Help me be able to stay with Hunter
Donation protected
I had a very easy, healthy, and low risk pregnancy until I hit 34 weeks. That’s when the small contractions hit and then 3 days later the emergency C-section. Hunter was born March 8, 2022 at 3:07pm. Only 20% make it to birth. 10% only make it after 4 weeks. He has non immune hydrops. It affects the body’s ability to manage fluid. Hunter is a fighter and a miracle baby.
March 12, 2022.I learned today that “Hydrops” is a wide ranged term they use to describe a baby that has a lot of random fluid build up in their bodies. They do know that Hunters issue is with fluid over producing around his lungs. They don’t know the reason for that yet. Once they do it will be game time for treatment that will show true improvement. Right now it’s about studying him and giving him treatment that keeps his stats normal.
They say that Hunter is a very feisty baby which they like, but they give him medicine to calm him down so he can’t mess with his tubes. He is one of the most severe babies that they have had. His doctors say that they were impressed with how fast the team worked at Robinson Memorial Hospital. They say it’s hard for most places to identify a Hydrops baby.
Hunter hates a lot of noise or stimulation (when people touch him). He only likes it when we hold hands with him. The doctors have to talk in low and calm voices around him. If not then his stats drop because he gets mad at all of the noise.
Today was rough and it was a huge sensory over load for Joey and I. It’s a lot of information to take in. I literally have to write it down. I feel like a student . It feels good to be near him though. I felt like a huge piece of me was missing when I was all the way in Robinson. I’m pretty sure it will be the same news tomorrow. Just keeping him stable until they find out what’s causing the issue with the over production of fluid around his lungs.
Thank you! everyone for helping us get here. We still have a very long journey ahead of us. So far it’s looking good we are heading in the right direction.
The first time we saw Hunter after the emergency C-section. March 8, 2022.
The first time I touched Hunter. March 8, 2022.
My husband Joey’s first touch. March 8, 2022.
0ur first family touch. March 8, 2022.
I call her Hunter’s first girlfriend because she was the only one that he would let intubate him. March 8, 2022.
This is a screenshot of the video Joey took for me when he went to see Hunter at Carle. The day after he was born. March 9, 2022.
This is Hunter’s set up at Carle NICU. He’s just chilling at bed time. March 12th, 2022.
Hunter’s hand compared to mine. March 13, 2022.
Hunter’s adorable baby hair. And his hand compared to Joey’s. March 13, 2022.
The sign the nurses made for his bed. March 13, 2022.
This is what Hunter’s area looks like at the NCIU. March 13, 2022
March 16, 2022. The hospital made foot prints today. And my room has a Hunter ceiling fan. I think that’s a good sign.
March 16, 2022. Hunter is way more swollen than before but everything is fine. The knot on his forehead is from a tube they took out. They say that the extra fluid that’s on the outside will slowly absorb back into his body. They are getting great fluid output. His electrolytes are looking good. His fluids and stats are all normal. Oh and he is able to actually grip my finger today9:20pm report from the doctors and nurses: they say that they are barely getting any fluid from his lungs. Which means that his lungs are healing! Hunter cannot ingest my milk yet, but the nurses say that they can use it to swab the inside of his mouth because it’s good for him. Still a long way to go, but man today is a good day!
10:50pm: Hunter’s good grip on my finger.March 16, 2020.
10:50pm: Hunter’s readjusted and ready for bed. March 16, 2020.
Hunter’s morning photo. March 17, 2022.
Hunter’s morning photo. March 17, 2022.
His ears have uncoiled and are now open. They took his catheter out because they are getting good urine output with the lasix.
They are using my breast milk to swab the inside of his cheeks. Oh and he smells amazing! I can’t describe it, but I can not get enough of his scent.
His stats are all good!
Hunter at 5:30pm March 17, 2022.
This is my favorite finger picture so far. 5:59pm March 17, 2022.9:20pm report from the doctors and nurses: they are changing nothing with his routine right now. His nurse from earlier said that Hunter is Stably-unstable. Which is the perfect description for him. They took his labs today from 6pm to 7pm. I’ll get the report on those hopefully tomorrow.
11:02: They took out Hunter’s arterial line because his heart is doing good. Hunter is all ready and tucked in for bed. March 17, 2022.
3:20 pm March 18, 2022.
3:20 pm March 18, 2022.They took out his right chest tube this morning. In the last X-ray it showed that it wasn’t in an effective place. Plus he wasn’t draining any fluids. Because they took it out his albumin (blood) levels were low. Nothing to worry about they are doing little tweaks here and there.
Hunter’s stats are nice and stable. The rest of his levels are looking good. There are no routine changes in the near future.
We are still waiting on his labs from yesterday they will take awhile to come back.
At 3:40pm March 18, 2022. Hunter’s nurse Christy asked me if I wanted to help reposition him. I got to help change his diaper and rearrange his wires and tubes. I also got to swab the inside of his mouth with my breast milk. He actually sucked on the swab. It’s the most that I’ve gotten to touch him so far.At 4:36 pm: Hector from pediatric specialties came by and talked to me about how they are slowly going to wing Hunter off of his hydrocortisone. It helps with his blood pressure. He said that Hunter just being 10 days old is not enough for him to say just stop it. Because he is such a complex case they are going to try and wing him off over the next few days. He said that during this process they need to watch for low blood pressure and blood sugar levels.
7:17pm March 18, 2022.
His head is starting to round out more and his eyes are less puffy.
9:16pm Report from doctors and nurses: Really no new changes. They just talked about slowly going down on the respirator and making sure to do a X-ray in between those changes to see the progress. They really are not doing anything major with it yet.
