Max continued to do well without oxygen assistance, and on Wednesday he ate, slept, and played like normal and would go hours past his 'due' times for pain medications. At 9:30 pm the surgical team decided to take his chest tube out, and he was more upset that they had to hold him down than anything else. I was FINALLY able to hold him and we snuggled up on the chair in his room for several hours. They also decided to take out his IV's since he didn't need morphine (hadn't taken it in 12 hours) Maximus was so very happy about that because it meant he could suck on his fingers again.
Thursday morning the doctors decided that since he was off oxygen, his chest tube was out, his IV's were out, and his vitals were all good....they would send him HOME! We had to rush off to pack up our things and check out of our room. We were home before dinner time! For now they want Maximus to be on Oxygen at night since he had some moments where his oxygen levels dropped into the 80's while he was sleeping, and they cautioned us to watch him carefully when he was taking naps during they day. He needs to 'go easy' for a while to make sure he heals fully and still needs to stay away from people to avoid getting sick (Can you imagine getting a cold after having 1/3 of your lung removed? Yikes!) Eventually, the other parts of his lung will expand and fill the empty space and until that happens he will continue to be immune compromised, even more so now than he was when he first came home. He has received his first Synagis shot (RSV shot) and I pray constantly that he will be safe from RSV, since he is recovering from surgery. S and I will continue to change our clothes and/or shower when we get home from work as well as staying away from public places as much as possible. We are hoping that by summer time we will be able to go out and about with Max, though it is worth it to keep him home if it means keeping him healthy.
We are blessed and we know it, and continue to be speechless from the support, prayers, and kindness from everyone.
Sunday, December 2, 2012
Tuesday, November 27, 2012
Surgery
Maximus was born with a CCAM in his lung, as a reminder we didn't know this until he was born though they can sometimes be detected on ultrasounds. This is a random event 1 in 300,000 babies are born with them, and his has nothing to do with his prematurity, nor did it cause his premature birth. A CCAM is a fluid and air filled mass similar to a cyst. From his CT scan on November 2nd we learned that it was oddly shapped and the largest 'bubble' was 1.5cm and the smallest 'bubble was 5mm. They decided that they wouldn't know exactly what to do until they actually got in there. They also learned that there was a large blood vessel 'feeding' the cyst that they would have to be very careful about to avoid too much bleeding.
Monday was surgery day and the initial plan of action was to do a diagnostic Laparoscopy, Thoracotomy, and lobectomy (removal of his bottom right lobe) of his right lung, in addition to repairing his inguinal hernia. At the last minute the surgeon told us wanted to avoid a Thoracotomy because the recovery and risks will be milder the other way.
They took him back at 2:35 pm and told us to expect him to be done at 5:30pm. We waited in the surgical waiting room after we got our sleeping arrangements figured out. We got a message around 5:30pm telling us he was ok, stable, and they weren't quite done yet. We got the same message at 6:30, stable and they would give us another update in an hour. At 7:00pm they told us he would be heading to the recovery room soon and the surgeon would come meet with us in a few minutes.
The surgeon explained that they had completely deflated his right lung during surgery in order to get the best look at the CCAM. Maximus struggled with that and had some respiratory distress. The surgical team worked hard to keep him stable, but they decided they needed to do a Thoracotomy after all. I'm really really glad they told me this afterwards, but the surgeon reassured me that they never let his oxygen drop low enough to cause any sort of damage. He also explained that the CCAM was rather difficult to get out of the incision site, but they were able to get it taken care of. He told us to give the nurses 30 minutes and if we hadn't heard from anyone (the waiting desk was closed by this point) that we should walk to post-op and ask them where Max was.
At 8:00 on the dot we walked down to find him, and a super nice nurse lead us to the PICU (Pediatric Intensive Care Unit) and we walked in to find them finishing getting him settled. It was the most awful feeling of Deja-vu to see all those familiar machines and monitors, but at least I knew what they all meant and what to expect from them. He was, of course intubated and swollen. He was covered in bright orange stuff and was a little pale, but he was perfect and handsome and peacefully sleeping. He continued to sleep while we got updates and everything was settled before we had to leave. They told us they would be extubating him at 6:30 am so we set our alarms for 5:45 to make it on time.
As I learned from our time in the NICU things always change and they decided to extubate him early so we were surprised to be able to see his face again when we walked in at 6:30 am. It was a hard and blur of a day getting him eating again, keeping his pain at bay, and making sure he knew we were there. I am eternally grateful for every person who has ever decided to be a nurse, because it has got to be such a hard hard job. The doctors decided he was doing so very well, he didn't need to stay in the PICU and he could move to his own room on the 3rd floor in the Pediatric Surgical Recovery Unit. We had to wait until a room opened up, but he was ready whenever one opened up. This was a HUGE surprise for us because we had been told he would spend 3-4 days in the PICU and only go to a room before he was ready to be discharged.
Around 4:00 pm while we were getting Maximus ready to eat again his nasal canula came out and fell on the floor, since he had been at 100% on the lowest setting his oxygen machine would go the RN decided to see what would happen if we left it out.
That was over 6 hours ago. That's right, for the first time in his ENTIRE LIFE Maximus is breathing completely on his own. If he keeps this up, he may not need to even be on oxygen during the day anymore. The thought of bringing him home without being hooked up to an oxygen tank makes me want to cry.
He's hoping he stays oxygen free all night!
Monday was surgery day and the initial plan of action was to do a diagnostic Laparoscopy, Thoracotomy, and lobectomy (removal of his bottom right lobe) of his right lung, in addition to repairing his inguinal hernia. At the last minute the surgeon told us wanted to avoid a Thoracotomy because the recovery and risks will be milder the other way.
They took him back at 2:35 pm and told us to expect him to be done at 5:30pm. We waited in the surgical waiting room after we got our sleeping arrangements figured out. We got a message around 5:30pm telling us he was ok, stable, and they weren't quite done yet. We got the same message at 6:30, stable and they would give us another update in an hour. At 7:00pm they told us he would be heading to the recovery room soon and the surgeon would come meet with us in a few minutes.
The surgeon explained that they had completely deflated his right lung during surgery in order to get the best look at the CCAM. Maximus struggled with that and had some respiratory distress. The surgical team worked hard to keep him stable, but they decided they needed to do a Thoracotomy after all. I'm really really glad they told me this afterwards, but the surgeon reassured me that they never let his oxygen drop low enough to cause any sort of damage. He also explained that the CCAM was rather difficult to get out of the incision site, but they were able to get it taken care of. He told us to give the nurses 30 minutes and if we hadn't heard from anyone (the waiting desk was closed by this point) that we should walk to post-op and ask them where Max was.
At 8:00 on the dot we walked down to find him, and a super nice nurse lead us to the PICU (Pediatric Intensive Care Unit) and we walked in to find them finishing getting him settled. It was the most awful feeling of Deja-vu to see all those familiar machines and monitors, but at least I knew what they all meant and what to expect from them. He was, of course intubated and swollen. He was covered in bright orange stuff and was a little pale, but he was perfect and handsome and peacefully sleeping. He continued to sleep while we got updates and everything was settled before we had to leave. They told us they would be extubating him at 6:30 am so we set our alarms for 5:45 to make it on time.
As I learned from our time in the NICU things always change and they decided to extubate him early so we were surprised to be able to see his face again when we walked in at 6:30 am. It was a hard and blur of a day getting him eating again, keeping his pain at bay, and making sure he knew we were there. I am eternally grateful for every person who has ever decided to be a nurse, because it has got to be such a hard hard job. The doctors decided he was doing so very well, he didn't need to stay in the PICU and he could move to his own room on the 3rd floor in the Pediatric Surgical Recovery Unit. We had to wait until a room opened up, but he was ready whenever one opened up. This was a HUGE surprise for us because we had been told he would spend 3-4 days in the PICU and only go to a room before he was ready to be discharged.
Around 4:00 pm while we were getting Maximus ready to eat again his nasal canula came out and fell on the floor, since he had been at 100% on the lowest setting his oxygen machine would go the RN decided to see what would happen if we left it out.
That was over 6 hours ago. That's right, for the first time in his ENTIRE LIFE Maximus is breathing completely on his own. If he keeps this up, he may not need to even be on oxygen during the day anymore. The thought of bringing him home without being hooked up to an oxygen tank makes me want to cry.
He's hoping he stays oxygen free all night!
