DAY THIRTY-FIVE

I had a great night, I had excellent blood test results last night and this morning. Mom and Dad had a care conference with the doctor right by my bed and right now a lot of things are going to remain the same, which is not all bad, the doctor wants to give me plenty of time to grow and mature. Things that have changed include, increasing my amount of milk again, now I will get 4 ounces over a 24-hour period and the doctor says because of this he can remove my IV by Sunday. I no longer need additional nutrition, Mom's milk is enough. Because my blood tests have been good lately the doctor says that we only need to draw blood once a day instead of twice. In the next two weeks the doctor is planning some routine tests, including, an eye exam and my third brain scan. Also within the next couple of weeks the doctor plans to take me off the ventilator. He told Mom and Dad today that most preemies stay on the ventilator until 32 weeks of age and I am at 29 weeks 4 days. So to say the least the next couple of weeks will be very busy and hopefully follow the plan set forth by my doctor, but as we know God's plan is the one that we follow, so please continue praying because that has gotten us where we are and will continue us on the right path.

DAY THIRTY-FOUR

Today started out as another plateau day, but by the end of the day things had improved. The day began with no changes being made to the ventilator and the nurses discussed now I was between a rock and a hard place because I need the ventilator to help me breathe, but the breathing tube can cause increased secretions. My weight went up to two pounds and four ounces and I grew by a quarter of an inch. So although I am having breathing problems, it is to be expected because I am a preemie. The important thing to remember is that I am making gains both in weight, length and lung maturity, the rest happens on God's timetable, not ours.

DAY THIRTY-THREE

I had a great night and the day started off well, I got a bath this morning! The nurses are still dealing with the secretions from my lungs, but today was better then yesterday. I am still on 12cc of milk, but the doctor requested that a caloric supplement be added to my milk. Milk has 20 calories and the doctor wants me to have 22 calories with each feeding, to continue my weight gain. I moved to a bigger snuggie, but I still do not keep my feet in which frustrates my nurses, but I am not being bad, I promise, because the Occupational Therapist has started exercising my left foot and says that the snuggie is limiting my range of motion in that foot. Hey, I guess that is another big life lesson, you cannot please all the people all the time. When Mom came to see me at 5:00 p.m., they had to increase my ventilator settings because of ongoing secretions. When they took my blood this evening, they figured out that I was not getting rid of the carbon dioxide in my body as well as I had yesterday and that is more than likely due to the build up of secretions in my lungs that I am trying to get rid of. This is not a huge step back but as you know Mom and Dad are really wanting me to be weaned of the ventilator so they can hold me.

DAY THIRTY-TWO

The doctor upped my amount of milk from 10cc to 12cc. The morning started off well for me, I finished my steroids and was feeling good! My ventilator settings were being lowered and the doctor talked about taking out the breathing tube and taking me off the ventilator. Then as the day wore on I was having trouble breathing due to secretions in my lungs, mouth and breathing tube. Secretions are a good thing, they indicate that my lungs are maturing and that I am attempting to get rid of the excess fluid, much like a grown-up with a cough. Secretions can be bad because I cannot regulate my own breathing as well and need increased support from the ventilator. In addition, I was having such trouble that the nurse had to "bag" me twice. This sounds drastic, but this is all a part of the roller coaster ride that preemies take before they go home. Mom and Dad have a love/hate relationship with the ventilator because they understand that it helps me, but at the same time they look forward to the day that I am not as dependent on it. REMEMBER, when I get rid of this ventilator, Mom and Dad can hold me again. Please continue to pray that I gain strength.

DAY THIRTY-ONE

Today was very similar to yesterday. My vent settings remain in the 30s and I got my last shot of steroids. Some changes today included getting more milk, YEAH! I now get 10cc every three hours and I needed a blood transfusion, this is because the nurses draw a lot of blood and I cannot replenish what they take, so I need help. The nurses continue to tell Mom and Dad that they expect to wean me off the vent sometime this week and move me to a CPAP machine. Between you and me, Mom is very excited about this but tells me to do my best everyday and not rush getting better. The nurses did caution that once they move me to the CPAP I may get tired after a couple of days of breathing on my own without a lot of help and may need to be put back on the vent so I can rest. Please continue to keep me in your prayers and know that Mom and Dad talk to me all the time about everyone who is praying for me and wanting me to get better so they can meet me.

