Home Sweet Home, Finally!!

HUNTER IS HOME!!!

We are basking in the overwhelming joy and happiness!

He is doing great. He is laying on Daddy's chest and getting tons of love. He just got done loving on Mommy. It was Daddy's turn. Mommy does have to give him up every now and then to Daddy.

Saying Goodbye (Discharge Photos)

The Eve of Discharge

We are on the eve of discharge. I feel like a kid at Christmas. I can't wait.
Today, we finished up our training with the nurses. We practiced the feeding tube and went over the training that the hospital required before we left.

Hunter is having problems with his blood pressure. The top number is running a little bit high. They are going to try to discharge him tomorrow, but he might need to stay an extra night to monitor this. They did an urine analysis. That came back normal. They are going to monitor it overnight.

I had to say good bye to some of the best nurses and respiratory therapist today. It was hard. They have become family and have given me my dream of having a child. They worked so hard and I can't put into words how much I appreciate them. They are miracle workers!

Discharge approaches

I stayed home today and worked on the house. I am so exhausted, but trying to get everything perfect for when Hunter comes home. Of course, my every couple hour phone calls into the nurse has to be annoying to the NICU.

The medical supply company delivered Hunter's oxygen tank today.

Hunter had his car seat test today. He passed! He is still event free.

Friday, July 25, 2008

No events. YAY!

When I say no events, Hunter has not had any heart rate or oxygen destats. He is a one day closer to coming home. He can not have any events or his stay may be prolonged.

Hunter had his circumcision done today. I was in the room the entire time. My job was to keep the baby calm. haha - yeah right! He did pretty good considering what was happening to him. Ugh! I focused on him and tried not to watch.

The excitement is boiling.

Discharge Planning

We met with Lourdes, the Discharge Coordinator today. Boy, we never thought that meeting was going to take place. Discharge arrangements have been made. Things seem pretty in order, except for us...scrambling around our house trying to sanitize everything.

Hunter will come home on a monitor. They tried to take his nasal cannula off. Hunter really needs the oxygen. It only took a couple minutes. He will only need to be on the monitor at night. This is a safety measure. He likes to tug on his cannula and pull it out of his nose. We have been learning about oxygen and tube feedings.
Tim practiced on Hunter today. Hunter didn't like him placing the feeding down into his tummy. But, who would. Hunter screamed. For a baby with chronic lung disease, he has a loud cry.

Tomorrow he is having his circumcision. I have to be there early for this

Hunter's coming home soon!!

Hunter is coming home!!!

The neonatologist approached Tim and me today. They feel that he will be ready to come home on Monday, July 28 or Tuesday, July 29th.

Hunter will be sent home on oxygen. He will also need a feeding tube. The feeding tube is due to his lungs. The neonate's feel that he has the feeding coordination down pat. His lungs are holding him back from taking his full feeds. The feeding tube and oxygen will both be temporary, but mandatory. After a discussion, we feel very comfortable and excited that he will be home. We can't wait!!!

Hunter is getting circumsized on Friday. We are in the process of learning how to tube feed him. We are also power cleaning our house preparing for his homecoming. Oh gosh, I can't begin to explain how excited and happy I am. I think I have had permagrin since I heard the news.

Thank you friends for your support and prayers.

THANK YOU GOD FOR LISTENING AND ANSWERING OUR PRAYERS!!!

Hunter Passes His Hearing Test

They turned Hunter down to ¼ liter airflow 100% oxygen and he seems to be tolerating it well.

They did his hearing test. He passed with flying colors.

Sunday, July 20, 2008

At 8 AM, Hunter went to “home oxygen”. That means that his air flow was at 2 liters of flow. It came down to ½ liter of flow. This would be good enough for Hunter to come home. They still want to wean that down to ¼ liter. If they can’t wean that down. A half liter would still be okay. It is 12 hours later and he is still tolerating it. Yay! This is what we have been waiting for.

He is still tolerating his feeds. After his surgery, he had difficulty. His coordination is getting better with his bottle. He gets tired really easy and sometimes can’t finish his entire bottle. We are still working on this. Tim got a second chance at feeding Hunter today. It was nice to see that Hunter did not destat for him. Hunter did really good

Friday, July 18, 2008

Hunter seems to be doing better from his recent heart surgery.

