Marcus Update #20

Hello again. Well... we had an unexpected hospital stay this last week. Here's the story... Marcus caught a cold from Aliyah on Monday and was handling it very well until Wednesday night, when he started breathing really fast and his heart rate was around 170 even at rest. So we called the nurse, and the pulmonologist, and ended up taking Marcus to the ER here in town at about 11 pm. They kept us for a few hours and did tests (flu, RSV, Pneumonia -chest x-ray, blood work) and everything came back negative. His white blood cell count was a little high though and he had a fever by this time. His breathing was still really fast, and his heart rate was also still fast. So at 2:30 am we climbed into an ambulance and took a ride to Phoenix Childrens Hospital.

We arrived at 4 am, and went through the same tests in their ER. Then Marcus was admitted to their PICU. They did their stuff and we got to sleep around 6:30 am. Not much sleep obviously. The pulmonologist saw Marcus a couple of times and I asked many questions. Anyways... we came home yesterday (Friday) evening, so weren't in very long at all. Here is an explanation of what is going on with Marcus's health right now...

The pulmonologist explained that he thinks that Marcus has scar tissue on his lung tissue, which is causing the blood to not be adequately oxygenated. he said this could be from having been born early, been on a ventilator, and having had pneumonia a few times. He said the tissue does regenerate, but he needs to stay healthy for a while. He also wants to have a CT scan done on Marcus's chest, and a swallow study done when he is healthy again. This cold he got seems to have turned into broncialitis this time. He is doing very well now. He is on quite a few more medications now to try to help his lungs.

So now I guess we need to be praying for Marcus's lung tissue to regenerate and be healthy. Please pray that he stays healthy through the winter. Thank you for your continued concern for and prayers for our son, Marcus. God bless you. Kim

Marcus update #19

Hi.. I wanted to let you all know how Marcus's heart cath. went on Monday and also explain to you the best I can what they found.

So.. the test itself went well with no complications. I was able to stay with him until he was asleep. It took about 3 1/2 hours. Marcus then was in the recovery room for another 3 hours.

They found that Marcus's heart is doing well and is not causing his oxygen need. A lot of head scratching and a lot of tests went on. "Nope that's not it, hmm what could it be? Let's try this test." What they think is causing the oxygen need, and the recent increase in his need, is his lungs. There seems to be a problem with the exchange between his capillaries and his lung tissue. Basically what I understand is that his blood is not being properly oxygenated on it's trip to his lungs.

What's next? We have an appointment with the pulmonologist on October 26th at Phoenix Childrens Hospital to discuss this further. The cardiologist group is going to discuss Marcus's condition at their meeting this month, and we will be following up with his cardiologist soon too (no appointment scheduled yet).

I will continue to keep you informed about what is going on with Marcus. I'll try to add more pictures next time. Marcus is doing well, getting stronger, and growing - he is almost 16 lbs now. He is fighting off colds better each time - he had one a few weeks ago, and it was really not a big deal this time. No breathing treatments, no pneumonia, no hospital.

Thanks for your prayers. We appreciate them very much.

Marcus Update #18

Well... Marcus has his heart catheterization scheduled for October 5th. This test is to try to determine why he still needs oxygen. They will have to put Marcus to sleep for this test. They will put the catheter into his femoral artery, and will pass it all the way up into and through his heart into his pulmonary artery. There they will check the pressure. This is about all I know about it. Marcus will need to be in the hospital overnight. The test will be done at Phoenix Childrens Hospital. We appreciate your continued prayers for Marcus. Thank you.

Marcus update #17

Hello again. Sorry it's been soo long again. Things have been kind of crazy this last month with Marcus. We've had a couple of echo's, some blood work, some chest x-rays, 2 trips to the ER, and one weekend stay in Phoenix Childrens Hospital.

There is still no word on why the pericardial effusion came back. It has gotten smaller, but Marcus is still on the lasik (medicine). We are also now dealing with another mystery, which was the reason for his recent hospitalization. He has an increased need for oxygen. We are mainly working with the cardiologist on both of these issues. We have not had the heart cath. yet, but when I spoke to the doctor on friday, he sounded like we would be moving forward with that soon. That may give us an answer to the oxygen question. I think that we were all hoping that the effusion would be resolved first, but that doesn't seem to be happening yet.