DAY THIRTY

My x-ray was much better, repositioning the breathing tube really helped. I am up to 7cc of milk now every three hours. I got my vent settings down to the low 30s and hopefully I will be moved to the CPAP machine next week when I finish with my steroids come Sunday. I am also loving touch times a whole lot better and my breathing remains stable while I am being taken care of by Mom, Dad and the nurses.

DAY TWENTY-NINE

Today was another plateau day. Mom spoke to the doctor again today and she said that the x-ray of my lungs was OK, not great, just OK. The doctor did show Mom my pictures and pointed out that my breathing tube was situated to high, it is suppose to be positioned below my collar bones and the picture showed that it was above my collar bones, that could be one reason the x-ray was just OK looking and not great. She reminded Mom that the steroids will continue through Sunday and then the following 24-48 hours would be important to see how I would do on my own without the steroids. When Mom was talking to my nurse she mentioned that I was breathing over the ventilator quite a bit and Mom asked if that was good or bad and the nurse said "both", it is good because he is showing us he can breath on his own, but bad because he is not letting the machine do the work for him.

As you know I have a mind of my own already and I am going to do things in my own time! Need I remind you who my parents are? ANYWAY, it is the end of the fourth week and I am not on the C-PAP machine yet, but maybe next week after I finish the steroids. I cannot believe that I have been in the NICU for a month already! God is good and he answers prayers!

DAY TWENTY-EIGHT

I woke up with fluid on my lungs, so the doctor gave me a diuretic to help draw the fluids out of my body. That happened at 11:00 a.m. and by 2:00 p.m, when Mom saw me again I had a REALLY full diaper. My ventilator settings have stayed the same since yesterday, so no news is good news. The doctor also decided to wean me off of my sedative according to a schedule and not "as needed", which may have been too hard for me.

I finally got to wear clothes, OK so it was only a really awesome knit cap, but I was looking good! I also got to sleep on my tummy for awhile and in Mom's picture you can see the two scabs that mark my incision from my heart surgery, it is healing well! When the doctor talked to Mom today she said to remember that everyday cannot be a "good" day, some days are just "stable" or plateaus when my body needs to rest and adjust to the progress I have made. Thank you for your continued thoughts and prayers, Mom and Dad never get tired of giving updates to family and friends!

DAY TWENTY-SEVEN

Today was another good day! Mom and I spent about an hour together just talking. I really enjoy these "touch times" with Mom and Dad. As you know they have changed my touch times so Dad gets to see me at 5:00 p.m. and 8:00 p.m., I love hearing that deep voice say "Hi, Max." As you can see the nurses are letting me have my pacifier as much as I want because it really keeps me calm! Remember the only medicine I am getting right now is the steroids and that will continue until Saturday to help mature my lungs. The doctor is continuing to wean me off of my sedation medicine and the ventilator, which has been able to be lowered throughout the day.

DAY TWENTY-SIX

Today has been another good day! The doctor did up the number of times I get milk from six to eight and the nurses have been able to continue weaning me off the ventilator, hopefully I will be able to wear the C-PAP machine by the end of the week. I know Mom is ready for that so she can hold me! As you can see from the picture Mom and Dad caught me with my pacifier, I am very talented because I can suck on a pacifier even with a breathing tube down my throat. The doctor also let Mom and Dad know that I now get more touch time, YEAH!! It used to be every four hours, now it is every three hours! I just want to let you know that I am still bummed about having to wear the C-PAP machine, I am going to try to get Dad to wear his, because he is really awesome and I want to be just like him. Mom does remind me all the time that she wants me to do my best and always listen to the doctors and nurses because they are here to help me grow big and strong, so I guess I'll go ahead and wear the mask if that is what I need to do. Thank you again for all the thoughts and prayers and for taking care of Mom and Dad for me while I am in the hospital!

DAY TWENTY-FIVE

Today has been a good day! My nurse gave me a pacifier and I love it! I got to have my milk back today and the doctor is planning to up the number of feedings I get and he also plans to wean me off the ventilator and have me use a C-PAP machine. Being on a C-PAP machine means no more breathing tube down my throat, instead I would wear an oxygen mask or have the oxygen going through tubes in my nose. My Dad was telling me that he is suppose to wear a C-PAP mask as well, but does not, but that is not an option for me, I must wear the mask! Well I guess I just learned the lesson that sometimes parents make you do things that do not make sense or they make you do things even they do not want to do!