Sunday, November 4, 2012
I have a sweet baby boy sleeping in my arms right now, which makes it hard to type, but it's sure worth it. Max turned 7 months old on the 25th of October. He celebrated his first Halloween by dressing up as Baby Batman & we hung out at home passing out candy while Daddy went trick-or-treating with E.
Also, Early Intervention came back to do his second assessment. He is still doing wonderfully. They came the day after he turned 7 months old (4 months adjusted) and he is still beyond his adjusted age!
Language Skills: 5-6 months
Gross Motor: 4-5 months
Cognitive Development: 4-5 months
Fine Motor Skills: 5-6 months
Social Development: 6 months
Self Help Skills: 5 months
16 pounds and 65 cm tall
He is physically very strong and is showing signs of getting ready to eat some 'big boy' foods'
actually, he stole a french fry last week and shoved it straight in his mouth. We got it out before he swallowed or choked on it, but for the next few minutes he kept smacking his lips. Little stinker!
On Friday we went down to PCMC-Same Day Surgery so that they could do a CT scan of his lung. Since he is still a baby they needed to put him under with anesthesia so they could get clean images. On Thursday the nurses called me to go over the schedule, he wasn't supposed to eat after 8am, and since he has never been under anesthesia they told me he and I were going to spend the night. S and E made arrangements to stay with his sister in Salt Lake, and we packed our bags. I was distraught at the fact that we would be spending the night, because that made the whole thing so much scarier. I distracted myself by packing a bag for E with some new books, stickers, coloring books, crayons and her favorite (non-perishable) snacks since it was going to be a long day for her.
Turns out, I didn't need to! PCMC had so many fun toys in their waiting room she only ended up coloring a few pages and playing with a few stickers since she was so busy playing with the toy kitchen and the other activities. Once they took Maximus back to get his CT we waited about an hour, then the nurses came to get me and take me to the recovery room. The nurses couldn't get him to take a bottle of pedialyte which worried me, until they had me try. He drank the whole thing down in 10 minutes flat, apparently he just wanted his mommy. Once Max moved out of the recovery room S and E joined us and she was so sweet to watch her check him over to make sure he was okay. She patted his back and kissed his head while asking me if he was okay. He sure was! In fact, he did so well and was my normal happy boy with just a little extra sleeping at the 4 hour mark they started talking to the Doctor if we could just go home. S and E had left after making sure all was well so that E could go play with her cousins. I was so excited to let them know that we might be going home.
Sure enough at the 5 hour mark they decided he was doing wonderfully and we didn't need to spend the night. I was so relieved! We loaded up, grabbed some dinner in the drive-thru, and went HOME!
We will meet with the follow-up NICU team on Monday, the pediatrician on Friday, and then we will finalize our plan of action. The CT scan will show us if they are going to be able to remove just the mass in his lung or if they will need to remove the bottom lobe of his lung. They didn't tell me what they found, but I will just have to accept that they will tell me when it is time. Surgery has been tentatively scheduled for the end of November if all goes well with insurance approval. Cross your fingers for us!!
Thank you for all the well wishes, the prayers, and the kindness from everyone. We are so grateful.
Also, Early Intervention came back to do his second assessment. He is still doing wonderfully. They came the day after he turned 7 months old (4 months adjusted) and he is still beyond his adjusted age!
Language Skills: 5-6 months
Gross Motor: 4-5 months
Cognitive Development: 4-5 months
Fine Motor Skills: 5-6 months
Social Development: 6 months
Self Help Skills: 5 months
16 pounds and 65 cm tall
He is physically very strong and is showing signs of getting ready to eat some 'big boy' foods'
actually, he stole a french fry last week and shoved it straight in his mouth. We got it out before he swallowed or choked on it, but for the next few minutes he kept smacking his lips. Little stinker!
On Friday we went down to PCMC-Same Day Surgery so that they could do a CT scan of his lung. Since he is still a baby they needed to put him under with anesthesia so they could get clean images. On Thursday the nurses called me to go over the schedule, he wasn't supposed to eat after 8am, and since he has never been under anesthesia they told me he and I were going to spend the night. S and E made arrangements to stay with his sister in Salt Lake, and we packed our bags. I was distraught at the fact that we would be spending the night, because that made the whole thing so much scarier. I distracted myself by packing a bag for E with some new books, stickers, coloring books, crayons and her favorite (non-perishable) snacks since it was going to be a long day for her.
Turns out, I didn't need to! PCMC had so many fun toys in their waiting room she only ended up coloring a few pages and playing with a few stickers since she was so busy playing with the toy kitchen and the other activities. Once they took Maximus back to get his CT we waited about an hour, then the nurses came to get me and take me to the recovery room. The nurses couldn't get him to take a bottle of pedialyte which worried me, until they had me try. He drank the whole thing down in 10 minutes flat, apparently he just wanted his mommy. Once Max moved out of the recovery room S and E joined us and she was so sweet to watch her check him over to make sure he was okay. She patted his back and kissed his head while asking me if he was okay. He sure was! In fact, he did so well and was my normal happy boy with just a little extra sleeping at the 4 hour mark they started talking to the Doctor if we could just go home. S and E had left after making sure all was well so that E could go play with her cousins. I was so excited to let them know that we might be going home.
Sure enough at the 5 hour mark they decided he was doing wonderfully and we didn't need to spend the night. I was so relieved! We loaded up, grabbed some dinner in the drive-thru, and went HOME!
We will meet with the follow-up NICU team on Monday, the pediatrician on Friday, and then we will finalize our plan of action. The CT scan will show us if they are going to be able to remove just the mass in his lung or if they will need to remove the bottom lobe of his lung. They didn't tell me what they found, but I will just have to accept that they will tell me when it is time. Surgery has been tentatively scheduled for the end of November if all goes well with insurance approval. Cross your fingers for us!!
Thank you for all the well wishes, the prayers, and the kindness from everyone. We are so grateful.
Friday, September 28, 2012
6 months old
Today was Max's 6 month (3 month adjusted) appointment with the pediatrician, which meant the dreaded shots!
poor little man didn't know what was coming!
He weighted 13 pounds 10 oz
50th percentile adjusted
1st percentile actual (HE IS ON THE CHART! Hallelujah! )
23.6 inches tall
50th percentile adjusted
0 percentile actual
Max is still exceeding all of his 3 month milestones and is even meeting some of his 6 month milestones.
50th percentile adjusted
1st percentile actual (HE IS ON THE CHART! Hallelujah! )
23.6 inches tall
50th percentile adjusted
0 percentile actual
Max is still exceeding all of his 3 month milestones and is even meeting some of his 6 month milestones.
He is officially sleeping between 5-6 1/2 hours at night, but he still refuses to sleep before midnight. He can sit up for a moment or two at a time by himself, loves the bumpo, the baby backpack, and always wants to have something in his mouth (especially his fingers)
Last night Max laughed at his daddy for the first time, but has been laughing at his sister for almost a month now. Apparently, he thinks she is funnier than us because E can get him laughing pretty hard, but we can do or say the exact same thing and he just smiles at us. He also thinks drooling and blowing bubbles is funny. He loves to try and mimic noises we make, but likes it even more when we mimic his noises.
Max LOVES to smile, he is a very happy baby. He's already forgiven me for those dang shots!
Max has officially been cleared neurologically,but we will be heading back down to PCMC for a surgical consult as well as meeting with a pulmonologist. Even though the plan is to wait to do surgery on the CCAM until spring, they still want to do surgery for his hernia soon.
He has also been approved for 5 rounds of Synagis starting December 1st. RSV season will be nerveracking but Synagis should help it not be as terrifying.
Max just keeps growing bigger and bigger, and we couldn't be happier. We sure love this happy boy and are so happy he is home with us. It is amazing how much he has grown in the last 6 months.
He has also been approved for 5 rounds of Synagis starting December 1st. RSV season will be nerveracking but Synagis should help it not be as terrifying.
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| one day old |
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| One Month old |
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| two months old |
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| 6 months old! |
Wednesday, September 5, 2012
Quick Update
Hello!!
Long time no see! Things are crazy over here! Can you believe Max is now 5 months old, and has been home for 2 1/2 months?
Max is still on house arrest, still on oxygen, and still getting BIG BIG BIG!
At our last Pediatrician appointment we learned:
He is gaining just over an ounce per day steadily, meaning he is 12lbs 2 oz today
His Hematocrit levels are good (I don't know the exact number)
He will probably be on oxygen for the whole winter
Surgery probably won't happen until Spring
RSV is SCARY
We are making some changes to his eating
He is a happy and strong boy!!
Yay!