10:45pm: They decided to do a X-ray now instead of in the morning. Just to check.
11:05pm March 18, 2022.
11:05pm: They got the X-ray. Now they are just readjusting Hunter and his tubes. Mainly redoing the tape around his mouth tube. They also moved the tube in his mouth up some.
12:18am March 18, 2022. Hunter is changed, rearranged, and ready for bed. 
3:07pm March 19, 2022. Hunter’s first photo of the day.3:07pm: We have had a little set back today. Hunter got a second pick line today. The pick lines go into one of the blood vessels that lead to his heart. They use his left pick line for his clear liquids(saline) and lipids(his nutrients). They use his right pick line for his blood pressure and pain medication.
They also had to put his right chest tube back in today because he started to reproduce fluid again.
Last night he was breathing to hard. He keeps trying to breathe over his respirator. They gave him more pain medication then, but he was still breathing to hard into the night. After I left.
MAP Machine. March 19, 2022.
They believe it is because they went down on his MAP(Main Air Pressure) settings a little to fast. The MAP helps hold Hunter’s lungs open. Hunter is doing well with his oxygen. That’s why they have been turning his settings down. Things like his MAP and Oxygen will always go up and down depending on the situation. So I won’t post his numbers because I would do it at least 10 times a day.
7:01pm: Just got repositioned and all of our tubes changed. Now we are just having some chill time.9:31pm: Hunter’s left chest tube just came out. So they are putting a new one in now. I have to wait in the lobby of the NCIU because it has to be as sterile as possible in his area.
10:22pm March 19, 2022. Hunter’s chest tube is secure. His stats are nice and stable. Hunter is tucked in and ready for bed.
12:00pm March 20, 2022. Hunter’s first photo of the day.Hunter is so far having an amazing day! No drops in stats over night. He’s being a champ.
March 20, 2022. I finally got the courage to let his did window down so I can touch him better.
March 20, 2022. Hunter’s nurse gave me books to keep and read to him.
3:54pm March 20, 2022. Hunter got repositioned and changed.
6:15 pm March 20, 2022. Hunter just got changed and repositioned again. Now we are having some chill time.
10:26pm March 20, 2022. Hunter is tucked in and ready for bed. No new changes to his routine. Hunter had an amazing day today!
1:20 pm March 21, 2022. Hunter’s first photo of the day.
Hunter has been doing well today.
Hunter’s Dr. Pramod Mallipaddi called St Louis today to ask about hunter being transported there. The reason is that that hospital can do more advanced testing. Plus they have more experience in the medication that Hunter might eventually need. Not that Carle isn’t helping him it just that his doctors think that St Louis is a good place for him. They say the earlier he goes the better. Hunter is now 13days old. We are still waiting on the call back. They might get him today, in 2 days, or they might tell us to wait a little longer.
Also the got back Joey and I’s blood results. They had “no findings”. Which means no answers from our DNA.
They are also going to test how well Hunter breathes on a different ventilator because the one he’s on now is to big for a helicopter.
3:40pm March 21, 2022. Hunter just got repositioned and changed.
8:46pm March 21, 2022. Just holding hands and relaxing.
10:06pm March 21, 2022. Hunter’s goodnight photo. He got repositioned and changed again. Now he’s all tucked in and ready to sleep.There were no new changes in his routine today.
2:05pm March 22, 2022. 
2:05pm March 22, 2022. Hunter is having another good day! Hunter is getting blood cultures done to check for infection because of his red tummy. They thought it was from his blood infusions, but now they think it could be cellulite. They are going to put him on antibiotics just in case.
They are also going to try feeding him my breast milk today and see how well he ingests it. Today is the first day he got to have a blanket.
4:45pm March 22, 2022. Hunter’s new finger picture. We are observing how Hunter’s features are becoming more clear. Talking about how well his vitals and tests are going. We are still testing the breast milk so far he’s sucking on it. The real test is to see if it goes back into his chest tubes. So far we’re good. We just got to see if he can truly ingest it.
8:34pm March 22, 2022. Just another side view of Hunter. So far there hasn’t been any breast milk in his chest tubes yet. Which is good! It’s still early though, we just gotta get his stomach moving.9:45pm Doctor rounds: They are changing nothing they just discussed his stats and body fluid levels. They like where he’s at so we are just going to keep everything the same for now.
10:35pm: Hunter took his second breast milk feeding well. We will see as time goes if he can truly digest it.
11:34pm March 22, 2022. Hunter’s repositioned and changed. He’s ready for bed.
1:13pm March 23, 2022. Hunter is doing so well! His nurse Jess said that he is not doing turtle movements today. She said that he’s flailing and actually trying to fight her. Doctor Pramod Mallipaddi said that since Hunter is doing better that they are not planning to send him to St. Louis anymore! He will call and consult them in a couple of days to see if Carle needs to change anything.
He also said that it will take a couple of days to see if Hunter can digest my breast milk. They increased his feeding a little bit today.
They gave Hunter Glycerin to help him poop since he hasn’t since birth. He’s already pooped today.
Also they adjusted one of his pick lines today they will do a X-ray later to check on it.
Things that might change:
- They took him completely off of his Dopamine.
- No Albumin today. It helps keep fluid in your blood stream so it doesn’t leak into body tissues.
- Lasix once a day.
They are just testing to see if he can get off of these medications. The (no Albumin) is just to they can test his blood to see if it’s working.
2:47pm March 23, 2022. I got to help reposition and change Hunter.
4:05pm March 23, 2022. Hunter just relaxing.
10:21pm March 23, 2022. Hunter’s ready for bed No changes in routine yet. So far it’s working.
