

Night was good, they lowered the settings on the ventilator, still at room air. Vitals stayed stable. Chest x-ray this morning, and if the pneumo is still resolved, chest tube comes out. 72 hour head ultrasound is today, evaluating for brain bleed. Praying for no bleed. Off of 2 antibiotics, passed 48 hours of negative cultures. Will maybe start feeding today; we've been doing colostrum swabs for the past few days, and he's getting tpn/lipids/d5w for nourishment still. Transfusion went fine.

Graham peed on Lorretta this morning while she was changing him. 😂

Fed Graham for first time via feeding tube. And he pooped. New ventilator acclimating well, good blood gases. Still waiting for chest tube to be removed (will be this afternoon) and for the head ultrasound.

Chest tube is out - stitched and bandaged up, will monitor closely tonight for certain indicators (drop in sats), will do a follow up chest X-ray tmrw. HEAD ULTRASOUND SHOWED NO BLEED! Thanks for the prayers. Huge news. Will do another at day 7ish, but the highest risk is in first few days. We weighed him (got to hold him), lost a little bit, but that's expected in the first few days. We've fed him 3 times now, seems to be digesting alright.

Saturday 10/15

Graham had a good night. De-sat'd a couple times, and there's a little accumulation of air on his right side that they're watching, but no intervention planned as of yet. They're mimicking conditions in the womb so he relaxes and grows. He's slowly adjusting to his new feedings; digestion is sluggish, but working. They took off his "sunglasses," he's out of the bilirubin light. Just swaddled up now, sleeping. He's 4 days old. 😍

Sunday 10/16

Graham had an okay night. They've had to adjust the settings on the ventilator a couple times; he's de-sat'd a couple times. After some suction and O2, he goes back up. His right upper lobe in his lung has reopened. Still positioned on his left side to help. He's not digesting things quickly, so they've adjusted his feedings to continuous care (0.3ml of milk over an hour continuously v. 1ml bolus every 3 hours). Umbilical lines coming out today, PICC line going in.

We're good. Baby Graham is okay, just having a tough time positioning himself to keep his oxygen levels up and his digestion is still really slow. Likes to stress daddy out already. Should be getting a PICC line tonight (supposed to have started around 2000, waiting for a call to see how it went.) Praying that goes well, and hoping that they can use the preferential #1.9 catheter. Chest X-ray to follow to verify the line is where it's needed, and will also verify lung expansion (last one was good). Blood gases have been okay. Bilirubin was up a little again, so he earned himself a trip to the "beach" again - under the artificial sunlight lamp.

As of 2150, PICC line went in fine. They did use the #1.9 cath, position will change a bit, but verified with X-ray. Chest looks a little hazy (expected), but nothing dire indicated at this time. They bumped him up on O2, mostly due to him sleeping / under anesthesia. Graham is amazing, a little fighter, and I can't wait to have him home. We finally went through some shower stuff tonight, and got some of his new toys and clothes put away. Lorretta started a "power-pump" regiment, and had been doing really well with her milk production (TMI, but I'm really proud of her.)

Monday 10/17

1110

Graham continued with the rising and falling SpO2 during the night, which is nerve-wracking, but overall expected. He does well on his belly; he maintains his levels better, and may even help with getting his digestion started. He's not digesting anything, so they're going to try a few other things and see. Still not a main priority at this time, he's still getting nourishment in other ways. PICC line is fine. They put a 24G IV in, which they'll use for a second blood transfusion. The transfusion is necessary to replace blood they've been taking for labs and gases. His H&H (hematocrit and hemoglobin) is fine, they're just trying to stay ahead. Lungs seem to be picking up well, no indications of additional pneumos, and they've expanded fully (no collapsing / overexpansion like before). He's got hair all over the place! His hairy back reminds me of a little gorilla. He normally would've lost most of it during the 3rd tri, but for now, it's helping keep him warm. The girls in the NICU call him Thor. Bilirubin levels were good, so his sunglasses are off and we can see his little eyes when he opens them.

Second transfusion successful. He seems stressful on his back / side, but does well with tummy time.

Tuesday 10/18

My first day back. Lorretta's off for at least a couple more days.

Graham started digesting the colostrum from the continuous feed last night / this morning. This is great; if he can get the nutrients from Lorretta's milk and the other nourishment they're giving him, it can only help. He still does well on his tummy. Up and down on sats, requiring minute calibration of the ventilator, but still in the expected realm. Graham is a week old. 😘😁

2200

Graham had a good day. He's still dipping with sats, but again, to be expected (still no less nerve-wracking). His UAC line came out; now they'll check blood gases by pricking his little heel. His day 7 head ultrasound showed no bleeds! This is great, as the risk drops pretty dramatically after. He's tolerated feedings for nearly 24 hours now. Lorretta loves both kinds of lactation cookies Kasey made, so everyone's eating yummy stuff except me. 😛 Graham has also gained some weight the past couple days too! I love when he opens his little eyes - his forehead scrunches up and he looks so surprised that he can see things.

Wednesday 10/19

0630

Graham had a good night. He continues to gain a little weight. He's sprawled out, looking pretty comfortable.

