Bad Saturdays!

I woke up and called the hospital. It is the same routine every day. I wake up and immediately phone in. For the last week or two, I have had the same report. This report was different today. It wasn't the normal "Hunter had a good night". He had a bad blood gas and they had to go up a level on the CPAP.

I never heard of a blood gas before I came here. So, I am sure that half are reading this saying, what is she talking about? A blood gas is a blood test that they can test how the gas exchange is (oxygen, carbon dioxide, etc.) all relating to how the lungs are working.

Hunter is at the highest level of CPAP. If his blood gas continues to be bad, he will have to go back to the respirator. Ugh!

They started him on steriods to help him get through this bad period. So, we are praying he doesn't return back to the respirator.

In addition, the opthamologist (eye doctor) came back and checked his eyes. He is getting weekly check ups because of a conditon called retinopathy of prematurity. She is started to see ROP set in and watching his eyes closely.

On top of everything else, Hunter is losing weight and not gaining. He is down to 1295 grams. This converts to 2 pounds 13 ounces. They have started increasing his calorie intake and hope the boy gets some meat on his bones.

At 4 PM, they tested his blood gas. It was better. We are praying for another good blood gas in the morning.

Friday, May 30, 2008

For right now, Hunter is just plucking away.

He is still on CPAP and doing much better with his oxygen levels.

He is also being bumped to full breast milk without any help from the elecare formula.

His infection cultures are negative. It appears he fought another infection. Yeah for Hunter!!!

I'm fried right now, but don't think that I am leaving anything out.

Thursday, May 29, 2008

Hunter is still continuing on his course to development. He is on CPAP to help him breathe and with his lungs. Hopefully, we can look forward to nasal cannula soon. But, that is just the anxious mom talking. The mom ready for him to be home.

He is tolerating his feeds, but lost 65 grams. They have him on diuretic (I know I didn't spell that right). This helps release the fluid from his lungs, but can also cause him to lose water weight.

His heart rate has dropped a couple times, but he has recovered. I hate it when that happens. I hold my breath the entire time. They know what they are doing here and right now, his heart rate is back up to 161 (normal for babies).

Wednesday, May 28, 2008

Fortunately, I have nothing to major to report. Hunter is still tolerating his feeds. In fact, they have increased his feeds to 26 cc's. 30 cc's is equal to an ounce. They have gradually been increasing the amount of breastmilk and mixing that with elecare. He is still on the CPAP.



The cultures finally came back as negative. They are going to finish his course of anitbiotics and discontinue.

The biggest joy for today is that I got to hold Baby Hunter for 45 minutes. It's the things that some people take for granted.

Monday, May 26, 2008

Day Two on the CPAP and the hospital staff seems pleased.
Hunter is up to 25 cc's of food. He has also reached the 3 pound mark and is 15 inches long.

Starting tomorrow, they will be gradually increasing break milk into the elecare formula. This is a step in the right direction.

He still has his infection. We are praying real hard that that goes away soon.

Hunter comes off the respirator!

May 24, 2009

Good news:

HUNTER CAME OFF THE RESPIRATOR TODAY!!!! Before he came off the respirator he was still tolerating full feeds at 21 cc's and had a couple poopy diapers. Yeah!!!!



Bad News:

Hunter's second culture came back positive. He still has his infection. The doctors and nurses seem pretty relaxed about it. I try to pick up there same attitude. But, I still worry about him. They increased the amount of antibiotics they are giving him to try to fight off the bug.

Did I mention that HUNTER CAME OFF HIS RESPIRATOR TODAY? I got to hear him cry and make sounds. Oh my! The next step is to make sure he can tolerate his feeds while he is on CPAP. CPAP blows more air into his tummy . They will also be gradually moving him over to breast milk.

Friday, May 23, 2008

I think I am writing this email out of pure excitement. It will probably be the same thing I add to Hunter's journal.