Last Friday, his heart rate and oxygen levels were dropping. This Friday, he is wide eyed and bushy tailed. They say that the eyes are the windows to the soul. I look him in the eyes and see his will to live shining through. He is amazing.

He took a bottle for me. He had a brady (heart rate drop) and a couple destats (oxygen level drop), but overall he did really good. He brought both of them back on his own without intervention. This is huge. He required the nurses to intercede before. He was wore out after 30 cc's. I pulled the bottle back and we put the 15 cc's through his tube. I am so proud of him.

He is still at 2 liters of air flow in his nasal cannula. He is also sitting at 38 % oxygen. In order to come home, they will need to wean his oxygen level to 1/4 liter. His lungs still have work. 109 days and counting..

Hunter's Due Date

Today was Hunter's original due date. It wasn't as hard as I thought it to be. The doctor's told me that I was due on July 17th. God said April 1st. Who am I to argue with the big man?

Hunter took a full bottle today at 2 AM. He is up to full feeds now. I gave him a bottle at 5 PM. He took 41 out of 45 cc's. We tried again at 8 PM. He was so tired.

Wednesday, July 16, 2008

The eye doctor came to see Hunter today.

The verdict:
Hunters eyes are as good as a full term infant. To examine Hunter's eyes, he would never know he was a preemie. Yay!

Tuesday, July 15, 2008

Hunter had a half day of not tolerating his feeds. He had the other half of day where he did tolerate his feeds. He is not up to full feeds by far. He is still at 10cc's. Full feeds are 41 cc's. I did get to bottle feed Hunter today. He tolerated it twice without getting out of breath. His color looks really good. He was a little irriatable today. He also is twitching. The doctors said not to worry about it. It is just withdraws from the medication he was given to sedate him during surgery.

Monday, July 14, 2008

We just got back from the NICU. Here's the update for today:

Hunter seems to be doing a little better today. I can't say that I'm relaxing yet. They took Hunter off the vent. Yay! But, the neonatologist is not sure if he can stay off the vent. He has been back on the nasal cannula since 2:00 PM. He had a good blood gas at 4:00 PM. He had another good blood gas at 10:00 PM. His lungs are still sounding a littly raspy. Therefore, I am not feeling confident or secure yet that he can tolerate the nasal cannula yet.

Before the surgery, Hunter's was at 41 cc's of full feeds and handling it well. They had to stop all feeds for the surgery. They started him on 5 cc's and he is not tolerating it too well. I hope we're not going back to his stomach issues. I'm a little freaked out about that. He is not having bowel movements and his stomach is not processing the tiny amount of 5 cc's. He is having full residuals when they pull back. In english: they put 5 cc's in. Three hours later, they pull back on the feeding tube. They get 5 cc's back. This means he is not digesting anything. I really hope it is just a surgery thing.

Hunter is still in the isolette and not ready for his crib yet. I am sure he misses his mobile, fishy toy, and musical box.

His blood cultures are still coming back as negative for infection. They still have him on two different type of antibiotics. This is a precautionary measure.
They took his bandage off today. We saw where the incision is at. It is still taped up. Gosh, it eats me alive how much suffering he has been through. He is so courageous. I never knew someone could have as much inner strength like these preemies. He amazes me. He has had such a rocky road. I thank God everday that he is here. I am so blessed to have him. He is so precious.

They plan to do another x-ray in the morning. They will also do another blood gas to see how he is tolerating the nasal cannula.

The nurses and doctors are taking such great care of him. They are a wonderful group of people. They really care about Hunter and that makes a huge difference. They are also being extremely patient with me and my million questions. It can't be easy to deal with me; the over sensitive, worry wart mom.

Thank you for your prayers. Thank you for your support. Please continue to pray that Hunter progresses back to his baseline before surgery, that his body heals, begins to tolerate his feed again, for his lungs, and he his home with his family soon.

103 days and counting

Things have been a little crazy. When I'm not in the NICU, I am trying to sleep, eat, or breathe for that matter.

The night of his surgery, he had a difficult time with getting his blood pressure to a stable level. It was too low. He was not putting out good urine, and was swelling. They had him on two different blood pressure medications. It was still not raising his blood pressure. They started him on steroids. The mixture of all of the medications seemed to do the trick. Friday morning, his blood pressure was a lot better. It has stayed at a good level since.