Long time no see! Things are crazy over here! Can you believe Max is now 5 months old, and has been home for 2 1/2 months?
Max is still on house arrest, still on oxygen, and still getting BIG BIG BIG!
At our last Pediatrician appointment we learned:
He is gaining just over an ounce per day steadily, meaning he is 12lbs 2 oz today
His Hematocrit levels are good (I don't know the exact number)
He will probably be on oxygen for the whole winter
Surgery probably won't happen until Spring
RSV is SCARY
We are making some changes to his eating
He is a happy and strong boy!!
Yay!
Sunday, July 29, 2012
4 months old
Here are some pictures to show how much he has grown.
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| July 25th |
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| July 25th |
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| June 20th vs. July 20th |
Saturday, July 21, 2012
big, Big, BIG!
UPDATE:
Maximus will be 4 months old on Wednesday
Start Weight 3/25
2 lbs 1 oz
14 1/4 inches
Home Weight 6/19
6 lbs 6 oz
19 1/4 inches
1st Dr. Appointment 6/21
6 lbs 8oz
19 1/4 inches
2nd visit 6/29
7 lbs 2 oz
20 inches
Follow up 7/10
7 lbs 11 oz
20 inches
4 month check-up 7/20
8lbs 7oz
21 inches
He's gained an ounce a day pretty steadily since he has been home! (12 oz in the last 10 days! over 2 pounds since he's been home!!) as well as grown 2 1/4 inches. He had to get his immunizations this time, but again he handled them totally fine.
Still on oxygen--will be for a while. No biggie, except I'm ready to take a sledgehammer to his pulse-ox machine. I cannot wait for the day I can casually pick him up and move from room to room without dragging 2 machines with me. Oh, and the day I can dress him without unhooking machines and being able to quickly popping an outfit over his head will be so nice!
We have a surgical consult scheduled for the first week in August at Primary. We should find out when we will schedule the 1st surgery (hopefully the 2nd won't be for a year) and get a better idea about the severity of his Chronic Lung Disease.
He is doing GREAT! Early Intervention is having a Nutritionist visit this week as that is his only 'issue' currently that they can help him with. (not really any issues, but based on his ACTUAL age there are a few) Its possible they will just 'track' him for a few months until he is old enough to work with others in the program.
Maximus will be 4 months old on Wednesday
Start Weight 3/25
2 lbs 1 oz
14 1/4 inches
Home Weight 6/19
6 lbs 6 oz
19 1/4 inches
1st Dr. Appointment 6/21
6 lbs 8oz
19 1/4 inches
2nd visit 6/29
7 lbs 2 oz
20 inches
Follow up 7/10
7 lbs 11 oz
20 inches
4 month check-up 7/20
8lbs 7oz
21 inches
He's gained an ounce a day pretty steadily since he has been home! (12 oz in the last 10 days! over 2 pounds since he's been home!!) as well as grown 2 1/4 inches. He had to get his immunizations this time, but again he handled them totally fine.
Still on oxygen--will be for a while. No biggie, except I'm ready to take a sledgehammer to his pulse-ox machine. I cannot wait for the day I can casually pick him up and move from room to room without dragging 2 machines with me. Oh, and the day I can dress him without unhooking machines and being able to quickly popping an outfit over his head will be so nice!
We have a surgical consult scheduled for the first week in August at Primary. We should find out when we will schedule the 1st surgery (hopefully the 2nd won't be for a year) and get a better idea about the severity of his Chronic Lung Disease.
He is doing GREAT! Early Intervention is having a Nutritionist visit this week as that is his only 'issue' currently that they can help him with. (not really any issues, but based on his ACTUAL age there are a few) Its possible they will just 'track' him for a few months until he is old enough to work with others in the program.
Friday, July 13, 2012
Early Intervention
Max had an initial assessment today at our house to make him an individual tracking plan for the Early Intervention program.
The results made me SO happy! Based on his adjusted age Max is almost 3 weeks old.
Based on the assessment today Max is beyond his adjusted age.
- Gross Motor skills- 6 week old
- Cognitive Development - 6 weeks old
- Language Development - 4 weeks old
- Fine Motor Skills - 8 weeks old
- Social Development Skills-8 weeks old
Max has met all of his 1 month milestones (leg/arm control, eyes can follow toys/people, comforted by being picked up and held, etc) and all of his 2 month milestones ( grasps and holds objects for several seconds, head control while on tummy, making sounds, etc) except he isn't smiling yet. :)
They gave me a lot of exercises and things I can work with him on to keep him moving forward, as well as things to watch for.
They gave me a lot of exercises and things I can work with him on to keep him moving forward, as well as things to watch for.
Saturday, June 30, 2012
Progress!
Max had a follow-up appointment today at McKay-Dee. His eyes have corrected themselves and there is no longer any ROP. He will continue to have eye appointments every 6 months, but everything looks good!
He is 7 pounds 2 ounces and 20 inches long! Which means he has grown an inch and gained 12 ounces (in 10 days) since he left McKay-Dee. He has varied his oxygen needs from 1/8 liter (in the car) to 1/32 of a liter (if he is awake and active)
We are still fortifying breastmilk with iron supplements once per day, as well as using a special preemie fortifier in all his bottles and it seems to be working! (Thankfully, because it isn't fun to do!--makes me feel like a chemist haha!)
Our next big appointment will be August 6th at Primary Children's with the pediatric surgeon to decided what to do with the CCAM (keep waiting, I hope) as well as his hernia surgery.
He is 7 pounds 2 ounces and 20 inches long! Which means he has grown an inch and gained 12 ounces (in 10 days) since he left McKay-Dee. He has varied his oxygen needs from 1/8 liter (in the car) to 1/32 of a liter (if he is awake and active)
We are still fortifying breastmilk with iron supplements once per day, as well as using a special preemie fortifier in all his bottles and it seems to be working! (Thankfully, because it isn't fun to do!--makes me feel like a chemist haha!)
Our next big appointment will be August 6th at Primary Children's with the pediatric surgeon to decided what to do with the CCAM (keep waiting, I hope) as well as his hernia surgery.
Monday, June 25, 2012
3 months old today
I just love how everyone wants to come see Maximus now that he's home. I know he has been a fighter and a tough kiddo who has really survived a lot! I will never be able to thank everyone for their prayers and support, and so many people have been excited to come visit and meet him. Unfortunatly, Max isn't out of the woods just yet. He is, quite literally, under house arrest.
In the words of our pediatrician "Maximus is a micro-preemie, now 3 months old, with chronic lung disease of prematurity, Oxygen dependence, a CCAM--a lung tissue malformation, reflux disorder, and an inguinal hernia that will have to be surgically corrected. He is a very HIGH RISK infant and should not be in public....."
Which also means that the public can't come to him as well, a small cold can kill him. Even if you aren't sick yourself, you may have picked up germs at the grocery store, the gas station, church, or a million other places and while your immune system is strong enough to fight those germs off before you even know you have them, his is not. RSV season is coming and for a NICU baby like Max it is nightmarishly deadly, I hope and pray every day that it will be a very short season this year and that we qualify for Max to get the RSV injection every 28 days. I would much rather give him a shot every month, than have to go back to the hospital.
S and I both have to shower and/or change our clothes before holding him if we've been anywhere. E takes a bath as soon as she comes home, and we scrub her hands with a scrub brush frequently. My mom, who is willing to care for him while I am at work, also has to shower and changer her clothes before being with him.
Thankfully, this is not permanent. He will get better, he will get off the oxygen machine, he will recover from the CCAM, they can fix the hernia, and the bigger he gets the better his immune system and chronic lung disease of prematurity will be. He may have complications for a long time, or a short time we don't know yet, but in the meantime we will do everything we can to make sure he grows big enough and strong enough to meet anyone who wants to.
Thanks again for all the love, understanding, support, and prayers.
In the words of our pediatrician "Maximus is a micro-preemie, now 3 months old, with chronic lung disease of prematurity, Oxygen dependence, a CCAM--a lung tissue malformation, reflux disorder, and an inguinal hernia that will have to be surgically corrected. He is a very HIGH RISK infant and should not be in public....."
Which also means that the public can't come to him as well, a small cold can kill him. Even if you aren't sick yourself, you may have picked up germs at the grocery store, the gas station, church, or a million other places and while your immune system is strong enough to fight those germs off before you even know you have them, his is not. RSV season is coming and for a NICU baby like Max it is nightmarishly deadly, I hope and pray every day that it will be a very short season this year and that we qualify for Max to get the RSV injection every 28 days. I would much rather give him a shot every month, than have to go back to the hospital.