I can't begin to explain what I have gone through in the last couple months. Nothing I have ever been through compares to this. This was not me that it was happening too. This is something that is so beyond words because I have to leave it in someone else’s hands. I had no control. I didn’t know how to fix it. Ultimately, this situation was left to God. I realized so many things in these last couple months and my whole perspective on life has changed. I know that when I come out of this; I am going to come out a stronger and better person. Gosh, I have experienced fear so beyond anything I have ever felt before. I have worried so long and so hard.

Physically, I have had to stand when I had nothing left in me. I have been through every single emotion a hundred times over; sometimes all in one day. I have had my hopes up to have them shattered. Within a split second, good news has been shattered by bad news. But, I have learned so much.

I have learned that life is not a guarantee. Not just Hunter's, but our lives. I am going to come out of this with an understanding of just how fragile life is. I think we spend so much time planning for the future that we forget about living our day, this day, to the fullest. We take for granted every day that we wake up. We complain about going to work, about cleaning the house, cooking dinner, gas prices, our weight, but these are life's privileges. We were given a gift and that is a new day. We are here to see gas prices rise. Our bodies are capable of cleaning the house. We don't have any physical limitation that prevents us to go to work. Our bodies can eat and digest food without the help of anything. What are we complaining about? I have heard people tell me live each day to the fullest. But, I never knew that saying until know. Since this happened, I was always planning for tomorrow. I was such a perfectionist. I was so worried about the details that I never stopped to just enjoy the moment. Life was a rush. After awhile, just a big blur. From now on, I stop and savor the moment. I "smell the roses" so to speak. I treat the people around me with compassion and love. I have the ability to forgive. I have adopted patience. I forget about the hatred, greed, and other stuff that pollutes us as a human race.

I have learned what severe tension and stress can do to a family and can only work to be a better person in the end.

I learned what it means to have "true inner strength". I'm not talking about me. Hunter has more strength than I could ever dream of having. He amazes me.
I have learned that without having faith in God, I can't have faith in anything. I have seen so many miracles happen right before my eyes in the last month and a half. Science can only take us so far; then God comes in. I truly believe that God still remains next to Hunter's side. When all else has failed, I have kneeled down in prayer. His power is real. He's real. He just comes to us all in different ways. I have learned that sometimes God sends us messages. It might not be want we want to hear; but it is something we should/need to listen to.

I have learned that, no matter how much I thought I had control over my own life, I don’t.

I sit here and watch Baby Hunter sleeping and could go on with stuff that I have learned about myself, life, and religion. As the monitors beep because his oxygen levels rise to high or fall to low, I realize that Hunter has taught me more in the last month and a half, than I could teach him in a lifetime. I know that I am a better person because of him.

In the beginning of my email, I mentioned the word "excitement". I came in today and Hunter has no IV pole around him. Hunter is up to full feeds. He reached his goal of 21 cc's every three hours. He doesn't need the IV nutrition anymore. He is still on his respirator. But, they keep winging him from that. It is a slow process. But, again, I have no other choice but to work on patience. This was something I never had before. So, I wait. I wait for them to turn down the settings one more time, day after day; until they feel he can breathe on his own. They sent down another culture to the lab. He has been battling a staph infection. I have no discharge date. Hunter still has many obstacles and road blocks are always something I have to be ready for. But, I am excited because God has blessed me with another day with my son. I will think about a discharge date when that time comes. For right now, I am excited that he is 2 pounds 14 ounces, he is up to full feeds, he is alert, and I got to kiss him today and tell him I love him. I am excited to hear that he is heading in the right direction. I am excited to hear that he has a long road ahead of him. It is better than not going down the road. (another example of how I look at life) I also heard a doctor say the words "he is going to survive". Of course, she elaborated that he does not get an infection or something unpredictable happens. His eyes are good and do not require treatment for now. This may change in the future. Again, I focused on now.

One last thing, I have learned that I choose the right hospital for Hunter’s care. The nurses and doctors are great. They have care diligently around the clock for Hunter. They have been patient when I ask a million question. They have taught me too much. They are all so loving and caring. I couldn’t ask for a better group of people.

Our journey is not over with. His struggle is still real. Please pray for baby Hunter as everyday he fights with all he has.
I just wanted to share with everyone what Hunter has taught me. What a miracle he is!!!