Minus a couple drops in SpO2, Graham did great today. Lorretta got to hold him for the first time, with a two hour kangaroo care session. It was so great and immensely therapeutic, no doubt for both of them. My turn tomorrow! He tolerates diaper changes, heel pricks for ABGs, and all other tosses and turns like a champ. They bumped up his feedings too; he's receiving 1mL colostrum an hour for 3 hours, with an hour in between. Eating = growing! When we left, he was resting on his belly with his little diapered butt lifted in the air. In related news, we got a chest freezer to accommodate our surplus of breast milk.

Thursday 10/20

0800

Graham had a good night. They weened down his ventilator settings a little bit. Feedings are going great. Lots and lots of sleep! I get to do kangaroo care tonight! Only thing on the books today is a blood panel.

David Sr. had a syncopal episode in NICU today; elevated WBCs, hypotension.

Holding my son was the best thing I've ever felt. I felt love, pride, protective... he's amazing. He did great, no issues. He nestled his hand into my chest hair and held on so delicately. Then he pulled his legs up, and rested with his little butt in the air. Nurses said I was the only father to have shaved a "bonding patch" out of their chest hair.

Friday 10/21

2030

Graham's doing well. They are detecting a heart murmur, but that's normal; with a baby his age, the atrium haven't fully developed their septum yet. His sutures and dressing from the chest tube are out, site looks good. Feedings are up to 2.5mL each hour, for 3 hours, off one. Peep was lowered, O2 lowered. He loves belly time. Due to Graham being tuckered out from his procedure earlier, we forewent kangaroo care.

Saturday 10/22

0900

Graham had a regular morning (per him).

1700

Later in the day, they noticed some abnormalities with his bowels. We noticed (after his feeding) his abdomen was slightly distended.) A couple sections of GI are swollen and oddly looped. This may be an indication of possible infection / inactive tissue. Prayers needed for a negative culture. He's acting normal / appropriate (not sick), but may have underlying issues. He's had two rounds of antibiotics so far. Next X-ray at 2000. We're at Brad and Erica's wedding. The nurses assure us to have an enjoyable evening, but it's supremely difficult. Prayers for our little boy.

Sunday 10/23

Graham's X-rays look a lot better. There are no air pockets, and his abdomen isn't distended. He'll continue on the series of antibiotics for a few days. Feedings have been halted for the moment. He's also receiving another transfusion today, which was halfway through when we stopped in, going well. He's very active today, with his eyes open. Sats are up and down, but he corrects on his own, with no changes on the vent.

Monday 10/24

0930

Graham had a good night. Graham gained 15 grams yesterday. He's up to 1lb 14 oz., his birth weight. Still NPO, but getting nourishment via PICC. Morning X-ray looked good.

Graham had an off blood gas, so they adjusted his vent a little. His abdomen girth was up a cm compared to this morning. There was blood in his stool per a test strip; they'll continue to monitor, but not overly abnormal.

Tuesday 10/25

Graham is beautiful. They made him a sign because he hit 2lbs. He's also 2 weeks old! He's up and down on sats, but WNL. I read him a few books today. I love when he opens his eyes and looks around, trying to focus. His belly is looking better. Cultures are negative. He's wearing his little pumpkin hat, looks absolutely adorable. Heart murmur is still present, but not a priority, not creating any issues at the moment. Still NPO for 5-7 days.

Wednesday 10/26

Graham did well through the night. He's dropped to 1lb 14oz, but that's expected due to him being NPO for a few days. Lorretta's planning on kangaroo care this afternoon.

Today's a status quo day. No interventions planned, as long as he behaves. He's resting on his belly with his legs pulled in, his little diapered butt sticking up. Up a little for PEEP and rate, but down to 23% O2. Kangaroo care went well.

"Just leaving the hospital. Graham's blood gas was good. He gave me a thumb's up. He was going to town sucking on his tube. Graham can flare his nostrils and move his ears - just like his daddy! Lol" - Mom

2200

Graham has been having pretty big sweeps with his sats. He also looks a little puffy, but overall, is stable. They said the heart murmur may be causing him to retain some fluid. They did do a chest X-ray at 1530 today, no enlargement of the heart, and GI looked better. They're going to do an echocardiogram tomorrow morning; Dr. Finnerty will interpret in the afternoon. Praying that his saturations regulate, and the heart murmur is just a normal developmental hurtle; that hejust didn't have time to fully develop the septum.

Thursday 10/27

Graham remained steady through the night. As of 1300, they haven't done the echocardiogram yet. He's very active, opens his eyes a lot. Seems to track movement, alerts to sound. Doesn't like the bright lights. Antibiotic levels are good. Loves his belly time.

He's using both his respiratory system / circulation and his patent ductus. Common in preemies, rated mild-moderately mild by Dr. Finnerty. No intervention planned, just another echo in a week.

Friday 10/28

Graham had a decent night. Lab work looked good. BGL was a little high, but regulated on his own. They've changed his D10 to NSS, and may alter his TPN. Still swinging on SpO2, but normal due to prematurity. Drops with a lot of intervention, so they're trying to cluster care and diminish how much they have to jostle him. He's 2lbs 90 grams. He's active, opens his eyes, grabs everything.

Saturday 10/29

Graham's still up and down with his oxygen saturation. Tomorrow Dr. Johnson stated she would like to start steroid treatments. The main goal is to reduce the frequency of swings regarding saturation, and to hopefully extubate within 5 to 7 days. He's receiving his fourth transfusion tonight, so his feedings are withheld again until that is completed. They've reduced his normal saline and changed his TPN, his critical care panel looks better at 1600. They had a little difficulty establishing an IV tonight, Kris ended up establishing the line for the transfusion. Graham is up to 2 lbs. 2 oz. Perfusion is good, he still active, and opens his eyes a lot still. They are trying to reduce the amount of jostling due to his drops in sats. He looks bigger!