S and I both have to shower and/or change our clothes before holding him if we've been anywhere. E takes a bath as soon as she comes home, and we scrub her hands with a scrub brush frequently. My mom, who is willing to care for him while I am at work, also has to shower and changer her clothes before being with him.
Thankfully, this is not permanent. He will get better, he will get off the oxygen machine, he will recover from the CCAM, they can fix the hernia, and the bigger he gets the better his immune system and chronic lung disease of prematurity will be. He may have complications for a long time, or a short time we don't know yet, but in the meantime we will do everything we can to make sure he grows big enough and strong enough to meet anyone who wants to.
Thanks again for all the love, understanding, support, and prayers.
Saturday, June 23, 2012
Sunday the NICU team confirmed that we would be taking him home.....'as long as everything continues to go well'
They always make sure to have a loophole!
Even though Max hadn't completely passed his eye exam, they decided he was safe to go on 'wall air' which means we can take him home. He will have an eye check-up again on Saturday and I am hoping there will be zero signs of ROP :)
Pretty nice Fathers Day present!
McKay-Dee does something called 'rooming-in' where Max and I stay in a room....alone...overnight. It can be longer if I ask, but at least one overnight. The nurses come to bring him a bottle and check him at least every 4 hours, other than that I'm on my own.
Because of insurance issues I ended up 'rooming in' on Monday night...barely by the skin of my teeth. We were supposed to have Max set up on the exact same monitors and oxygen that he would be coming home with, but the nurses took pity on me and just let me use the hospital stuff instead. Thankfully, oh so thankfully, did it all come together so that we could make it home on Tuesday afternoon.
Rooming in SUCKED. I almost cried a million times and it made me terrified to take him home. Completely and totally scared out of my pants. I don't even want to talk about it. haha!
We survived and slowly but surely everything fell into place to come home and pulled into the driveway around 2:30pm after waiting what felt like a million years. My heart was beating like a race-horse the whole way home. Thank heavens for S who knew exactly what to say and do to help me chill.
Everything was better once we were home, and our first night (and since then) home was a CAKEWALK compared to rooming in. (No joke, it was a terrible night there)
After 87 days....our baby is FINALLY home :)
They always make sure to have a loophole!
Even though Max hadn't completely passed his eye exam, they decided he was safe to go on 'wall air' which means we can take him home. He will have an eye check-up again on Saturday and I am hoping there will be zero signs of ROP :)
Pretty nice Fathers Day present!
McKay-Dee does something called 'rooming-in' where Max and I stay in a room....alone...overnight. It can be longer if I ask, but at least one overnight. The nurses come to bring him a bottle and check him at least every 4 hours, other than that I'm on my own.
Because of insurance issues I ended up 'rooming in' on Monday night...barely by the skin of my teeth. We were supposed to have Max set up on the exact same monitors and oxygen that he would be coming home with, but the nurses took pity on me and just let me use the hospital stuff instead. Thankfully, oh so thankfully, did it all come together so that we could make it home on Tuesday afternoon.
Rooming in SUCKED. I almost cried a million times and it made me terrified to take him home. Completely and totally scared out of my pants. I don't even want to talk about it. haha!
We survived and slowly but surely everything fell into place to come home and pulled into the driveway around 2:30pm after waiting what felt like a million years. My heart was beating like a race-horse the whole way home. Thank heavens for S who knew exactly what to say and do to help me chill.
Everything was better once we were home, and our first night (and since then) home was a CAKEWALK compared to rooming in. (No joke, it was a terrible night there)
After 87 days....our baby is FINALLY home :)
Saturday, June 16, 2012
A day in the life...
Of a NICU mom. Just so I never forget nor take things for granted.
6:00am : Roll out of bed and start my morning off with pumping and measuring out milk to take to the NICU
6:30am: Pull my hair in a messy ponytail as I rush around trying to get dressed. ready, and eat something for breakfast.
6:55am: Made it to the hospital in record time! It helps that S dropped me off so I wouldn't have to find a place to park. Head up the Main Entrance Elevator to the 4th floor. What is it about the 4th floor??
7:38am- Start my scrub in process. McKay-Dee is SERIOUS about their scrubbing in and the front desk watches you to make sure you fully scrub for 3 minutes. They provide one-time-use sponges with scrubbers on the others side along with a nail pick. I am SO glad they are willing to give us these scrubbers so that I can feel confident my hands (and everyone elses) are CLEAN. I will never forget the first time I scrubbed my hands for 3 minutes straight watching the clock tick down the seconds until I could see my baby. Three Minutes is a LONG time to scrub your hands while you are trying to maintain modesty wearing a hospital gown after having a baby :)
7:41am: Check in at the NICU front desk then squirt myself 3 squirts of hand sanitizer to rub from my elbows to my cuticules. Then walk down the LONGEST hallway in the world ;) Put on more hand sanitizer after opening the door and look up at Max's monitor as I walk to his bedspace. Then I uncover him and pick him up just because I CAN do that now.
7:44am: Max and I snuggle and visit while I wait for either his nurse or RT come give me the daily update.
8:15am: The RT comes to tell me the GREAT NEWS that Max at 80mL (about 2.5 ounces) by mouth at 5:00am. Whoa Buddy! That's the most he has ever eaten in one sitting before. She continues to update me on his vitals and blood levels, which are all great. They've added eyedrops to his cares twice a day to help with his tearducts. He is on Level 2 for going home, which is halfway there, and assures me that the 'lightswitch' didn't turn off while I was away.
8:25am: Max starts acting like he is hungry so the nurse makes me a bottle to give to him. I change his diaper, take his temperature, switch his SAT probe, and measure his belly while the bottle is warming up. Hungry was an understatment as he drank 50mL in no time. Thankfully, he didn't reflux while I was burping him and he kept all 50 mL down.
9:00am: Max and I sit and rock in the rocking chair until he falls asleep...okay maybe I rocked him for much longer than it took him to fall asleep.
9:45am: Put Max back in his bed and check myself out of the NICU.
9:52am: Call S and give him the updates of the day. S tells me he won't be stopping by at lunch time, but will meet me in the NICU when he gets off work.
10:10am: Fill out the NICU calendar for Max in the waiting room, they are testing to see if he will wake up on his own if he is hungry which is the next step in his eating Level. They monitor him closely, but do not touch him or anything else that could wake him.
11:00am: He did it! He woke himself up when he was hungry, the RT tells me. I scrub-in and check back into the NICU so that I can give him another bottle!
11:15am: He is all ready to give his bottle again! He eats 65 mL this time and burps almost right away. I live for days like this! We snuggle down again and the RT brings me a glass of ice water. McKay-Dee rocks.
12:30pm: Max and I rock in the rocking chair and I chat with the RT about his progress. She lets me know that if he continues to eat everything by mouth he might be going home sooner than I think. MUCH SOONER. He has graduated to Level 3 now already and they will continue to feed him as much as he wants whenever he wants to eat. He has eaten 9 of his last 11 feedings from a bottle.
2:30pm SHIFT CHANGE for the the NICU meaning that it is closed to visitors. All visitors...and yes, mom's count as visitors. I head down to the cafeteria to eat a late lunch and keep myself busy until shift change is over.
4:00pm : Max has officially gone 24 hours since he took a feeding through his tube. As long as he goes the rest of the day without needing it they will take it out. I watch him sleep so that I don't wake him, since they are wanting him to wake on his own again. I can hardly stand not being able to pick him up and hold him anytime I want, I'm not sure how I made it through the months of sitting by his bedside holding his hand through the incubator door. Time passes quickly and painfully slowly at the same time.
4:45pm: Daddy is here! Max wakes up when he hears his voice and starts sucking on his fingers. The nurses get a bottle ready for him and S gives Max feeding number 11 of 13. Dr. Sheffield comes in while Max is eating and lets us know tomorrow they are going to check his eyes. If he is fully vascularized then they are going to switch him to 'wall air'.....which means he could go home on Monday "MAYBE" he tells me several times. He asks us if we have everything set up to bring him home and if we have our carseat installed ...uh NO! OMG I didn't think he was going to be home until July. He asks us to please bring our carseat tomorrow for the "Carseat test"
5:30pm...S and I both look at each other and I start to panic a bit, because we haven't even taken the carseat out of the box, none of his clothes are washed, and we haven't been grocery shopping in forever (mostly because I eat so many meals in the cafeteria or in the car...gee why haven't I lost any weight? ha!) We decide not to tell anyone because that big fat MAYBE is still heavy in my mind.