I know that this isn't much information, but I just wanted to let you know what was happening. Marcus is doing well otherwise. He is healthy and happy and growing just like he should be. He weighs about 14 pounds now. I will update again as soon as I get some more information. Thanks again for your prayers.

Marcus update #16

Hi. We had the echocardiogram that I mentioned in the last update today, and spoke to the cardiologist. They are pretty definite now that the VSD is closed. They are also pretty definite that the ASD will not close without surgery. There is not a rush on this and we will probably do it sometime next year - maybe in the spring. There is also some mitral valve thing(that's a medical term, I think :) ), that they are going to fix at the same time. This surgery involves opening up his chest and stopping his heart. They said that if it all goes well he would probably be in the hospital for about a week.

I have to admit that my heart kind of sinks when I think about this. I wish that my baby didn't have to go through all of this. And I guess I wish that I didn't have to either. I know that the Lord is using this child in many ways in my life, as well as in the lives of my husband and children, and even those of our friends and family.

The fluid around his heart is still there. The blood work showed normal thyroid function, so it is still a mystery, why the fluid returned. The doctor prescribed some medicines to try this week, and wants to see another echocardiogram next week. We will be able to have that done at the hospital here though this time. He will know by then if the medicine is helping or not.

The doctor also wants to do a heart cathetorization soon to check the internal pressure in the pulmonary artery and try to find out why Marcus still needs oxygen. This test involves incerting a probe thing(another medical term) in his femural artery (at the top of his leg) and making it go up through his heart into his pulmonary artery. He would obviously have to be asleep - anesthetized - for this procedure. He sounded like he wanted to do that soon - within the next few weeks. This would be done at Phoenix Childrens Hospital.

I think that's it.

Thanks for your prayers for Marcus. We greatly appreciate them. We also appreciate people letting us know that they are praying for Marcus. It is very encouraging. Please also let us know if there is ever anything that we can do for you, or anything that we can pray for for you.

Remember...

God is great and prayer is powerful!

Marcue update #15

Hi. It's really late but I really wanted to get this out so people could start praying for Marcus in force again.

The cardiologist found fluid around Marcus's heart again today (Pericardial Effusion). He had it when he was born and had to have a needle stuck in his chest after birth to have it removed so his heart could function. It was not there in March, but is there now. He is not sure why. He has ordered a repeat echocardiogram for the end of next week down at Phoenix Childrens Hospital, and there is a chance that they may have to try to remove the fluid again.

He has also ordered some lab work to try to find out what has caused the fluid to return. One thing he is checking is Marcus's thyroid. I tried to have the labs done today, but they couldn't get it. They tried for over an hour, 3 different people tried. They stuck him 3 times and got nothing. It was a long day.

And there was a bit of good news - Marcus's VSD(Ventrical Septal Defect - hole between the lower cambers of the heart) looks like it is totally closed. His ASD(Atrial Septal Defect - hole between the upper cambers of the heart) however is still really open. If this doesn't close soon Marcus will have to have open heart surgery to repair it. That is obviously something that I would rather not do if possible.

I will be at Phoenix Childrens Hospital with Marcus tomorrow afternoon at the appointments I told you about in the last update, so I hope to get the lab work done while there tomorrow. They have a lot more experience drawing blood from babies - I know it from experience. They are great!

I will update you when I know more. For now please pray for Marcus. This is pretty serious. He is otherwise very healthy right now, and very happy. He is about 12 3/4 lbs. and about 25 in. long now.

Thanks. Kim

Marcus #14

Hello. Just wanted to let you all know how Marcus is doing. He is doing well now. He did get a mild case of pneumonia again at the end of June. He did not have to be hospitalized this time.

He is up to about 12 1/2 lbs. He is still on oxygen all the time, and the apnea monitor at night (monitors his heart rate and breathing). He is the happiest baby! He is truly a blessing and a joy in our family.