DAY TWENTY-FOUR

Before Mom could make her 8:00 a.m. check-in call, the hospital called to let her know that I had another "white-out". The "white-out" was due to the fluid on my lungs and the fluid caused the tiny air sacs in my lungs to deflate. Because of the "white-out" the nurse had to put me back on the big ventilator that vibrates my chest. After the switch in ventilators, I improved and spent the rest of the day gaining back ground. Due to the ventilator switch the doctor suspended my milk for the day, with the idea that if I stabilized I can have milk tomorrow. Mom and Dad getting to hold me again has also been suspended for the foreseeable future and the doctor also started the steroids again and they will continue through Saturday.

Please remember that I will take two steps forward and then appear to take a step back, but I making progress and getting better and I know that your prayers are a huge part of that!

DAY TWENTY-THREE

Mom and Dad came to see me at noon for a feeding and I WAS READY!!! Dad got to hold me for an hour and a half and said the feeling was indescribable! What a great day God has blessed us with! While Dad was holding me my nurse gave me a new, clean bed, I'm going to sleep well tonight! My nurse also told Mom and Dad that my infection was cleared up and I no longer needed antibiotics! So just to recap, I no longer need antibiotics, blood pressure medicine, insulin or the lights for jaundice. With God's help and your continued thoughts and prayers I am making progress! I cannot wait till Mom gets to hold me, which should be Tuesday or Wednesday, but as you know I do things on my own terms, I'll keep you posted!

DAY TWENTY-TWO

Another good day!! It was such a good day that when Mom and Dad came to feed me at 6:00 p.m., the nurse asked them to come back at midnight and hold me for the first time. WOW! Mom and Dad were so excited! When they came back at midnight the nurse on duty said they could not hold me because my respiratory rate was erratic. Mom and Dad were crushed! Between you and me, I was not ready, but I felt horrible when I saw Mom and Dad's faces, maybe I'll be ready tomorrow!

DAY TWENTY-ONE

Milk IS what to drink! YUMMY!! Mom and Dad sure do like feeding me and they tell everyone that they know "He's a Parker, we knew he would do well at eating!" The doctor decided to take me off my pain medication and I know Mom and Dad are happy about that, but OUCH!, I still hurt a little. The nurses are still watching the fluid in my right lung and say that should get better over the next few weeks. My neighbors are really nice, but when they cry, I cry, it really upsets me, which upsets Mom, I can't win!

Mom tells me that this is "good day" #4, thank you for your continued prayers! God is so good!

DAY TWENTY

Dad fed me some milk today at lunch time and mom got to feed me at dinner. I don't get to taste the milk yet, right now it goes into a feeding tube directly to my stomach. The nurses call it priming my gut, what they are attempting to do is "wake" my stomach up and teach it what to do with small amounts of milk. Things are going well, but the nurses are still monitoring my recovery from surgery. Right now the doctor is trying to wean me off of the sedation medicine and see how I handle it. I'm doing OK, but I'm still not really liking when people handle me too much! Overall, I continue to hold my own and take small baby steps in the right direction. My lungs, as you know are not fully developed so there is still some fluid in them that I need to get rid of, the nurses work on this by positioning me on my sides or on my tummy at different times of the day because always being on my back is not good. They also vibrate my chest to "loosen" the fluid so that my body can then get rid of it. Baby steps, all in the right direction.

DAY NINETEEN

Third stable day in a row! I am doing so well getting rid of the fluid in my body they had to put me in a bigger diaper, which they have to to fold in half STILL. My infection indicators dropped lower and if that continues I get to eat tomorrow!! I hear from my gigantic neighbors that milk is what to drink. I am no longer needing insulin or blood pressure medicine, so everything is going well, I am making progress, so much so that my weight is now 1 pound 14 ounces!

DAY EIGHTEEN

Today was another "stable" day!! The nurses are still monitoring my sugars, but I got some good reports through the day and I am off the insulin IV for the time being, if I need sugar the nurses can make changes to my nourishment or they can give me a shot of insulin. Even though I am on antibiotics, the nurses are getting an indication of infection, this infection must be taken care of before I can start eating. Please pray that the infection and its indicators are taken care of so I can get some milk and begin to grow big and strong.

DAY SEVENTEEN

Today has been a good day. I have been able to rest and there have been no big changes in how I am doing. I think Mom and Dad are telling everyone that I am "stable" and I know the doctor told them that I am doing "a shade better than yesterday." Mom and Dad always tell me that they want me to do my best and I am trying, I promise! GUESS WHAT! I had my first poopie today! Mom and Dad wanted to take a picture but I said NO WAY!!