Wednesday, May 21, 2008

Hunter has had a busy day today. He started his day with a blood transfusion. Yes, that’s another one. He needed platelets.
He decided he didn’t want the vent anymore. He pulled it out…Yes, that’s the second time. When I got here this morning, the hospital curtain was closed. They were working on putting it back in. The doctor told Hunter that if he had waited for a week or two, he could’ve been converted to the CPAP. He is just not quite ready for that yet. The CPAP puts a lot of forced air into the stomach. Hunter is still trying to tolerate his feeds. This could have an effect on his feeds.
They have increased his feeds from 12 cc’s to 15 cc’s. They will be increasing his feeds to 18 cc’s tonight. He is almost to his goal of 21 cc’s. They will be removing him from the TPN (IV Nutrition) tonight. Let’s cross our fingers and pray!
They have winged the respirator a little more today. He is still breathing fast because of the infection.
They did a spinal tap on Hunter today. It is standard procedure after he had cultures come back for positive infection. They want to make sure the infection has not spread into the spinal fluid. Unfortunately, they were unable to get any spinal fluid from him. The doctor tried a couple times. She really does not think that there is a concern and is not going to repeat.
Hunter had his first eye appointment today. Retinopathy of Prematurity can have a big effect on his sight. The pediatric ophthalmologist said his eyes look better than a lot of 24 weekers. She is going to keep a close “eye” on him. His next appointment is next Wednesday.
We are praying for Hunter’s infection to go away and his breathing to normalize. He has been such a trooper today. God Bless Him!

Tuesday, May 20, 2008

Hunter's cultures came back. He does have a staph infection. He is on two different antiboitics to fight this bug.

He is up to 12 cc's of elecare (formula) a day. His ultimate goal is 21 cc's. He's half way there. I can tell Hunter isn't feeling good. He is more tired and alot more sleepy today.

Monday, May 19, 2008

Bare with my grammar. I am a little off. It has been a down day.

Hunter is still breathing way to fast. They first tried a water pill with him. Fluid on the lungs can cause that. When that didn't work, they ordered an x-ray and blood work.

His white blood count came back high. This might indicate an infection. They took more blood work and a urine sample and sent it to the lab. We won't know anything for 48 hours. In the meantime, he is on an antibiotic that treats a wide band of infections. This is a precautionary.

He also needed another blood transfusion.

They increased his feeds to 9 ccs today. He was not tolerating it. It has been a rough day for him.

Sunday, May 18, 2008

Hunter's respirator settings were turned down one more time today. He is breathing rapidly. This is not normal. They are keeping an eye on it. It could mean that he has fluid on his lungs again or getting adjusted to the new ventilator settings. They also mentioned the possibility of an infection; but they don't think that is the case.

They also increased his feeds to 6 cc's. He seems to be tolerating that well. They plan to increase his feeds everyday. They said not to be surprised if they have to slow it down here and there.

Saturday, May 17, 2008

Hunter's respirator settings were turned down last night at 3 AM. This is his big challenge for the day. They have had to increase his oxygen intake after they turned down his settings. We are crossing our fingers that his body allows for the adjusted settings.
They also turned off his temperature control in the incubator. Only time will tell if his body is able to maintain his temperature without assistance.
He is still tolerating his feeds at 3 cc's a day. This is a very small amount and still needs the assistance of the TPN (IV nutution).

Friday, May 16, 2008

They will be turning down Hunter's respirator settings tonight at 3 AM. This is a trial run to see how well he can handle lower settings.

He is still on 3 CC's of food. They plan on increasing his dosage to 6 CC's on Sunday, May 18th.

I am pretty tired: emotionally and physically.

Thursday, May 15, 2008

Hunter is tolerating his feeds at 3 cc's every three hours. He still has the TPN giving him his nutrition to compensate for the low amount of food his body can handle. He is weighing 1155 grams. This converts to 2 pounds 8 ounces.



His lungs are the main concern at this point of time. He does have a diagnosis of chronic lung disease. Hunter will probably be sent home with oxygen. This will last up to a year of his life. He is still on the respirator with the same settings.