5:40pm Even though I usually stay until 9pm, I realize how much we have to get done to bring Max home and decide we better go.
6:38pm I start pulling the carseat out of the box at home
6:55pm We hit the Wendy's drive-throu before heading to Walmart for Clorox wipes, spray bottles, dish soap, and various other houshold supplies
11:00pm We finally crash into bed after rearanging our room to get the basinett arranged and cloroxing/lysol spraying almost everything.
Whew!
6:00am : Roll out of bed and start my morning off with pumping and measuring out milk to take to the NICU
6:30am: Pull my hair in a messy ponytail as I rush around trying to get dressed. ready, and eat something for breakfast.
6:55am: Made it to the hospital in record time! It helps that S dropped me off so I wouldn't have to find a place to park. Head up the Main Entrance Elevator to the 4th floor. What is it about the 4th floor??
7:38am- Start my scrub in process. McKay-Dee is SERIOUS about their scrubbing in and the front desk watches you to make sure you fully scrub for 3 minutes. They provide one-time-use sponges with scrubbers on the others side along with a nail pick. I am SO glad they are willing to give us these scrubbers so that I can feel confident my hands (and everyone elses) are CLEAN. I will never forget the first time I scrubbed my hands for 3 minutes straight watching the clock tick down the seconds until I could see my baby. Three Minutes is a LONG time to scrub your hands while you are trying to maintain modesty wearing a hospital gown after having a baby :)
7:41am: Check in at the NICU front desk then squirt myself 3 squirts of hand sanitizer to rub from my elbows to my cuticules. Then walk down the LONGEST hallway in the world ;) Put on more hand sanitizer after opening the door and look up at Max's monitor as I walk to his bedspace. Then I uncover him and pick him up just because I CAN do that now.
7:44am: Max and I snuggle and visit while I wait for either his nurse or RT come give me the daily update.
8:15am: The RT comes to tell me the GREAT NEWS that Max at 80mL (about 2.5 ounces) by mouth at 5:00am. Whoa Buddy! That's the most he has ever eaten in one sitting before. She continues to update me on his vitals and blood levels, which are all great. They've added eyedrops to his cares twice a day to help with his tearducts. He is on Level 2 for going home, which is halfway there, and assures me that the 'lightswitch' didn't turn off while I was away.
8:25am: Max starts acting like he is hungry so the nurse makes me a bottle to give to him. I change his diaper, take his temperature, switch his SAT probe, and measure his belly while the bottle is warming up. Hungry was an understatment as he drank 50mL in no time. Thankfully, he didn't reflux while I was burping him and he kept all 50 mL down.
9:00am: Max and I sit and rock in the rocking chair until he falls asleep...okay maybe I rocked him for much longer than it took him to fall asleep.
9:45am: Put Max back in his bed and check myself out of the NICU.
9:52am: Call S and give him the updates of the day. S tells me he won't be stopping by at lunch time, but will meet me in the NICU when he gets off work.
10:10am: Fill out the NICU calendar for Max in the waiting room, they are testing to see if he will wake up on his own if he is hungry which is the next step in his eating Level. They monitor him closely, but do not touch him or anything else that could wake him.
11:00am: He did it! He woke himself up when he was hungry, the RT tells me. I scrub-in and check back into the NICU so that I can give him another bottle!
11:15am: He is all ready to give his bottle again! He eats 65 mL this time and burps almost right away. I live for days like this! We snuggle down again and the RT brings me a glass of ice water. McKay-Dee rocks.
12:30pm: Max and I rock in the rocking chair and I chat with the RT about his progress. She lets me know that if he continues to eat everything by mouth he might be going home sooner than I think. MUCH SOONER. He has graduated to Level 3 now already and they will continue to feed him as much as he wants whenever he wants to eat. He has eaten 9 of his last 11 feedings from a bottle.
2:30pm SHIFT CHANGE for the the NICU meaning that it is closed to visitors. All visitors...and yes, mom's count as visitors. I head down to the cafeteria to eat a late lunch and keep myself busy until shift change is over.
4:00pm : Max has officially gone 24 hours since he took a feeding through his tube. As long as he goes the rest of the day without needing it they will take it out. I watch him sleep so that I don't wake him, since they are wanting him to wake on his own again. I can hardly stand not being able to pick him up and hold him anytime I want, I'm not sure how I made it through the months of sitting by his bedside holding his hand through the incubator door. Time passes quickly and painfully slowly at the same time.
4:45pm: Daddy is here! Max wakes up when he hears his voice and starts sucking on his fingers. The nurses get a bottle ready for him and S gives Max feeding number 11 of 13. Dr. Sheffield comes in while Max is eating and lets us know tomorrow they are going to check his eyes. If he is fully vascularized then they are going to switch him to 'wall air'.....which means he could go home on Monday "MAYBE" he tells me several times. He asks us if we have everything set up to bring him home and if we have our carseat installed ...uh NO! OMG I didn't think he was going to be home until July. He asks us to please bring our carseat tomorrow for the "Carseat test"
5:30pm...S and I both look at each other and I start to panic a bit, because we haven't even taken the carseat out of the box, none of his clothes are washed, and we haven't been grocery shopping in forever (mostly because I eat so many meals in the cafeteria or in the car...gee why haven't I lost any weight? ha!) We decide not to tell anyone because that big fat MAYBE is still heavy in my mind.
5:40pm Even though I usually stay until 9pm, I realize how much we have to get done to bring Max home and decide we better go.
6:38pm I start pulling the carseat out of the box at home
6:55pm We hit the Wendy's drive-throu before heading to Walmart for Clorox wipes, spray bottles, dish soap, and various other houshold supplies
11:00pm We finally crash into bed after rearanging our room to get the basinett arranged and cloroxing/lysol spraying almost everything.
Whew!
Friday, June 15, 2012
The Lightswitch
Max continued to do well his first week back at McKayDee eating most of his food by mouth, Thursday June 14th the nurses and Respiratory Therapist decided the 'lightswitch' had turned on and Max was eating almost everything by mouth. He had ONE feeding in his feeding tube in the middle of the night (early Friday morning). He has made so much PROGRESS! and I absolutely LOVE being able to feed him instead of standing by while a nurse hooks him up to a machine that feeds him.
Sunday, June 10, 2012
McKay-Dee
Monday afternoon the PCMC NICU NNP (Ha!) Translation: Primary Childrens Neonatal Intensive Care Unit Neonate Nurse Practitioner. Anyway, she told me they had several babies being admitted, and since we had requested a transfer we were first on the list to move due to them needing beds for the incoming babies. She told me the Life Flight team was ready to move him once they got my consent. I had a minor panic attack until she reminded me that the team who moves individuals to and from PCMC is called the Life Flight and he was going to be transferred by ambulance. He did amazing during the transfer and slept the whole time. It was so nice to be back at McKay-Dee and Dr. Schaffer even jokingly told us 'Welcome Home' He was in a different room than he was originally, which was nice because it was in a section with no other babies. Solomon and I took turns holding and talking to him when he was awake.
Tuesday they ran some tests and decided they wanted to continue with the 'darby' as his hematocrit was at a 30. They also decided to discontinue his sodium and iron levels to see how he would do. It was so nice to be able to sit and hold him for hours without so many people coming in and out all the time. OTPT did her assessment and decided it was time to try and see how he would do eating on his own, and Solomon was even able to join us. Max was able to latch, suck, and swallow for several minutes while remembering to breathe. He would suck and swallow a few times, then stop and breath--almost like he was panting- then suck and swallow again. Even when he choked he didn't dsat like he had been doing before, and went right back at it until he got the hiccups. Wednesday they moved him back to his original bedspace and it was the strangest deja-vu feeling to walk in the room. The feeling passes quickly though, as he is the only baby in a bed instead of incubator. I want to walk around to all the mom's and hug them.
Since then Max's has continued to improve by leaps! His oxygen has gone from 2 liters/minute to 0.2 liters/minute as of today. He has done both nursing and bottle feedings and doing better and better each time. Today I started nursing him, and then shift change (I HATE shift change) began so I had to leave, the nurse noticed he was still trying to eat and sucking on his blanket so she gave him a bottle and HE FINISHED IT!!!!
Primary Childrens is a phenomenal place to be, and I will forever be in-debt to them for literally saving my son's life. I know there is no possible way for me to Thank everyone who we worked with and who took care of Max.