Sunday 10/30

Graham had a steady night. He spent the night on a new ventilator, which isn't as delicate as the second, but will be more consistent with rate and PEEP. He starts steroids today (DART Protocol), in conjunction with continuing caffeine, to stimulate his respiratory drive. Transfusion went well. He started feeds again; went well, digested all of it. Hoping for forward momentum, not a repeat of before.

Monday 10/31

Graham is doing well on the ventilator. His swings are far less severe than before, but is still finicky when jostled. Feedings have been slowed.

Tuesday 11/01

Graham is at room air, at rate of 30; great progress on the ventilator. Hopefully, the steroids will continue to resolve his respiratory distress syndrome and allow his lungs to develop further. His feedings have been increased to 2cc's. His digestion is still slow, but working. Taking it slow to prevent devolving into necrotizing enterocolitis (NEC). Echo will be done today to check his patent ductus arteriosis (PDA).

1600

Up to 2 cc's for feeds. Hoping to take out tube within 24 hours, at peak of DART protocol. PDA still present, still pretty sizable; may need to be treated.

Wednesday 11/02

1100

Graham is slow on feeds still; he's working on 4cc's in his belly to try to get things moving. Still hoping to take the ET tube out today; he's down to 25 bpm and PEEP of 6, 21-24% O2. He tolerated a blood gas capillary draw fairly well earlier; didn't have any wild swings. He looks good. They had him under the bili light, but his levels were probably attributed to bruising from the many IV attempts and from the last transfusion. He's down to 2lbs, but normal to lose a bit with the steroids.

1300

Graham's no longer intubated; he's receiving oxygen via long-prong cannula. He's tugging away, but remaining steady. He may be on that for a few days, if all goes well, then into the ram cannula. He's got lots of thick secretions, but that's normal. He's making little squeaking noises - his first attempts at crying. He did get half a dose of racemic epi due to a little stridor. Hoping he adjusts, and doesn't tucker himself out.

Thursday 11/03

Graham had a good night and morning. His work of breathing has decreased, and he looks relatively comfortable. They've gone up on a few settings, but to be expected until his lungs become stronger and more self sufficient. His feeds aren't quite digesting as they should; they may attempt continuous care again. The long-prong cannula requires suctioning every so often, but he seems to tolerate that fairly well. He was only at 25% O2. He's able to cry - short and quiet, but it's actually a beautiful thing to hear.

Friday 11/04

1000

They've switched Graham from the long-prong cannula to the RAM cannula. He wasn't ventilating very well with the long-prong, and he kept plugging the tubes with boogers and secretions. The RAM is nice because it's less invasive, more comfortable, and can still offer CPAP, high-flow O2, and adequate volumes. His gases were okay this morning, a little off, but workable. They're limiting interruptions with him today (foregoing the regular 3-hour cares) to give him maximum rest time.

1400

Graham's still not digesting anything. They're going to try the continuous care starting at 0.5mL/hr for 3 hours on, 1 off tmrw. He needs the nourishment to grow, which will help with his lungs and heart. Next blood gas is at 1600. There's a chance he will be re-intubated. This would reduce his respiratory workload, and allow his body to focus on GI and cardiac improvement. However, they don't know if he'd return to the big drops in SpO2 again. If they do go that route, they'd treat the PDA, as long as NEC doesn't occur. The heart medication would be administered 3x, every 12 hours. Chest X-ray looked okay, lungs are still pretty hazy though. GI looked suspicious, but nothing definitive. Lot of big issues rearing up, not sure what to treat first, as treatment cannot happen concurrently due to contraindications. Graham's calling the shots, as always. Hoping for a clear path.

Saturday 11/05

0900

Graham was good over night. They gave him some sodium acetate to help balance his slight metabolic acidosis, pH. They'll adjust his TPN also. He was supposed to start continuous feeds again today.

Lorretta did kangaroo care today. His sats dropped once, but other than that, it went well. He's still very active, opens his eyes. He's so much bigger, too.

He's still not digesting anything. They're holding feeds until he doesn't have any green aspirant. He did have a large BM last night after a glycerine tablet, which is good.

Sunday 11/06

Graham moved his head from one side to the other by himself. He's very active, and strong. He's tolerating the RAM cannula very well. ABGs have been WNL. He started continuous care, has been digesting most of the feeds, with just a little bit of aspirant.

Monday 11/07

1430

Lorretta is doing kangaroo care with Graham today. He's wide awake, just looking up at her. His cries are getting louder. Still doing well on the RAM cannula. Continuous care feeds are going well, still administered at 0.5mL/hour. He's up to 2lbs, 1 oz.

Tuesday 11/08

Graham had a good night. He's up to 0.8mL/hr for feeds. He seems to be comfortable, resting well. He's weened down on Dexamethasone Phosphate, should be done in a couple days.

2000

Graham's day went well. Only a couple minor desats, feedings have gone well. He has a love / hate relationship with his binkie. Abdominal girth has been steady. His coordination seems to be getting better - he's looking at objects, and seems to grab exactly what he wants (mostly trying to pull out his cannula, and playing with his...). Yup, my kid.

Graham is four weeks today!!!