A pediatric ophthalmologist will be visiting Hunter next week to check him for retinopathy of prematurity. This is an eye condition that can be serious but common in premature infants with a low birth weight.

Wednesday, May 14, 2008

My last entry explained the "poopy" situation and I am still having my "poopy" parties. Hunter is still making messes in his diapers.

They started to feed him Tuesday, May 13th at midnight. Hunter is getting 3 cc's of a special formula every three hours. This special formula is called elecare. It is specially formulated to be half digested to make it easier for babies who have difficulty with digestive issues. To give you a little comparison, a full term and healthy infant would be receiving 25 cc's of breast milk or formula eight times a day. Hunter has a long way to go still.

So, to explain more of the feeding process...Hunter has a feeding tube that goes directly into his stomach. They will feed him every three hours. Before they give him more food, they will pull the contents from his stomach out to see how much was actually digested. Hunter has been digesting anywhere from 1 1/2 cc's to 2 cc's every three hours. They will re-feed the remainder of the formula back to Hunter and give him whatever the difference is. Example: If they give him 3 cc's, he digests 2 cc's, they will put 1 cc of formula back and give him 2 more. This will give him a constant 3 cc's of formula. After he tolerates this, they will slowly move him over to breast milk and slowly increase how much he receives.

As for the bowel obstruction, it could still be a narrowing. They haven't ruled that out. Only time will tell.

They have also lowered his vent settings slightly and are winging him off the morphine. They are hoping that tomorrow he will be off of the morphine drop and on an as needed basis.

This is nothing short of a miracle. But, his battle isn't over. He still has a long way to go. I will never be overconfident. But, I am smiling today. This has put a whole new perspective on life for me. Instead of focusing on the negatives in a day, I find all of the positives. It has really helped me emotionally. I feel that this experience is changing me as a person. It has changed how I view things and people.

For now, I am tired and going to bed. Good night everyone.

Thank you for all of your support and prayers.

Monday, May 12, 2008

My Mother's Day present did not consist of cards, roses, or breakfast in bed. It didn't consist of anything that money could buy. It was actually the best gift ever. I got poopy diapers for my Mother's Day present. Of course, they are disposable.

Okay, now that I got raised eyebrows and all the mom's out there are thinking I am completely insane. The poopy diaper was exactly what I wanted. I have been dreading what we thought was the inevitable - surgery. Hunter has been having problems with his stomach and intestines. We thought after the bowel perforation healed, he created an obstruction. Air was building up in his intestines and would not move anywhere. X-ray after X-ray it showed the same thing - no movement, just air. This was ultimately leading to the doctors discussing Hunter's transport to U of M, tests, and surgery.

Gosh, U of M is a great hospital. But, I didn't want to move. I didn't want to worry about surgery. I prayed every day. This is proof God answers prayers. The specialists were convinced he had an obstruction. They were preparing his transport. Then, for mother's day...poopy diapers. Oh my!!! This is a good sign. But, because everything isn't black and white Hunter isn't in the clear. Hunter may have a narrowing in his intestines. The only way we will know that if it they start to feed him. So, that word came up today. If things look good tomorrow, they might start feeds. This is the next thing for me to worry about. Micro Preemies do not take to well to feeding. Remember, they aren't supposed to be here yet. This is a bumpy road. But, nothing that God can't do. He still remains Hunter's #1 Physician.

We just have to hope for this to continue. Life in the NICU is, filled with a lot of maybe's, false starts, what if's..you name it. I have a hard time being over confident because of everything I have been through in the last month and a half, and I don't want to jinx anything. For today - I am smiling.

Oh and....Hunter has gained more weight. He is up to 2 pounds 6 ounces. My last update email he was at 2 pounds 2 ounces. I also got to hold my son for an hour on Mother's Day. Gosh, I can't put into words how that feels. But, my little man is getting fat on his feet and hands. They actually looked a little padded, along with his cheeks.

Please continue to pray for Hunter. God is listening. I can't thank everyone enough for there support and prayers.