1:21pm March 24, 2022. Hunter’s first photo of the day.Hunter is officially being transported to St. Louis Children’s Hospital tomorrow morning around 9am! Dr. Pramod Mallipaddi said that Hunter is still a very sick baby and he wants Hunter to be at a hospital that has more experience with the surgeries and medications that Hunter will need if anything happens.
He wants Hunter to get transported while he is at his max health.
Hunter is still off of his dopamine.
Still gets lasix only once a day.
No more Glycerin
No more feedings with my breast milk it doubled his fluid output.
8:15pm March 24, 2022. 
8:15pm March 24, 2022.8:38pm: I said good night to Hunter early because I got to pack and get up early to see the flight team tomorrow. He’s doing really well. Today has just been a sensory overload so I haven’t been able to post as much pictures and updates of his daily routine. Tomorrow will be a bit crazy too. So I won’t be able to be good at my updates. I promise to post as much as I can. P.s The nurses were just about to do Hunter’s tuck in time routine so that’s why his diaper is a little wet.
9:41am March 25, 2022.
9:41am March 25, 2022. Hunter’s morning photos. Flight team isn’t here yet, but will be soon.
11:02pm March 25, 2022. This photo is when the flight team was about to transport him.They took an ambulance to the airport, flew on a plane, and then took an ambulance to St. Louis Children's Hospital.
12:01pm: I’m on my way to St. Louis Childrens Hospital now.
4:38pm: I’m here! We have everything set up. The doctors are surgically putting in Hunter’s chest tubes right now just to keep them in the place they want them. He’s nice and stable. Right now I’m just eating snacks and waiting.
6:51pm March 25, 2022. Hunter looks really different. I told the nurse we think it is from him laying on his back and from the medications they gave give to relax on the way over. He just looks smaller and less puffy.
10:19pm March 25, 2022. Hunter’s goodnight photo.Routine or Medication changes:
- Doctors plan to put in Hunter the same amount of fluid that he puts out. The reason is to see if he will retain the fluid correctly.
- He’s on medication that helps sedate him for now.
- He’s on Lasix twice a day again followed by Albumin. Albumin is used to help keep fluid in your blood stream so it doesn’t leak into other tissues.
- His gas levels came back good!
Definitions or explaining how things work: Blood Gas Tests measure the ACID PH in the blood and how much Carbon dioxide is getting put off.
When they see that the carbon dioxide levels are putting a lot off. They Decrease his MAP (Main Airway Pressure) settings on that huge machine. Just a little at a time.
The fluid leaks around Hunter’s lungs. ( Don’t know cause yet. It’s what they are trying to find out.) The MAP machine helps Hunter’s lungs stay open by using pressure. When they decrease the settings it gives him less pressure and helps him do more on his own. As they slowly do this it will eventually get his lungs to a point where he can be on a less aggressive respirator. And so forth.
Hunter’s stats are doing very well. Especially with all this moving he did today.He’s nice and stable.
Hunter’s room and set up photos:
March 25, 2022. I put the sign they made at Carle for him on his rooms door. Let’s just say it’s the cutest one here.
March 25, 2022. Inside of his door.
March 25, 2022. Hunter’s MAP Machine.
March 25, 2022. Nurses/Doctors charting area.
March 25, 2022. Hunter’s medication and stat set up.
MAJOR PROGRESS TODAY!
Hunter’s eyes became less swollen during his trip yesterday! That’s why he looked so different when I saw him last night. His nurse told me that he OPENED HIS EYES during his lab draws earlier. Don’t worry I’m on the look out for it. I saw him open them a tiny bit when she was telling me this. I haven’t seen his eye color or anything. 18 days old today!
12:07pm March 26, 2022. Hunter’s first photo of the day. He’s really relaxed from his medicine.
1:56pm March 26, 2022. Just a close up.
March 26, 2022. Hunter’s new machine.Hunter has graduated to a new respirator!!!! Because his blood gas lab results came back amazing. They said it was a goal to eventually go down on respirators yesterday, but man he’s improving in these steps fast.
The Machine is based off of volume. The volume level they have him set at is 18.
- Orange- Peak pressure.The peak pressure basically stays around 20 to 26. It varies on how much it needs to tweak to help his lungs expand to 18 volume. Also If this goes up to around 30 or higher it means that he’s either mad they messed with him or something needs arranged.
- Green- How many breaths the machine helps him take per minute. When the line turns white it means that he started that breath first and is breathing himself for that moment.
- Blue- It measures what volume hunters lungs are breathing at with each breath. The orange line one adjusts what pressure it needs to put out to help Hunter’s lungs to get to the volume of 18 of his lungs expanding.
I described these in order of the lines in the picture. You can’t see the colors that well.
Test Results and slight medication changes:
- They bumped his sedation medication Precedex from .3 to .4. Just for comfort. Yesterday was a big change for him.
- His X-ray looked good! His chest tubes are draining good.
- Vitals are Amazing.
- They are holding back on his antibiotics right now. They are just wanting to check his Kidney levels before they decide the right dose they want to give him.
4:20pm March 26, 2022. This is a screenshot of a video I took of him when I saw him opening his eyes for the first time! It was only 40 seconds long I wanted to get the first moment and call my husband. So he could see. 
4:20pm March 26, 2022. The first time opening eyes screenshot.
5:37pm March 26, 2022. Got Hunter changed and repositioned.
5:38pm March 26, 2022. Hunter’s repositioned and changed.
10:35pm March 25, 2022. Hunter’s goodnight photo.
March 26, 2022. Scenting hearts.
March 26, 2022. I put his foot prints he did at Carle on his door.
March 26, 2022. I have more space here so I could put up the cards and stuff that family made for Hunter.
