Tuesday, June 17, 2008

After Hunter's disappointing morning yesterday, he did really good with his nasal cannula yesterday during the day and night. They have bumped him up to a 9 hours on cannula 3 hours on CPAP rotation.

Go Hunter!!!

He has gained more weight. He is up to 3 pounds 6 ounces.

Monday, June 16, 2008

This morning was a little disappointing. Hunter had a hard time with his nasal cannula. They had to put him back on CPAP. He did really well for his six hour stretch during the day. The night time was hard. It doesn't look like they will be changing him over today. I will know more later and will write about it.

Sunday, June 15, 2008

Hunter went to 6 hours twice a day on the cannula.

The doctor said that if he can go from 2 PM to 8 PM, then 2 AM to 8 AM on the cannula, they will consider moving him strictly to cannula. He would be off the CPAP. He is more comfortable on the nasal cannula. He does not like the CPAP.

I think I mentioned this before, but the nasal cannula is the least amount of support that they give. He would be on 2 liters of pressure and they would slowly decrease that to 1/2 a liter before he came home. I am preparing for him to be on the nasal cannula when he comes home because of his chronic lung disease. A miracle may happen and he may not need it. For now, I am preparing myself. If that is the case, it would only be for up to one year, possibly less. Periodically, we (Hunter and me) would need to stay the night at St. Joe's where they would study him on the nasal cannula. They would eventually ween him off.

He is up to 3 pounds 4 ounces. They increased his feeds today to 1 ounce, every 3 hours.

Grandpa Finally Holds Hunter!

Saturday, June 14, 2008

After 75 days, GRANDPA FINALLY GOT TO HOLD HUNTER!!!



Because of Hunter's condition, they only allowed parents to hold Hunter. Hunter has stabilized enough. After much anticipation, grandpa had him in his arms. Wow, that was really nice to see.

The doctor told me that Hunter is on the home stretch today. This is given that he does not have get any infection, which could set him behind. She said not to expect Hunter home by his due date, but shortly afterwards.

He still remains on 3 hours twice a day on his nasal cannula. Although, the very feisty respiratory therapist (she is awesome) tried to push for 6 hours twice a day. The doc's didn't go for it. We are hoping soon! They don't want to push Hunter and have him go backwards. It's all baby steps at this point.

Friday, June 13, 2008

The only change to report today is that Hunter is now on 3 hours of nasal cannula twice a day. This is an extra two hours of time on the cannula.

They tried to feed him by a bottle today. This is for the first time. He was still not ready for that. He did suck on the nipple twice, but when it came to swallowing that was a different story. Hunter turned blue. It was not pretty. He destated pretty bad. This meant that his heart rate dropped and his oxygen levels went to a very low rate. Of course, the nurse was right there and was able to get things stabilized. It was scary. This is normal for micro preemies. It is a big hurdle they have to get over. They will continue to work on it, but not right away.




Other than that, he is doing good. Daddy got to hold him today. Mommy was being generous. Hunter has a surprise on Sunday (Father's Day). I just can't say anything and let the word out now.

Thursday, June 12, 2008

Hunter is hanging out in his crib doing well. He has been able to maintain his own body temperature. He has also gained weight. He is up to 1420 grams (3 pounds 2 ounces). Gosh, I can't wait for him to come home. We still have awhile to go, but I am so excited for him to be with me. Patience ... Patience ... Patience.

Isolette be gone

Tuesday, June 10, 2008

Hunter's main goal is to gain weight and get off CPAP.

They increased his calorie intake to 27 calories yesterday. This is up from 24 calories. Sometimes preemies don't tolerate the rise in calories because its an oily substance. Hunter seems to be doing well. He has not gained any weight yet.

They are also increasing his time on nasal cannula. He will be on cannula 2 hours 2 days a time. This is up from 2 hours one time a day.

And the most exciting news just came in, they are opening the top of the isolette and keeping it open for two hours. Hunter might be able to move from the isolette into a crib. This is a big, big move. We will see if his body temperature can handle it.


It is so scary when they want to make changes. You never know how his body is going to react. So, again - I catch myself holding my breath and waiting. Talk about anxiety provoking. But, this is where my faith in God has to come into play. God has brought us to it, he will bring us threw it.