Wednesday 11/09

Graham just relaxed today, everything was status quo. Couple small desats, but did well. Feeds are going well, they're increasing by 0.3 each day.

Thursday 11/10

Graham had a good evening and morning. All but 1 feeds digested. They continued feeds later in the day, and he continued digesting. His O2 was down to 23%, rate at 35bpm. I really think he smiled a couple times while we were visiting and talking to him. Hasn't stooled yet; sure there's a big one right around the corner.

Friday 11/11

0800

Graham had a good night / morning. He tolerated all feeds. He gained an oz. - up to 2lbs 4oz.

1000

No poop yet. Will try another tab today. Kim said she's impressed with how he's doing. I went up a little bit ago, looked great. They hope to have him doing full feeds by next week, and to remove the PICC line.

1400

I saw Graham move his head from side to side. He really seems to be smiling every now and then.

Saturday 11/12

Graham had a good night. He's up to 2 pounds, 5 ounces. He did have two feeds pulled back, but is digesting most. His PDA still looks the same, but no interventions are planned, will probably close on its own. He had some redness under his nose due to the cannula, so they're creating a small space but that's expected with long-term use of the cannula. And he was wide-awake when we visited, and really likes to hold onto Lorretta's hands and onto his cannula (anything he can hold onto). He will get his hepatitis B shot today at 11.

Sunday 11/13

Graham has had two large bowel movements. He's tolerating his feedings of nine ML's total very well, digesting everything. They have lowered his PEEP and PIP on the vent settings, and will get a blood gas in the morning. The nurses washed his head and did his hair up in a Mohawk. He's on his belly, which he still loves. The redness on his septum (from the cannula) has returned to normal already.

His feeds using fresh milk have gone great all day. He had another BM, and the nurses are picking on him because he keeps peeing out of his diapers.

Monday 11/14

Graham has had a great day. I did kangaroo care for a little over an hour this morning with no issues. He is tolerating the fresh milk, will continue with that. He's up to 2 lbs 6 oz. He can move his head back and forth, and can almost plank - he's active, but also seems to rest comfortably. Rate was down to 25 bpm, hovering around RA.

Tuesday 11/15

0800

Graham had an okay night overall. He did have a couple bradycardic episodes; they'll see if vent settings need to be changed. Blood gas was good this morning. They think his cannula may have had a kink in the tubing, has been remedied. Feedings are going well. They're changing to bolus feeds today; he'll get 10cc's at once every 3 hours. He's still at 2lbs 6 oz. He's lifting his head and moving a lot, which may be attributing to his small drops in sats. PDA still present, continuing to monitor.

Wednesday 11/16

1130

Graham had another good night. He's tolerating all of his bolus feeds, and they will continue to raise up to 24 cal through tomorrow. They're weaning his TPN. He is up to 2 lbs. 7 oz. If all goes well, they will remove his PICC line. They reduced his vent settings to a rate of 20 room-air to 24%. The next plan is to put him on CPAP, which will allow him to do all of the work and continue to strengthen his lungs. He looks great, like he is adding weight and I swear he smiles when I talk to him.

1700

Graham had his thumb in his mouth. 😛

Thursday 11/17

Graham had a good night. He was up to 2lbs 9 oz., but had a rather large stool this morning.

Friday 11/18

Graham had a good night / morning. He's still a little swingy with his sats, but normal overall. He did brady a couple times, but again, not abnormal. He kept snuggling his face into his blanket to get his cannula out of his nose. He was wide awake for a little while, and just watched us.

Saturday 11/19

Graham is up to 2 lbs 11 oz! He also pooped on his own last night, no glycerine tablet. He's doing well with the maximum feeds. His BGL was a little low this morning, so they fixed that. They plan on taking out the PICC line at 0300 tmrw.

Sunday 11/20

Graham had another good night! His PICC line came out without issue at three this morning. He's up to 2 pounds, 12 ounces. They've increased his nutrition again, and he's tolerating all feeds. They cleaned his face and changed his cannula also.he was less swinging last night (SpO2).

1800

Graham has transitioned well to CPAP; officially breathing at his own rate, just a little supplemental oxygen. His PICC line is out. He can stretch as much as he wants now - only his OG tube and cannula. His feeds have been increased to 20cc's, which he's tolerating fine. Lorretta did kangaroo care today. Graham just napped and rubbed Lorretta; was very peaceful. We finished painting his room today. Only a few last minute things, then it's ready for him.

Monday 11/21

Graham has had a good day. He's a little swingy, but looks comfortable. They put him in his first onesie! We took in a bag of clothes, but let him rest. He slept during our visit; lots of growing to do!

Tuesday 11/22

Graham had an okay night. Still 2lbs, 13 oz., and 6 weeks "old" today! He had one significant desat, with a respiratory rate in the teens; they changed him from CPAP back to RAM cannula. This was kind of expected. It'll give him a chance to rest with reduced workload. He had another echo done today - waiting to be interpreted by cardiologist. When I visited, he was in a new onesie, and I told him I didn't know if clothes made him looked bigger or smaller. 😛😍 He was wide awake, and just looked at me and around for nearly 20 minutes, then dozed off.

1800

Dr. Finnerty called, said Graham's PDA has reduced to "small," which is good improvement. He did say they noticed an atrial shunt, but that's not abnormal for Graham's situation, and will continue to monitor. The enlargement of the heart due to the steroids has gone down, too, so another plus. In all, his heart is still developing, but shows positive growth and improvement.