He has come a long way. He has appointments with a few specialists this week. His cardiologist on Wednesday up here in Prescott, and then in Phoenix on Thursday he has appointments with his Neurologist and his Pulmonologist at the Phoenix Children's Hospital. I anticipate all good news.

Please continue to pray that the holes in Marcus's heart will close by God's hand rather than by the doctor's. I really don't want him to have to have open heart surgery. It scares me, to be quite honest. I trust completely in the Lord and know that either way He chooses will be for my good and for His glory. So maybe you could pray for me too. That I will have peace, that my faith will be strong and that I will not fear if he has to have the surgery.

Thank you. I'll update again soon.

Kim

Marcus update #13

Hello. Sorry... again... for taking soo long to update this. I still don't have email access at home. Marcus is home from the hospital. He came home June 1st. He is doing very well. In fact we took him on his first camping trip last weekend. He has some followup appointments in Phoenix this week - Pulmonology and Gastrointerology. Thanks for your prayers for us. God bless. Kim

Update #12

Hi... Sorry it's been soo long since I've sent out an update. Things were going very well. They are still going pretty good, but I am sitting in a hospital room again with Marcus as I type this. He has pneumonia again. He is older, bigger and stronger this time - 10 pounds 5 ounces now. It is not as bad this time and we are in the hospital in Prescott. He was admitted yesterday and will probably only have to be here for a few days. We would still appreciate your prayers for him and for our family.

We are doing pretty well. The Lord is good and faithful to keep His promises. Isn't it comforting to know that He loves us and cares for us? This life, in this world is so full of trouble and pain - no one is immune, it comes to everyone. I don't know about you, but I know I need a crutch. I'd never have made it this far without God. John 16:33 - "These things I have spoken to you, that in Me you may have peace. In this world you will have trouble, but be of good cheer, I have overcome the world." John 14:27 "Peace I Leave with you. My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid." I could not have peace without Him.

Thank you for your prayers for us. I will try to get some pictures on here again soon. Marcus has grown and changed so much. Thank you again.

Philippians 4: 4-7 "Rejoice in the Lord always. Again I will say, rejoice! Let your gentleness be known to all men. The Lord is at hand. Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus."

Bathe your mind in scripture and rest peacefully in Him.

Kim

Marcus update #11

Hello. Marcus saw the pulmonologist and nutritionist on the 19th. Then he saw his pediatrician on Monday the 23rd, and the cardiologist on Wednesday the 25th.

He is doing well. He wasn't gaining weight though, so the nutritionist said we needed to start fortifying my milk every other feeding. So he has been getting bottle fed every other feeding to give him more calories. I guess breast milk is 20 calories per ounce, and they are having my mix the bottle to 27 calories per ounce. He weighed 7 lb. 4 oz. on the 19th. He weighed 7 lbs. 12 oz. on the 23rd. So I guess that it is working.

He had an echo cardiogram on the 25th. It looks like the VSD may be closing some, but the cardiologist hadn't looked at the previous echos and needs to review the records. He said that if Marcus needs surgery it won't need to happen soon. He can wait until he's at least a year old. Keep praying. Maybe he won't have to have surgery at all.

Thanks for your continued prayers for our family and for Marcus. We appreciate you very much.

Marcus update #10

Hello again. Things with Marcus are going very well. Praise God. He is still home and still healthy. We even went to the Phoenix Zoo a couple of weeks ago.

Marcus is down to .1 on his oxygen and doing well. He has some follow-up doctor appointments coming up soon. He will have an echo cardiogram on the 25th here in Prescott. Hopefully we will see that the holes in Marcus's heart are getting smaller. I will try to let you know soon after the appointment.

He is scheduled with Pulmonology next Thursday in Phoenix. Marcus will have to have an MRI next month - April 23rd - and follow up with Neurology. For this he will have to be under general anesthesia.

Marcus is doing well but isn't gaining much weight even though he is eating well. So we started supplementing him a bit again with a bottle a few days ago. We will see if this is enough.