Friday, May 9, 2008

Mom is really anxious today and really worried. They tried to stop the suction again yesterday and his oxygen levels went up. There was a lot of pressure on his abdomen from the air building up in his intestines. After talking to Dr. Everett, we are waiting for the surgeon to make the final say. For now, they are letting Baby Hunter rest on the respirator. On Monday, May 12th, they are going to talk to the radiologist and start running the test to see where the blockage is at. This could happen as early as Monday or Wednesday of next week. After that, we will know more. We are just playing wait and see right now. Hunter is at 960 gram. According to the nurse, surgeons like to wait until they are at least 1100 grams. Hunter is on something called “TPN”. This is a no food restriction diet and strictly food through an IV bag. It is made up of everything he needs nutrionally. The hard balance is that it can harm his liver. I guess this is why I am so anxious for him to get fixed. Other than, I dream of the day he is coming home. I dream of the day when I can kiss him, hold him, and not look at him through an incubator, when he can lay in bed with me and we can cuddle. I just want him home with me so badly. I sit here daily.

Wednesday, May 7, 2008

I am back up here with my baby boy today and wanted to hand out another update. Tomorrow will mark 30 weeks gestation. He is weighing in at a WHOPPING 940 grams or should I convert it to 2 pounds 1 ounce. Who would've known I could ever convert grams to pounds. The things you learn with a micro preemie.



As I mentioned in my last entry, they had to put Hunter back on an antibiotic cocktail. They thought that he may have pneumonia. His chest x-rays were not looking so well. They sent cultures to the lab. The cultures came back negative. They took him off the antibiotics – all three of them - and we were able to take a sigh of relief. They are chalking it up right now to immature lungs and the possibility of a chronic lung disease. Again, the chronic lung disease might last him through infancy and early childhood – but his lungs will regenerate themselves as he gets older.
The main concern right now is still his stomach and intestinal issues. The perforation is wrecking havoc. A nurse told me that the specialist was coming over from U of M today. I didn’t want to miss him. So, I was here bright and early. The Neonatologist told me that she was very worried about this stomach, with the worst case being surgery on a critically ill infant. (Back to holding my breath again)
They are also winging him off his morphine. It seems that my little preemie has quite a little drug dependency problem. I was joking with the nurse and they said it was real. They have to slowly turn down the morphine because of his dependency. HELLO - he is only 29 weeks gestation. I guess when you have been on morphine your entire life it’s to happen - no long turn effects. I told them that I would gladly trade places with Hunter and take the morphine. They didn't take me up on the offer. Hey, at least I tried.

Sunday, May 4, 2008

I arrived at the hospital yesterday after the nurses were calming down. It appeared that I had 2 nurses, a nurse practitioner, the neonatologist, and a respirator therapist with sweat on their brow and a little panicky. They were taking a breathier and the x-ray was in taking another x-ray of Hunter. I could tell something had just happened. I asked his nurse if everything was okay. Apparently, Baby Hunter was lying on his belly (his favorite place) and got a little ornery. He started to move his head around a lot and was able to loosen up the breathing tube. He took his tiny little hands and pulled the breathing tube out completely. I think he was telling everyone that he had enough. So, the sweat was real. This happened 10 minutes before I got there. They had to bag him and breathe for him as they were re intubating him.

It doesn't end there. I was at the hospital morning to night yesterday and still haven't slept. I have to find a time for myself to relax, but right now ... Mom's worried. Hunter may have pneumonia. They put him on three different antibiotics and sent more cultures to the lab. It takes a couple days to come back. But, I was able to see his x-ray and things didn't look good. In addition, Hunter's heart rate kept dropping yesterday. Oh my! Talk about the worst feeling a person can ever go through. I was continually watching the monitor. My son and whole world would drop his heart rate. Medical personnel kept running in his room. Ugh!