2200

Graham's iron and h&h were a little low, but Dr. Gill wants to see how everything goes while Graham is on the RAM again before they do a transfusion; the rest period may help. All in all, he's been resting comfortably, with fewer desats.

Wednesday 11/23

Graham is up to 2lbs, 14oz. He's still swingy with sats, but a little more stable than he was on CPAP. As of 0900, they were waiting for the blood bank to send up his transfusion. He has to be NPO for 2 hours prior, then 4 hours for the transfusion, then another few hours NPO after. They rescheduled his eye test for next week, due to everything he's got going on today, and he's still a little premature.

Thursday 11/24

Graham dropped an oz., but was NPO for a bit during transfusion. Transfusion went well, he's regulating sats better. His rate was lowered to 20 bpm. The nurses made him a little turkey hat, and a certificate of a turkey, with his feet as feathers. He just rested, and occasionally opened his eyes.

Friday 11/25

Graham had a good night / morning. Feeds are going well. He's back up to 2lbs, 14 oz. He had a large poop while Mary was changing him; went all over his bedding and the sides of the isolette. They lowered his rate to 15 bpm. His IV was taken out also.

Saturday 11/26

Graham had a good night. He didn't have any bradys, currently around 25% O2. He gained 15 grams. He's at a rate of 20bpm, and stays pretty steady. Kangaroo time was good. He sucks on his feeding tube, and tries to suck on Lorretta's chest when he lies against it.

Sunday 11/27

Graham had a great night. He's 2lbs, 15 oz., only a few grams shy of 3 lbs! Lorretta did kangaroo care earlier in the morning, everything went smoothly. He's been steady lying on his back. He had preferred his belly before, but seems to be changing his mind. He can roll his head over and pick it up for a little while.

Monday 11/28

Graham had a good night. He's up to 3lbs, . He's digested all of his feeds, and is pooping on his own. Lots of napping today. Kangaroo care went well. Eye test should be sometime between Tuesday - Thursday. His feeds have increased to 26 cc's.

Tuesday 11/29

Graham had a good night. He gained 10 grams last night. He had one desat, but he had pulled his cannula out. Lots of sleeping.

Wednesday 11/30

Graham did well overnight. His desats are caused by him pulling his cannula out; darn fine motor skills. 😛 He's up to 3lbs, 2.2 oz. He looks amazing. His cheeks are getting chubbier each day.

Lorretta tried breastfeeding mechanics for the first time today. Graham did well, reflex was there.

Thursday 12/01

Graham had a decent night; just the regular desats. I held Graham for roughly an hour this morning. He just slept and played with my chest hair. He had another big blowout in his isolette today - both Graham and the isolette got full baths. He's getting so big! His eye exam is today, usually occurs around 1200.

1300

Eye test went okay, looked premature but normal. Another in a couple weeks. Had a small desat, but he did well overall.

Friday 12/02

Graham had a good night. He was at 22% while Lorretta did kangaroo care this morning. He's been at RA most of the day. He gained 5 grams last night. His feeds are up to 28 cc's, which he's tolerating well. He woke up when I visited and held my finger as I talked to him. His face, legs and arms are getting chubbier. His rate is @ 15, and his PIP and PEEP are low, which is good; maybe another attempt at CPAP soon.

Saturday 12/03

Graham had a good night. He's up to 3lbs, 4 oz. He's been on RA for most of the day. He was snuggled up on his belly, just snoozing away. Doing well again with the lower vent settings. Stage 0 for retinopathy, which is awesome. Stage 0 means no sign of eye disease or enlarged blood vessels that could lead to poor vision or blindness which is common in premature babies.

Sunday 12/04

Graham had a good night. They lowered his rate again, to 10 bpm. Seems to be tolerating well, sats are staying up. He gained 65 grams last night, bringing him up to 3lbs, 6.4oz! He pulled his OG tube out, but they replaced it without incident, and he tolerated it really well. He did spit up a little bit when it was out.

Monday 12/05

Graham had a good night / day. He's had no bradycardia and no periods of apnea. He had a large BM. He gained 15 grams. He's on a new ventilator. At 0300 tmrw, they'll lower his rate to 5bpm, and if that goes well, they'll move to CPAP. Lorretta held him in the morning and on lunch. He's very alert while talking to him.

Tuesday 12/06

Graham had a good night. Only had 1 desat. They lowered his rate to 5bpm, will see how he does. If everything goes well, maybe CPAP later. He had a large BM. He's at 3lbs, 6.6oz.

Wednesday 12/07

Graham is officially on CPAP. Has a blood gas at 0900 to see how he does. They gave him frozen milk this morning, and had <25% residual, but also had a BM, so that may be why he didn't digest it all. Lots of growing, moving, and looking around. He gained 45 grams - up to 3lbs, 8.2 oz. Bottle feeding may start next week.

Both blood gases today were great. He opened his eyes tn as I talked to him. His grip is really strong. And he seemed to smile often as I spoke. 😊

Thursday 12/08

Graham's good. Still on CPAP, room air. Few desats, but nothing lingering. Gained 10 grams. Keeps burying his face in his blankets.

I held gram for nearly an hour today. He did great, only a couple small desats when he was moved. They raised his PEEP up to six, but his oxygen level has stayed at room air, so that's good. His eye exam is scheduled for noonish today. He will also get his two month immunizationsat some point in the next few days.