However, McKay-Dee has made my heart lighter and they are a wonderful hospital as well. I've experienced them before (with S who had surgery a year ago) and have nothing but good things to say about them. We are so close to coming home I can almost feel it! I'm still hoping for a June date to come home, but it may be July and I have made peace with that.
He is weighing in at 5lbs and 13.8 oz tonight and still doing great at 0.2 liters of oxygen, I'm hoping he comes home without oxygen support, but I'm not holding my breath, and I'm trying to prepare for it. He has improved so dramatically the last 6 days that I can't wait to see what he does next week.
Again, I cannot express my gratitude enough for all the prayers, concern, love, kindness, generosity, and support we have received from everyone. Thank you from the very bottom of my heart.
Sunday, June 3, 2012
Our Million Dollar Max ;)
Max is continuing to do well and is growing. Tonight he weighed 5 pounds 9 oz and was 17 3/4 inches long. He is continuing to work on eating, and on Friday we took turns dipping a binkie in milk, and putting it in his mouth so he becomes excited and familiar with the positives of eating by mouth. I can imagine it being quite scary for him when he chokes so we are trying to make eating as positive as possible. OTPT has continued to work on him eating from a bottle, though he never eats more than a few ml at a time he is doing so well at it. He is showing signs of wanting to eat, and is actually quite aggressive with getting it into his mouth, (OTPT jokes it reminds her of a shark attack!) once he gets it into his mouth he struggles to remember to swallow and/or breathe.
He has recently begun to have a hard time with reflux, and they weren't sure if it was because of one of his medications, or if it was legit reflux so they have discontinued his medication to try. The medication they were giving him was a stimulant to help his body remember to breathe on its own. Ah...the circle of it all. :)
Sort of like the circle of his high-flow cannula. The CCAM means he has a significantly lower lung capacity on his right side, so he needs a HFNC (high-flow nasal cannula), HFNC means he can't eat on his own (the nurse explained it like running up several sets of stairs and then trying to drink a glass of water--yikes!) BUT the more he eats, the bigger he gets and the bigger he gets, the less oxygen he needs (because the bigger his lungs, the less the CCAM impacts his lung) and the less he needs the HFNC.
All things considered Max is doing amazingly well and we actually sent in a request he be transferred back to McKay-Dee. Everyone has signed off on the transfer so far except our insurance. We are really hoping they will sign off on it tomorrow and he can move back to McKay-Dee this week. The fact that the MD, NNP, and surgeon all feel like he is stable enough to move to a lower Level IV NICU makes me so very happy. It would truly be so great to have him within a 40 minute drive, instead of an hour and 40 minutes. We will both be able to spend so much more time with him, and I will even be able to spend a few nights there. Another, less important detail is that we won't be spending so much on gas, as I can honestly say I have never been so poor in my life.
I try not to look at our bills yet, as so far Max has racked up about 5 houses worth thus far. We have begun to call him 'Million Dollar Max' and with his surgery he may end up going over that amount. Thankfully we have insurance, so we don't actually have to PAY that much. It will be a nice nickname for him, and oh the stories he can tell. I'm pretty sure he will kick butt at the 'Two Truths and a Lie game' when he grows up! :)
I again am so grateful for the prayers, the kindness, the support, and the love we have felt from everyone. I look around at the NICU and am grateful for how well he is doing and all the health problems and complications he doesn't have, and I truly believe it is because of all the support we have gotten from everyone. I know he wouldn't be doing as well as he is, and be stable enough to move closer to home without it.
He has recently begun to have a hard time with reflux, and they weren't sure if it was because of one of his medications, or if it was legit reflux so they have discontinued his medication to try. The medication they were giving him was a stimulant to help his body remember to breathe on its own. Ah...the circle of it all. :)
Sort of like the circle of his high-flow cannula. The CCAM means he has a significantly lower lung capacity on his right side, so he needs a HFNC (high-flow nasal cannula), HFNC means he can't eat on his own (the nurse explained it like running up several sets of stairs and then trying to drink a glass of water--yikes!) BUT the more he eats, the bigger he gets and the bigger he gets, the less oxygen he needs (because the bigger his lungs, the less the CCAM impacts his lung) and the less he needs the HFNC.
All things considered Max is doing amazingly well and we actually sent in a request he be transferred back to McKay-Dee. Everyone has signed off on the transfer so far except our insurance. We are really hoping they will sign off on it tomorrow and he can move back to McKay-Dee this week. The fact that the MD, NNP, and surgeon all feel like he is stable enough to move to a lower Level IV NICU makes me so very happy. It would truly be so great to have him within a 40 minute drive, instead of an hour and 40 minutes. We will both be able to spend so much more time with him, and I will even be able to spend a few nights there. Another, less important detail is that we won't be spending so much on gas, as I can honestly say I have never been so poor in my life.
I try not to look at our bills yet, as so far Max has racked up about 5 houses worth thus far. We have begun to call him 'Million Dollar Max' and with his surgery he may end up going over that amount. Thankfully we have insurance, so we don't actually have to PAY that much. It will be a nice nickname for him, and oh the stories he can tell. I'm pretty sure he will kick butt at the 'Two Truths and a Lie game' when he grows up! :)
I again am so grateful for the prayers, the kindness, the support, and the love we have felt from everyone. I look around at the NICU and am grateful for how well he is doing and all the health problems and complications he doesn't have, and I truly believe it is because of all the support we have gotten from everyone. I know he wouldn't be doing as well as he is, and be stable enough to move closer to home without it.
Thursday, May 31, 2012
baby steps
On May 22nd Max took his first try at a bottle, OTPT came in to talk to me about the steps they were going to take and what I could do to prepare myself for the next step. It was perfect timing, since he was awake and showing cues he was hungry. Max drank 2ml and didn't choke at all! I was so proud of him, the next day he drank 3 ml and on Friday he drank almost 4 ml. He is doing well at not choking, but he occasionally forgets that he is supposed to suck on the bottle, swallow the milk, AND breathe. We are working in the right direction though. :) He is only on 2 medications--sodium and iron both of which he is making on his own, but not quite enough yet. Both of these are given through his feeding tube so he is still needle free.
More great news is that he has grown so much that he is too long for preemie clothes, but newborn size still drowns him. So, I have been searching for preemie outfits without the 'feet' so that he can wear clothes that fit him but still allow for the wires, leads, and tubes. This is not an easy task. Max has gotten quite long actually, mostly in his legs I have a feeling he is going to be taller than me way before I want him too.
We are taking baby steps forward on a daily basis and we are starting to get some signs of coming home. I'm so grateful for everyones support and kindness. Many friends have asked questions and someone suggested I do a little Q & A on here. :)
More great news is that he has grown so much that he is too long for preemie clothes, but newborn size still drowns him. So, I have been searching for preemie outfits without the 'feet' so that he can wear clothes that fit him but still allow for the wires, leads, and tubes. This is not an easy task. Max has gotten quite long actually, mostly in his legs I have a feeling he is going to be taller than me way before I want him too.
We are taking baby steps forward on a daily basis and we are starting to get some signs of coming home. I'm so grateful for everyones support and kindness. Many friends have asked questions and someone suggested I do a little Q & A on here. :)
- How much does he weigh?
5 pounds 4oz as of last night :) He's got quite the double chin going on.
- Doesn't 5 pounds that mean he can come home?
No, he has to be able to breathe on his own (with or without oxygen) with no apnea's (stopping breathing) and no bradycardia (his heartbeat quickly slowing down) for 7 days in a row. So far, we aren't to 1 day yet. Though he is 'fixing' both of these problems on his own--without help from the nurses which is a HUGE step in the right direction. They have turned his oxygen down to 2 liters/minute and even though they tried to turn him down to 1.5 mL on Friday, and turned it back up to 2 it has been a perfect amount for now.
He also has to eat on his own, yesterday they gave him 5mL with a syringe which is the most he has swallowed as of yet, I was so proud of him. (5mL= 1 teaspoon)
They told me yesterday that if he can eat MOST of his food by mouth, then he can come home with a feeding tube temporarily. He has been eating 320ml a day, which is about 10 ounces. - So... when is he coming home?
I wish I knew, it is all up to him, as it always has been. It is still looking like late June-early July will be when we get to all come home as a family. - Is his hematocrit level up yet? Not all the way, though it is on its way up. He has gone from 23 to 29 and it needs to be above 35 before it is considered 'good'. Almost there! He is still recieving extra iron with every feeding as well as continuing with the 'darby' injection once a week.
- How is the ROP?