UPDATE: HUNTER DID GO INTO A CRIB FOR THE FIRST TIME. A COUPLE HOURS OF BEING OUT OF THE ISOLETTE AND HE HIS STILL MAINTAINING HIS OWN BODY TEMPERATURE. KEEP PRAYING THAT HE CAN MAINTAIN. IT IS NICE TO SEE HIM WITHOUT LOOKING THROUGH THE TOP OF THE ISOLETTE.

Monday, June 9, 2008

Hunter was weighed late last night. He was still holding at 1365 grams or 3 pounds and a smudge. They are increasing his calorie intake.

He did well on the nasal cannula today. Instead of keeping him on it for 2 hours; they added an extra half an hour.

Saturday, June 7, 2008

Hunter is pretty mellow and sleepy today. I got up to the hospital at 9 AM and got to hold him. He did well on nasal cannula for two hours.

They increased his feeding to 28 cc’s. He was getting 26 cc’s.

He had a follow up head ultrasound. In the very beginning of his life, he had brain bleeds. They are known as IVH. They want to make sure that is healing without complications. The results are in and everything looks well.

Hunter’s eyes are still puffy and bloodshot from the surgery.

I spoke to the neonatologist today. The main goal in the next couple weeks is for Hunter to gain weight and convert over to nasal cannula. We are praying for him!

Friday, June 6, 2008

Hunter is a day post surgery and doing well.

He is off the respirator and back on CPAP. He was held with nasal cannula for about 1 hour and 30 minutes. He got fussy and they decided it would be better to put him back on CPAP. He started to destat. This is where his oxygen levels start dropping.

They started his feeds again today. They started him on breast milk and will slowly increase him back to full feeds.

We won't know anything about the condition of his eyes for a couple weeks. They are puffy and red, as expected. This is normal.

For the most part, he is having a good day!

Thursday, June 5, 2008

Hunter handled nasal cannula today for a little over two hours.

The day became long after this.

The eye surgeon came in today around 12:30 PM. He didn't like what he saw when it came to Hunter's eyes and wanted to do the surgery immediately. He said he would be back around 3:30 PM.

The NICU staff prepared the procedure room. They also prepped Hunter in the meantime. Hunter had his surgery. It lasted for about 1 hour and 30 minutes. He did fine through the procedure. He is out of the surgery. They had to paralyze him and put him back on the ventilator. They hope to start lowering the settings and getting him off within the next couple days. They will also have to slowly increase his food intake. The poor little man is not eating right now. The surgery won't allow it.

Hunter was resting when I left the hospital.

We had to get it done. If not, Hunter could've went blind. For more information on his condition, you can google Retinopathy of Prematurity.

Wednesday, June 4, 2008

We had good news/bad news today. I am going to start with good news.

Good news is...they tried Hunter on the Nasal Cannula today. He did really well and tolerated an hour and a half. His oxygen level, heart beat, and respiratory level stayed well. He also gained weight. He is back to to 1360 grams. This converts to 2 pounds 14 (almost 15) ounces.



Bad news is...they checked Hunter's eyes again today. The retinopathy of prematurity is getting worse. They are bringing in a surgeon to look at his eyes. This will be a set back for him. He will have to go back on the respirator for that. His feeds will also have to be reduced and winged back up again. It sounds like ROP can be fixed with surgery, as long as it's caught in time. Hunter's appears to be caught in time. It is pretty common with preemies born at Hunter's gestation and weight. In addition, his surgeon is supposed to be the best in the area.

God is still Hunter's #1 Physician.

Tuesday, June 3, 2008

Hunter is recovering from a set back on Saturday. His CPAP is back to the original pressure it was before the set back. He has been all over the board today. His oxygen levels have been too high or too low. He is keeping the nurses on there toes with all the adjustments.


He wasn't able to get his vaccinations on June 1st because of the boost of steriods he got on Saturday and Sunday night. They will have to wait a couple weeks for that.
Hunter's weight is down a little bit from the highest he recently weighed. He was 3 pounds and a smudge and he is down to 2 pound 12 ounces or 1260 grams.

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).