Friday 12/09

Graham had a steady night. He's up to 3 lbs 9.6 ounces this morning. He's had no bradys, just a couple desats.

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Graham is completely off the vent. He's receiving just a little supplemental oxygen (still mostly RA) at times through a regular cannula, and rate is entirely his own. Hopefully he doesn't tucker out, and strengthens his respiratory drive. He was wide awake on his belly, sucking his thumb. Big smile when I talked to him. Again, second eye test showed no stages of retinopathy; will have another eye exam and another echocardiogram next week. Big steps today!

Saturday 12/10

Graham had another good night. Sheri said "he's actually kind of boring." I told her that was absolutely fine, he gave us enough excitement the first couple months. He's up to 3 pounds 10.4 ounces. He had a couple desats, small, around feeding time but nothing out of the norm. He still on the regular cannula, ranging from room air 24%. The baby shower / diaper party went great. He's got a great beginning. Jody also brought out the front of the crib, so we're really ready to go.

Sunday 12/11

Graham had a good night. He's up 3lbs 10.6 oz. He latches onto Lorretta excitedly, and seems have some basic inclinations for breast feed. They've moved his OG tube, now had NG tube in preparation for bottle feeding.

Monday 12/12

Graham had a good night / morning. He's at 3lbs, 10.8 oz. Graham and I made some Christmas tree ornaments for Lorretta; they're perfect, and she loves them. He stays right around room air. He had a few desats, but I think a majority of them are just his sensor not reading accurately; his perfusion is good. As I was using A&D ointment to get the ink off his hand, he showed me his biggest smile yet - it was beautiful. They may start bottle feeds tomorrow. He got his 2-month vaccination today. He wiggles all over in the isolette. The nurse said he had wiggled all the way to the bottom, so his feet were bent / nested on the side.

Tuesday 12/13

Graham had a good night - no bradys, and he stayed at RA all night. They're not starting bottle feeds just yet; just giving his more time to develop the mechanisms I think.

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They bottle fed Graham! He had about 5 cc's; will try again tonight.

Wednesday 12/14

Graham's up to 3lbs, 13 oz. They've moved him to the back of the NICU, an awesome step, a move closer to home!

Graham is doing good. They haven't tried bottle feeding him today, just letting him rest. Down to 2 liters on nasal cannula. Had one brady around 1400, but no other problems. I'm down and out with a cold today; first day I haven't seen Graham, and it's driving me nuts. Better safe than sorry.

Thursday 12/15

Graham had a series of bradys and desats around 2300, so they bumped him up to 3L O2. This may be due to the 2-month immunizations. He's 3lbs, 15oz!

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Dr. Finnerty just called, said Graham's PDA looks like it's closed! He had another echocardiogram yesterday. There is still some communication between the atrium (atrial-septum defect, or ASD), roughly 5-6mm. This is getting smaller, and will continue to be monitored for a few years. He said the flow looks good, and there's no hypertrophy to right ventricle which is good.

Friday 12/16

Graham had a good night / day. We was very active for Lorretta in the morning, but slept most of the day. He's still at 3LPM. 3lbs, 15.6oz! We went to see Star Wars: Rogue One, but brought him fresh milk after. Cant wait to start the saga with Graham!

Saturday 12/17

Graham had a good night. He did lose some weight; he's at 3lbs, 14oz. He had a couple BMs last night, and his feeds have been at 35cc's for a bit, so they may increase his intake a bit.

Sunday 12/18

Graham had a good night and morning. He's up to 3lbs, 15.5oz. When Lorretta changed his diaper, he had pooped. Right as she changed him, he pooped some more. And then she changed him again; more poop. And then she changed him again, and he peed all over. 4 diapers in 5 minutes. He had one brady while bottle feeding, but nothing abnormal. Lorretta did great feeding and burping him. He had about 100cc's, then tuckered out.

Monday 12/19

Graham had a great night. He hit 4lbs! We bottle fed him at 1800; he ate 38cc's in the time it took to work on the 10cc's yesterday! Literally learned overnight! He peed all over Lorretta, too.

Tuesday 12/20

Graham had a good night, only one brady around 0300. He gained weight, 4lbs, 1.6oz. They've lowered his oxygen to 2.5LPM. He's been regulating temperature well, also.

Wednesday 12/21

Graham had a good night / morning. Lots of rest. Hopefully, he'll move to an open crib on Friday. Seems to be regulating temperature well. Bottle feed this morning went well. Santa comes today!

He did well during the photos, even smiling for some. He had a bit of residual left at 2100, so they re-fed him that, let him rest on his belly.

Thursday 12/22

Graham had a good night, no episodes. He gained, up to 4lbs, 4oz. They bumped him back up to 2.5LPM. He had about 15 cc's of his bottle feed in the evening, and tuckered out. Lots of rest tonight.

Friday 12/23

0830

Graham had a good night / morning, no b/a episodes. He gained, up to 4lbs, 5.1oz. He took his whole bottle feed this morning, 38cc's. He was lowered to 2LPM again, no major desats.

Saturday 12/24

0330

Graham has been having a good night. He took about 10cc's via bottle, rest via NG. The decline is normal, with him burning more energy and calories getting acclimated to his new crib. He's maintained his temperature well. They weaned his oxygen to 1.5L.