March 26, 2022. I put up the books nurse Hannah gave us at Carle.It’s been an amazing fast day. He all good. Also the hearts are what Hunter, Joey York, and I will sleep with and trade out day to day with Hunter. Since the three of us can’t do skin to skin.
11:06pm March 26, 2022. Before I was about to leave Hunter started sucking on his tube like a pacifier so we are going to start working on that tomorrow. He has a good suck from what the nurse tested tonight.
1:41pm March 27, 2022. Hunter’s first photo of the day.Nothing really new today. They went up a little on his fentanyl for comfort because they had to reposition his right chest tube this morning. Hunter did go down to 35 on how many breaths his respirator helps him take per minute. Which is good!
2:40 Just did some foot prints for crafts his nurse is making for his door. I’m too attached to all the first ones he got at Carle. So I had her do some for the his grandmas.
10:21pm March 27, 2022. Hunter’s doing really well nothing has changed since the morning besides him holding his respirator tube. I think it’s a comfort thing. Whenever he hurt or was mad at Carle I just stuck my finger in his right hand. It was how I communicated that I was there. That hand was really the only thing I could touch.
10:21 pm March 23, 2022.
10:23pm March 27, 2022. His nurse made him a little roll to hold onto instead.
March 27, 2022. Also Hunter’s nurses made adorable signs for his door. His night nurse made the one with the dinosaur. His day nurse made the one with the foot print plane and St Louis arch.
10:10am March 28, 2022. Hunter’s doing good! No new changes in his routine. Just keeping him calm. He gets mad because he really wants to do things on his own, but he can’t. His physical therapists were very impressed with Hunter’s movements. They also talked to me about scent cloths and the best way to touch Hunter right now. I told them how usually touch him and they said it’s perfect.
12:29pm March 28, 2022.
I was talking to Joey on video chat. Hunter had his little comfort roll in his hand, but he threw it when he heard our voices. He opened his right hand and I stuck my finger in there. He squeezed and wouldn’t let go. I have a feeling that when Joey and I get to start holding Hunter he won’t let us put him down.
12:29pm March 28, 2022.
12:32pm March 28, 2022.
12:32pm March 28, 2022.
12:43pm March 28, 2022.
9:48pm March 28, 2022. This is a screenshot of a video of Hunter. He opened both of his eyes! It is the longest and widest he’s ever opened them. It’s dark because the lights were low. He’s not use to normal lighting yet.
11:58pm March 28, 2022. Hunter’s goodnight photo. He had an easy day!
9:27am March 29, 2022. Hunter is being stubborn today. They tried to take his respirator from 35 breaths per minute to 30. He didn’t like it. Hunter clenched up and got mad. Which made is lungs close and his stats to drop. He going to stay at 35 for a while.
1:38pm March 29, 2022. A screenshot of a video I got of him. The video is after he calmed down. Notice that he only liked the right hand being touched. Hunter’s a very low stimulation. His right hand is the only place I could touch before at Carle. It’s his comfort hand. When he tells me he's done with being touched I stop. You can’t press boundaries with babies like him. Hunter’s the boss he says when to stop and go.
That’s the longest he kept an eye open with the light on. He’s too cute now.
1:46pm March 29, 2022. He took a nap after his eye workout.
7:44pm Hunter’s been mad for the past 2 hours. They are bumping up his fentanyl to .5. Babies get use to that quick. If that doesn’t help then they will switch to morphine. They also bumped up his sedation medicine precedex to .5. They got an X-ray. He is just having one mad rough day.
8:12pm: It came back it showed fluid build up in the right tube, they stripped the tube and got a little out. Respiratory bumped his tidal volume to be 19. So they are expanding his lungs to 19 for every breath he breathes. They also bumped his PEEP to 7 instead of 6. Peep is just what the machine makes his lungs always expand at.
10:48pm March 29, 2022. Hunter’s goodnight photo. He calmed down about a hour ago and is all good.
9:51am March 30, 2022. Hunter is having an amazing day so far!
He has finally gotten to we’re he is a little below his birth weight. Which is good.
Physical Therapy said that he did good with his exercises. His heart rate stayed at 140 to 150 the whole time. He did get a little over stimulated, but he took it well.
Hunter just got a new line in his right foot for his albumin because it doesn’t mix well with other medications. They use to have to wait until his other fluids or medication ran through before they gave it. Doing it this way helps his routine flow better.
They are going to transition from fentanyl to morphine today because Hunter’s body has gotten use to the fentanyl.
His doctors are mainly studying Hunter’s body fluid levels like electrolytes and lipids. They also had his nurse take a sample of his right chest tube fluid because it leaks. They want to study what’s coming out of there.
March 30, 2022.
March 30, 2022.
March 30, 2022.
March 30, 2022.
March 30, 2022.
March 30, 2022.
March 30, 2022.
March 30, 2022.At 11:47am he opened his eyes for the longest time! I got a 4 minute video of me talking gibberish and him being adorable, and then I called Joey so he could see. This girl can not wait until Hunter gets his eyes on his dad this Saturday!
2:02pm He popped those eyes open again!
March 30, 2022.
March 30, 2022.
March 30, 2022.
4:30pm: They are going to try going from 35 breaths to 33 breaths on Hunter’s respirator. We will see if he likes it here soon.
5:29pm He took the change really well and we got to see is eyes for a third time today! He got the hiccups and then couldn’t keep his eyes open. Which made him mad. He went back to sleep right after the video ended.
11:11pm March 30, 2022. Goodnight!
2:31pm March 31, 2022. Hunter’s intubation tube has become way to small for his throat since his swelling has gone down. Which has made his ventilator not respirator like I have been calling it this whole time to alarm of a major air leak all day and night for the last couple of days. Which has really made him mad.