Please pray for Marcus that the holes will close in his heart, that he will stay healthy, that he won't need the oxygen soon, and that he will start gaining weight.

Thank you again for your prayers for our son and our family. We really appreciate it. God bless you all.

Marcus update #9

Hello again. For those of you sho don't know yet... Marcus is home again! He came home February 13th, so he's been home for a little over a week. He is doing well. Thanks for your prayers.

Marcus weighs about 7lbs. 7 oz. now. He is nursing full time - since Thursday morning when he pulled his feeding tube out. I will put it back if necessary, but he is nursing so well that it is not necessary now.

Please continue to pray that the Lord will close the holes in his heart soon, without surgery. Also, pray that God will protect Marcus from sickness. Even little things for us are major for him right now, and we don't want him to be sick in the hospital again.

The rest of our kids are healthy and doing well. Please continue to pray for more hours at work for Chris, or for a different job.

We still don't have internet at home, so please be patient with me if you email. God bless.

Kim

Marcus update #8

Hello. I am sorry that it has been so long since my last update. Much has happened. We do not currently have internet access at home, and have been very busy.

So... in my last update I told you that Marcus was coming home on Sunday, January 18th. He did. He was home for about 9 days. We had a really good week with him, it was great to have him home.

On Monday, Jan. 26th, when the home nurse was examining him, we noticed that his chest was retracting when he was breathing. He still seemed ok though. Later that night he was breathing really fast and labored. We didn't get much sleep that night, and took him to the doctor Tuesday morning. She sent us for a chest x-ray which revealed that his left lung was either collapsed or full of fluid. I looked at the x-ray, and couldn't see the left lung at all, it was just white. They told us that this was either an indication of pneumonia or heart failure.

They proceeded to send Marcus and I to Phoenix Childrens Hospital by ambulance Tuesday afternoon. They admitted him back to the NICU (Neonatal Intensive Care Unit). So he is being cared for by the same doctors and nurses that cared for him before he came home. I stayed with him until Thursday when Chris and the kids came and picked me up. Side note... I had to take Aliyah to the doctor right after we got home because she has an ear infection (so please pray for her too).

He had an echocardiogram and his heart function looked ok. They were calling it pneumonia although he wasn't really as sick as they would've expected his to be if he had it. So they were also looking at other reasons why his lung would look that way and he would be laboring to breath.

He looked a lot more comfortable and seemed to be breathing easier yesterday before I left, but today he was doing worse. They called us today to talk to us about what was going on and to get permission to do a medical procedure. I believe it was called a broncioscopy (or something like that). They did it at 3 today and it went well. Basically what they did was put a fiberoptic scope down through his nose to his lungs. They did have to put him to sleep for the proceedure. They got a sample of whatever is down there. They should have the results in a few days. They said that he seemed to be a bit better after the proceedure.

My dad visited him today after they were done, and he said that Marcus looked better, and that the nurse said that he seemed better than he had been this morning.

Today they also found that Marcus has a urniary tract infection. So they put him on antibiotics for that today.

I am having a difficult time not being able to be there constantly right now. It is Mikaila'a birthday on Sunday, February 1st, and I need to prepare for that. And it was my birthday today - I turned 40! Also Aliyah is really having a difficult time with mommy being gone so much. She is too young to understand what is going on and why I have been gone a lot. It really doesn't help when she doesn't feel good either.

So, please pray for Marcus. Pray for his left lung to open back up, or clear up, or whatever it needs to do in order to function properly again. Also pray that his urinary tract infection will clear up. Pray that he will be healthy.

Also, pray for our family. Our kids were all very upset when Marcus had to go back to the hospital. Pray for Chris as he is also having a difficult time. Pray that he will find more work, that his back will feel better (he's had back issues for many years), and that he will be able to really trust God with Marcus's life (me too on that one). We've both been on a bit of an emotional roller coaster through all of this. We have strong, good days, and weak, tearful days.