1330

Graham is still finicky on bottle feeds; he's probably just adjusting to the crib. His temp has been regular. He's doing good with the 1.5L. He's a little milk-monster; goes crazy with latching and breast feeding. Mechanics are there, just working on sequencing and rhythm. He's up to 4lbs, 6oz.

Sunday 12/25 - Graham's first Christmas!

0730

Graham had a good night, no b/a. His weight stayed the same. He's still regulating his temperature well. He fed well in the night. Feeds are up to 40cc's, but he takes that and wants more!

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He didn't want to bottle feed, only taking about 10 cc's, but like snuggling with his pacifier. He's had no issues with temperature, and no b/a. His rate on the high flow cannula was low, at 1LPM, so he was getting a lot of condensation into his nose. So they okay'd taking it off, and if he had dropped, to put him on a regular cannula. He was wide awake, just watching Lorretta and I as we talked to him.

Monday 12/26

Graham had a good night. He gained an ounce, up to 4lbs, 7.1oz. He had no b/a, and is still cannula free! His 0900 bottle feed went well.

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We bottle-fed Graham again at noon. He did really well, taking the whole bottle around 42 mL. He's still off of the cannula, with no problems thus far. Kim discontinued his caffeine today; he needs to be off of that for seven days before making any decisions toward going home. They had mentioned possibly starting the car seat tests at the end of the week. Also, they gave us the paperwork to start the circumcision process (sorry, buddy!). They are starting to change his feeding pattern from 3 to 4 hours, 40 to 55cc's. As long as he adjusts and continues to take each feed by breast or bottle, it's another indication he's going home soon.

Tuesday 12/27

Graham had a good night, no b/a. He was swingy with his sats around 0300, so they put him on a regular NC @ 1LPM. It may be just getting used to no caffeine. He gained, up to 4lbs, 8.7oz.

He was slow on his 1500 bottle feed, but did finish it up. He woke up enough to give me a few smiles when I visited. Lorretta will try nursing for the first real time tonight. (He just kind of nibbled, but took the whole feed via bottle fine.)

Wednesday 12/28

Graham had a good day. Up to 4lbs, 10oz. Still on 1L, no b/a. Lorretta tried a nipple shield to help Graham breastfeed, no big difference. He prefers bottled, not draught. His heart looks fine, PDA is closed, just the mild/moderate foramen ovale between atrium.

Thursday 12/29

Graham had a good day / evening. Still at 4lbs, 11oz. He's tolerating his bottle feeds well. Not really sure about breast feeding, he seems to have a hard time maintaining a good latch. He was wide awake, had another Mohawk.

Friday 12/30

Graham had a good night / morning. They did bump him up a little on oxygen, about 1.5L; just a few desats, nothing lingering. He's done well on all of his feeds. He ate and napped on me for about an hour, smiling a lot when I talked to him. They did raise his vitamin D. He did have a couple bradys while feeding.

Saturday 12/31/2016

Graham had a good night. He bottled well this morning. He's up to 4lb, 14.3oz. He's doing well, lots of rest. No b/a.

Sunday 01/01/2017

I was able to visit Graham just after midnight. I helped bathe him for the first time and wrestled him into a t-shirt onesie, which is ridiculously difficult. Changed his diaper. He was off oxygen for a few minutes, did fine. He was wide awake, just watched me as I spoke to him, and looked around as I walked him around his corner of the NICU. He dropped a bit to 4lbs, 13oz.

Monday 01/02

Graham had a decent night. He's still swingy on his sats. He had another eye exam, still shows some prematurity, and he's pretty irritable after. He'll have another eye exam in two weeks. Feeds are going well; maybe 2:1 bottle to NG. He's at 4lbs, 15oz. Jody and Tanya visited today; he smiled a couple times while they watched him. He seems to have outgrown a few of his preemie clothes.

Tuesday 01/03

Graham had a good night. They lowered his oxygen to 1L; he's still a little swingy, but no b/a. He's still about 2:1 for bottle feeds. He was tube fed for his noon feed. They think he might still be irritable from his eye appt. He weighs 5lbs!

Wednesday 01/04

Graham had a good night. He's up to 5lbs, 1oz. Kasey got to hold Graham this morning for a while; first person to hold him other than Lorretta and I. He did well on his feeds this morning. They'll try to move ahead predominantly with bottle feeds. Lorretta's got a cold.

They're giving him some lasix today, and over the next three days. Kim noticed he was a little puffy. Hopefully the decrease in water retention will ease his breathing. I don't know if this is due to a renal or cardiac issue - Lorretta was relaying information, wasn't too sure. Either way, Kim told her this wasn't too glaring, and normal for preemies.

Mom fed / held Graham tn for the first time. Everything went well, she said they both enjoyed it. 😊

Thursday 01/05

Graham had a good night / morning. Kasey and Todd got to bottle feed him in the afternoon / evening. He did brady while feeding. Kim recommended a different bottle, which may help him get the sequence down. Overall, he's good. Less puffy due to the lasix, lung sounds clearer. Maybe another echo tomorrow. He did lose a little due to the lasix, but is still over 5lbs.

Friday 01/06

Graham had a good night. Feeds have been all bottle. He did brady again during Kasey's 0830 feed. He comes around quickly after though, and was very alert. His later feeds, he had minor bradys, but didn't require any stimulation. Just needs to get his coordination down. If he bradys at rest, it'd be considered a prematurity issue, and if it was only after feeds, it'd be a reflux problem. They took him off of O2.