His doctors decided this morning to put a bigger one in. It went perfect! They let me stay and watch. Hunter will be sleepy for a bit, but he is all good. His vitals are perfect.
I love studying or attempting to study his medications and procedures it helps me with the situation. I think of it like algebra if you don’t get the simple steps down you won’t be able to solve it when you have bigger problems. This way I can see his real progress not from just looking at him, but also from all of his stats.
10:47pm March 31, 2022. Hunter’s goodnight photo. He’s had a pretty chill sleepy day with a couple of mood swings in between. He’s all good.
2:10am April 1, 2022. He just keeps keeping me up at night I can’t lay down and sleep if I get to see his adorable eyes. I can’t wait for Joey York to see this in person. He’ll be here on Saturday! Whenever he looks at you, you just get stuck and can’t leave to do anything.
2:10pm Hunter kicked out the new iv line this morning. The nurse said he didn’t seem hurt at all and was happily asleep. Hunter decided to do this at shift change. He won’t get a new one in. They found another way to give his albumin. The iv just made it much easier.
Since his swelling has gone down they are taking scans of Hunter’s head and heart. His head scan was all clear! Everything is where it’s supposed to be. They are scanning his heart now just to make sure it’s all good. I’m not worried about it. He always got compliments on how nice it looked when he was in the womb.
3:11pm April 1, 2022. Occupational Therapy saw him today. She worked out his shoulders and he got a new pillow for his feet.
10:50pm: Hunter had an easy day. He’s just relaxed and sleepy.
10:43am Hunter’s morning photo. The only thing new is they went down to 19 volume on his ventilator today. They are also thinking about stopping the suction on his right tube because it stopped draining fluid. Which is good.
I haven’t seen those eyes open in a while. Maybe he’s waiting on Joey to get here.
5:57pm April 2, 2022. Joey and Hunter
The first time Hunter saw Joey.
5:57pm April 2, 2022. Joey and Hunter
10:58pm Hunter’s goodnight photo.
12:10pm April 3, 2022. They tried to take Hunter’s ventilator down to 30 breaths per minute. He did not like it so they put him back up to 33.
His head and ear are shaping out better. We have some big things happening tomorrow, but today is going to be a chill one.
8:29pm April 3, 2022.
9:52pm April 3, 2022. Hunter after his bath.
10:52pm April 3, 2022. Hunter’s goodnight photo. 
8:05am April 4, 2020. Hunter’s morning photo.Hunter’s doing good.
- They took his tidal volume from 19 to 18.
- They started him on Propranolol. It will help with the fluid build up around his face and shoulders.
- They also put Hunter back on lasix today to help drain the fluid.
- They lowered his morphine from 50 to 45. Morphine works better on him than the fentanyl did. So I asked them to lower it just a little bit so he could be more active. Mainly with his eyes. He has no problem kicking or swinging his arms around. I just wanted to see those eyes. Which he has opened nice and wide today! Doing that and being on lasix again has made it easier for his eyes to open.
- Since Hunter’s tube output has gone down they water sealed his left chest tube and stripped his right one to see if they could get more output. Which they have.
- They are starting feeds tomorrow with a special formula that has less fat in it. He will eventually be able to drink my breast milk.
4:56pm April 4, 2022.
4:56pm April 4, 2022.
4:56pm April 4, 2022.I will have more detailed information tomorrow about the feedings. This week is going to be busy for Hunter!
11:26pm April 4, 2022. Hunter’s goodnight photo.
1:42pm April 5, 2022. Hunter’s first photo of the day.Today we just had a lot of consults today. His doctors just want everything nice and organized before we take the next step. Really nothing new today!
- His tube outputs are still going down.
- They raised his bata blocker Propranolol from .6 to .25.
- He’s still on lasix.
- Tomorrow is the official day for special feedings.
5:32pm April 5, 2022. I changed Hunter and got to help his nurse reposition him for my first time!
7:49pm April 5, 2022. Joey and Hunter having some father son time. He opened his eyes while I was pumping and we missed it.
10:46pm April 5, 2022. Hunter’s goodnight photo.
9:39am April 6, 2022. Hunter’s morning photo.- They water sealed Hunter’s right chest tube today. Both of them are sealed now which means no suction.
- They bumped down his Peek pressure from 7 to 6.5. Peek is how the volume pressure keeps his lungs open all of the time.
- They also bumped down his morphine from 45 to 40 per kilo.
- They started his feeds today. He’s at 8ml every 3 hours.
- He is responding well to his therapy exercises which is mainly us learning to swaddle him and comfort him as much as we can in his current state. We are working on the natural reflexes that he should have as a almost 1 month baby.
8:09pm April 6, 2022.
April 6, 2022. Hunter kept his eyes open for 45 minutes straight today. It was beautiful to have him see and hear us both at once.
9:47pm April 6, 2022. Hunter’s goodnight photo.
12:33pm April 7, 2022. Hunter’s first photo of the day.Hunter beat the 10% Hydrops baby survival rate today!! He is 30 days old which is 4 weeks.
- They took his tidal volume from 18 to 17.
- He did good on his feeds yesterday so he now gets 16ml every 3 hours.
- How to rotate his legs and lower back to help him poop.
- The arm relaxing exercises for him.
8:06pm April 7, 2022. 
8:14pm April 7, 2022. We got to see those beautiful eyes again.
8:21pm April 7, 2022. Hunter’s adorable angry face.
10:00pm April 7, 2022. Hunter’s goodnight photo.
10:11am April 8, 2022. Hunter’s morning photo.
They are going to slowly ween Hunter’s medications:
- Morphine by .5 every other day.