The nurses continue to monitor my sugars and they give me insulin if I need some. My whole body is a little swollen, but I just had surgery and I have had some steroids. The nurses were concerned about my swollen tummy so they took some x-rays and right now it looks like it should. Like Mom said I'm "stable."

DAY SIXTEEN

As Mom said the first 48 hours after surgery are critical! Mom and Dad have been calling the nurses and checking in because they cannot come visit me. The nurses let them know that they are monitoring my sugar levels and as the day continues, the doctor decides to put me on a insulin IV. At about 4:00 p.m., 47 hours post surgery, Mom called to get an update and the nurses were currently doing CPR on me and asked mom to call back in 30 minutes. The nurses called about 15 minutes later and asked Mom and Dad to come up to the hospital. The doctor met them there and delivered the bad news. I was having trouble breathing and they could not get me stabilized. The doctor had changed the type of ventilator I was on and tried some other interventions and nothing was stabilizing me. The doctor prepared Mom and Dad that I could pass away, but he wanted to try giving me steroids to see if that would help stabilize my breathing. The steroids they gave me appear to be working, at this time, my breathing is more stable, but once again, the doctor and nurses warn that the situation can only be taken minute by minute and everything is based on how I tolerate things. REMEMBER THOUGH - I am a fighter and prayer works!

****Mom's Note*****

This parenting thing is the best and worst thing I have ever done! Please continue to pray for Maxwell's recovery and future progress. Ben and I are very thankful for all of the cards, notes and phone calls we have received. We will never be able to repay you for your generosity, but please know that we greatly appreciate it! The most powerful, awesome thing you can provide us at this time is continued prayer, God is so good!

DAY FIFTEEN

Well I am one day post surgery and today had its ups and downs! Mom and Dad came to visit me and they had to leave pretty quickly because I had trouble breathing and the nurses had to do CPR. When they had me stabilized the doctor talked to Mom and Dad and requested there be no visitors for a couple of days, even them. Even though they cannot come see me Mom and Dad call my nurses a lot and check in. The day turned around for the better when my nurse figured out that all I needed was some ear muffs to help drowned out all the noise and stimulation, I do not like to be poked and prodded and hear all the monitors beeping. When Mom called this evening the night nurse said that I was still doing well, that I was sleeping on my tummy again and was still wearing my ear muffs. I know Mom and Dad just want me to rest comfortably and get better, remember what Mom wrote yesterday, the first 48 hours after the surgery is very important, as is the first full week following the procedure.

DAY FOURTEEN

Hi to Maxwell's friends and family,

I am going to write for Maxwell this evening, he had his heart surgery this afternoon and he is still under the anesthesia and I do not want to be responsible for the gibberish he would write ;). The doctor told Ben and I that the next 48 hours after the surgery would be critical and then the next week would be full of ups and downs. Please continue praying for Maxwell and know that Ben and I could not be more thankful for friends and family like ours. We are truly blessed!

DAY THIRTEEN

Mom and Dad came to see me this morning at 8:00 a.m. and a nurse they had never met before had to break the news to them that I got a burn on my foot. Last night a vein that had an IV in it collapsed and the medicine that was suppose to go in my vein pooled underneath the skin on my left foot and caused it to blister and burn. Let me tell you, Mom and Dad were upset, I even think they cried a little! After the situation with my boo boo, my day did not go well, I had trouble breathing all day and they had to keep uping the settings on my ventilator. About 6:00 p.m. Mom called up to the hospital to check on me before going to church and the nurse said that the lower lobe of my right lung had collapsed. WOW, talk about the tears then! Mom and Dad left church early to come visit me and when they asked about my collapsed lung, the nurse practitioner said "his lung did not collapse, he had what we call a 'white out.'" The nurse practioner then explained that I have so much fluid in my lungs that my alveoli or air sacs got weighed down and and were not working like they should and on an x-ray the area looks white or hazy. When Mom and Dad left they felt much better about how I was doing!

DAY TWELVE

This is day two of the second round of heart medication. One more day to go and then another echo on Thursday to make a decision about surgery. Today was a pretty good day, Mom and Dad had visitors meet them at the hospital ask about how I was doing. As mom always says, "He's holding his own." The doctors scheduled another care conference with Mom and Dad on Thursday to discuss the plan regarding care and hopefully make a decision about surgery for me. Thursday is going to be a BIG DAY.