Friday was another rough night. His oxygen levels were dropping very low. His heart rate would drop really low as well. I was really upset and wouldn't watch the monitors. Tim said he saw Hunter's heart rate drop into the teens. The poor nurse and respiratory therapist really had to work hard. They managed to stay on their toes. Hunter needed the neopuff a couple times.

Gosh, both nights scared the crap out of me.

They started Hunter on antibiotics this morning. Hunter's blood pressure is still very good. They have not started to feed him yet. He is still on the vent. He seems more active than he has been. He is not back to his baseline, by far yet. He still has a lot of fluid on his lungs. From my understanding, this is partly due to the PDA and from the water retention after his surgery. He is not destating or having brady's (dropping his oxygen and heart rate) as much as he was the night before. In fact, he hasn't had a major episode since around noon today. We are really hoping that tomorrow is a new day with improvements around the corner.

I miss holding him, kissing him, and seeing his cute little facial reactions to everything. I miss him so much right now. It feels like someone has punched me really hard in the stomach, twisted my insides and ripping them out piece by piece. It is so hard to see your child this sick. St. Joe's have been miracle workers. And, God has played a major part in all of this.

Thank you all for your support and prayers. Each prayer counts! God performs miracles every day. Thank you all for caring so much.

The Aftermath

Hunter is having a lot of problems. After his surgery his blood pressure has been extremely low. It is so low that he has lost his urine output and swelling really bad. They have him on the maximum dosage amount of two different medications to raise his blood pressure. This wasn't working. In addition to the blood pressure medication they started him on an additional steroid medication. We are hoping that this works. He is still on the vent. His color is very pale and poor. This is because the blood doesn't have enough pressure to put to the extremities. I don't want to sound negative. I am just stating the truth right now. I miss him already and his spunky personality. He is so out of it right now.

The PDA Litigation Surgery

They have chairs that you can sit in in the NICU. The NICU has recliners and pretty comfortable. After the surgery, they had the neonatalogist, a pediatrician, a nurse, and a respiratory therapist at his bedside. They were trying to put an arterial line in Hunter. This is a tube that goes directly into an artery, not a vein like an IV. It gives constant blood pressure readings, and accurate blood gases (the level of exchange between the oxygen and carbon dioxide in your blood) I am scared of needles, so I had to sit down. I looked at the entire picture. Hunter - back on a respirator, people surrounding his bedside, and trying to control his vitals. They were all working together to get Hunter to a stable place. It occured it me. It is a picture in my nightmares. Or, like Deja Vu. It was exactly what I see when I close my eyes at night. It is the same picture that has traumatized me from his earlier days. It was like the beginning all over again. But, were not in the beginning. We are 101 days into it and my emotions are completely pooped out. He was supposed to be going home, not back in surgery again! So, for right now, things seem so impossible or far out.

On the flipside, it was exactly what Hunter needed to keep progressing. Thankfully, they found out what the problem is. Hopefully after this downfall, this hurdle, we can move forward. Hopefully, this will make feeding and breathing easier for him.
Hunter went into surgery at 7:30 AM. Hunter came out of surgery at 10:00 AM. They have been right all along. The preparation took a long time. The surgery took longer than we expected, but the surgery went well. We got into the NICU at 5:00 AM. The preparation had already started. The transporter was warming up. Hunter had wires coming from everywhere. He was being hooked to the vent and slowly falling asleep because of the medication they gave him. Before he fell asleep, I got to give him a kiss. I found a spot on his face despite all the wires and tubes. He looked up at me. It could of been my own emotions talking. But, if I could explain his look - he looked confused or scared. I reassured him that I was here, not to be scared, that I love him and would not leave until I knew he was okay. He feel asleep shortly after and has been sleeping all day.

The experts said its not the surgery that we had to worry about. It's the aftermath.
So, here we are in the aftermath. Hunter is having a hard time with his blood pressure. They warned us that this is what they would worry about after surgery and here we are. He has an awful color and to be honest, I'm scared. The medication they give him to control his blood pressure raises his heart rate. Now, they are trying to get to a stable ground - stable heart rate, higher blood pressure. We are in the heart of the storm right now.