Max has Stage 1 (minimal) ROP and is vascularized to Zone 3. This means he has minor retonopothy, but they are not concerned because once he is fully vascularized he will no longer have the risks associated with ROP (mainly blindness) At that point they will increase his oxygen percentage and lower his liters/minute hoping that he won't have to come home on oxygen. That is the short story, if you want the long story...email me :) - What color is his hair?
That depends on who you ask! All the NICU nurses call him a redhead, and I think it is too. Solomon thinks that while it has some red in it, it is mostly blonde. He doesn't think the red will stay and we will have a towhead. Either way he has a lot of hair, though it is fine and very light colored, it is getting long. Yesterday, my favorite NICU nurse told me that she thinks he may need a haircut before he comes home because it is going up and over his oxygen cannula. I'm certain that means he has his daddy's hair genes. - Do you see him every day?
Almost. - Are you living down in SLC now?
No, I drive down to see him or take FrontRunner/Trax
FrontRunner/Trax is cheaper than driving our Jeep, but it also means I spend 5 hours commuting instead of 3. I weigh the pros & cons depending on the day. - When will the surgery on his lungs be? Oh...another question I can't answer. It depends on the day, week, doctor, surgeon, and color of the sky. I've heard everything from 6 pounds to 1 year old. Most recently it has bounced between September and January. These are his '6' month marks, September being his 'actual' age of being 6 months. January being his 'adjusted' age of 6 months. Max will be using his 'adjusted' age for a while.
Since we are still not to my due date (June 25th) we are going by 'gestational' age, which is how pregnant I would be...if I was still pregnant. This means he is gestationally 36 weeks old, though he is measuring at about 34 weeks. This is because of a few setbacks he has encountered in the NICU, these setbacks don't seem to be effecting him as much as anticipated and seem to be mainly evident in his size.Adjusted age is the age of the baby based on his due date. Healthcare providers may use this age when they evaluate the baby's growth and development. So, if a baby is 6 months old, but was born two months early, his adjusted age is 4 months. --babycenter.com
I think I've covered everything, though if I haven't feel free to ask.
Tuesday, May 22, 2012
Onward & Upward
May 13, 2012
Mothers Day meant getting to hold Max for 3 1/2 hours straight. PCMC made a nice effort to make me feel good, but it was still hard. Sundays are always hard, because I work Mondays & Wednesdays. I try and soak it all in on Sunday so that I can make it through Monday.
Max's hematocrit or "crit" level is back down again. Which means his body is not producing enough blood cells. It is normal for this to happen, but it should have gone back up by now. They are concerned, especially since it is causing problems with his resperatory rate, heartrate, and O2 requirements. The 3 things Max has to be able to do completley (in order for him to come home) are
1. Breathe on his own, he is almost there! They will allow him to come home on a small amount of oxygen if that is the only thing keeping him at PCMC. However on Sunday it was at 4 liters/ minute. This is still considered 'high flow' which means he cannot breathe on his own.
2. Maintain his own body temperature. The fact that I held him for 3 1/2 hours on Sunday without a drop in his body temperature means he may be ready to move to a crib very soon!
3. Eat all of his foods by mouth. Basically, be able to suck, swallow, and breathe all at the same time either from a bottle or nursing. This is why they have been giving him binkies, so that they can monitor his ability to suck and breathe at the same time, before introducing the swallowing part of it.
The hematocrit is affecting his ability to do all of those, except maintain his body temperature. He is still gaining weight, and doing well otherwise.
May 15, 2012
Max's Hematocrit is still too low, so they are giving him a medication called darbepoetin or 'darby'. This will help him increase his red blood cells, until he is able to do so himself. If the darby doesn't help, it means Max will have to have a blood transfusion. This would be quiet the setback. He has had this medication before, but for the first time it was a shot instead of through an IV. He wimpered a little, but handled it well. It was a learning experience for me, because he handled it better than I did. I'm sure this will continue to happen, meaning I expect it to be worse than it is and Max handles life like a pro.
May 17, 2012
At 5:00am The NICU team decided to move my Max into a crib. I was beyond excited. It was the second best day in the NICU for us, (the first being the day he came off the broncotron aka my worst nightmare) and I practically floated the rest of the day. The reason I was so very excited is because not only does that mean Max has checked off a step to going home, but it also means I don't have to get permission from someone else to hold my baby. It means I don't have to sit in a rocking chair by his bedside and wait for a nurse to disconect and reconnect every wire and tube he is attached to in order for them to place him in my arms. It also means that I no longer have to tell a nurse 'no' when she asks me if I wanted her to get him out, because I know if I wait until after his cares are done I can hold him for 30 minutes longer than if I held him when she asked. (I got really good at timing when I held him in order to squeeze every second I could out of my allowed time to get him out of the incubator) Also, the reason I was so excited to hold him for 3 1/2 hours on Mothers Day. He is making so much progress and doing so well. If only we can get the crit level undercontrol !!!
to be continued....
;)
Mothers Day meant getting to hold Max for 3 1/2 hours straight. PCMC made a nice effort to make me feel good, but it was still hard. Sundays are always hard, because I work Mondays & Wednesdays. I try and soak it all in on Sunday so that I can make it through Monday.
Max's hematocrit or "crit" level is back down again. Which means his body is not producing enough blood cells. It is normal for this to happen, but it should have gone back up by now. They are concerned, especially since it is causing problems with his resperatory rate, heartrate, and O2 requirements. The 3 things Max has to be able to do completley (in order for him to come home) are
1. Breathe on his own, he is almost there! They will allow him to come home on a small amount of oxygen if that is the only thing keeping him at PCMC. However on Sunday it was at 4 liters/ minute. This is still considered 'high flow' which means he cannot breathe on his own.
2. Maintain his own body temperature. The fact that I held him for 3 1/2 hours on Sunday without a drop in his body temperature means he may be ready to move to a crib very soon!
3. Eat all of his foods by mouth. Basically, be able to suck, swallow, and breathe all at the same time either from a bottle or nursing. This is why they have been giving him binkies, so that they can monitor his ability to suck and breathe at the same time, before introducing the swallowing part of it.
The hematocrit is affecting his ability to do all of those, except maintain his body temperature. He is still gaining weight, and doing well otherwise.
May 15, 2012
Max's Hematocrit is still too low, so they are giving him a medication called darbepoetin or 'darby'. This will help him increase his red blood cells, until he is able to do so himself. If the darby doesn't help, it means Max will have to have a blood transfusion. This would be quiet the setback. He has had this medication before, but for the first time it was a shot instead of through an IV. He wimpered a little, but handled it well. It was a learning experience for me, because he handled it better than I did. I'm sure this will continue to happen, meaning I expect it to be worse than it is and Max handles life like a pro.
May 17, 2012
At 5:00am The NICU team decided to move my Max into a crib. I was beyond excited. It was the second best day in the NICU for us, (the first being the day he came off the broncotron aka my worst nightmare) and I practically floated the rest of the day. The reason I was so very excited is because not only does that mean Max has checked off a step to going home, but it also means I don't have to get permission from someone else to hold my baby. It means I don't have to sit in a rocking chair by his bedside and wait for a nurse to disconect and reconnect every wire and tube he is attached to in order for them to place him in my arms. It also means that I no longer have to tell a nurse 'no' when she asks me if I wanted her to get him out, because I know if I wait until after his cares are done I can hold him for 30 minutes longer than if I held him when she asked. (I got really good at timing when I held him in order to squeeze every second I could out of my allowed time to get him out of the incubator) Also, the reason I was so excited to hold him for 3 1/2 hours on Mothers Day. He is making so much progress and doing so well. If only we can get the crit level undercontrol !!!
to be continued....
;)
Tuesday, May 15, 2012
7 weeks!
I just got off the phone with the NICU who informed me that Max is
nearly double his birth weight. He weighed in at 4 pounds tonight, 17
1/4 inches long, and eating 32 mL for each feeding which is just over
an ounce. The funnest news of all is that he officially has outgrown
something! He has a pair of booties with a matching hat that was made
by the wife of my dad's friend from work. She gave Max a small,
medium, and large size set of Preemie bootie and hat combos and he
has now grown into the medium set. It makes my heart so happy that he
has grown so much.
The only 'not so great' news is they turned him back up to 4 liters/minute of oxygen after dropping it to 3.5 on Saturday night. I am not taking this as a step backwards, but more as a preventative measure to make sure he doesn't take a step backwards.