We truly believe that God is in control. Thank you for your prayers. I will try to get back online and put on another update next weekend. Thanks again and God bless you. Kim

Marcus update #7

Hello. Sorry it's been so long since my last update. We've been pretty busy. I think I was home for 1 day last week. I thought that I would put an early picture of Marcus on the blog this time to show how much better he is doing and how amazing our God is. He was doing and looking so much better by the time I started the blog that I figured that many of you have not seen an early picture of him. God has been at work healing Marcus. He's not done yet, but Marcus has certainly come a long way from where he started December 1st at 12:13 am.

The plan is for Marcus to come home tomorrow, Sunday Jan. 18th. He is doing very well. His platelets are up to 121, and his direct billirueben is down to an acceptable level. He will be coming home on oxygen, being fed through an NG tube (tube that goes down through his nose and into his stomach), and with an apnea monitor. So last week I had to take a few classes at the hospital and learn how to take care of Marcus at home.

I learned how to put in his feeding tube and care for it properly. I learned how to operate the apnea monitor and hook it up to Marcus. I took a refresher infant CPR course. And learned how to use the feeding pump. Marcus will be fed every 3 hours during the day and then will be on a constant feed for 8 - 10 hours during the night.

I'm sure it will be an adventure having him home. We are very excited for his homecoming. Kira and Aliyah are sick with coughs and runny noses, so please pray that they will get better quickly and that Marcus will not get sick.

Thank you all for you continued prayers for our family and for Marcus. He still has a few issues and could still use your prayers. His liver is still enlarged some and his direct billirueben still needs to come down some more. He still has 2 holes in his heart and a little fluid around his it. He still needs oxygen. And there is something about an area of his brain possibly not being fully milonated - I'm not sure exactly what that means yet, but am told that a neurologist will be looking at it further and that Marcus will probably need to have another MRI of his brain in a few weeks.

We appreciate you and your prayers and encouragement very much. God is good, and what He is doing with Marcus is all for His glory as well as for our good and our growth in Him. In this life we will have trouble and hard times, but take heart God has overcome the world and is always there for us to help us through whatever we must go through in this life. I don't know how people make it through life without Him.

Thank you.

Marcus update #6

Hello again. Sorry it's been a while since I've posted an update. I just got back from spending a couple of days in Phoenix with Marcus. I stayed at the Ronald MacDonald House - it was pretty nice. Anyways...

Marcus is doing better and better again. He was up to 5 lbs. 4 oz. yesterday. I gave him a tub bath and a massage, and enjoyed being with him all day. His color is really good. His platelets are going back up and were at 62 yesterday.

They never figured out what caused the blood in his stool last week, and they probably never will, but that's ok. So, his billirueben is down - good - his platelets are going up - good - and his feedings are going well and increasing - good. He still doesn't eat from a bottle or nurse well, and you can pray that he will learn, but he can come home even if we have to tube feed him.

So basically continue to pray that Marcus will grow stronger and healthier each day. Our family is doing better. Please pray that we will stay healthy now so that when Marcus is ready to come home, he comes home to a healthy environment.

Thank you for your prayers. Hopefully the next time I send an update I'll have a date for Marcus's homecoming. Praise God for how He is answering our prayers and yours as well.

Marcus update #5

Just a quick update tonight. Marcus is bouncing back quickly from whatever made him sick on Tuesday. Chris and I went to see him yesterday and he looked pretty good. Today they started feeding him again. They are trying something different with him feeding now. They are giving him breast milk pretty constantly and slowly. They are giving him 3 mls every hour. It seems to be going fine so far.

He will need to work back up to full feedings and be off of the IV suppliment again before they think about letting him come home.

His platelet count is improving again. That also needs to be stable before he can come home.

Thanks for praying for our family's health too. It seems like the flu is gone. Mikaila has had a cough and headache today though and I just took her temperature before bed and she has a fever of 102. I really hope that this is isolated and not the start of something else. Please pray that she feels better soon and that no one else gets sick. Marcus can't come home to a sick house either.

Hey... another answer to prayer... We got a dryer through freecycle today. Yeah!!

Thanks for your prayers. God is working miracles.

Kim