As I have already learned, I turn my faith to God. I pray. I fight alongside the bed with Hunter. He is more courageous than I could ever dream of being. He is my hero. I thank God for every second, minute, day, that I have with him.
Thank you for your support and prayers. Thank you for all that has been there for us, helped us, called us, prayed for us, and thought about us. We are in the heart of a storm right now. My motto is: Don't tell God how big your storm is; tell the storm how big your God is

Tuesday, July 8, 2008

What a day this has been! The day started out as it normally does. I wake up and call into the hospital. I knew that the lung specialist was coming in to see Hunter again today. When I called in, the lung specialist was already here.

From what I hear from the nurses, the lung specialist heard something that wasn't quite right in Hunter's chest. He ordered an x-ray. When the x-ray came back, things definetly weren't right. They ordered an echogram. This is for the heart. They found what appears to be an open PDA. It is a valve in the heart that is supposed to close off after birth. When it is open, it pumps to much blood into the lungs.
Hunter had this in the first 3 days of his life. At that time, they gave him medication, did echograms, and his PDA was close. We'll, it reopened. This time, it leaves no other alternative but heart surgery for Hunter. Gestationally speaking, Hunter is too far along for medication and the PDA is too large for medication. It is really common in premature infants to have a PDA, but usually it is fixed earlier in their life. It makes for complications that Hunter is bigger now.

I have been at the hospital since this morning. The surgery will be Thursday morning. We have been loving on Hunter and will continue to do so. Hunter's heart surgeon will be coming from Children's Hospital in Detroit.

They have not been able to wean Hunter from his oxygen and air flow. This PDA is the culprit. It is pumping to much blood flow into Hunter's lungs and drowning him. This would also be the main reason that Hunter is having such a hard time breathing while feeding. He doesn't have the lung capacity for it. It's nice to know what the problem is, so we can fix it. But, heart surgery is scary.

I have not stopped praying. I know that everyone out there has been so supportive. Please continue to pray for Baby Hunter. "With God, All Things Are Possible"
We need to pray that he makes it through the surgery. The surgery does have complication risks, such as infection, difficult controlling his blood pressure, etc.

After the PDA is fixed, Hunter shouldn't have any other complications in regards to his heart. 99 days and counting....my heart goes out to all struggling with their micro preemies: past, present, and future.

Monday, July 7, 2008

Hunter had his head ultrasound today. It was unchanged from a month ago. This means that we are free and clear from a condition called PVL. PVL is serious. It would increase his chances for cerebral palsy, learning developmental delays, and so forth. It basically turns the brain into swiss cheese. These little guys are at an increased risk of developing it. I was ecstatic to say the least that he is free and clear. It was one thing we could check off of the list of things to worry about.
Physical Therapy came up today. They tried a new type of nipple on Hunter today. It is a silicone nipple. It is harder than the normal nipple. But, it worked. It forced him to pace himself. He was able to consume 21 out of 41 cc's today. Then, he got tuckered out.

I got to feed him for the first time at 8 PM. He was able to consume 12 out of 41 cc's. He did really well for me. His oxygen dropped a couple times. I think he had one or two heart rate dips (brady's). He got pooped out after 20 minutes or so. We pulled back and fed it through the tube.

There hasn't been any real change in his oxygen and air flow settings. He is sitting at 2 liters of air flow. He needs to come down to 1/4 liters of air flow before he can come home. He is at 40% oxygen. Oxygen won't matter when he comes home. It will be set at one setting: 100%. For right now, he needs to come down on oxygen for them to wean the air flow. It correlates to one another.

Sunday, July 6, 2008

For starters, our friend Troy had surgery to fix his bowel. His surgery went well. We are praying that infection will not set in and hope to be reunited with the entire family soon.

It was bath night for Hunter. He is weighing in at 4 pounds 13 ounces. He is 17 inches long.

We are still working on the feeding with Hunter. Feeding is a lot of work for these micro preemies. They have to coordinate so much at one time. Their lungs have to work a little harder and baby Hunter's lungs are working just as hard as they can.
The doctors readjusted his diuretics. They continue to increase his dosage. They have to be careful do it over a period of time. It could throw off his electrolytes if they aren't careful. They hope to see more fluid come off his lungs, making it easier for him to breath, which should help him with his feeds. We hope to see an improvement over the next couple of days. His main goals are still feeding. This is a huge hurdle for him. His lungs still need some work. Today he was able to consume 21 cc's of formula at 8 AM without an event. He is eating 40 cc's through his feeding tube. They tried again today at 5PM. He only got 5 CC's, had a hard time, his heart rate kept dropping (aka brady's) and dropping his oxygen levels (aka destats).