His gut also isn't clearing up or getting any better. There is still a lot of air in his intestines. We had one day that things looked good. It gave us a false gleam of hope. His gut can cause him a lot of cramping, which kills me to think about. I hate the thought that he could be in pain. Ugh! Life in the NICU is one day at a time. They mentioned the possibility of surgery for a bowel obstruction, but haven't said it again to me. I asked yesterday about it. The doc said that it is still a possibility and they would have to transport him to U of M for the surgery. I am not sure if he needs it yet. I guess I can't worry about this until they tell me for sure. (not worry - ha) I haven't checked yet - but I am sure that I am getting gray hair.

I hope this email explains why I couldn't sleep last night. I was so worked up by the time I got home. I couldn't get comfortable for nothing.

Again, thanks for your support and prayers. I still believe that God is Hunter's # 1 Physician and there are angels watching over him.

Friday, May 2, 2008

Yesterday was Hunter's one month Birthday - Happy Birthday Baby Hunter. He is now 29 weeks gestation.
Hunter has had a roller coaster week. I was sick on Wednesday. I thought I was coming down with a cold, so I had to stay away. A cold could be life threatening for Hunter. So, I couldn't expose him to that. I slept almost all day long. I am feeling fine now, and typing this from Hunter's hospital room. I think it was my sinuses acting up again. But, I didn't want to take the chance.
They were going to feed Hunter starting this week. That didn't happen. Hunter has some air in his intestines and it is not moving through the way it should. This suggests that he might have a bowel or intestinal obstruction. This is caused by NEC and the bowel perforation that he had a couple weeks ago. They think that the perforation is healing but forming scar tissue that could lead to this blockage. They brought over a specialist and surgeon from U of M. His recommendation for now is to wait and watch. They are waiting until next week. If Hunter's condition has not improved, then they are going to move forward with diagnostic tests to determine whether they are right and make the diagnosis. If Hunter has a blockage, he will need surgery.
If Hunter needs surgery, it may be possible that they will have to move him to U of M. We are not sure yet. They might do the surgery here. They aren't discussing that with us at this point. Life in the NICU is one day at a time.
Fluid is also starting to build back up on his lungs. The doctors don't think that it is congestive heart failure. They think that it is caused due to the fact that he has immature lungs and can't push it out. They are watching it very closely. Doctors would really like to see Hunter off the respirator by this point. But, because of the NEC and gut issues, it has really set him back. The doctor is also seeing some chronic lung disease developing in Hunter's lungs. More than likely, he will be sent home with a nasal canila for oxygen. He will need to wear that for 3 months to a year when he is home. But, the good news is that Hunter will be fine when he gets older and his lungs will heal. As a child, he will have to be watched closely. Colds will still be dangerous for him. His colds might be worse for him until his lungs heal with age.
Last night, I received a phone call that they had to put Hunter back on antibiotics. They were suspicious of an infection. YIKES! It will take 48 hours to get the blood cultures back. But, they wanted to get control of the infection before it got control of Hunter. Today, the nurse said that a couple cultures came back as negative. But, not all of them are back yet - and we won't know for sure until tomorrow, possibly Sunday. Oh, Hunter has gained weight too. He is up to 860 grams. This converts to 1 pound 14 1/2 ounces. He is almost reaching the 2 pound mark.
I am breathing. I, sometimes, have to remind myself to breathe. I have caught myself holding my breath a couple times. :-)~ Life is one day at a time. It can sometimes be one hour at a time, one minute at a time. They are great here. He is under the best of care. I find that it helps me to leave here. For the first couple weeks, I stayed morning to night here. The nurses had to kick me out. By the time I left, I was so tired that I think I almost fell asleep driving down US-23 a couple times. I learned that I can't do that anymore. I usually come to the hospital and stay for a couple hours (between 5-6 hours a day) and go home. Hunter is always on my mind and I call the nurses every hour when I'm not here. But, it has helped me emotionally and physically to not stay here all day and night. It is just not feasible.
I appreciate all the prayers and support. Please continue to pray for Hunter. This is a long, hard journey for him. (and us) He is my world. I tell him that every day. I hope he knows how much his mommy loves him, but I'm sure he does. :-)

Thursday, May 1, 2008

Happy "One Month" Birthday Baby Hunter