- Precedex by .1 on the off days.
- Propranolol dose is increased to 1.08ml.
- PEEP is at 6.0 now. It is the volume his lungs always stay at.
- Tonight his feeds are going up to 24ml, 22 calories per feed, more calories less volume.
- MAYBE taking out his left pick line this weekend.
12:00pm April 8, 2022. We got to see those eyes. These pictures are all screenshots of a video.
12:00pm April 8, 2022. 
12:00pm April 8, 2022.
12:00pm April 8, 2022.
1:08pm April 8, 2022. Hunter’s last photo of the day because Joey and I went to check out the arch and some museums. Hunter’s nurses told him to try and get me out more. I just cannot stand to leave Hunter. Today was fun though. Hunter is doing amazing and this is probably the last time I’ll see my husband in a while. It was good to get out and see new things.
4:45pm April 8, 2022. After the arch we went out to eat and then went “home” to do laundry, watch a movie, and sleep. We got into the Ronald McDonald house yesterday! It’s a blessing to have organizations like this that help families with sick children. It really is a home away from home. I really don’t update about Joey and I because this is really about Hunter and giving as much information as I can about him. I think it might help people in the future. Hydrops is hard to comprehend. Each child is different and the doctors can never really find out the cause.
We got lucky to have such a fighter. I can’t imagine if Hunter wasn’t one of the 20% that make it to birth. He’s officially part of the 10% that survive after 4 weeks! I will try my hardest to study and give the most accurate simple information I have about Hunter.
Goodnight! I can’t wait to see what he does tomorrow.
11:28pm April 9, 2022. Hunter’s morning photo.Lots of good changes today!
- They took out his left chest tube.
- They took out his left picc line.
- They decreased his rate to 30. How many breaths the ventilator help him take per minute.
- They decreased his Precedex to 4ml.
- They put him on Gabapentin 16.5ml. It will help him get off of the Precedex and Morphine.
- Hunter still has his Propranolol 1.08 dose. It’s his bata blocker. He’s also still on Lasix. These both help get rid of the extra body fluid.
- They also increased his feeds to 32ml, 22 calories, more volume.
11:48am April 9, 2022.
5:08pm April 9, 2022.
9:19pm April 9, 2022.
11:21am April 10, 2022. Hunter’s morning photo.Changes from yesterday:
- Lasix by mouth.
- Morphine will become NPO tomorrow.
- Hunter’s X-ray of his left lung showed that it collapsed a little. But that is normal right after you take out a chest tube.
Tomorrow might be the big day! If his X-ray come back good again they will take out his right chest tube. Then I’ll get to hold him for the first time. I just wish that Joey got to be here for it. He had to drive back home today because he has to go back to work.
April 10, 2022.
April 10, 2022.
1:26pm April 10, 2022.
8:48pm April 10, 2022. Hunter’s goodnight photo.
11:48am April 11, 2022.Look you has a chin!!
He’s OFFICIALLY getting his right chest tube out tomorrow!
He’s most likely getting that tube out of his throat tomorrow too!!
His pain meds and his lasix will be given orally. They will take a X-ray around 5am then take out his right chest tube.
After doctor rounds they will come in and most likely take out his breathing tube!
He has a Peep of 5, RR 30, and his tidal volume is at 17. That’s low!! So it gets to come out.
If it all goes well I will get to hold him and get to hear his cry for the first time.
1:31pm April 11, 2022.
4:24pm April 11, 2022.
8:02pm April 11, 2022. Hunter is at 48ml of that low fat formula. He had a spit up, but he was wide eyes and happy.
8:03pm April 11, 2022.
8:03pm April 11, 2022. I got it wiped up. He was really happy tonight.
8:26pm April 11, 2022. Hunter was wide eyed and we watched The Lion King together.
Goodnight! I can’t wait for tomorrow!
10:52am April 12, 2022.- He got his right chest tube taken out. Breathing tube getting taken out tomorrow. His doctor said that his lungs sound perfect!
- Putting him on double lasix and a airway dex. It is a steroid that helps with inflammation.
- His feeds went up to 56ml.
12:17pm April 12, 2022.
4:54pm Hunter’s wide awake.
9:06pm Hunter about to get his tuck in time routine done. These pictures are screenshots of a video of Hunter. He got mad at me because I wouldn’t let give grab his tube, but it didn’t last long.
9:50pm April 12, 2022. Hunter is tucked in and ready for his big day tomorrow!
12:03pm April 13, 2022. Hunter’s first photo of the day.His breathing tube is out! Hunter is doing amazing we are just waiting a couple of hours to let him adjust to breathing on his own. Before we can maybe hopefully let me hold him. He’s also pretty sleepy from his big step today.
- Hunter is still on 21% oxygen just to help with the transition. (That’s the tube in his nose) It just blows air in his nose to remind him to breathe. 21% is room air.
- He still has his feeding tube. They use it for his lasix, propranolol, and his feeds.
- His right picc line will most likely come out at the end of this week.
1:45pm April 13, 2022 video. First time holding Hunter.
PLEASE do not judge this first time mom. I look nuts because I can’t sleep well when Joey York or Hunter are not near me. Hunter still has a bunch of wires and still needs to be on the ventilator to help remind him breathe. But this is the first time I got to hold him. Little crazy because he didn’t like being in the air that long. Plus he has never been held before and he also pooped while he was airborne. Also he has strong hands and nails. The marks on his forehead are from him. He even got my hand pretty good. They are not long enough to cut, but we will file them down tomorrow when he is more adjusted to his new routine.
2:06pm video #2. Hunter calmed down more.
2:15pm April 13, 2022. 