Hunter is getting another head ultrasound tomorrow. Hopefully, it will be his last. We will be praying for good test results from that.

Saturday, July 5, 2008

I wanted to take this opportunity to write a special journal entry. You know how the saying goes; you don't know what you've got till it’s gone. Or, is that a song from the 80's?

We'll regardless; I met a really nice couple in the NICU. Over the course of a couple months, we became friends and a great support to one another. Her son was born at 26 weeks gestation. We were each other's cheerleaders, rooting for each other’s families and micro preemies to make it through another day. I went to visit Hunter. When I walked past the bed of where her baby was, he was gone. The bed was empty, the monitors were off. Where did her baby go? My heart immediately sank. I knew he was having stomach issues, but I didn't realize the severity to it. The hospital could not tell me anything because of the HIPAA laws. So, as humans, we fear the worse.

I cried all the way home from the hospital and cried myself to sleep that night. This time it wasn't for Hunter, but for Troy; a baby that means so much to me and for this family, who have had such an impact on me and a part of my heart. It wasn't until today, that I heard he was transferred to another hospital. I breathed a sigh of relief that it wasn't the worst case that I initially imagined. But, gosh....it’s not good. It's a huge set back to a baby that was doing fantastic. It is a huge set back to a family that has high hopes. I can't begin to imagine what they are feeling, but I can say that I understand. This road is a long one filled with a bunch of unknowns. I never knew the true meaning of uncertainty until now.
It's another one of life's lessons that I have learned. It is taking one day at a time. At the end of the day, when you have the people in your life that means the world to you, you can consider it a good day.

I left a message for Troy's mom today. I tried really hard not to cry, but I couldn't help myself. I love this family. When I visit my son at St. Joes, I miss not knowing that they won't be at St. Joe's. As I resort to the beginning of this journal entry, I took for granted that Joy, Dave, Ronnie and Troy would be there every day that I went to see my son. I took for granted that I would always be able to exchange our kind words of support to one another. She doesn't know, but there were many days that she pulled me through. She helped me with a simple hug or with words of encouragement and I miss her.

I am saying an extra prayer tonight for Troy. I am still Troy's cheerleader. I am still rooting for him. I am still rooting for his family. For Dave and Joy, they’re special people in this world sent straight from Heaven. Angels! I will be praying for you. I can't wait to see you guys again.

Friday, July 4, 2008

Gosh, I realized that I haven't written in a couple days. Now, I am trying to think back to what has happened. They had to increase Hunter's diuretics. He was having more episodes. He would drop his oxygen levels and required more oxygen. I asked the doctor if she felt like it was a setback. She did not feel like it was a setback, but more like a tune up. As his weight is increasing, he needs higher dosing of medication, including his diuretics.

Speaking of weight, Hunter is up to 4 pounds 11 ounces. What a big boy!
Hunter was doing well with feeding through a bottle. He has been having difficulty the last couple days. As I have to remind myself, two steps forward, one step back. They still try the bottle twice a day. If he drops his heart rate or oxygen levels, then back to the feeding tube it goes.

I am having a hard time with patience right now. Hunter has been in the NICU for 95 days. I have such a hard time leaving him and a hard time being apart from him. Sometimes he is awake when I have to go home. It hurts so bad to walk away. I really have to stay focused. He is here! That is what's important. This is so hard. I always thought that whatever I was faced with I could handle. This situation is different. I have to take it day by day. I, often, have to be reminded that I need to take it day by day. As my due date approaches, I find it getter harder. A part of me expected him home by his due date. I should've known. The entire time the doctors told me not to expect it. His lungs are his trouble. July seemed so far out...It is here before we knew it. The road seems so long.

Tuesday, July 1, 2008

Today marks Hunter's three month birthday. He has also been in the hospital for 92 days today. We hope he will be home soon. But, he is just not quite there yet. The doctors orders are written that the nurses can only feed him twice a day. This can be very exhausting for him and they don't want to wear him out. Hunter did good for one of his feeding. The other one he had some destats. He is learning and I am so proud of him. Oh, 4 pounds 5 ounces and gaining...