Saturday 01/07

Graham had a good night. The last couple feeds he did great. He pulled out his NG tube and handed it to the nurse (😂😝), so they left it out. He's still off of oxygen, sats remain great, just the minor dips while feeding. Talked to him for a bit in the morning, and he just smiled away.

Joyce and Darlene got to hold Graham for the first time. Lorraine also. He did well, was awake for most of it.

Sunday 01/08

Graham had a good night. He's up to 5lbs, 5.7oz. Steve and Darlene got to visit today. He did great during the day, no bradys. Feeds went well. He's all bottle still. We gave him his first bath today, he wasn't sure what to think, but did okay.

Monday 01/09

Graham had a good night. He's still at 5lbs, 5oz. I fed him at 1230 with no problems. He seems to like the Dr. Brown's preemie bottles. They changed his fortifier and added vitamin D. We went again at 2030, fed fine. No big problems with feeds, day 2 of no bradycardia. This is going to be the frustrating part, because the actual count for him to come home is on.

Tuesday 01/10

0830

Graham had a great night. He's up to 5lbs, 8.6oz. All of his bottle feeds during the night went well. Day 3 of no bradys.

1100

He had a couple at-rest apneas around 0730 so they're restarting his countdown. He had another echocardiogram, waiting on results. Overall, he had a good day. Feeds went well, snuggle time with Grandma.

Wednesday 01/11

Graham had a good night, no b/a. Night feeds went well. He's up to 5lbs, 10.3oz. He was snoozing when I went in around 0600, with his arms raised over his head. We did the 8:30 PM feed, and he did mostly well, had a few desats but no actual bradys.

Thursday 01/12

Graham had a good night. He gains 80 g, so he's up to 5lbs, 13oz. No b/a. All feeds as of 1230 have gone well.

Friday 01/13

Graham had a good night / morning. Lorretta's dad got to hold Graham for the first time today. Graham did great, even gave up a few smiles. Feeds have gone well, overall. He could possibly come home Monday!

Saturday 01/14

Graham had a good night / morning. His feeds have been going well. He'll get synergist sometime in the next few days.

He had a desat with his 1630, reset to 0/3. So maybe home Tuesday. He passed his car seat test with flying colors, sleeping over two hours in it.

Sunday 01/15

Graham topped 6 lbs! He had a desat while at rest earlier in the morning, resetting his count to 0/5. Feeds went okay today.

Monday 01/16

Graham had a good night. He's at 6 lbs, 2.8g. His feeds in the early morning went fine. While bottling him at his 0830 feed, he had a small desat and brady; they'll review, but this will probably make him 0/3. Overall, he did good. He eventually finished the bottle. They're going to do a maximum amount he can be fed, which will hopefully reduce his reflux.

Tuesday 01/17

Graham had a good night, no episodes. He gained 10g. Seems to been doing well with the maximum feeds.

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Graham had a good day. A minute before we came in, he had a really quick brady, no color change. I almost think it misread; regardless, it set his awake-brady count to 0/3. In all, he still may be home Friday / Saturday. His 1830 bottle feed went well. He was really tired and needed a couple breaks, but took the second half quickly. He then enjoyed a nice nap on daddy then mommy. Peed allll overrrr me the second I took my eyes off of that super soaker to grab another diaper.

Wednesday 01/18 - 100 days in the NICU

Graham had a good night, no b/a. He's up to 6lbs, 3oz. He's done well on all of his feeds. The max feed (65cc's every 3 hours) seems to be working fine for reflux, but is also breaking up his sleep, and he looks for more milk after his bottle is gone. I think this is just something we're going to have to titrate as we go. He seemed irritable, like he had an upset stomach throughout the afternoon. Lorraine was able to adjust him, which he seemed to enjoy. Hopefully that will help him relax. He's beautiful, getting big, and is more vocal each day.

Thursday 01/19

Graham has had a good night. He's had no episodes. Feeds have gone well; gained 60 g. He's up to 6 lbs. 6 oz.

He's done well all day. I signed his 24-hour notice of intent to discharge and another document for his circumcision; may be done tomorrow. If he does (which he will!) well tonight, he's set to come home at 1330 tomorrow! We watched all the discharge videos tonight, what a joy that was. Mom fed and held Graham as we watched them. Sooo excited. Sooo nervous. The NICU staff made him a hat and glasses and such to celebrate his 100th day. They also made a cake for us to share. Kim got him a cute onesie that says "World's Smallest Super Hero," which is completely true. Strongest little boy ever. He was a little irritable when we laid him down, but he eventually calmed down. One more night, buddy, then you come home! Thank God for so many blessings and answers prayers. Our own true miracle.

Friday 01/20

Graham had a good night! He's coming home today! I'm running around making sure his beds are good and we have all the final arrangements. Owlet and other last minute items should be here early next week! He had his circumcision done today, using PlastiBell; looks good.

Graham made it home fine. He did a last-minute walk through with Karlee, then trekked home. All feeds have been going well. He sleeps mostly, but I think the new environment kept him awake last night.

I took the later feeds, Lorretta did 0330 / 0630.

Tuesday 01/25

Graham has been home a few days now. He's had two doctors appointments; both reports are great. He's up to 6 lbs. 14 oz., as of yesterday. He's doing really well at home. His feeds and sleep are mostly on a pattern. It's absolutely wonderful having him home.


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