2:35pm video #3. Hunter started to really relax. I should say we both started to really relax. 
5:49pm April 13, 2022. Hunter got relaxed back in bed again. 
9:36pm April 13, 2022. Hunter’s goodnight photo. He took this big step well today.
10:42am April 14, 2022. Screenshot from Hunter’s updated room tour video. He was all bright eyed this morning.
April 14, 2022. I noticed this yesterday! I love how his nurses make things for his door. I’m pretty sure his night first night nurse Shyanne made this. 
April 14, 2022. I made this. This song makes me cry every time I hear it. It matches my feelings this situation perfectly. I would do anything to make this easier for him.
April 14, 2022. This was my favorite book to read when I was a kid. Now it’s my favorite one to read to Hunter. 
10:47am April 14, 2022. Hunter’s official morning photo.37 days old
- left picc line is coming out.
- lasix once a day now.
- 64ml on feeds now.
- might be graduating into a crib today!
12:06pm April 14, 2022. He was still wide eyed but I needed to go pump. I put on the lion king because he needed something moving and talking in front of him. 
1:21pm April 14, 2022. Hunter just got his right pic line out. Hunter fell back asleep. I put on his classical music to help him drown out the noise around him.
2:39pm April 14, 2022. Hunter was still having nap time.
3:43pm April 14, 2022. Video screenshots. This was our second holding session. It went a lot smoother than the first time. I was describing how well Hunter was improving and then I got emotional because I was happy that we finally at 37 days get to do more of the normal baby things. Like swaddling tricks, working with the soothe, and just being able to hold him close. After I stopped happy crying. I described how I was putting my breast milk in his cheeks and then having him suck on his soothe.
6:29pm April 14, 2022. Hunter likes this green soothe the most right now.
6:29pm April 14, 2022. Video screenshot. I was talking about how well he was doing with sucking.
8:40pm April 14, 2022. Hunter just relaxing.
9:43pm April 14, 2022. Hunter’s goodnight photo.
38 days old Hunter is on the cpap setting now!!! Cpap of 8. Hunter is really breathing for him self now.
- Officially graduated to a crib!
- No more lasix!
- Still lowering his Precedex and Morphine a little every other day.
- Still on Gabapentin to help with getting off the Morphine and Precedex.
- Still on his beta blocker Propranolol. It helps with his extra fluid.
11:11am April 15, 2022. Hunter’s first tummy time. He loves this position.
11:53am April 15, 2022. He was really mad when we put him on his back. We were getting him ready to transfer into his new crib.
12:02pm April 15, 2022. Just got adjusted in his new crib.
12:21pm April 15, 2022. Hunter got fully adjusted in his crib.
1:03pm April 15, 2022. The March of Dimes gave Hunter his first Easter onesie.
2:07pm April 15, 2022. I put the first blanket Hunter wore at Carle on him today. This bed doesn’t have a heater well it doesn’t need one like his last bed. We couldn’t put blankets on him because of all of the tubes and equipment.
More adorable signs one of Hunter’s nurses made for his door.
3:21pm: Just got done with Therapy. His nurse practitioner said May 6 is around the time when he would most likely get off all of his pain medication. She also said that we need to make sure that Hunter is completely stable on his own. We still have a lot of check up scans.
We still do not know what caused Hydrops. We do know that it wasn’t genetic. We are still waiting on the more detailed deeper gene test that they did on Hunter.
2:50pm April 15, 2022. His occupational therapist caught this for me. He loves laying on his right side a lot too.
3:16pm April 15, 2022. My first time positioning him for tummy time.
5:37pm: My first time turning him on his
6:37pm: He spit up on me and got a tiny bit in my mouth. You can’t see it, but he spit up and then just fell back asleep.
6:56pm: Just relaxing.
7:25pm: Got tucked back in.
8:02pm: He’s sleeping good now.
8:48pm: Wide awake.
9:02pm April 15, 2022. Photo of Hunter on the scale. He got weighed like a normal premature baby 6 pounds 14 and 3/4 ounces. Now it’s about gaining weight.
9:04pm April 15, 2022. Got back in bed.
9:11pm April 15, 2022. All tucked back in.
9:55pm: Goodnight! Today was really something! Hunter is way more cozy he barely cries. He is one happy miracle baby.
9:47am April 16, 2022. Hunter’s morning photo.39 days old
- cpap setting went from 8 to 7 today!
- 63ml feeds.
- Hunter got his Hep B vaccine today because of his original due date. Babies get this vaccine right after they are born. So Hunter will be pretty sleepy today.
11:34am April 16, 2022.
12:44pm April 16, 2022.
3:07pm April 16, 2022.
3:10pm April 16, 2022. These are screenshots of a video. I was just showing hunter doing normal cute baby things. All he does now is yawn, stretch and make bubbles. His oxygen always stays at 97 to 100%.
3:56pm April 16, 2022. I just changed his diaper and I let his legs out to breathe for a little bit. He never gets mad anymore. I just can not believe how well he is doing.
3:59pm April 16, 2022. His suckling. Everything he does just makes my heart melt.
9:34pm April 16, 2022. Hunter after we did his tuck in time routine.
9:45pm April 16, 2022. The Lion King is Hunter’s favorite movie to watch before he goes to sleep at night. He technically can’t actually see what’s going on, but he sure likes to look at the screen while he listens to it.
9:51pm April 16, 2022. Hunter’s goodnight photo. Hunter had a nice and easy day.
10:43am April 17, 2022. They put another Easter basket outside my door for Hunter. This place is so nice for NICU parents. A lot of people donate to these Ronald McDonald Houses and I appreciate it a lot.40 days old!