His other progress towards coming home is coming along so well! He no longer needs heated blankets when he is out of the incubator to keep warm while we hold him and he hasn't had a single problem sucking on the newborn sized binkie they gave him. I'm hoping he is able to move into a crib SOON! (and not just because that means I can hold him more often) like I mentioned in the previous post (but failed to explain) 2000 grams is the 'magic' weight where they will move him into the crib as well as trying bottle feedings-- give or take a few grams. Nearly there!
While we still have a lot of unknown as far as the CCAM (cyst) goes, it doesn't seem to be holding him back. I hate that it is always lingering in the back of my mind, but I believe that has more to do with the fact that there hasn't been a definitive answer as far as surgery goes. I am however, making an effort to keep those thoughts in the back of my mind and keep the progress and positive in the front. ;)
Saturday we brought his big sister to meet him for the very first time. She has done very well understanding that her brother is 'too small' and 'too sick' to come home yet, and was beyond excited when she found out she would finally get to see him for the first time. She told everyone she encountered that on Saturday she was going to visit 'her baby' at the 'hop-i-stal'. We have been showing her pictures and videos of him since he was born, so she would understand that he has machines that 'help him feel better' and 'help him grow bigger' to ensure she was not overwhelmed or scared of all the monitors or the beeping machines. To say she did well would be an understatement. She followed exactly step-by-step what S told her and showed her while washing her hands and putting on Avagard and she was so very careful to not touch anything afterwards. We got her a chair to kneel on beside his incubator and she whispered 'Oh! I can see my brother. Hi Max' in the sweetest voice I have ever heard from her. She quietly asked us questions about him and the machines he is on, and when the nurse asked her if she wanted to hold his hand, the excitement and awe in her face broke my resolve and the tears just started coming. We never even had to tell her to be gentle because she looked right at me and said 'I will be soft, ok' It is one thing to see his tiny fingers in my hand, but it is priceless to see them in his 3 year old sisters hand. She broke into a huge grin and whispered again "Look! he's holding my hand" A few hours later, when I was holding him she and S came back she was surprised to see him out of the incubator and came right over to me saying 'You get to HOLD him!!" I asked her if she wanted to touch him and lifted the blanket up. She so very softly patted his back with a huge grin on her face, then told me 'you gotta be quiet huh, because he is sleeping." though she herself hadn't raised her voice above a whisper since we got to the NICU. I told her over and over how proud I was of her for being such a good girl, but I don't know if she really grasp how great she really did. It was every moment beyond what I expected.
(ps. anyone know the deal with the pictures? I can only upload a picture from my phone IF I wrote the blog on my phone. Pictures don't work at all from my computer!)
The only 'not so great' news is they turned him back up to 4 liters/minute of oxygen after dropping it to 3.5 on Saturday night. I am not taking this as a step backwards, but more as a preventative measure to make sure he doesn't take a step backwards.
His other progress towards coming home is coming along so well! He no longer needs heated blankets when he is out of the incubator to keep warm while we hold him and he hasn't had a single problem sucking on the newborn sized binkie they gave him. I'm hoping he is able to move into a crib SOON! (and not just because that means I can hold him more often) like I mentioned in the previous post (but failed to explain) 2000 grams is the 'magic' weight where they will move him into the crib as well as trying bottle feedings-- give or take a few grams. Nearly there!
While we still have a lot of unknown as far as the CCAM (cyst) goes, it doesn't seem to be holding him back. I hate that it is always lingering in the back of my mind, but I believe that has more to do with the fact that there hasn't been a definitive answer as far as surgery goes. I am however, making an effort to keep those thoughts in the back of my mind and keep the progress and positive in the front. ;)
Saturday we brought his big sister to meet him for the very first time. She has done very well understanding that her brother is 'too small' and 'too sick' to come home yet, and was beyond excited when she found out she would finally get to see him for the first time. She told everyone she encountered that on Saturday she was going to visit 'her baby' at the 'hop-i-stal'. We have been showing her pictures and videos of him since he was born, so she would understand that he has machines that 'help him feel better' and 'help him grow bigger' to ensure she was not overwhelmed or scared of all the monitors or the beeping machines. To say she did well would be an understatement. She followed exactly step-by-step what S told her and showed her while washing her hands and putting on Avagard and she was so very careful to not touch anything afterwards. We got her a chair to kneel on beside his incubator and she whispered 'Oh! I can see my brother. Hi Max' in the sweetest voice I have ever heard from her. She quietly asked us questions about him and the machines he is on, and when the nurse asked her if she wanted to hold his hand, the excitement and awe in her face broke my resolve and the tears just started coming. We never even had to tell her to be gentle because she looked right at me and said 'I will be soft, ok' It is one thing to see his tiny fingers in my hand, but it is priceless to see them in his 3 year old sisters hand. She broke into a huge grin and whispered again "Look! he's holding my hand" A few hours later, when I was holding him she and S came back she was surprised to see him out of the incubator and came right over to me saying 'You get to HOLD him!!" I asked her if she wanted to touch him and lifted the blanket up. She so very softly patted his back with a huge grin on her face, then told me 'you gotta be quiet huh, because he is sleeping." though she herself hadn't raised her voice above a whisper since we got to the NICU. I told her over and over how proud I was of her for being such a good girl, but I don't know if she really grasp how great she really did. It was every moment beyond what I expected.
(ps. anyone know the deal with the pictures? I can only upload a picture from my phone IF I wrote the blog on my phone. Pictures don't work at all from my computer!)
Thursday, May 10, 2012
Now where was I?
Max is now 6 weeks old (nearly 7) He has regained all the weight he lost (down to 2lbs 15 oz) and tonight weighed in at 3lbs 12 oz! 2000 grams is the 'magic number'
He is still struggling with 'swinging' which means his oxygen need fluctuate. Sometimes he can fix this himself, other times he can't and they have to adjust it for him.
Since putting him on the high flow nasal cannula they have decreased his liters/minute very slowly and he is down to 4 liters/minute today! They have also increased his parameters from the 88%-94% range to the 92%-98% range. All great news!
We had a bit of a scare last week, where the opthamologist came to check his eyes and they thought he had Stage 4 ROP. Max has many of the risk factors for having ROP and it has been a concern in the back of my mind since I first learned about it (which was when the NICU doctors came to talk to me after my water broke) Turns out, the opthamologist has bad handwritting (ha!) because he actually wrote a 1 and everyone thought it was a 4. On Tuesday when they checked his eyes again, it had corrected itself and it is no longer a concern. His eyes actually look great, though there is still a risk of myopia (nearsightedness) but I am nearsighted so I'm not too worried anymore.
Max has graduated to the 'big boy' binkie, and it is a legit newborn binkie. I'm sure many of you know about the green soothie pacifiers. He actually LOVES it, which makes sense in a Murphy's Law kind of way since S and I were not going to use binkies. :) Of course I've given up on making any sort of plans, because he sure has shown me he has his own agenda. They've told me if he continues to do well with a binkie they may try to bottle feed him as soon as next week, but again...its all up to Max.
He is still struggling with 'swinging' which means his oxygen need fluctuate. Sometimes he can fix this himself, other times he can't and they have to adjust it for him.
Since putting him on the high flow nasal cannula they have decreased his liters/minute very slowly and he is down to 4 liters/minute today! They have also increased his parameters from the 88%-94% range to the 92%-98% range. All great news!
We had a bit of a scare last week, where the opthamologist came to check his eyes and they thought he had Stage 4 ROP. Max has many of the risk factors for having ROP and it has been a concern in the back of my mind since I first learned about it (which was when the NICU doctors came to talk to me after my water broke) Turns out, the opthamologist has bad handwritting (ha!) because he actually wrote a 1 and everyone thought it was a 4. On Tuesday when they checked his eyes again, it had corrected itself and it is no longer a concern. His eyes actually look great, though there is still a risk of myopia (nearsightedness) but I am nearsighted so I'm not too worried anymore.
Max has graduated to the 'big boy' binkie, and it is a legit newborn binkie. I'm sure many of you know about the green soothie pacifiers. He actually LOVES it, which makes sense in a Murphy's Law kind of way since S and I were not going to use binkies. :) Of course I've given up on making any sort of plans, because he sure has shown me he has his own agenda. They've told me if he continues to do well with a binkie they may try to bottle feed him as soon as next week, but again...its all up to Max.
Sunday, April 29, 2012
Finally
After 28 days of patiently, & not so patiently waiting, I finally got to hold Max again. He its so much bigger than last time, and he did great maintaining his body temperature for over an hour while I held him and tried to memorize his tiny features.
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