DAY ELEVEN

The echo results of my heart came back, and despite one round of medication the "hole" in my heart has not closed, in fact it has opened back to how it was before the medication. Until that news from the doctor, Mom and Dad were pleased about how my day was going, they were able to take me off my blood pressure medicine and all of my other numbers were decent. My nurse Anne told Mom and Dad that an indication that the "hole" had opened again was that my ventilator settings kept going up, meaning that I need more help to breathe and oxygenate my blood.

The doctor told Mom and Dad that he would do the medication for another three day period, but that my heart just does not appear strong enough to stay closed once the medicine has done its job. That being said, the doctor prepared my parents for me to have surgery by the end of the week to put a permanent clamp around the "hole" in my heart.

DAY TEN

Happy Easter everyone! Mom and Dad brought me some gifts, a monkey snuggie from Aunt Kacy and an awesome cap from Aunt Kristin! Today was another good day, my glucose numbers were good again and my blood pressure medicine was lowered even more! Tomorrow is going to be another big day, the doctor wants to do a chest x-ray and an echo of my heart. I know mom and dad are just waiting for the doctor to say that I can start taking milk, but there are so many things that go into making that decision. Even though all my "numbers" are good and going in the right direction, they still have me on the larger ventilator and and I am needing more help than I have previously. My lungs are still developing and that will just take time. The doctor and nurses will know more on Monday when they get the results back from the x-ray and echo. Thank you so much for all the prayers, God is answering them!

DAY NINE

Alright, OK, I listened to mom, dad and the nurses. My 8 p.m. check went really well, My sugars went from over 200 to 107, they were able to lower my blood pressure medicine and lower the settings on my ventilator. The light used to help me with jaundice did not have to be on today, so I was able to take my shades off.

The goal now is to continue lowering the blood pressure medicine so that I can start taking milk.

The test for infection came back negative but the doctor wants to continue the antibotic for the full seven day course, just to be safe. Mom and Dad were so happy about how today went that they called everyone immediately to share the good news and Dad even posted a status update on Facebook.

DAY EIGHT

Do I smell like a monkey and look like one too? Mom was singing some song to me and that's what she said! I think maybe it has something to do with it being my one week birthday. I am still holding my own, the doctor and nurses were concerned about my platelet count, but by late last night the numbers had gone up which made everyone happy. They were also concerned about my glucose numbers being to high so they made some changes to my IV fluids and are still watching my sugar closely. If the numbers keep going up they may have to give me insulin.

I am still taking antibiotics for an infection, they don't know exactly where it is but they are treating it and waiting to hear back from the lab, hopefully they will know something by Saturday. I am back under the lights because I have jaundice, so I have to wear my shades again, I am still on the larger of the two ventilators because they don't want me to have to work as hard while they try to clear up the infection. Mom and I had a long talk yesterday and she gave me a lot to think about,(mom got a picture of me in my thinking pose) she wants me to do my very best and listen to the doctors and nurses. She told me that she and dad and my family and friends are doing all they can by praying, coming to visit, and asking lots of questions.

DAY SEVEN

I passed another test! The doctor informed my parents that I have a level 1 hemorrhage. When asked what that meant in regards to future prognosis, he said that typically the prognosis is good when looking at future brain development. YEAH ME!!!! A GENIUS IN THE MAKING!

That being said the honeymoon is over, when mom came to visit me, they told her I had an infection and that they had already started antibiotics. When mom came again at 4 p.m. they had moved me back onto the larger ventilator. I tried really hard to be good and listen to the nurses, but I did not feel good and needed the help of the larger ventilator. On a good note my mom took my temperature at 12 p.m. and then again at 4 p.m. and it had gone down from 99.6 to 98.5. Mom told me all day that Dad was at work and he would come by for "touch time" at 8 p.m. I cannot wait to see him and hear about how his day went!

DAY SIX

Mom and Dad were anxious today! I had my second EKG to determine if the medicine for my heart had been working. About 8:20 p.m. the doctor reported that the medicine had done a good job and closed the duct enough that we could start feeding on Thursday. YEAH!!! I passed a really hard test, Mom and Dad are so proud!! The doctor wants to see if the duct will finish closing on its own, if it doesn't, then we can do the medicine again in a few weeks. I did so well on my first test that the doctor is going to give me another on Thursday, this time he will look at my brain and make sure there is no bleeding. Hey, guess what? Two things, I am on the smaller ventilator now AND I opened my eyes for Mom and Dad! Today really was a good day, prayers are being answered!!!