Everything is the same from yesterday. They MIGHT take him off his cpap today to see how he does!! If he still needs it we can easily put it back on.
12:25pm April 17, 2022. Hunter’s first photo of the day. 
1:51pm April 17, 2022. He’s sleeping so well.
3:50pm April 17, 2022. Look who is breathing perfectly on his own! 4:15pm:His main doctor came by and we talked about his feeds. He is on low fat formula. So in the future we will do some testing with using normal fat formula to see how it goes.
We are pretty sure the Hydrops was caused by his LYMPH SYSTEM not being able to properly process anything or work right.
So we have to take careful steps.
- If the extra water comes back with normal formula then we will look a lot deeper and see if they can find out a way to fix it.
- If the fluid doesn’t come back then it means than his body just needed time to straighten out his lymph system. If his body fixed the issue itself. We would still need to look into how to keep it that way.
5:54pm April 17, 2022. Hunter is still doing really well on his own.
9:08pm April 17, 2022. Hunter woke up after his night routine again. He’s just to cute.
9:59pm April 17, 2022. Hunter’s goodnight photo.
He still just a really happy baby.
Our goals for tomorrow and through out the week
- Start of our bottle feeding journey with therapy.
- Testing him on normal formula and see if the extra fluid comes back.
- I need to also learn more holding positions.
- Plus get confident with picking him up out of the crib and holding him. I got to find a good in between time because he is still attached to his feeding tube. Which gives him his pain meds and nutrition. I can hold him whenever I want. I just like him to have a good balance and I still do not want to press my luck with his boundaries.
11:30am April 18, 2022. Hunter’s morning photo.41 days old!
Today was Hunter’s original due date.
Everything is the same from yesterday.
- Scheduled a MRI today to check up on him because he has progressed so fast. It might happen tomorrow.
- 3:40pm Just got done with therapy. Our goal is to hold him while he gets feeds so he will get use to waking up while he’s being fed.
12:49pm April 18, 2022.
1:55pm April 18, 2022. Screenshot of a video of me talking about how amazing Hunter is. I think that was another smile I caught, but I’m not sure.
6:15pm April 18, 2022. This was after I changed his diaper for his 6 o’clock routine. He was bright eyed for his feeding.
9:05pm April 18, 2022. We did his night routine. He was awake and watching The Lion King while he got his feeding.
10:18pm April 18, 2022. Hunter’s fed and tucked in for bed.Today was a chill day. The main goal for now is me holding him more especially while he is getting his feedings. It’s weird for me because I am not use being able to hold or touch him. I didn’t hold him yesterday because he just got off of his cpap machine. He use to be a very low stimulation baby, so my first instinct is to step back and let him adjust to his new changes. But now I get to step forward and stimulate him. I did hold him about 4 times today. Tomorrow I’ll do this a lot more.
I’m a blessed momma and I can’t wait to see what he will accomplish tomorrow!
42 days old!
No morning photo because he was already awake with therapy ready to try bottle feeding!
12:24pm April 19, 2022. Hunter’s first bottle! He took 15ml from the bottle.
1:09pm April 19, 2022. After his bottle feed they give the rest through his feeding tube. So we just cuddle the rest of the time.
1:26pm April 19, 2022. Still just cuddling.
1:46pm April 19, 2022. First time safe sleeping!
His bottle feeding instructions.
3:38pm April 19, 2022. After his second feeding. He only took 5ml from the bottle. He was sleepy when we started. The goal is for him to be completely awake and rutting for the bottle. We are still heading in the right direction though. Just having him up out of bed when he gets tube feedings is a good start.
4:41pm April 19, 2022. Hunter’s heading for his check up MRI.
5:38pm April 19, 2022. His MRI only lasted for 15 minutes. I went to pump after he left for his MRI, so I wasn’t there when he got back. This is the picture I got of him when I came back. His nurse said that he slept through it all. 
6:04pm April 19, 2022. His 3rd feeding of the day. He barely took the bottle. Which is understandable because he was tired from the MRI. We just cuddled while he was tube fed.
9:45pm April 19, 2022. 4th feeding he really didn’t want the bottle. We just cuddled while he got tube fed.
11:15pm April 19, 2022. Hunter’s goodnight photo. All we did today was cuddle, sleep, and eat. He still is just a chill baby. Nothing really makes him mad anymore. I can’t wait for tomorrow!
43 days old!
Only change is his feeding position. Just working on taking the bottle and waking up for feeds.
He took 20ml at 9am for his nurses.
11:55am April 20, 2022. Hunter’s morning photo.12pm feeding: he is to wore out to take the bottle.
1:45pm April 20, 2022. Hunter waking up a little.
1:45pm April 20, 2022. Screenshot of a video I took of him being adorable.
1:30pm April 20, 2022.
3:52pm April 20, 2022.3pm feeding: he only took 1ml from the bottle. We cuddled while he got the rest of his feed through his tube.
6:57pm April 20, 2022.6pm feeding: he was way to sleepy to bottle feed. So we cuddled again.
9:35pm April 20, 2022.9pm feeding: he only took 4ml from the bottle and we cuddled.
9:44pm April 20, 2022. Screenshots of a video I took of him. He was really happy.
9:49pm April 20, 2022. We love our cuddles.
10:31pm April 20, 2022. Hunter’s goodnight photo.I’m pretty sure Hunter’s feeding position will change tomorrow. He didn’t like laying on his side for his 9 o’clock feed. He literally cried and then moved himself on his back. This position was him laying on my crisscrossed left leg with my hand behind his head. That position worked best for us so far. He’s just a happy cuddly baby now. I can’t wait to see what he does tomorrow!
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Mary Jane Porter
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Robinson, IL